>The Picky Eaters Club & Smuggling in Supplements…..


Feeding gluten-free bread to the cockatoos

I belong to this club, well, my kids do. They are both extremely picky eaters, feeding them supplements are still a challenge till this day. So my membership is by default, though not by choice. Even with the GFCF diet, my girls still refused to eat the gluten-free bread so easily available in supermarkets when we were in Sydney recently. In my opinion, those breads were yummy! And the GFCF food choices available were plentiful, not just in supermarkets, but even in small cafes and food courts, as more and more Australians are lactose intolerant or have celiac disease. But even then, the girls preferred to feed the ducks, swans, geese and birds in the park with the gluten-free bread.

Many biomed parents face the difficulty of giving their children the many supplements, most of them tastes awful. Until the day my girls can swallow capsules, we’ll still find tricky ways to smuggle them in.  The TACA website had lots of suggestions on how to give supplements to fussy eaters like mine. I’ve smuggled supplements into spoonfuls of food eg. rice, sandwiches, peanut butter, GFCF ice cream. Most commonly, I add them to rice milk, though it took some getting used to. I even feed them rice milk filled with supplements and feed them at midnight when they are sleeping so they are less aware of the strong taste. I even made agar-agar, but they don’t like the texture. Some supplements taste fruity so you can add to juice, fill it in a non-clear sippy cup and encourage him to drink bit by bit throughout the day. I buy fun cups and glasses, even curly straws to encourage them to drink. Our favorite was to have drinking competition, where mummy, daddy, sister, maid and Maya race to drink from our colorful cups and curly straws:-)

Yasmin eating rice with chopsticks

We went out for a Chinese lunch with our Australian family recently, Yasmin gamely ate 2 mouthfuls of plain rice with her chopsticks, though Maya refused to eat anything except a few GFCF biscuits we brought along as an emergency snack. But guess what? I was so incredibly proud of both the girls, for they both sat quietly in their seats, they didn’t scream, cry, fuss or fidget in the crowded noisy restaurant. They  chatted away to Grandpa and Grandma, they were well behaved and happy. And they only played with the iPad and iPhone in the last 20 minutes of the long 2.5 hour mealtime. A huge change from 1 year ago. We usually try to feed them a good meal at home before or after an outing so that we can make sure they eat enough as well as be able to get the supplements in too. It’s a bit harder to add supplements into the food when we’re eating out, also the girls don’t eat much at all so all the supplement would go to waste anyway. Though I usually fill a little pill box with a few capsules of certain supplements and label them, so I can easily add the supplements into the milk bottles when the girls ask for milk when going out.

Notice the broccoli… yes, she will eat it if distracted enough

I also have other unconventional methods which would be frowned upon by parenting experts. We have all met judgemental parents who give us oh so helpful advice on how to encourage healthy eating in our kids, on how to teach them to feed themselves. I have not been successful in getting the kids to feed themselves a complete meal just yet, the best we could do is 3 spoonfuls then they run away from the table. I also find it helpful when we feed them in front of the tv or when playing a game on the iPhone. I am always offered unsolicited advice on how to encourage our kids to eat vegetables, fruits and salads. Yes, there are little kids who eat salads!! Even sushi rolls and other disgustingly healthy wholesome foods, how do these parents do it?

Note the girl next to Maya eating carrots and celery sticks

One mum I met at a kids birthday party has a 5 year old healthy neuro-typical daughter who refuses to eat birthday cake, instead she was happily tucking in to the carrot and celery sticks, strawberries and rock melon!the mum has obviously done something right, but I did not want to sit and chat with her. Especially when my girls refused the fruit platter and sausage rolls, yet were begging for a 3rd helping of the birthday cake. Respect to those mothers, but this mama is sticking to spoon feeding her kids chicken rice in front of the tv. Even though my girls didn’t eat fruit and crave birthday cake, I was more proud of them especially Maya. Considering that exactly 13 months ago, she couldn’t even be able to attend a birthday party, much less make friends with the other kids, join in the games nor enjoy the puppet show. I’d rather have the Maya I have today over a girl who would eat fruits and vegetables but not able to enjoy a birthday party.

 I have melted dairy free chocolate and mix with crunchy GFCF breakfast cereal and mix with supplements then fill into tiny paper cups and chill in the fridge so they look like chocolate.

You can mix into milkshakes/smoothies- mix rice milk, fresh banana and maybe strawberries and blitz it in the blender. If u have a good blender, u can even add ice cubes in, they are incredibly simple to make and YUMMY! I have made cocoa with real cocoa (not Milo or Ovaltine please!) rice milk and a bit of sugar, xylitol, organic honey, maple syrup or your choice of sweeteners. Then mix a few supplements in, though we call them Milo at home:-) Alternatively, there are chocolate flavored soy milk, even vanilla and chocolate rice milk as an occasional treat. Though soy is ideally eliminated from the ASD child diet, personally I do give them soy based treats occasionally. When my priority is to ensure they take a particular medication eg. a course of antibiotics, or additional minerals during chelation rounds, then the soy-free diet is temporarily lifted.

A sure fire way to make sure my girls finish their supp
lements is to mix it into GFCF ice cream. Singapore has different brands and flavors of GFCF soy as well as rice ice creams, in KL you can buy soy vanilla ice cream from the Country Farms Organic shop in Bangsar Village 1, only costs RM10 per 1/2 litre tub if I recall. When we were in Sydney, we found so many brands of GFCF ice creams. Hopefully through growing demand, our supermarkets will start stocking them in Malaysia. I would mix a small portion of ice cream with one or two supplements, then place into small pretty bowls and chill them for 5-10 minutes back into the freezer as by this time the ice cream would have become a bit runny. When adding supplements that are grainy into ice cream, I usually top the ice cream with some colorful sprinkles, the kind you use for baking. I usually get the girls to help with the sprinkling. Then the girls think that the grittiness or crunchy bits are sprinkles:-)I save ice creams only for certain very important supplements, not for daily use otherwise the girls get too much sugar and additives. Worse, they’ll start expecting it daily and it’s no longer a special treat.

My girls loves juice in small popper boxes, so I would usually empty out a small box of her favorite juice, then mix a small amount of juice with water and whichever supplement, mix it well, then syringe it back into the box. Usually I fill it up only 1/4 full, to make sure she finishes it. That way, she’ll ask for more juice. I save the leftover juice for another time and supplement, so the 2nd round I’ll dilute the juice again and add a different supplement in. Syringing it back into the box sounds like a long slow process, but we have done it with great success and have become quite an expert at it, it only takes 5 minutes. Using a syringe with a pointy bit works quite well when adding the juice into the tiny straw hole. You can even try it with small Milo popper box and adding your own homemade cocoa or GFCF chocolate milk, with supplements too.

Advice to parents new to Biomed- this mostly applies to members of the Picky Eaters Club:-)

Starting the GFCF diet- change only 1 thing at a time, you already know how to mix a tiny amount of rice milk with the formula and gradually increasing the ratio. Next step is to choose one other option. For example, if your child LOVES biscuits and cookies, then change that one first with a similar GFCF option. if he’s a bread lover, then change the bread. if she’s a roti canai addict, then try to make your own homemade GFCF roti canai. In the meantime, cut out the MSG, preservatives, additives, food colorings, flavor enhancers and artificial sweeteners. Doing this alone improves your child’s diet and health IMMENSELY.

Giving supplements- introduce only 1-3 supplements a week, forget about the 12 other supplements first. Otherwise the task would seem monumental and you’d be completely overwhelmed. I recommend to start with a quarter of the dosage, firstly to get the kids adjusted to the taste gradually rather than bombard them with the full strong taste. Secondly to determine any bad side effects.

Get your ABA and special education team to help- start the compliance program for taking supplements or medicine by syringe or by spoon now! If your kids are slightly older or more compliant, then get your team to teach your child to swallow capsules now. I just wished I had started sooner, who knows, it could be easier than you expected. You may not even have to resort to smuggling in the supplements, it is possible you could end up with a child who will happily swallow capsules, have faith!

Here’s a few ideas on how my girls would take some of their basic supplements-

Calcium- add to rice milk in the bottle or sippy cup. Kirkman’s Calcium powder tastes very mild, virtually undetectable in rice milk. My girls hate Kirkman’s Cal/Mag Liquid.

Magnesium- Kirkman’s Powder Magnesium Glycinate Biomax dissolves well into any liquid, if added to water it just tastes like sugar water. Contains stevia, but my girls have no issues with it. Just about any brand of Magnesium Glycinate we tried in capsules when opened are gritty and tastes HORRIBLE!

Zinc- both my kids cannot detect zinc capsules when opened and added to rice milk. Zinc picolinate tastes slightly better than normal zinc. But lately, Maya’s taste buds can detect it, so we changed to Kirkman’s Liquid Zinc berry pomegranate flavor. Can be added to juice and tastes fruity.

Fish oil- I have tried many brands, initially when both girls were milk addicts, after I have successfully converted them to rice milk, they can tolerate half teaspoon of fish oil in the milk. As long as the fish oil is added into the milk at the last minute and they must drink it immediately, otherwise the taste turns bad. For the past one year, both girls prefer Prothera Eicosamax. However, experiment with different brands, many comes in lemon, orange and strawberry flavors.

B6, P5P,B Complex and Super Nu Thera- no matter what I do, my girls hated the taste of B Complex and SNT. All of these turns milk yellow. However, B6 and P5P are slightly more tolerable taste wise. For a while, we could add tiny amounts to spoonfuls of strongly flavored foods eg spaghetti bolognese. But now, I find mixing B6 or P5P with TMG in water makes it taste like plain water! But this is only possible once we were ready to introduce TMG. Before that, I would give it in rice milk mixed with magnesium powder, provided the room was dark so the girls can’t see the colour of the yellow milk.

Probiotics- can be added to rice milk, or mixed into food, mild taste. Again, Probiotics are live cultures, so make sure the milk or food aren’t too warm. Culturelle too tastes mild and ok in milk.

Sacchromyces Bouardii- Kirkman’s S.Boulardii capsules when opened smells yeasty, makes milk slightly cream colour and slightly grainy. My girls are fine when added to rice milk. Some kids can’t stand the taste. Klaire Labs’ S.Boulardii capsule when opened are white, fine textured, dissolves well in milk and doesn’t have any strong smell or taste. This is a crowd favorite.

Medicated antifungals/ antibiotics/ antiviral- Diflucan capsules when opened and Augmentin suspension tastes fine in rice milk. For much stronger tasting medications, I would mix into GFCF ice cream.

Vitamin C- usually in tablet or capsule forms, my girls can usually tolerate it in juice, though with Maya, we usually have to keep encouraging her to drink small sips all day long.

As part of the Picky Eaters Kids Club, I have cried over spilt milk, spat out food and wasted expensive supplements. I’ve had to wipe down tables, chairs, floors, walls, furniture and even my beloved iPad when the girls suddenly spat out something where they find the taste offensive. Note to self, never ever feed them yucky supplements when playing with the iPad!
One amazing mum I know mix huge amounts of supplements into a spoonful of coconut oil several times a day, mix it to a paste and feed it to her child by force. Not only is she an amazing and determined mum, she is also a brave woman, for her child is big, strong and is known to be a biter! I nearly choked when I saw her mangled finger which was so badly bitten that she nearly lost her finger. By hook or by crook, this resourceful mother finds creative ways to stick to the strict diet and complex protocol, even when on holiday in a remote 3rd world country whilst on a house boat in the middle of a river in freezing 4 degree Celsius weather! RR, I’m proud to be your friend, you inspire and lead by example every single day.

We all have many different methods that work for our children, you too will find what works best for your child. With lots of patience, imagination and a willingness to experiment, you can find the best ways to feed the supplements to your child.

Happy New Year everyone, may 2011 be better and brighter to us all. Just maybe, by New
Years Eve next year, we’ll no longer be members of the Picky Eaters Club. Say no more to smuggling supplements by 2012, who’s with me?

>A Good Night's Sleep


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………

>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.

>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!

>How to Be a Domestic Goddess


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.