>Joy Of Food….

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We desperately want to address Maya’s feeding issues and low (nonexistent) weight gain. Maya is in the extreme lowest percentile in weight for her age. Her height though on the low side, however is not a worry for us as she continues to grow in height. Maya is 5y1m, Yasmin is 3y8m. Both are the same weight, that’s just not right is it? Neither girls put on weight for about 8 months each, at different times. Recently, they put on 1kg each, after 6 months of absolutely no weight gain. And the 1kg gain took another 6 months as they would lose the weight again and again after each bout of illness. I don’t even dare look at the weight and growth charts anymore, Maya has always been on the lowest percentile in weight ever since she was 6 months old. Though you wouldn’t have known it, Maya weighed 3.5kg when she was born, a very good weight indeed. Yasmin was a whopping 3.75kg at birth. But now both girls hover between 13.5-14kg for the past 6 months.

There are days when Maya absolutely refuses to eat, we are lucky to get her to eat 3 tablespoons of food the entire day. On rare occasions, Maya has a good appetite and though she still would not spoon the food herself, at least she doesn’t fight us when we feed her. Generally, mealtimes are incredibly stressful and frustrating. The photo above is one of those rare times where the girls are happy to not only eat, but also feed themselves. Though that’s mainly because their beloved cousin Abang Imron is there to eat with them. We found that having a friend or cousin to dine with helps to encourage them to eat along. Though during those occasions we usually run out of food, as I am so used to cooking small portions for the girls’ small appetites, other people’s kids usually eat a lot more. But I always happy to have the girls’ little friends over, we love having them come over to play and eat with the girls.

I am thankful everyday that we are one of the few lucky ones in the Autism world to have recovered our daughter. The ABA therapy, GFCF diet and tons of supplements have brought us to this point where Maya is in a mainstream school, with lots of friends and activities and no longer requiring additional support or therapies. To most people, they see a typical 5 year old girl and our life is a vast difference compared to even a year ago. However, her feeding issue is still something we struggle with everyday. I won’t even go into the GI disorders, food intolerance, metabolic and mitochondrial issues that each girl presents. We desperately want our girls to be healthy, but how can they be healthy if they can’t eat?

Apart from continually trying to address their myriad of health issues, we’ve tried the method of “let her starve, if she’s hungry enough she will eat”, that failed spectacularly. We try to do family mealtimes, we tried sitting in front of the tv or lots of toys or arts and crafts projects in the hopes that they are distracted enough and will sit long enough that we can spoon some food into them. This has worked the best for us. We often do the chasing around the house with a spoon, that worked for a while though it would take us 1 hour to feed her. By the way, Yasmin is the same. We too struggle with feeding her, though her weight is acceptable and she’s not skinny like Maya. However, obviously her metabolism is different to her sister. Yasmin was an extremely good eater ever since we weaned her onto solids at 6 months. The difference between her and Maya was amazing, Maya who has always hated to eat since the beginning. However, Yasmin lost her appetite and refused to eat after her bout with Rotavirus infection. She also started to present many Autistic features and had many behavioural and developmental issues. But that’s another story. The infection impacted her gastrointestinal system is myriad ways. Till now, Yasmin is a poor eater though marginally better than Maya at times.

At school, Maya would eat a bit though a couple of times she has gotten agitated and even got a bit teary when the teachers insisted she finishes her food. When I questioned Maya, she said that she didn’t want to eat the big plate of food. I asked the teacher about it, they said that she was given the same amount of food as all her other classmates. They insist in a very kind manner that the kids finish their meals, though majority of the kids don’t need to be reminded and many request for 2nd helpings. The teacher and I worked out that Maya should be given a much smaller portion so as not to overwhelm her. And though the teachers should gently encourage her to eat, it shouldn’t get to the point where Maya would get over anxious and stressed out.

Remember, this is a girl who is well-behaved, compliant, attentive and friendly at school, a student who adores her teachers, has lots of friends, joins in every activity and has lots of fun in school. It is very clear to us that eating is a huge issue for Maya, even bigger than we initially thought. Though kudos to Maya, she sits at the table with her classmates every day, tucks her napkin in her collar, feeds herself albeit only a few bites and stays seated until everyone is done. She’ll happily tell me what she had for lunch, how much or how little she ate, which friend ate a lot, who liked to eat what etc. Most days, the teachers manage to encourage her to eat, though usually she only eats a very small portion. The only thing she adamantly refuses to eat in school is porridge. Also known as congee, a staple in most Malaysian kids diet. It’s Porridge Day once a week, so the school cook will kindly cook rice instead specially for her.  

Both girls are extremely poor eaters, I cannot emphasize enough how bad their feeding issue is. Most Autism kids I know are big eaters.Though I know a few kids with really severe feeding issues, much worse than Maya’s; it still doesn’t take away the monumental struggle we face every day feeding the girls.  And we struggle with this 3 times a day, every single day for the past 4.5 years…… They are extremely picky eaters, Maya will give a tentative lick of every food before hand. They are so picky that when at a birthday party, the girls were monumentally dismayed that the gorgeous birthday cake turned out to be a jelly cake. Made of agar-agar, in Malaysia is it common to buy these beautifully decorated cakes made of the firm jelly. And the kind mother of the birthday girl, quickly offered a 2nd cake she had in the fridge. We insisted she didn’t go to the trouble, as it was a brand new unopened cake presented as a special gift from a friend to them. I felt sorry for the mum because the girls spat the cake out immediately once they realised it was a carrot cake. We apologised profusely, but they were very kind friends and were extremely gracious about it.

Their appetite has improved quite a bit ever since we worked on some of their gastrointestinal issues. But even then, it is still a struggle. This is a long hard road till their gut is healed. Though we now live in the privileged Land of the Recovered, we do get reminded that we are recent arrivals and that we have to work hard to ensure that our Visa isn’t revoked. By maintaining the diet and supplements, we enjoy a lovely life with Maya. Maya no longer has Autism, for the moment I am certain she will not regress. However, we have been advised that puberty will bring an onslaught of other issues, however we will deal with it when the time comes,

We no longer enforce the GFCF diet as strictly as we used to do. After 2.5 years on a strict diet, we chose to loosen the reins now. At home, we still maintain the diet. However when we go out, the girls are allowed to eat gluten and casein, provided they
get a healthy dose of DPP-IV digestive enzymes. We usually take the girls out to eat at most twice a week. The girls would happily eat cakes, cookies, chocolate ice cream or their ultimate current favourite, croissants all day long if given a choice. Maybe, just maybe they’ll have a sandwich. But they are not interested in any other food at all. At home, we still struggle to feed them. I can’t count the many times we’ve had plates of food kicked out of our hands and pushed off the table, food scattered all over us, the furniture and the floor. Though now most times the girls have learnt to politely refuse the food rather than kicking at it. Progress comes in small steps indeed. By sheer hard work, tons of reinforcers and immense patience, between the nanny and I we still manage to feed them rice, many varieties of vegetables, chicken, fish and beef and a very limited range of other GFCF meals that the girls would tolerate.

But when we go out, the girls refuse to eat a proper meal. Even McDonalds’ cheeseburgers and fries or even pizza are pushed away! These are foods that most kids adore. How’s that for feeding disorder? We cook healthy delicious meals everyday, often we even cook 2 different meals as both girls have very distinct preferences on what they will eat. The only consensus is the Malaysian staple Chicken Rice, this is the only food that both girls will willingly eat, provided they feel like eating of course. And the only healthy food that Maya would willingly eat, even demand is avocados. She eats them straight or mashed with minced garlic and lemon juice ala guacamole. Avocados are an imported luxury food, it’s expensive and can be hard to find in Kuala Lumpur, but we are happy for the added expense of this nutrient-dense fruit in Maya’s diet. This was all due to Paul, how he got her to eat and like avocados still amazes me.

The girls very rarely want to eat proper food, though they can eat gluten loaded snacks like a champion anytime of the day. They are just not good eaters. It hurts Paul and I to the core when we see other kids tucking into their meals with gusto, even asking for 2nd and 3rd helpings. We marvel at those little kids’ voracious appetite, they eat everything and at times the parents can’t keep up with their demands for food. The many times we hear a parent say “My kid just won’t stop eating! He eats all the time!” And Paul and I always bite our tongue, though in our hearts, we are screaming “I wish our girls would eat!!”

When we go out to eat as a family, we usually eat in Asian restaurants or food courts. Someplace we can always order a rice dish or a chicken rice. If sufficiently motivated, we do get them to eat a small bowl each. The maximum we could get the girls to eat was half a chicken rice plate. Though usually a quarter is the norm. But eating in strange, new or interesting places is hard for the girls, they are too excited or too anxious to sit passively and eat or be fed. Though now, they are extremely well behaved when going out, getting them to eat in public is an immense challenge. However, this is a luxury for us, for the past 3 years we very rarely took the girls to eat out, or even go out in crowded places. It would have been too much of a nightmare. Most of the time, Paul would wolf down his food, while the nanny and I desperately try to keep the girls under control, then it was my turn to gobble up my food while Paul took over. Most of the time, I only got to eat half my food before we had to make a quick exit. How I still remained fat is still a mystery. And 99% of the time, the girls could never hang on long enough for the nanny to eat. We usually had to get take-away for her. Our long suffering, ever amazing nanny has learnt to eat as and when she can, because most days, neither she nor I get to eat lunch until 4pm. We always joke about some day we’ll buy her a lobster dinner…..  

When we go to people’s houses or private events, the girls refuse to eat. They may make a show of having a plate of rice and a piece of chicken in front of them, but it would remain untouched. At times, the girls would allow me to put plain white rice only, refusing to even have ANY thing else on the plate. But yet again, the rice would just be swished around the plate, not a single bite eaten. And if the host served Briyani rice, or any rice that is not white, it will be rejected outright. They won’t even go near roasts, pies, pastas, noodles, soups, casseroles and most other foods, Asian or Western. Most people when seeing the girls’ plate are usually horrified. Remarks like “Nasi putih saja??” i.e. “White rice only?” are common. I get looks of disbelief and derision, we can just hear them thinking no wonder the kids don’t eat because the mother doesn’t feed them anything etc. Most of the time, I just shrug, too tired to explain their feeding issues to people who don’t have a clue that there exist children who does not like to eat.

I could make a big show of heaping their plates with lots of protein and vegetables, just to show what a good mum I am.  Though I know all that precious food would just go to waste. In Asian culture, food is sacred and to waste food is sacrilege. I can even make a big fuss of feeding them, even though other kids their age are happily feeding themselves with gusto, not needing their parents to spoon-feed them.  I learn from experience to just let it be. To add a piece of vegetable on Yasmin’s plate in public would usually result in screaming tantrums. To insist that Maya have a spoonful of the delicious food that the host has cooked, “Just one bite darling, just taste a little bit, it’s really yummy, see your friends are eating it etc”, hasn’t helped. And it only gets worse, because people though well-meaning, starts to get in on the act, thinking that they can reason with a previously Autistic 5 year old. Though Maya has lost all her Autistic features, with her long history of chronic GI disorder, oral sensory issues, feeding disorder and anxiety with strangers amongst other things……Guys, you’re just making it worse. Just BACK OFF. You do not want to witness how shockingly violent and long drawn out reaction this can cause. It will be distressing to my kids, you and all your guests. I certainly do not want you to see this side of our life.

I have never ever expected for our hosts to provide a GFCF option for our kids, though many are kind enough to offer. And some are kind enough to make sure no forbidden desserts are served in case of temptation. That is incredibly thoughtful of you, but we would not hold your responsible for our dietary choices. We KNOW the girls can spot a cake or a cookie a mile away. We know that every time we step out of our home, there will be temptation everywhere. Though I do know some parents when invited to dinner at someone’s home, then act with indignation when there is no GFCF option for their child and demands that the host provide one now. Autism Biomed kids are either on the GFCF diet, some are also on a diet free from soy, egg, corn, sugar, additives, preservatives, MSG, artificial sweeteners and colouring. A few are on the Specific Carbohydrate Diet or the Low-Salicylates Diet. Duh, did you inform the hostess before hand of your child’s dietary requirements? Most hosts are gracious enough to oblige, though many don’t understand what the GFCF diet is and infractions usually occur. I certainly don’t expect my friends to know off-hand my kids’ diet du jour. How about be grateful people still invite you and your Autistic child to the party, so act like a mum and pack a meal from home. You cannot expect others to be responsible for YOUR child’s dietary needs, that’s your job.

We ALWAYS pack our own snacks. We usually feed them before we go out anyway. At times, I even pack a full meal complete with little bowls and cutlery just in case we could coax the girls to eat when we’re out. We are immensely grateful to be invited, especially by close friends and family who have seen first hand just how challenging our kids are. Most people never inv
ited us over again or even come over to our place after witnessing an ‘episode’. Though most of those episodes though shocking to those who do not live with Autism, were pretty mild in comparison.

When the girls are sick with the cold, flu or fever, which is often, their appetite really takes a dive. This is an especially hard time for us not just dealing with the illness, but trying to get them to eat. When we feed them at home, we also smuggle in supplements. We mix a bit of supplements into every mouthful. So when they are sick and lose their appetite, it usually is a precursor to a few days of non-compliance, tantrums and anxiety at home. When Maya misses a few days of supplements, some old behaviors will come back depending on which supplements she misses. Recently she was moody, refuses to wear clothes and grinds her teeth at night because she missed several days worth of 5HTP, TMG and calcium. Though Maya continues to behave well and act typical in school and when going out, at home she would fall apart. Most people don’t realize the heroic and almost violent effort it took Paul, me and the nanny to get Maya dressed and out the door every single day this week.

My kitchen is always fully stocked with organic vegetables and many varieties of fruits. I’m a creative cook, I constantly try many recipes and I make sure that there are always at least 2 meal choices on any given day. I even have back-up meals that I’ve cooked previously and keep in the freezer, ready to be defrosted in case of emergencies. Yet what do the girls do? They keep looking in the fridge and all the cabinets for “special snacks”. They beg, yes BEG for real bread, for cookies, for cakes and ice cream. It’s heartbreaking to see Maya moaning that she’s hungry, yet she would not eat the meals we offer her. She would rather starve herself and hold out for the gluten and chocolates that she craves. Visions of a a future anorexic Maya holds fear in my heart.

We do get the well-meaning lecture on how we should expand their repertoire of foods, that if they were offered more choices, more yummy cooking than mine, take them to a fruit shop and let them choose all the fruits they want and they will then want to eat the fruits, offers to cook their delicious vegetable soup that  they swear other picky kids absolutely loved etc. I’ve heard them all. And they all worked diddly squat. We have always agonized over the girls’ feeding issue, but the worry has grown in the past few months. Ironically it grew the more often we participated in activities that normal families do ie. go to parties, get invited out to weddings, kenduri, lunch, tea and dinner. Things that we couldn’t do in the past because of Autism. By being able to take the girls out often (something we are immensely grateful for) it has amplified their feeding issues. Having them sit side by side with another child who has a healthy appetite every single time we go out has magnified the severity of their feeding disorder. How ironic that the social life we dreamt of for so long would also bring a whole new heightened sense of worries.

Even in Autism land, majority of the kids I know are good eaters. They’ll eat anything and lots of it. There is even jealousy amongst Autism families, I for one am guilty of the envy I feel when I hear a friend’s Autistic child loves to eat. But in the whole scheme of things, I’ll gladly take normal, typical, recovered-from-Autism life with feeding issues compared to the isolated world of Autism, where Maya’s feeding issues were minuscule compared to the other debilitating features of Autism. In May, Dr James Partington, the renowed expert in ABA and Verbal Behavior Approach did an amazing presentation in Hong Kong and Singapore. I attended both conferences. He mentioned using food reinforcers during therapy, citing that this works very well because “What kid doesn’t like food?” Obviously he has never met my kids.

So yes, next time you see us in public and my girls either gorge on cakes or they eat nothing at all, please know that it hurts us to see our girls eating nothing yet your child eating healthy foods, even vegetables and fruits. We definitely don’t hate your guts for it, congratulations on a job well done. We are envious and a little be sad. Please understand that some children with chronic gastrointestinal disease and metabolic issues have severe feeding disorders. Be assured that we do feed them healthy food at home, they have been known to eat broccoli and spinach too.  But for now, eating will remain a private occasion for the girls. I don’t know how long it will take us to heal our children’s bodies, but we are doing all we can. We hope that one day, Maya will discover the joys of food and have a healthy attitude towards eating. So if you happen to see a harassed mum in the Pavillion food court desperately trying to shovel chicken rice into her 2 little girls, that’s probably me.

>The Milky Way….

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When we first started on the GFCF diet 2.5 years ago, the choice for rice milk in Kuala Lumpur was extremely limited. We could only find Pacific Rice Milk, and only in certain expatriate supermarkets. The price at RM10.90 per 1 litre box was very high, at that time Maya drank more than 1 litre of milk a day. So we calculated that we spent at least RM327 per month on just milk alone. However, some children have medical conditions that require them to be on specialised infant formulas, the price of their formulas are pretty costly too. Yes, milk is a big topic for us. Some parents are fortunate enough that their Autistic child is old enough to no longer drink milk, however many of us have young children who still demand milk from a bottle. 
Eliminating casein is extremely beneficial to a child with Autism, ADHD, even Asthma and Allergies. There are many research and reports supporting the GFCF diet, please see here http://gfcf-diet.talkaboutcuringautism.org/dietary-research-in-asd.htm Also, check out http://www.talkaboutcuringautism.org, there is a huge repository of information on the GFCF diet.  There are many studies and report repudiating the efficacy of the GFCF diet in Autism, but there are equally just as many studies proving the effectiveness. It is child specific, some kids show improvement on the diet, some don’t. However, it is worth your while to try the diet for a few months 100% at least once. 
Many parents when first hearing about the gluten and casein intolerance, they mentioned that their child tested negative for milk allergies. This usually refers to the standard IgE mediated allergy to milk, usually lactose in milk. Yes, most of ASD kids test negative, so did my daughters. However, in Autism, we are referring to IgG mediated intolerance to casein ie. the proteins in milk. Many many children tested very high intolerance to casein in their IgG intolerance test. Before you rush off and demand the IgG test for your child, take note that most mainstream doctors are not aware of this test as it is not available in local labs. I suggest you consult with a biomedical doctor. Be prepared to do the diet, otherwise it is a waste of time and money to do the IgG test and when the report comes back positive, you still don’t want to do the diet. Don’t do the test if you are not prepared to do the work! Some kids test no or very low intolerance to casein and gluten, however they are still recommended to do the diet and observe for any clinical improvements. There are many other immunological implications to consider when an ASD child tests low intolerance.
Better yet, start the diet and observe for any improvements within the next 1 month. Casein takes 3 weeks to leave the body, however many biomed doctors say that you will not notice any improvements until at least 3-6 months. But, each child is unique. Maya showed improvement within 1 week, a few children finally slept through the night within the first 1 week of the GFCF diet. Some children show improved eye contact, less tantrums and mood swings, improved bowel function, even reduction in eczema and rashes within a few days. Some children don’t seem to show any improvements even months later. But some report that when they reintroduced casein, they notice some regression. Please see here for some success stories on the diet  http://www.gfcfdiet.com/successstories.htm  However, Autism is a complex disorder. Not every child will show the same amount of progress just by eliminating reactive foods. For some kids, eliminating casein and gluten is nothing short of miraculous, for other kids diet is not their main issue.
When we’re talking about Autism, you have to take into account the staggering cost of behavioral therapy, special diet, supplements, consultations and many more. The added cost of expensive milk is another burden we face. Yes, Autism is insanely costly, most families cannot afford to treat their special-needs child. Many of our kids mine included, were addicted to cow’s milk or traditional milk formulas. The purpose of introducing rice milk is purely as a substitute to wean them off dairy and casein. Rice milk in itself or rice in general doesn’t give us the same amount of nutrients that normal milk provides, it’s basically empty calories. But many children can tolerate and digest rice well, though some kids who require the Specific Carbohydrate Diet would need to drink Almond or Hazelnut Milk. One parent I know had to source for Quinoa milk as their child was intolerant to rice, almonds and hazelnut. However, hopefully as our child’s addiction to casein tapers off and when they are old enough to no longer need milk from a bottle, we can look forward to a day without buying rice milk. 
One of the main concerns for parents when first eliminating milk, cheese and butter from their child’s diet is the lack of calcium. But, it’s really not a big deal because firstly, dairy milk is not the only source of calcium in a healthy balanced diet. Many Asian cultures do not have dairy cows or rear goats for milk, so where do their calcium intake comes from? In biomedical intervention, it is a standard practice to give Calcium supplementation anyway. Even for adults and children who eat and drink dairy milk products regularly, some like our ASD children experience malabsorption. Meaning, they are not absorbing the nutrients into their body. One of the main reasons for teeth grinding at night is calcium deficiency. So parents, take note. Even though we give our girls Rice Milk Enriched with Calcium, they still receive 1000mg of Calcium Powder by Kirkman’s Labs daily.
Back in the days when first starting the GFCF diet, we were limited to only 1 choice. Stock was extremely limited as well. My husband and I would scour the city looking for Rice Milk, we would also print out photos and info of certain brands of milk we wanted our favourite supermarket to bring in. We wanted to try other brands that tasted better, were creamier, had added calcium and organic. We also wanted to try Almond and Hazelnut milk. 
Gradually, more choices were available. Some we liked such as Aussie Dreams Pure Harvest Organic Rice Milk Calcium Enriched. This was slightly creamier compared to Pacific and we liked that it had added calcium, though for some kids it may not be suitable as the calcium was derived from seaweed sources.  
Some amazing parents take the effort to make home-made rice milk themselves. You can
even make home-made almond milk if you prefer. But when I looked at the cost of buying raw almonds, it would end up being more expensive and much more time consuming to make my own almond milk. However, the cost for rice milk may be more economical. You can find many recipe variations easily on the Net, however I personally do not have the time or patience to perfect the formulation to the right consistency that my girls would like. Also, you would need to make it daily, and I do prefer the convenience of having prepackaged rice milk. 
At the moment, I have 4 types of milk at home. Having used Aussie Dreams Pure Harvest Organic Rice Milk Enriched with Calcium, we are now trying to rotate to Australia’s Own Organic. Personally, I try to use Organic whenever possible. I also bought some Hazelnut Milk primarily for cooking and baking, I love the slight nutty taste. I also stocked up on small packs of Rice Dream Vanilla Rice Milk whenever I’m at Brown Rice Paradise in Singapore. These little 8oz packs come in handy when going out, I don’t have to worry about keeping it chilled and I can just pour it into the bottle whenever needed.
Yes, they are still within the RM10-RM13 per litre range, however many resourceful parents buy in bulk directly from the distributor and get additional discounts. Some like me, I still prefer to buy from my local retailer, I have a standard order and they are happy to give us a small discount. This worked out better for us as the shop is conveniently close to our home. If we buy direct from the distributor even at wholesale prices, their warehouses are usually so far away from where I live. We would have to drive at least 45 minutes one-way just to get there. When you add up the 1.5 hour drive, the petrol, the tolls and traffic, the discount was just not attractive for us. Though I understand some distributors offer free delivery if you order RM300 and above. I also prefer not to buy in bulk, whenever I buy in too large an amount, that’s when my girls decide that they no longer like that particular brand of milk. Go figure.
Now, there are many choices available in Kuala Lumpur alone. All of the milks shown here are available in either Village Grocer in Bangsar Village 1, Cold Storage Solaris or Cold Storage Bangsar Shopping Centre. Body Basics in BSC and some Vitacare pharmacies carries rice milk too.  Since I don’t buy in bulk from the distributors, I don’t have their contact details. But, be proactive and get the best prices you can. 
I came across Harvey Fresh Lactose Free Milk. Please take note that this is cow milk where the lactose has been extracted. Lactose is the sugars in milk, lactose-free milk doesn’t equate to casein-free. Casein is the protein in milk, in ASD kids, we need to eliminate casein rather than lactose. Casein is present in all products derived from cows or goat’s milk. So in this instance, Lactose Free Milk is not suitable for a child on the GFCF diet. Take note that many ASD children cannot tolerate soy milk, soya bean milk or anything soy-derived. Also, Oat Milk is not suitable. Though it is casein-free, oats are not recommended for the gluten-free diet. Goats milk is slightly lower in casein proteins compared to cows milk, however it is not suitable for the GFCF diet. 
In Hong Kong, I love to shop at Little Giant, the choices there are amazing. I love the GFCF canned whipped cream and especially MimicCream, a GFCF cream substitute made of almonds and cashewnuts. I use them for creamy soups, desserts and other recipes that requires cream. In a pinch, I have used coconut cream at times. Little Giant also carries EcoMilk Powdered Rice Milk. They can deliver overseas, please contact them directly for details  http://www.littlegiant.com.hk/en_index.php
In Singapore, you can find GFCF ice cream at Market Place Supermarket in Tanglin Mall. Rice Dreams brand has chocolate and vanilla ice creams, it is not as creamy  as typical ice cream. The Tofutti Vanilla ice cream is the best GFCF ice cream I’ve tasted so far. Please take note that many packaged and frozen foods do contain soy proteins, additives and preservatives. Depending on your child’s dietary requirements, packaged and frozen foods should be consumed in moderation. 
At the risk of sounding like a broken record, please take note that most children will refuse to drink rice milk when given whole for the first time. The taste and lack of creaminess is obvious. So, the key here is gradual transition- mix 1/4 rice milk  + 3/4 regular milk/formula. Once he is used to the taste, gradually adjust the mix eg. 1/2 rice milk + 1/2 regular milk. Over 2 weeks, most parents can successfully wean their child fully off dairy milk. Some kids with very sensitive taste buds needs to go even slower. A parent said that she had to mix 1/8 rice milk + 7/8 regular milk and change the ratio every 4 days. But with patience and perseverance, she managed to fully convert to rice milk within 3-4 weeks. Yes, during the transition period, they will reject the bottle at times. Yes, you will end up like me crying over spilt expensive milk. And some kids will experience withdrawal symptoms. But, please try, consistency and patience is the key.
Now in KL, you can find Pacific Rice Milk (Original & Vanilla), Pacific Almond Milk, Pacific Hazelnut Milk, Aussie Dreams Pure Harvest Rice Milk (Original & Calcium Enriched), Rice Dreams (Vanilla & Chocolate, Australia’s Own Organic Rice Milk and Freedom Foods So Natural Rice Milk. We are so spoilt for choice now, what a big difference to 2 years ago. Doing the GFCF diet is no longer as difficult as it used to be

>GFCF Butter Cookies

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This is a basic cookie recipe that is very versatile. It is gluten-free, casein-free, soy-free and egg-free. I can only find Ogran Gluten-Free Flour and Red Bob’s Mills Gluten-Free Multi-Purpose Baking Flour in KL, either one of these are fine. However, personally I prefer to use Red Bob’s GF flour when baking as it doesn’t contain rice or corn flour. I have tried using Ogran GFCF flour and Red Bob’s Mill GF flour, both taste great but with slight difference and when I didn’t have enough flour, i’ve even used 1/2 each and it still turns out great.

For casein-free margarine, my favorite in Nutelex. I have also tried using other brands, it still works fine though Nutelex tastes closest to real butter. I have yet to experiment with Xylitol as a substitute for sugar, but feel free to try.

I make this often with both my girls, they love being part of the process. There’s lots of messes and squabbles, but there’s also lots of fun and laughter too. They help to spoon the sugar and Nutelex into measuring cups. They learn to sieve the flour, they spoon the cookie mixture into their own plastic bags and place it in the fridge themselves. They each have their own tiny rolling pins. I give them a bowl of flour each to sprinkle liberally on the work surface, on the dough and rolling pin and they are very good at it too. They choose their own cookie cutters and make sure they dip it into flour before cutting it. And decorating with the rainbow sprinkles are strictly their job. It’s a lot of fun and the girls really appreciate the home-baked goodies, especially when it’s their own creation.

As you can see below, I have listed down several variations of decorating the cookies.  The options are endless. just use your imagination. Give your kids free reign, don’t worry about the mess. Don’t stress out about the kids ruining the cookies, somehow it always works out. A lot of our baking comes out wonky and lopsided and looks like the Sprinkles Fairy threw up on it, but they are always, always appreciated.  I always give lots of encouragement and praises, I take photos during the baking as well as the completed cookies. They also take great pride when we go to a neighbours’ or friends’ houses to share their goodies. The girls and I will go through recipe books or websites and choose what to make.

I call these Butter Cookies even though technically there is no butter. It was originally based on my experiments with the typical Butter and Sugar Cookie recipes. However, I have reduced the amount of sugar to the point where it still retains the yummy cookie flavor without being too sweet. I have tried reducing the amount of sugar to only 1/2 cup but I found that didn’t work so well. These cookies are yummy eaten plain or decorated, especially when freshly baked. It can be stored in an airtight container for 1 week.

Butter Cookies- gluten-free, casein-free, soy-free, egg-free

Makes 24 large cookies

Ingredients

1 cup (226 grams) Nuttelex or dairy-free margarine

2/3 cup (135 grams) granulated white sugar

1 teaspoon vanilla extract

2 1/4 cups (295 grams) GFCF Flour

1 large egg or 1 heaped teaspoon Ogran Egg Replacer

3/4 teaspoon Xantham Gum (optional)

1/4 teaspoon salt

Extra gfcf flour for rolling

Extra sugar for sprinkling (optional)

Instructions

Heat oven to 180 degrees celsius/ 350 degrees farenheit

1. Sieve flour, xantham gum and egg replacer in bowl. Add salt.
2. In separate mixing bowl or cake mixer, cream the margarine and sugar until light and fluffy
3. Add vanilla, mix briefly
4. Add the flour mix and mix until fully incorporated
5. Spoon the mixture into plastic bag, and chill in freezer for 20 minutes.
6. Once chilled, roll out the dough with rolling pin to 0.5cm thickness. Dough is quite soft and sticky so sprinkle liberal amounts of gfcf flour on work surface, dough and rolling pin.
7. Dip cookie cutter into flour then cut out shapes. Place on baking tray lined with baking paper.
8. Sprinkle the cookies with sugar (optional)
9. Chill the cut out cookie tray in freezer for 10 minutes (optional)
10. Bake in oven for 20-25 minutes until golden.

Remove from tray immediately and cool on rack. Keep in airtight container once cooled.

To Decorate:

Option 1- Chocolate Dip
Melt dairy-free chocolate in a pot on low heat on the stove. Add 1-2 tablespoons rice, almond or hazelnut milk until thinned to desired consistency (optional). Add 1 teaspoon margerine so that it dries to a shiny finish (optional), mix well. While chocolate is still hot, dip the cookies halfway into the melted chocolate. If the chocolate thickens, reheat it and add a bit more milk until it reaches the desired consistency. Top with colourful sprinkles or crushed peanuts. Leave to cool on rack. Once dry, keep in airtight container in the refrigerator, store layered over baking paper.

Option 2- Sugar Glaze
Add 2 cups icing sugar and 1/4 cup hot water in a pot on the stove. On low heat, stir the sugar until melted. Add 2 tablespoons rice, almond or hazelnut milk, this makes the icing opaque. Mix well. Take off the heat. Add desired food coloring. Dip the top of the cookies into the glaze, sprinkle with decorations if desired. Leave to cool on rack. If the icing hardens, reheat it and add a bit more milk until reaching the desired consistency.

Option 3- Snow White
Sieve icing sugar on cooled cookies. Omit Step 8. Alternative, finely grind 1 stick of cinnamon with 4 tablespoons of icing sugar. Sieve the cinnamon sugar over the cookies.

Option 4- Thumbprint Jammies
Replace Step 6, 7 and 8. Roll dough into little balls. Make a little indentation in the centre with your thumb. Roll the balls into crushed nuts (walnuts, almonds, pecans or pistachios) Spoon a little jam into the centre. Bake as usual.

Option 5-  Cherry Tops
Replace Step 6, 7 and 8. Roll dough into balls, roll into crushed nuts or tinned dessicated coconut. Top it with a halved glazed cherry instead of jam. Bake as usual.

Option 6- Rainbow Cookies
After Step 4, add 1/4 cup of colorful sprinkles into mixture and mix. Follow the rest of the recipe. Alternatively, at Step 8, sprinkle the cut out cookies with colorful sprinkles.

Option 7- Vanilla Gingerbread Men
Cut with a Gingerbread Man cookie cutter, place M&Ms, dairy-free chocolate bits or GFCF appropriate candy as the buttons and eyes. Follow the rest of the recipe. Alternatively, after baking use piping gel to decorate buttons and eyes.

Happy baking!

10 Valuable Lessons For Autism Parents: A Journey Of Grace And Dignity

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I am a mother of 2 children who are now recovered from autism. In my journey of healing and recovering them, I learnt that anything is possible. As a mother and autism advocate, I share with you some valuable lessons I learnt in my journey.

When both my daughters were diagnosed with autism, in the midst of my grief, I had to pick myself up and figure out a way to help my children. What do I do, where do I go, how do I start? For families who have just received the autism diagnosis, believe in HOPE. Without hope, you have already lost the fight before you’ve even begun. Always believe that our children can improve and even recover.

autism

1. Attitude is everything

How you respond to something will determine your outcome. If you choose to walk down this path full of fear, anger, hate, scepticism, negativity, sorrow, or jealousy, expect to receive the same in return.

The first few months after my daughter received the autism diagnosis, I lived in a life ruled by fear. Fear of the future, fear of the unknown, fear of taking risks, fear of making the wrong decisions, fear of whether I can do what it takes to help my child. A life led by fear is not healthy. It also stops you from moving forward.  It was a lonely, scary journey.

I realised that this is not helping my child at all. The fear is still there, it will never go away I think. However, the difference is, I no longer let the fear stop me from doing what is best for my child.

You’ve probably heard of the law of attraction. The philosophy of ‘like attracts like’ is extremely powerful. If you have a lousy attitude, chances are, no one is clamouring to help you and your child. More often than not, you will meet resistance and hostility.

Reset your attitude, you will be surprised to how much more you will receive in return. There is an infinite amount of love, hope and positivity in the universe. You just have to reset your frequency to tune in to that positive abundance.

2. Fill your space with positivity

Surround yourself with positive, supportive and encouraging people. These are the ones who will stay with you along the way and cheer you on. Don’t waste your precious time and energy on negative people who will only hold you back and make you feel worthless. They will drag you down instead of helping you up.

To the ones who make you angry or say hurtful things, just smile and walk away. Don’t scream at others. Screaming doesn’t help the situation, it only makes things worse. If you have done wrong, apologise.

Fighting only zaps your energy. Don’t fight in front of your children, they can hear you and remember what you said. Autistic children are not deaf. Don’t forget to hug and kiss your child. Even if you think they’re not listening, always tell them how proud you are of them. Love them and kiss them everyday, this is better than any therapy or medication. Don’t forget to surround your child’s space with positivity too. They need it.

Always treat your therapists, service providers and medical professionals with respect. They are there to help your child. Always pay them on time. Consistently paying them late is a sign of disrespect and lack of character on your part. Being rude or mean to them is just cultivating negative emotions. Surely you don’t want your child to be treated or taught by people full of anger and resentment right?

Choose hope and positivity. Expect this to be a journey full of challenges and pitfalls. But also expect pleasant surprises and wonderful progress. Autism never stops, it never takes a day off, it never gives us a break. Our children live in autism 24 hours a day. Always treat our children with kindness and respect, we can only guess how it feels to live in their bodies.

Trust me, it’s easier and happier to travel this journey when you fill your inner space with positivity and surround yourself with the right people.

 

3. You are what you eat!

Clean up your child’s diet immediately and focus on healthy, nutrient-dense foods. My daughter responded positively to the GFCF diet. Within the first week of the diet, she spoke her first word!

I went gluten-free, casein-free, soy-free and egg-free. Omit all gluten (wheat, oats, rye, barley) and casein (cow and goat milk-based products, milk, yoghurt, cheese, butter) I stopped soy too because soy’s biochemical properties are very similar to casein, plus majority of autism kids test very high intolerance to soy. Most ASD kids also have very high intolerance, if not allergies, to eggs.

Incorporate nutrient dense foods in your family’s diet. Go organic and GMO-free if possible. Choose grass-fed, free-range, antibiotic-free meats. Very important to reduce or stop processed, packaged foods and drinks that contains preservatives, colorings, flavorings, artificial sweetener, caffeine. Stay away from sugar and high fructose corn syrup. These really affect our kids and behavior!

Do the diet 100%. Yes, there are other kids eating junk food and bread in front of your child. Your child WILL try to eat forbidden foods. Yes, other family members don’t want to follow the diet. Yes, grandparents will smuggle a bit of ice cream in. There will be transgressions, it happens. Start the diet again. Find a way to make it work. Eventually, the diet becomes 2nd nature.

4. Autism is medical

Many children with autism suffer from gastrointestinal issues, oxidative stress, nutritional deficiencies, immune dysregulation, inflammation, allergies, chronic infections, and disorders resulting from environmental toxins.

Treat the underlying medical illness, a healthy body means a healthy mind. If your child has chronic constipation, diarrhea, unable to eat, frequent infections and illness, do not make autism an excuse not to treat your child. Not everything in autism is behavioral, some are medical conditions that needs medical treatment. Every child deserves good health, autism or not. Everyone deserves good health and medical treatment during illness, whether they are young or old.

Make an appointment with a biomedical doctor. They will help you address the underlying medical issues that are common in our children. Click here for Biomed Doctors. There are other treatments that are highly beneficial for children with autism and ADHD, including homeopathy, osteopathy, cranial sacral therapy, essential oils, to name a few. Please consult with a medical doctor or a healthcare professional to manage your child’s treatment.

5. Finding the right therapy and school

There are many types of therapies that are beneficial for our kids. In my opinion, any therapy you choose should be intensive, consistent, preferably 1 on 1 therapy. For many children who are new to diagnosis, larger student to teacher ratio may not be suitable initially. It is important to invest in a good quality therapy or therapies that are consistent, frequent and conducted by trained professionals. Choose therapies that are targeted at addressing your child’s needs. The therapy should adapt to suit your child, not the other way round.

Remember, early intervention is key! I did 1:1 ABA therapy (Applied Behavior Analysis) for my daughter, and I can’t recommend it enough. When she was first diagnosed, I did home based ABA, 15 hours of therapy a week. By the time she was 3 years old, I changed to centre-based ABA, with 30 hours a week of therapy. That made a HUGE difference in her progress. There are pros for home-based as well as centre-based therapy. Ultimately, I chose centre-based therapy as there were many more benefits compared to home-based therapy for my daughter.

Doing home-based therapy was fine for a while, but after some time, I found many aspects of her development were not addressed enough if I kept her home all the time. Centre-based therapy helped with social-skills, generalisation, flexibility and also is a gentle transition to a mainstream school environment. Also, on the plus side, she had access to many more variety of toys, reinforcers and games at the school. And there were lots of therapists and other children there to play with.

I am the co-founder of Brightstars, it is a holistic school for children with autism, ADHD and learning challenges. I set up the school with my 2 good friends who are also mothers of children with autism. We have always dreamt of a school that had all the best therapies and programs that we felt were most beneficial to special-needs school. We dreamt of a school that focuses on quality rather than quantity. A school with a 1 to 1 student to therapist ratio. A school filled with the best, brightest and most compassionate therapists ever. A school that was sensory-friendly, quiet and calm. Most kids with autism find noisy and busy schools a sensory nightmare. So we put great thought in the design of the school. I wanted a school that was comfortable, friendly and fun. Most importantly, I wanted a school where each child can reach their fullest potential.

Brightstars incorporates a comprehensive curriculum with a 1 to 1 student to therapist ratio. Each child receives an individual education plan (IEP), ABA therapy, occupational therapy, sensory integration therapy, music therapy, Autism Movement Therapy, social skills playgroup, school readiness program, and more! To find out more about Brightstars – Life Skills For Exceptional Kids click here www.brightstars.my 

6. Get connected

Get connected, get educated, start surfing – join the KL Biomed FB Group to connect with other parents who are doing nutritional approach, biomedical treatments and various therapies.  Don’t forget to check out The Thinking Moms’ Revolution and connect with them on Facebook. Get acquainted with other parents, they will be your main source of support on this often long and lonely journey.

Remember, you are not alone.

7. Take care of yourself

Take care of your physical, mental and emotional health. Don’t be afraid to ask for help. Don’t forget to eat well, get enough sleep, exercise and eat healthy. By taking care of my health, I was more equipped to handle the stress and rigours of special-needs parenting. I could do more for my child when I myself was healthy.

Don’t forget to nourish your soul- go for a massage, go to a salon for a hair wash, go for a swim, go to the cinema, walk in the park, have an afternoon nap or  go for a coffee with a friend. Try to do something just for yourself once a week. Without you, you child will not improve.

I take supplements, eat healthy, try to exercise and I make personal time for myself regularly. I feel all the better to face the challenges that autism throws at me everyday. Not everyone will have the resources to afford this, not everyone is blessed with helpful family members or friends who can share the burden and give us the break we need. As far as autism parents go, I am extremely lucky indeed and I count my blessings. Manage your resources wisely, however little we may have.

It is hard to strive for recovery when the mum is in deep depression and under extreme stress, the goalpost seems further away when we feel bleak, dejected and pessimistic.

If you are married, take care of your relationship. You are not the only one grieving, your spouse is too. Along the way, you will lose your sense of humour. Try to regain that, you will need it. Have patience. Learn to forgive.

Don’t forget to pray. Only pray for good things. Worrying is praying for bad things. So, pray for good things. Set realistic goals. Give yourself small challenges. Don’t sweat the small stuff, look at the big picture. Celebrate the victories, small or big. Mourn the losses, but pick yourself up and keep going to the next level.

8. Focus on what you CAN do, not what you CAN’T do

I always tell parents to focus on what they can do. Don’t focus on the things that you cannot do. Focusing on the things that you don’t have, can’t do, can’t afford etc, is a waste of time and energy. Instead, put your energy into the positive actions that you can do TODAY.

 

9. Set realistic expectations

Be realistic in your expectations. There is no miracle cure, no magic pill, no one size fits all when it comes to autism. It takes hard work, perseverance and TIME for our kids to improve. Expecting a child with 3 years worth of speech delays, behavioural issues and sensory disorders to improve drastically within just 6 months of therapy and treatment is unrealistic. You cannot catch up with years of delays in just a few short months. Anyone who promises you miracles cures or instant results, be wary.

Think big, aim high. Don’t underestimate your special child, you might just be pleasantly surprised. Don’t let anybody hold you or your child back.

10. Forgive yourself

It is not your fault. Your child’s autism was not caused by bad parenting. Blaming yourself only brings you down. Ultimately, you need to move on. Don’t waste your time on guilt, it is counter-productive. It’s not helping your child.

Remember to go through this journey with grace and dignity. Our children are voiceless, it is up to us to speak up for them. Don’t forget why we do this, out of love for our children. A smile goes a long way, a thank you even longer. Don’t forget those who have helped you along the way, pay it forward in the hopes that you too can help the next new parent that comes your way.

~ Marissa aka Spectrum Mum

 

>A Good Night's Sleep

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I was recently reminded by how good sleep is generally in our home right now. It served to remind me to appreciate and not take for granted the good night’s sleep that we have all enjoyed for the past year or so. For the past 3 months, both the girls have been falling ill constantly. As usual, when children are sick, it also affects their sleep as well as the parents sleep. Having just come back from a quick little holiday with Paul, just him and I alone, we both enjoyed 2 nights of great sleep. Looking back, the sleep fairy has been extremely good to us in the past year. I had forgotten all the sleepless nights we had and how I used to crave even a straight 3 hour stretch to sleep. As a Mum, if your kids don’t sleep, YOU don’t sleep right? Since sleep disorders are a common issue for most ASD kids, I needed to remind myself of the luxury and privilege that I now have, a guaranteed good night’s sleep most nights. Nowadays, if they’re not sick, both girls would be in bed by 7.30pm and would stay asleep until 6.30am. Usually they will fall asleep by themselves without much fuss, but occasionally they would cheekily get out of bed again, so we would have to tuck them into bed again a few times, read countless bedtime stories and sing lullabies. But being the ungrateful parents that we are, Paul and I would moan over the 6.30am wake-up calls of them jumping on our beds, giving us kisses and cheerful “Good mornings !” How times have changed, how easily we forget…….



When we first started intensive Biomed, we worked out our priorities together with the doctor. This determined the first course of action and treatment and addressed our most pressing issues. First and foremost was sleep! Throughout Maya’s entire life, even from the day she was born, she always had sleep issues. A typical newborn would stay asleep for 23 hours a day, whereas Maya would be awake for 12 hours a day. For the first few months of her life, she hardly ever stayed asleep long enough like other kids. She would fall asleep while breastfeeding and I remember having to wake her up so that she could drink her fill. When she was a baby, she hated sleeping in her cot, preferring to sleep in our bed, tucked between the 2 of us. Unfortunately, though she would sleep, Paul and I couldn’t for fear that we would accidentally squash her.

When she was born, we had 4 main issues to deal with. I had difficulty breastfeeding her, getting her to sleep or stay asleep, dealing with constant pooping and her constant crying.This was going to be a pattern for much of her life.  Breastfeeding was hard!! She had difficulty latching on, she couldn’t suck properly, the milk flow would be too much for her causing her to gag, she would scream for milk, but when trying to feed, she’d scream as if in pain. I had mastitis twice and was on antibiotics while breastfeeding her. Her feeding was so erratic that it affected my milk flow, there were 2 occasions when my milk supply dried up. I had to painstakingly express milk all day long for up to a week trying to get my milk supply up to the previous level. Even when I expressed milk and fed her by bottle, she needed the slowest flow nipple and could only drink not more than 2oz at a time.  If she drank too much or too fast, she would projectile vomit. I remember many many times of cleaning up the car, the bed, the floor and changing her outfit and mine many times a day due to her throwing up. She required small feedings very frequently. I remembered breastfeeding her every hour for the first 3 months. When she was 4 months old, she only needed feeding every 2 hours. 


At that time, I knew that the mother’s diet would affect the breastfed baby, thus I was careful of avoiding caffein during and after pregnancy. Also friends and family had reminded me to stay away from foods that caused “angin”. However, in hindsight if I had known to stay off casein and gluten too, things may have been different. Even though at that time Maya was never fed any formula or milk-based products, I didn’t realise there was a lactose, dairy or casein issue involved. A child can still ingest it through the mum’s breast milk. When I was breastfeeding, I was constantly hungry, I craved chocolate milk and yoghurt. There were many varieties of yoghurt in Sydney and I loved the  fresh greek yoghurt with mixed summer berries from David Jones, Paul would buy me tubs of it. I also ate freshly baked gourmet breads and pastries everyday, now I know better…….. 


After 7.5 months of breastfeeding, Maya refused to drink from me and preferred the bottle so we moved her on to formula. I envied those other mums whose kids would drink a huge bottle of milk in one go, then fall asleep for hours. With Yasmin, it was so different. She slept well, she fed well and we only had to change her nappy 6 times a day. Because Maya was my first born, we didn’t know any better. We thought 12 poopy nappies a day was normal. We thought feeding every hour was normal for a 3 month old baby. But what I knew was abnormal was her sleeping only for 20 minutes at one time. However, no one could give us any insight on it. 

Since she was 3 weeks old, Maya would scream and scream from 6pm until 10pm every night. This went on for 4 months! We would try to feed her, change her, rock her, swaddling, anything that would calm her down. Usually, swaddling her very tightly and rocking and swaying her hard whilst walking around and around very fast would help. For 4 hours every night, Paul and I would take 1 hour shifts, both of us trying to soothe her. Yet, she would continue to scream bloody murder. Doctors would tell us it was colic and gave us some anti-colic medication which didn’t work. We were exhausted and worried about our child, but we could’t find any answers. Her crying was always high-pitched at the loudest volume, her cries were so blood-chilling that people were afraid to come to our house or invite us anywhere. We finally had an inkling that Maya had sensory issues, whenever we took her out to the shops or for an outing in the day, at night her screams were more frantic and lasted longer. If we kept her at home all day long, with no distractions or visitors, she would have an easier night. She’d still be screaming, but it was only for 4 hours, rather than 6 hours straight. This eventually got better, especially since we finally got a maid when she was 4 months old. For the first time ever, Paul and I managed to sit down to eat together while the maid would rock and soothe Maya. I remember days when I never had a chance to sit down, because Maya needed to be carried and rocked all the time.

When we finally weaned her on to solid food, it was a struggle. She did not like to eat. Mealtimes would take up to 1 hour, just to coax 2 tablespoons of food into her. She continues to be a picky eater up to this day, with a very small appetite compared to other kids. However, when she was 1.5 years old, I moved her on to fresh milk. She loves it so much and could drink up to 1 litre a day, which is a lot for her. And she loves bread, she would happily eat bread and drink milk all day and nothing else. We noticed the addiction, but nontheless we were happy that we could feed her nutritious meals by making pizzas and sandwiches which also contained protein and vegetables. We noticed her love of milk, but we have been taught that fresh milk is good, lots of calcium and nutrients right? She would drink a 6oz bottle, then she would be all dopey and sleepy and goofy. She acted like someone on drugs, all high and woozy. Initially we thought it was funny, until years later we learnt about the opiate effects of casein and gluten. 

She would have explosive bowel movements 12 times a day in the first 3 months. We did not know this was abnormal. And once a day, every day, her poop was so explosive that it would burst out of her nappy and cover her entire body. Her little bodysuit would be soiled from the knees up till halfway up her back, sometimes she would be covered in her poop from her neck down to the ankle. We threw out so many outfits because it would get so soiled.  She also had nappy rash, again and again. We were still in Sydney at the time and when I showed her poopy nappy and her red sore bottom, our well-respected and experienced Australian paediatrician said fully breast-fed babies are not supposed to have diarrhoea and they are not supposed to have nappy rash. Errr……… “Doc, I don’t care whether they’re SUPPOSED to or not, but you can see for yourself the diarrhoea and the nappy rash. I fully breastfeed her, yet she still has diarrhoea and she has bad nappy rash”. He didn’t have any answer for that, just kept saying that she’s not SUPPOSED to have them. I don’t care what medical books say, she DID have them, so help me out here will ya? Can you explain this doc? Can you help my baby? 

From the very first day she was born, Maya didn’t sleep well. Paul spent the 4 nights in hospital with me, sleeping on the floor.  The hospital advocated the baby sleeping or rooming in with the mum immediately from birth, in order to facilitate bonding. There were no nurseries where babies are placed, all babies roomed in with the mums unless they were in ICU or if the mum had complications. The nurses would always be on hand to help, but Paul was and still is an amazingly hands-on dad. Because I couldn’t get up from bed for a few days after the Caesarean birth, Paul took charge of changing her nappy, rocking her and burping her. He even gave her her first bath, even for the next few weeks after because I was afraid to bathe her myself. In hospital, Paul would hand Maya to me whenever she needed to be fed. She would not sleep in her bassinet, preferring to sleep cuddled up next to her Daddy even from her very first day. She loved being held by Paul, he would sleep on a mattress on the hospital floor in my private room. She would cuddle up to him, her little face tucked against his chest. Only then, she would sleep peacefully. I remember nights in the hospital when she would scream and scream and I was not able to get up from my bed. Paul would rock her all night long, walking down the dark hospital corridors while trying to soothe her. Even while we were all holed up in hospital, Paul still had work to attend to and would try to catch up on his emails. He would sit on the floor in front of his laptop, Maya cuddled up in his arms whilst typing out an email. 


As a young baby, Maya would fall asleep for 20 m
inutes and stay awake for 1 hour, then sleep for another 20 minutes and so on. By the time she was 2 months old, at night she eventually managed to sleep for 2 hours straight. Then wake up again for another hour to drink milk, a nappy change, then another half hour of rocking her back to sleep and she would sleep again for 2 hours. Usually, she would wake up cranky and crying, even after a somewhat long sleep. This was how life was like in the first years of her life. 
However, when she was 1 years old, she finally managed to fall asleep by herself without much difficulty and would sleep for 12 hours straight at night. We would limit her daytime naps to only once a day, and then only for 1 hour. We wouldn’t let her nap too late in the day, otherwise she would be up all night. It was mean, but that was the only way we could cope. However, even though she slept well at night, during the day time was very tough. We had to deal with her tempers, meltdowns and mood swings. It wasn’t quite as bad as after she regressed into Autism, but it was taxing enough for us. 


But throughout all the difficulties and challenges, Maya developed and achieved all the milestones at age-appropriate levels. Her growth chart and well-baby visits recorded normal development. She received all her vaccinations on time and we combined both Australian and Malaysian vaccination schedules. Therefor Maya received more vaccinations than the average Australian or Malaysian child. Her last vaccination was for Meningococcal C. She was 1.5 years old then, about 4 months after her MMR and Varicella vaccination. We were living in Sydney then, the vaccination was give 1 week after Yasmin was born. Before that, there were many videos and photos of how happy and interactive Maya was. She didn’t really talk spontaneously, but she would label things on the posters for us, when asked where’s Mummy, she would point to me. When asked who that was, she would happily tell us their name. She had a big vocabulary and could count to 20, she knew all her alphabets. Though she never did call me Mummy ever, she knew where I was and would always want my attention and be with me. She had a sparkle in her eyes, she was full of fun and played well with other kids.

Looking back, we realised she started to plateau developmentally and she slowly regressed. She talked less and less, her tantrums and aggression were worse. She retreated more and more and preferred to be alone and her sleep deteriorated. Maya constantly would wake up in the middle of the night and stay awake for 2-3 hours, singing, laughing or talking to herself. Or it would take her a long time to fall asleep. She also kept getting constipated, medical records showed many visits to the doctor with a prescription for more laxatives. And her behaviour and condition deteriorated until she was finally diagnosed with Autism.


Unfortunately, only years later with the hindsight I have now, I now understand why Maya was such a difficult baby. And why she eventually regressed and became the 1 in 100 to get Autism. 

Obviously, when we started biomedical, sleep was our first priority, years of sleepless nights has taken it’s toll on us. So getting her sleep sorted out was by far the most important thing for us, rather than the Autism behaviours. Dealing with her behaviors was extremely challenging enough, but doing it day in and day out on very little sleep was just too much for us. The GFCF diet helped by reducing some of her food cravings. By eliminating casein and gluten, this also caused a reduction in gut issues. A lot of sleep issues are directly related to GI disorders. Since we took out casein and gluten, and later introduced digestive enzymes, she could process her food better. Thus reducing her reflux and colic, which are frequent culprits when dealing with sleep issues in kids. We also used melatonin for the first few months to help regulate her sleep patterns. However, melatonin alone will not resolve the underlying sleep disorder. Once we started intensive biomedical treatments, we eliminated all the IgG reactive foods including soy and eggs, based on her IgG Food Intolerance Test results. We replenished her with magnesium, which has a calming effect and gave her high doses of casein-free multi-flora probiotics. Magnesium and probiotics also relieved her of constipation, another culprit to consider if your child has sleep issues. However, only when we started doing several rounds of anti-fungals, then her sleep issues were totally resolved. Fungal or yeast overgrowth is a common cause for night awakenings followed by laughing and giggling. Yasmin however had sleep issues whenever she had bacterial overgrowth, this would also include bloated tummy, crankiness and smelly abnormal stools. 

Therefor, whenever my children have sleep issues, I always go through my checklist;
1. Diet – were there any casein, gluten or other infractions such as MSG, preservatives, colorings, high salicylates, too much sugar etc
2. Is she constipated? If yes, then check the possible causes eg if she’s getting enough magnesium, diet infraction or yeast overgrowth. With Maya, once we resolved her constipation and yeast overgrowth, her sleep improved 100%
3. Is it due to yeast-overgrowth? Possible clues for my girls include laughing middle of the night, during the day there is giddy, silly behavior, standing upside down, lots of climbing and jumping off furniture, eating too much sugar or yeast feeding foods, scratching bottom, biting toes, rash, itchiness, constipation
4. Melatonin – would a few nights on melatonin resolve the issue? If no, then check the other causes. Also, hyper kids are not able to regulate serotonin levels amongst other things, serotonin is the precursor of melatonin. At one point, it took a long time for Maya to fall asleep, usually we would need to rock her for 1-1.5 hours every night! During those moment, melatonin helped her to fall asleep faster and easier.
5. Magnesium deficiency – increasing magnesium may be calming
6. Folinic Acid – for some kids on MB12, it may cause hyperness. Tempering it with folinic acid may have a calming effect. Some may need certain amino acids if they are deficient.
7. Is it GI problems such as bacterial infection? Bloated tummy, low appetite, tantrums and diarhhia are usually followed by sleepless night in my home.
8. Are they ill? Perhaps they have a virus, sore throat or fever or colds and flus, these would affect sleep. Especially if their nose and sinuses are congested and it affects their breathing at night. 
9. Is there enough calming treatments? Warm epsom salt baths at the end of the day is usually calming for our kids, gentle massages by mummy also helps to calm them down.
10. Sleeping arrangements and routine: is the room temperature too hot or too cold, is my child shivering or sweaty, is the room too dark? Maybe your child may be comforted if there’s a nightlight. For my girls, I installed blackout curtains so that the morning sun would not shine so brightly waking them up too early. Do they share a room, is their sibling waking them up? If they share a room with the parents, is the child being awakened by your husband’s loud snoring? Most kids respond well to a set routine, therefor try to establish a good night time routine .
11. Sleep pattern & habits – do they still have an afternoon nap, is the nap too long or too late. Is it possible to either limit the time they nap or take away nap time completely. Remember, anyone child or adult, if we have a nap in the afternoon, chances are we will be well rested and won’t feel sleepy until midnight. If we are only able to sleep a total of say 10 hours a day, then if we take a 3 hour nap in the afternoon waking up at 5pm, chances are we won’t go back to bed until 12 midnight, and will wake up fresh and rested at 7am. Simple math right? 


The challenge here is when the child is so exhausted in the day time after several hours of intensive 1 on 1 therapy, they really really need to nap. It seems cruel to take it away from them. However, in the end the mum ends up utterly exhausted too because they have to deal with a wide-awake active child until midnight. Therefor, we have 2 choices. Either follow the child’s routine ie. accept the nap time and hopefully you get a chance to nap and rest when they do, accept the fact that you will only be able to go to bed at midnight every night. Or the 2nd choice is to try to change your child’s sleep pattern, this is quite difficult according to most parents. However, due to desperation, this is what I did. We started home based ABA when she was 2y9m, she still needed a 2 hour nap everyday at 1pm. So after the morning ABA session, she’d have a quick lunch and have a nap. However, sometimes she wanted to sleep longer. Many times we had to wake her up because the therapist had arrived. However, if woken up prematurely she would be extremely cranky throughout the day, even during therapy times. Also, because of this, we couldn’t get the maximum amount of hours of ABA that Maya required. 


Therefor, I tried all means possible to keep her awake during the daytime with tv, toys, snacks, playing games, ANYTHING that would keep her entertained and not want to go to sleep. And usually by 5pm, she would be dead on her feet and try as we might, she would fall asleep for 5 hours straight and wake up at 10pm! Of course, whenever this happened, she wouldn’t go back to sleep till 3am. After a few weeks of this extremely exhausting pattern, we eventually managed to keep her awake till 6pm, then 7pm. Simultaneously, I would give her melatonin WHILE she was sleeping, in the hopes that it will keep her asleep for a few more hours. When she was overtired, it also took a long time to calm her down enough to fall asleep. It took a couple of months of even more worse broken sleep though, but eventually we got there. By the time she was 3y1m, she could stay up the whole day even with a full day of ABA with no nap. She
would be cranky, overtired and irritable in the late afternoon and always falling asleep, but we persevered and cruelly kept waking her up and keeping her awake until  she’d fall asleep exhausted at 7pm. After that, I’d sneak in a small bottle of milk with 2mg of melatonin around 11pm and she would only wake up at 7am the next morning. 



However, as she grew older and her body grew healthier and stronger, she was no longer as exhausted by 7pm. She no longer needs melatonin after the first 3 months of us regulating her sleep cycle. Though it seemed cruel at first, eventually Maya got used to the routine and was well rested and had enough energy to get through all her therapies and the demands of the day. Best of all, Paul and I get to have the evening together. We get to have some quiet relaxing time together and can look forward to a good night’s sleep. 

For my girls, after we have successfully taken away their nap times and they are able to sleep from 7pm – 7am or so, we try to have this routine for the past year. After dinner, they have a warm epsom salt bath together, often with me included, we brush our teeth together and we all choose our favourite pyjamas or nightie. Then when I can, a nice massage by mum with perhaps glutathione lotion, MSM cream or magnesium cream. If not, a simple lavender based oil or lotion is calming too. Then the girls get into bed, the air condition at a nice cool temperature, the air purifier switched on, curtains shut tight and a soft nightlight on while Daddy reads a bedtime story. Then, they have a nice bottle of rice milk with melatonin perhaps. I tuck them into bed and I kiss and hug them every night ever since they were newborns and I always tell them how much I love them, how proud I am of them, I say thank you to them for a lovely day, and that we’ll have another happy day tomorrow. I let them know how happy they make me feel and that I hope I made them happy too. I tell them how brave and clever they are. I tell each girl private words of love and affection. I tell them to have sweet dreams and that I’ll see them in my dreams. Every night whenever I tuck them into bed, I never fail to tell them this. After years and years of whispering my love to them in their ears, eventually Maya and Yasmin started telling me good night and that they love me too. Good night and sleep tight everyone………




>Relaxing the Diet

>
We had an amazing holiday in Sabah recently. Yasmin loved the water slides, Maya really loves the flowers in the garden and both girls climbed trees. We went on a boat ride and visited the sea gypsy villages on the river. Maya loved fishing for crabs, she caught one and named it Pinchy the Crab. And the highlight of our trip was watching the orang utans in their natural habitat.

It was the first time that the girls did not fall sick whilst on holiday, neither did they fall sick after coming back. Most importantly, we took a bold step by relaxing the girls’ strict gluten-free and casein-free and low sugar diet.

Maya has been on the GFCF diet for 1 1/2 years and Yasmin has been on it for 1 year. Also, we have made tremendous progress in Maya and seen some improvements in Yasmin. Thus, we conclude that their gut and bodies have healed to a certain extent. My strategy was to allow the girls to eat gluten and casein and sugar, while making sure they have digestive enzymes too. And to observe for any changes or regression.
Maya was in absolute heaven, she had coco pops for breakfast, she had a choice of fresh breads and buns from the breakfast buffet. She chose a different flavor of yoghurt every morning and we would buy an ice cream or a lollipop from the shop at teatime everyday. She was loading up on wheat based carbs, dairy and sugar – all the things she has missed for so long. Yasmin just loves her coco pops and gluten toast for breakfast, but otherwise was happy to stick to her usual diet. We make sure that they have a relatively healthy lunch and dinner with lots of protein and vegetables, it’s not all junk food:-)
We would pre-mix a container with Kirkman’s Enzym DPP-IV and Kirkman’s Phenol Assist with juice. Every-time the girls ate, we would have a syringe handy and just squirt it in. We did this for the entire 5 days holiday. The other resort guests would stare at us when we brought out the giant 20cc syringe and feed the girls that way. They must think we’re nuts. We also made sure they had all the other supplements as well.
They both slept well, had daily bowel movements and there was no meltdowns or behavior changes. Previously, any infractions to the diet would result in sleep issues, constipation, increased yeast behaviors and tantrums. I assume this means the girls’ gastrointestinal health has improved especially their leaky gut. All the supplements that we have been giving religiously for the past 1 year has made a huge impact. However, now that we’re back at home, we will still continue with the GFCF diet. The diet is the cornerstone of biomedical intervention; in order for the other supplements to work optimally, we need to have the diet in place.
We have fond memories of Sabah and Maya keeps saying she wants to go back there. It’s a magical place full of yummy bread, multi-flavored lollipops and endless ice-cream.

>Sleep Issues

>
Sleep issues are a common problem in children with ASD. Lack of sleep, late bedtimes, difficulty falling asleep, night terrors, recurrent night awakenings, laughing or talking when waking up at night, light sleeper, broken sleep, insufficient sleep hours according to age-appropriate levels, prolonged daytime napping especially for children older than 4 years old perhaps and other common sleep issues. This affects the child’s development and behavior. Sleep issues also affect siblings who share a room. Subsequently, parents are also affected by the continuous nights of broken sleep. Broken or lack of sleep in adults can lead to depression, irritability, stress, affects our ability to cope and think, it affects our work, home and life in general.

Maya had sleep issues from the day she was born. A newborn usually sleeps 20 to 22 hours a day, Maya was awake for 12 hours a day for the first 3 weeks of her life. During the day she would fall asleep for 20 minutes than wake up howling and screaming. An hour later she would sleep for another 15 mintues and so on all day long. She would wake up every hour at night to be fed until she was 2 months old, it improved slightly as she grew older. We would take 1 hour just to get her to sleep, by rocking and cradling non-stop. She managed to go to sleep by herself and sleep through the night when she was 1 years old, this lasted for 12 months. A whole year of uninterrupted sleep for Paul and I, however during the day we still had to deal with her increasingly difficult behavior.
However, the night terrors and broken sleep started when she was 2 years old. She would alternate between inconsolable crying and screaming one night, and the next night she would wake up at 2am talking and singing to herself in the dark till 5am. We tried many techniques to get her back to sleep such as giving her more milk, changing nappy, rocking and cuddling, then not giving her milk in case it reinforced her sleep awakenings etc but nothing worked. This pattern continued pretty much every night for the next 8 months. At this time, Maya was 2y8m – she was diagnosed with mild to moderate Autism Spectrum Disorder.
We immediately put her on the gluten-free and casein-free diet. Incidentally her sleep improved, she would sleep 12 hours straight. Though the night time talking and singing would recur at times. Only when we started treating her gut issues especially yeast treatments that she now sleeps well through the night. We also found out that the girls would wake up if the room was too hot or too cold. We also refined her diet further by eliminating IgG reactive foods including soy and eggs, reducing sugar, artificial flavorings including MSG and colorings. We reduced allergens and dust accumulating things in their bedroom, ripped up the filthy wall to wall carpeting, boarded up the old centralized air conditioning duct which was moldy and the thermostat control was broken, installed an air purifier and a new air conditioner. We used melatonin especially in the first few months of early biomed, it helped but only to a certain extent.
In biomedical circles, sleep issues in Autism are commonly related to diet and gut disorders. Treating sleep issues include the GFCF diet, reducing food sensitivities, probiotics, anti-fungal, magnesium, digestive enzymes, melatonin, treating any gut issues including inflammation, constipation and reflux. Constipation, allergens, yeast overgrowth, food intolerance and illness are common culprits. It would help to reduce stimulating activities such as boisterous play and watching tv just before bedtimes. Not eating too close to bedtimes may also help as well as more physical exercise during the day.
Melatonin will help regulate our sleep cycle, however this is only a temporary solution. It will only help to a certain extent, it is not a substitute for healing the underlying medical reasons for sleep issues such as GI disorders. All the melatonin in the world will not help a child to sleep if the child is experiencing stomach discomfort, tummy pains, yeast overgrowth or allergic reactions.
Yasmin slept well throughout until her bout with Rotavirus. Since then, her night awakenings have been constant. Since the girls now share a bedroom, this is affecting her sister’s sleep too. Her sleep has improved considerably since refining her diet together with gut treatments. Most importantly, we dealt with her recurrent bacterial infections as this affected her sleep and other aspects of her behavior. She has slept well for the past couple of weeks uninterrupted, but last night she was up from 2am-5am talking and singing. Looking back, we realized that yesterday we took her out for lunch but not Maya and perhaps the food was prepared with MSG or something that affected her. Usually the girls only eat home-cooked food. Hopefully she will be ok tonight.
In the past 1 year, both our girls have had several night awakenings, but we could always trace it back to either eating too much sugar, yeast overgrowth, constipation, bacterial infections, infractions in her diet or due to illness such as cold, flu and fever.

>16 Month Journey

>
This is our biomedical journey in the past 16 months – please see below for list of supplements that were added on as the months went by and the steps we took with our little girl.


June 2008 – Maya was diagnosed with mild to moderate Autism at 2 years 8 months. Implemented GFCF diet. Able to make occassional 1 word request within 1 week.

July – December 2008 – started home based ABA at 6 hours a week. Eventually this grew into 18 hours a week maximum by December. GFCF diet was refined over the next 6 months, but still included soy. Maya was able to make occassional 2 word request, less hyper and better mood. No other biomed intervention except GFCF diet.

January 2009 – Hospitalised with Rotavirus. Started center-based ABA for 30 hours per week. Change to rice milk, started Super Nu Thera, probiotics and Cod Liver Oil.

February – March 2009 – consulted with Dr Sundardas, he only required us to do hair analysis. Started calcium, zinc, 3 Billion CFU non-refrigerated probiotic, Nordic Naturals cod liver oil, Efalex, Intestamine, NTC Detox, Zeolite, digestive enzymes, ASD Plex, Super Nu Thera. Implemented the Blood Type Diet as per recommendation. After 2 1/2 months on his protocol and despite my insistence that we do more to address Maya’s unresolved gut issues, Dr S recommended we start on B12 shots instead. So we decided to change to another doctor as I feel that there were gaps in treatment for gut issues. Atec score of 78

April 2009 – consulted with Dr Erwin Kay. Asked us to do OATs, IgG and Comprehensive Stool Test. Dr Erwin accepted the previous hair test result. Revert back to basic GFCF diet, started supplements based on basic gut treatment with prebiotic, multi-species probiotic, lactobaccilus probiotic, melatonin, l-glutamine (for leaky gut, but later had to stop because of bad regression), super nu thera, cod liver oil.


May 09 – added on taurine, digestive enzyme, phenol assist, glutathione lotion, 1 month course of anti-fungal Diflucan, epsom salt bath, n-acetyl cysteine, zinc. Changed to organic food.


June 09 – started 2 week course of Cedax antibiotic, rotate probiotics to Kirkman’s Probio Gold, 2nd course of Fluconazole antifungal, added calcium/magnesium combo, vitamin C, vitamin E, Methyl B12 (every 2 days, adjusted dosage for next 1 month) and Ketaconazole cream for her itchy and flaky feet (2-3 weeks only). Replaced old carpeting and air conditioning in the girls’ bedroom. Removed all dust-collecting and mold-producing items and installed an air purifier.


July 09 – added on Interfase, sodium butyrate, MSM glucosamin cream, AminoPlex (all these 4 based on Dr Westaway’s consult and monitored by Dr Erwin. Eventually had to stop AminoPlex due to regression) more readjustment of dosage for existing supplements. Added Dual Detox and Valtrex anti-viral (eventually we had to give up on Valtrex because we couldn’t get Maya to take it), 2 month course of Nystatin, Candex, increase magnesium, s.boulardii, OSR (upon Dr Westaway’s consult, but product ordered and approved by Dr Erwin). Replaced all non-stick cookware, reduce microwave use and plastics.


August 09- We did additional tests for Essential Fatty Acids, Plasma Amino Acid and kidney and liver function. Changed to Zinc picolinate and Ester C (based on Dr Rina’s consult), change to separate Calcium and magnesium (not combined), magnesium sulfate cream, 2nd course of Cedax antibiotic, another course of Fluconazole (both girls at this time had recurring gastro issues with bacterial infections and colds & flu), change MB12 to daily shots, rotate probiotics to Klaire Labs Therbiotic complete. Only use organic and chemical free cleaning products for household cleaning as well as body care including shampoo and soaps.


September 09 – Added Culturelle and increased probiotics due to last month’s infections, gut issues and antibiotic use. Increase MB12 to 0.05, change from SNT to B6 P-5-P, change to Magnesium glycinate powder, rotate digestive enzyme with Trienza, added ViraStop, SAMe200, Folate Acid, and adjustment of supplements based on new test results. Psychological assesment shows great improvement across the board, Atec scores down to 30 from previous 78 in April 2009.


October 09 – Maya turns 4 years old. Added TMG (upon Dr Anthony Underwood’s consult), readjust MB12 to alternate days, change from Candex to Candidase, increase ViraStop dosage (very little change due to Dr Erwin being away) Replaced all milk bottles to BPA free.


Who knows what next month will bring. It is undeniable that Maya’s progress has been on fast track ever since we had Dr Erwin to guide us, we couldn’t have gotten this far without him.

>How To Give Supplements

>
When doing biomedical intervention, it consists of multiple tablets, capsules and liquid supplements. The child has to take up to 20 different supplements a day, for some many more. And getting your young child to take it all is a herculean task, even more difficult when dealing with a child with Autism Spectrum Disorder. No amount of rationalizing, bribing, encouragement and begging would force our kids to open their mouths, and if they do, they end up spitting it in your face. Some children including Maya are so resistant to taking anything remotely suspicious, their long-term feeding issue makes taking supplements even harder. And I don’t blame her, those supplements tastes horrible!

When first starting biomedical, we had a really tough time with Maya. We found out very quickly that ‘tough love’ did not work with her whenever we forcefully fed her with the supplements. Apart from spitting, she would usually end up vomiting everything in her tummy, she would cry and rage for a long time.Because our girls are physiologically too young to be able to swallow capsules and tablets, we end up opening a capsule and dissolving it into milk or juice. Previously I would grind up tablets in my lesung tumbuk, however I have since found pill crushers which grinds it up into a very fine powder. We tried feeding the liquid supplements with a spoon, but that turned out to be a disaster too. She would knock the spoon out of our hand, precious supplements flying everywhere.
We experimented by mixing and hiding it in milk or juice. Tried different coloured sippy cups, drinking from a straw, only putting in 1 capsule into a big bottle of milk, hiding it in rice, mixing into peanut butter, mashed bananas, we tried everything. It took us a long time to find a groove; we now know which supplements are better tolerated taste wise in milk, which ones are better in juice. Maya is very sensitive to taste, she would refuse to drink the milk constantly when we added in supplements. We wasted so much money, milk and supplements down the drain. We would start very slowly, adding just 1 supplement to the milk, and at only a quarter of the dosage. We would then slowly build up the amount till she can tolerate the whole dosage. Then we would add on a 2nd supplement and start at 1/4 dosage. This worked very effectively for us, we can now add 3 to 4 supplements into 1 bottle of milk.
There are supplements that turns the milk pink or green, we would give these supplements in milk in the middle of the night while they are asleep. We also find that the girls are more tolerant of stronger tasting supplements when drinking it in milk when they are deeply asleep. We take turns to feed the girls their milk at midnight, for now this is what works for us.
I have melted precious organic gfcf chocolate, mix into some rice crispies for some crunch and add the supplements in. And chill them in tiny paper cups like candy. It worked beautifully for 1 day. The next day onwards she refused anymore chocolate. Because both the girls don’t like soft slimy food, I couldn’t try adding supplements to jelly. One desperate day, I mixed some of the more bitter supplements into ice cream – this worked the best! However, there are no GFCF ice cream available in Malaysia so the thought of giving Maya dairy-filled ice cream everyday went against our GFCF principles. I’m still considering buying an ice-cream maker, hopefully I can create a delicious homemade GFCF ice cream.
I bought a box of colorful straws and this worked wonders in getting Maya to drink the supplements mixed with juice in a cup. Everyday she would request for a particular colored straw and will happily drink the supplements. She may not drink it all in one go, we would still have to chase her around the house and coax her to drink it all up bit by bit. Slow but steady I say.
We enlisted the help of our wonderful ABA team to start a tolerance program for taking supplements with a syringe. We supplied the team with a large box of 5ml syringes and the team got to work. After a couple of months into the program, it seemed to me to be a complete waste of time and precious syringes. Maya would only tolerate taking water from a syringe if it was from a therapist, she refused to do it with us at home. It has now been 3 months since Maya started the program and this week we managed to give her supplements in a syringe! We have managed to give her 3 different types of supplements in a syringe, but there are still 20 more to go. Perhaps next year we will do a program to teach her to swallow tablets using ABA.
Maya has always had an intense fear of syringes, ever since very young. She would run away screaming whenever she saw a syringe, she would be so scared and agitated she was inconsolable. We still have to smuggle in supplements in milk bottles at midnight, however there has been great progress.
For any parent feeling frustrated trying to figure out how best to administer these many supplements, only know that the gains and benefits are enormous. Every precious supplement that you successfully manage to give your child is another step closer to improving his health and mind. By being creative, consistent and resilient, you will find what works best for your child.
Don’t feel discouraged, you can’t compare your child to Maya. Don’t compare your child to the neighbor’s son who learnt to swallow tablets at 4 years old. Don’t compare your child to your nephew who’s compliant and meekly takes any vitamin given to him. Each child has their own preferences, each child has their own diagnosis to battle with. Also remember that it took us 9 months to get to where we are now. It has been some time since Maya rejected a milk bottle complaining of the taste. I feel an enormous sense of pride for Maya, allowing us to put the much hated syringe in her mouth and swallowing those nasty tasting supplements. She is the one who has worked the hardest, her accomplishments and improvements are testimonial to her strong spirit and amazing strength.

>KL Biomed Forum

>There is now an active forum on Yahoo Group where Malaysian parents can post queries or information regarding biomedical intervention. KL Biomed is a forum for parents of children with Autism Spectrum Disorder who are doing biomedical intervention in Malaysia. Members can post questions to the groups and any member can reply. Group members are also welcome to post relevant materials and information with regards to biomedical.


This is a private group intended as a form of communication and sharing of knowledge with other parents. Any advice given in this forum is not to be construed as medical advice. So far, we have had many postings and queries relating to diets, medical testings, nutritional supplements and DAN treatments.


>All About Yasmin

>
My second daughter Yasmin is 2y5m, she was a happy easy-going baby, she fed well, slept through the night and pretty much a normal child. Her language and cognition is very good and she’s very affectionate. However, for the past 6 months we have noticed a gradual change in her behavior, she is often cranky, shows rigidity in behavior, uncontrollable at times and rarely smiles. Also, she started to have sleep problems, is now a very fussy and picky eater, chronic constipation and shows a lot of abdominal pain. We also noticed some stims such as tip toe walking, slight repetition in language and motion, always tapping and knocking on walls or furniture, she is always climbing on the arms of the sofa, straddling it while rocking her body and grinding her pelvis against it and we have noticed some eye stims recently.

However, throughout all this, her language and cognition has always been very good. But Paul also pointed out that we have not seen any developmental gains in the past few months, she is still at the same developmental level as she was 6 months ago. Because of what we went through with Maya, we also understand the genetic susceptibility of siblings getting the same condition. So we took steps to reduce the possibility of it; we put Yasmin on the GFCF diet for the past 9 months, she is also soy-free and egg-free. Her diet is organic and pretty much the same as it is for Maya. We did not give her the MMR however she did receive some vaccinations prior to it.
In January 2009, both girls were hospitalized for Rotavirus. Both Dr Erwin Kay and Dr Rina Adeline suspect that her regression was induced by the infectious and bacterial disease. There are many causes of Autism, we now believe that the Rotavirus tipped her over the edge. I also believe there she also contracted other countless bacterial and viral co-infections that were never tested, identified or treated for. We were on holiday in Phuket and Paul took the girls to play under the water sprinklers in the hotel garden. I kept asking them to stop because the water smelled putrid, plus the Thai gardeners kept shouting and gesturing at them to get away from the garden. We later found out that the filtration system is broken and water contaminated from the septic tank was used. Yeah, dumb but true. 2 days after we came back from Phuket, first Yasmin and then Maya was hospitalized. They were treated for Rotavirus, but it’s interesting to note that they were not tested for other types of infections or viruses, the doctor only tested for Rotavirus.
We did the IgG Food Intolerance test and the Comprehensive Stool Analysis. Her IgG levels are elevated with multiple food intolerance, she also has leaky gut, there are multiple bacterial infections, yeast overgrowth, digestive enzyme deficiencies, gut inflammation, oxidative stress and others. Her medical prognosis is chillingly similar to her sister’s, in fact some of her test results are worse than Maya’s.
Both DAN doctors confirmed that Yasmin is either borderline ASD or gradually declining towards the Autism Spectrum. We don’t know whether it will be Autism, ADHD or Aspergers, but I’m not waiting to find out. We are doing all we can to stop it now, starting with her gut issues. We have not done a psychological assessment, mostly because of time and financial constraints, but also we do not need a clinical psychologist to tell us what we already know. Also, some people including doctors are very quick to judge us as overly-worried parents because Yasmin’s language skills are amazing. And it’s unfair that because for the 5 minutes someone observes her, they come to the conclusion that she’s fine. As if that can be construed as a `qualified diagnosis’.
Yeah, but did they ever consider that during that 5 minutes, she is so engrossed with a new toy, chatting happily away, laughing and everyone is giving in to all her demands that she is not likely to throw a tantrum? No one else would know that it takes us such a long time to calm her down or redirect her when she’s in one of her tantrums and rages? No one else has to get her to stop humping the furniture, if they did then they’ll know that this is not `normal’ behavior. No one outside the family has ever experienced a night when she wakes up at 3am and wants to play for 3 hours. It’s come to point now that sadly, our officially-diagnosed ASD child Maya is so much easier and better behaved than Yasmin.
As parents, we shouldn’t let ourselves be blinded by Yasmin’s cleverness and precociousness. I could never avoid noticing some of her abdominal pain behaviors, she would insist on me holding her tummy, she would lean over tables and bed corners, pushing her tummy into it. I can’t help but notice that she is constipated for 5 days, her stools are always either very hard and pebbly or runny and soft. Her tummy is distended and she is extra irritable and cranky during constipation days. Her constant knocking and tapping is a sensory issue and also signs of calcium deficiency. Yes, a lot of her behaviors are considered normal 2 year old behaviors, but all together at once and there’s a sibling with ASD? Come on, I’m an Autism Warrior Worrier Mummy, you can’t fool me!

>No Magic Pill

>

Many parents expect miraculous results, especially with the GFCF diet. And feel like giving up on biomedical altogether before they’ve even gotten past the 1st step. But please remember that the diet alone is not biomedical. There is no one magic pill or treatment, you need to implement a combination of diet, supplements and treatments.

GFCF diet is only a baseline diet, it is important to stay on the diet as it is the cornerstone for biomedical treatment. You’ll need to do the IgG Food allergy test to determine any food intolerance. Depending on your child, he may need to do the Low Oxalate diet, the Feingold Diet, the Specific Carbohydrate diet, etc – you will need to do the test to determine which diet is the best for your child.

The OATs urine test will tell you your child’s nutritional status. This test will be your guideline as to what vitamins and minerals you need. You must resolve any gut issues, even if there are no signs of gut problems. If you are not able to detect any outward symptoms of gut dysbiosis, the comprehensive stool test will show you markers for any inflammation, leaky gut, fungal overgrowth, any lack of beneficial flora etc. Please remember that 90% of children with Autism has gastrointestinal dysbiosis. There is a strong gut-brain connection, so healing the gut should never be overlooked. Next, your doctor will put your child on various other 2nd tier supplements based on your child’s needs. What works for Maya may not work for you because every child is unique.

I strongly urge you to do your medical testing with a DAN! doctor, otherwise you may find that the tests you’ve done are inconclusive or the wrong tests. A doctor who has not had any DAN! training will not know what tests to do or which labs to order the test kits from.

We have done hair analysis for heavy metals, IgG Food Allergy test, comprehensive stool testing and Urine Organic Acid tests. Based on the test results, Maya’s list of supplements include multiple vitamin support including B6, Vitamin C, Vitamin E, Magnesium, Zinc, Calcium, cod liver oil, B12 injections, . Up to 50 Billion CFUs of probiotics daily, prebiotics, 3 different types of digestive enzymes, Taurine as Amino Acid support. We do daily Epsom Salt baths to support the sulphation pathway, apply Glutathione lotion daily (glutathione is the body’s key detoxing element), melatonin for sleep, mild detoxing agents which includes chlorella and sulfation support.

When we first started methyl B12 shots, we did 0.3ml every 2 days. But we did not see the amazing improvements that we usually hear of. Upon consult with Dr Erwin, he advised us to increase the dosage to 0.4ml. The changes were amazing. With other supplements, we’ve had to adjust or reduce dosage depending on Maya’s reaction.

We are currently on our second anti-fungal treatment/yeast protocol, we have done a short course of antibiotics for bacterial infection and are about to start anti-viral treatment with Valtrex. Our next steps include Oxidative Stress support treatment and further testing for Essential Fatty Acids and for Red Blood Cells Elements test.

We are still trying to find amino acids that Maya can tolerate. Apart from taurine, Maya has regression whenever we’ve put her on other amino acids including glutamine. Detox agents such as Zeolite also caused regression. With some supplements, we are able to see improvements immediately and able move fast on to the next supplement. With some, we’ve had to go very slowly.

If you wish to implement an effective biomedical treatment for your child, you need the help of an experienced doctor who has been specially trained by DAN. You cannot expect a typical pediatrician, GP or other specialists to help you with this if they have not been to a Clinician’s Seminar run by Defeat Autism Now!.

There will be ups and downs with any treatment you undertake, nearly all supplements and medication you take will have side effects. It is up to you to learn what constitutes temporary regression and to see the signs when a particular supplement is not working.

Please do not give your child random supplements based on someone else’s treatment protocol, you need an individualized treatment plan based on your child’s unique biochemistry. Just as every child’s Autism symptoms are different, so are the biomedical treatment protocol. The guidance of an experienced DAN! doctor is very important. You will need to try many supplements and treatments and find the right combination for your child. You may even need to find another DAN doctor that suits you. We personally have gone through 3.

There is no magic pill that will cure your child, however there are many therapies and treatment options available. In order to find which works best for your child, you need to give it a try. And keep going to the next level.

>Almost One-Stop Shopping

>We’re all too busy with out daily lives to go running all over town to find GFCF and organic foods. The closest to one-stop shopping for all these items is probably the Lower Ground floor, The Gardens shopping Mall (connected to Mid Valley) Right next to each other is VitaCare Pharmacy and Just Life (Just Life is closed for renovation from 1-4 July 09, but call to check) and right across these 2 shops is Cold Storage.

Vita Care Pharmacy LG-220 – stocks Ogran range of products – bread mix, cake mix, cookies, pasta. Also Epsom Salts if you’re doing the baths
Just Life Organic Shop LG-208 – Huge range of organic veggies, organic cleaning products and Epsom Salts
Marketplace by Cold Storage LG-229 – – Biologique & Freedom Foods brand for cookies, breakfast cereals. Lay’s potato chips. Possibly Pacific and Aussie Dreams rice milk
Another favorite one-stop shop is Village Grocer in Bangsar Village 1. They stock Red Bob Mills (bread mix, pancake mix, brownies mix, choc chip cookies mix, gluten-free flour mix) Biologique (several types of breakfast cereals & breakfast bars) Freedom Foods (3 types of cookies), Pacific Rice Milk (plain and vanilla), Aussie Dreams Organic Rice Milk (plain only), Ogran (only bread mix), several different types and brands of GF pasta, a small selection of Japanese rice crackers, Lay’s potato chips and a good selection of organic vegetables and chicken. They even have different cuts of organic beef, including mince.

>How to Be a Domestic Goddess

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The best source of food & nutrition is always home-cooked meals with organic produce. But not all mothers are full-time domestic goddesses. And trying to achieve GFCF whilst juggling family, careers & part-time medical research necessitates us taking several shortcuts. High-fives to those mums who are able to do all that and more. But for us mere mortals, I’d like to share some of my tips and tricks on faking it as a domestic goddess.
We don’t get as many brands as in the U.S especially of the gluten-free, casein-free and organic variety. However, there are several substitutes that we’ve found in our Malaysian supermarkets & health food stores. But I find that most of the imported products are more easily found in expat-oriented shops like Village Grocer in Bangsar Village 1 and Cold Storage in Bangsar Shopping Center. My other favorite shops include Body Basics in Bangsar Shopping Center and Vitacare in LG, The Gardens. Here’s a few of my girls’ favorite snacks & GFCF substitutes;
Freedom Foods – they have several types of cookies and breakfast cereals
Biologique – cornflakes, rice puffs & other cereals
Ogran – bread mixes, cake & muffin mixes, vanilla & chocolate ready made cookies, pastas
Red Bob Mill’s – bread mix (contains yeast), brownie mix, pancake mix & gluten-free flour, chocolate chip cookie mix (I would make up a batch, bake 1/3 and freeze the rest. When needed, I let it defrost, get the kids involved in rolling it into balls & press into the baking tray)
Lay’s Classic Potato Chips – only Classic flavor, the other flavors contains non GFCF ingredients
Pacific Rice Milk – Original & Vanilla flavor rice milk (I can no longer find CF chocolate milk)
Aussie Dreams Organic Rice Milk Original Flavor – RM2.00 more expensive than Pacific, but it’s organic. Only comes in original flavor.
Japanese rice crackers – there are many brands, read the labels carefully
Frozen french fries – many brands & again, check the ingredients. Chicken nuggets & potato wedges are usually coated in wheat.
Whenever in Singapore, I stock up at Brown Rice Paradise in Tanglin Mall. They stock many brands of GFCF foods, organic cleaning products & personal care products. I try to cook home-made meals for breakfast, lunch and dinner. However, when going out or for teatime, packaged snacks are the easiest option. However, a friend pointed out to me recently to watch out for trans-fats. Yes, there’s always something to watch out for.
Paul is Australian, I’m Malay and our maid is from the Philippines. So with 3 adults from 3 different countries and 2 little girls who are very picky eaters, planning a meal is pretty challenging as every one has different preferences. Starting the girls on GFCF was pretty hard initially, but as time went by it does get easier and easier.
Here are some of our favorite crowd pleasers;
Stirfry one dish meal – We would vary the stirfrys with different meats & vegetables. Garlic, ginger, onions, thai red curry paste, lemongrass, galangal, tumeric, soy sauce occassionally or sesame oil for variation. Serve with rice.
Fried Meehoon – pre-soaked meehoon with onions, garlic, chicken & veg.
Local dishes like ayam masak merah, pumpkin & spinach in coconut milk, masak lemak ikan, fried cod fish with tumeric or tamarind, beef curry, dalca, lamb kurma, steamed fish, local chicken & veg soup
Rice dishes – I would vary different types of rice, eg. basmati for veg & lamb pilaf or briyani, jasmine rice for nasi lemak (rice with coconut milk, pandan leaf, ginger & shallots) & fragrant rice for stir fries, local dishes & fried rice, arborio for risottos (Paul makes an exquisite chicken, pumpkin & sage risotto) I’d like to introduce brown rice to the girls diet soon.
GFCF pasta – spaghetti or spiral pasta served with bolognese sauce (organic mince beef, chopped onions & organic pasta sauce) or olio style (olive oil, onions, garlic, mushroom, chicken & zuchinni)
Sandwiches – GFCF bread with fillings such as peanut butter (unless you have peanut allergies) roast chicken with mayo (this used to be a favorite but Maya tested allergic to eggs. I got the egg-free mayo, but the taste is quite tangy, will have to get her used to this) I’d love to introduce hummus or chicken & avocado soon.
I have served lambchops, steaks, roast chicken, chicken with BBQ sauce or roast beef and a side of steamed veg with mashed potatoes for Paul and I but for the girls I serve it with rice. We’re constantly trying to expand the girls diet with some success.
Take it step by step and start with the GFCF first, then concentrate on eliminating yeast & sugars. If you see adverse reactions to soy & corn, target that next. You will never know for sure what diets are suitable for your child until you do the IgG test. There’s Specific Carbohydrate Diet (SCD eliminates most carbs including rice, corn, potatoes), low-oxalate diet, feingold diet, low-phenolic diet and many more which are much more restrictive than GFCF.
6 months ago, Maya will only eat plain white rice, toast and occasionally fried rice. And she would fill up on gluten-free chocolate biscuits, cakes & muffins. Slowly I weaned her off chocolate flavors and sugars and she would get a sugary treat maybe once a week. Also, we make more effort to eat together, setting the table with adult-type plates & cutlery made the girls feel grown up and excited to join us. Doing individual small portions helped, so the girls didn’t feel overwhelmed about having to finish it all. We try to eat the same things as they do, we play games like `Monster Bites’ and ‘Princess Eat’ and ‘Everybody Drinks’ to encourage them to eat more. And occasionally we resort to putting on the video to encourage the girls to sit at the table a bit longer.
So for the mothers out there who are going through the very difficult process of changing your child’s diet and worrying about what to cook and the frustration when your child refuses to eat anything – you are doing one of the most important changes in your child’s life, you will have to experiment with different recipes and you will need tons of patience. Slowly but assuredly, you WILL become a Domestic Goddess of the GFCF variety.