>Post Endoscopy & Colonoscopy…….

>

Yasmin got through the endoscopy and colonoscopy safely. Our thanks for all the well-wishes from many good friends, it gave us strength. Though she was admitted on a Thursday, the scope was scheduled on Friday. When it was time, I carried Yasmin down to the OR, dressed in her little surgical gown. The anesthetist placed the gas mask over her face, she struggled a little but quickly succumbed. Paul and I waited outside for a while and later the doctor invited us in to take a look at the monitor. It was hard to tear my eyes away from Yasmin lying unconscious on the table, meanwhile the doctor showed us several parts of her large intestine.

He did not use a pill-cam even though we requested for it. According to other pediatric GI specialists in the UK and USA, they commonly use pill-cams for young patients even 3 year olds. However, I guess things are different here in Malaysia. Due to the traditional cam scope, the doctor is not able to check the small intestines. However, he did a thorough check on the entrance into the small intestines. The endoscopy was then over, and it was time for the colonoscopy. We then waited outside again, and were invited back into the OR once the doctor had gone into the colon. He showed us her colon and as before, he kindly explained where and what we were seeing and findings he had.

Overall, the up close and personal look at Yasmin’s inside was a revelation. She was absolutely perfect! Everything was pink and healthy as it should be. There were no signs of inflammation, lesions, polyps or anything else out of the ordinary. Paul and I are immensely relieved that she did not have any of the GI diseases we initially suspected. It was good to know that she is not in the kind of awful pain that was reported in many children in GI literature.

Once the procedure was over, I carried Yasmin to the recovery room. Once her condition was deemed stable, we brought her up to her room. It took a long time for her to wake up from the general anesthesia, nearly 2 hours. Even then, we tried several methods to wake her up. We were warned that some patients when coming out of GA tend to act aggressively, cry or act weird. We were prepared for that, but Yasmin was totally fine apart from being groggy, sleepy and a bit uncoordinated, as was expected. The doctor discharged us soon after and Yasmin was happy to be home though tired. We were relieved to be home on Friday night, I was not looking forward to another night in hospital. Caring for a child in hospital is hard enough, even though it was only for 2 days. However, this was during Ramadhan, it was harder to go through it physically, mentally and emotionally while fasting. In the next few days, we expected to see signs of side effect from the anesthesia. However, again we were lucky there wasn’t any lingering side-effects or other concerns.  

The only thing abnormal was that she had constipation and night awakenings for 3 weeks after that. Initially we thought the constipation was due to the scope and it was taking some time for her bowels to get back to normal. However, take note that she had constipation and night awakenings 3 weeks prior to the scope anyway. We had done a stool test for yeast a few weeks before with our pediatrician, it turned out positive. However, we did not address it as we wanted to wait for the scope first in case it affected the outcome of the scope. Because she had recently undergone the procedure, we were advised to take it slow and give her body time to adjust. However, when she was constipated for 3 consecutive days, we gave her Lactulose, a stool softener/laxative. After that, we increased her fluid intake, fibre, vitamin C, magnesium and probiotics. However, it didn’t work. At times we had to use the laxative, to me constipation more than 3 days running needs to be addressed immediately.

I put her on therapeutic doses of S.Boulardii and ThreeLac as anti fungal treatment however there were no changes or improvements. On the advice of our biomed doctor, Yasmin is now on Nystatin and extra Bifido strains of probiotics on top of her usual supplements. Those with constipation may require additional Bifidos temporarily, this worked for both my girls sometimes. Within 2 days, her constipation is reduced, she has a bowel movement every 2 days. Previously she required laxatives. Hopefully, the further we get along with the anti fungal treatment, she will be back to her normal daily bowel movements. And best of all, she now sleeps through the night. Yasmin has slept through the night consistently for the past 1 year unless during times of illness or infections. No more broken sleep for the whole household.      

So, now that our suspicions of colitis has been ruled out, where does that leave us? First and foremost, this is good news indeed. Colitis or any kind of Inflammatory Bowel Disease is terrible in anyone, especially a 3 year old child. Having hard physical evidence that ruled this out is worth it. We are glad that we went through with it, even with all the trauma and possible side effects of the general anesthesia, it was worth the risk. Since the scope has ruled out colitis, IBD (Inflammatory Bowel Disease) and other bowel diseases, the GI specialist based on the symptoms diagnosed Yasmin with IBS (Irritable Bowel Syndrome) instead. IBS is diagnosed based on clinical observations and symptoms, there is no test for it. As usual, I take everything with a pinch of salt. I have read that many Irritable Bowel symptoms are similar to symptoms associated to Clostridium infection. I will look further into this as well as any viral infections, Yasmin regressed ever since the Rotavirus infection, so it makes sense to look into her immune system as well as viruses.

So, how do we treat Yasmin’s issues now? We are maintaining her usual supplements of vitamin C, B complex, minerals, probiotics and cod liver oil. I want to address her immune dysregulation as this is the core reason why she gets recurrent infections. Since we started 4Life Transfer Factor 1 month ago, neither girls have fallen ill. We also give her Klaire Labs Galactomune, a prebiotic formula containing betaglucan  to support TH1 immunity. We also supplement with Vitamin D3, also beneficial to the immune function.

Apart from immune modulating supplements, I also give her Culturelle daily for maintenance against clostridia. I also include Milk Thistle to maintain healthy liver and kidney function. I reintroduced L-Glutamine a couple of months back, this helps with leaky gut. Since we started her on L-Glutamine again, she is much happier, with good appetite and always cheerful. The biggest change of all, previously Yasmin has rarely been as close to her Daddy compared to Maya. She always has great fun with Paul whenever they are playing together but she rarely seeks him out for company. Since restarting L-Glutamine, Yasmin constantly seeks out Paul, always looking for him when he’s gone, she is very loving and attached to her Daddy compared to before. It is heartwarming to see how she dotes on him and vice versa. I al
so introduced 5-HTP to help her with sleep, melatonin did not help when her yeast issues are flaring up. We also never forget Epsom salt baths daily.

I look forward to our next appointment with our biomed doctor for more insights on what else we can do for Yasmin. But for now, we are pleased to have a cheerful, illness-free girl again.        

>Preparing for the Endoscopy

>After procrastinating and indecision for the past few months, we are finally getting the endoscopy and colonoscopy done for Yasmin. The procedure is for diagnostic purposes, rather than a treatment. Hopefully the scope and biopsy will shed more light on Yasmin’s medical problems. It will tell us of any inflammation, damage or lesions in the GI tract.

Yasmin is a mess of GI and Immune issues, every treatment and tests we have done keeps leading us back to her gastrointestinal system. Several doctors have recommended we do the endoscopy and after several consults, the Pediatric GI Surgeon is now convinced that there is due course for the investigation.   

Physical symptoms, behavioral regression, bouts of pain, recurrent bacterial infections, susceptibility to illness, chronic diarrhea for the past 10 months, poor appetite, no weight gain, disturbed sleep- her pain and suffering seems endless to us. So, no more chickening out, we are going through with it.

A part of us are scared that we make her go through the procedure and in the end, the doctor finds nothing is wrong. If so, then we’ve hit another dead end. Another part of us is scared that we WILL find something wrong.

Yasmin was admitted into hospital yesterday, however the procedure will only be done today. The preparation takes 24 hours prior to the scope. Yesterday, I had to get her to drink 1/2 litre of laxatives. It was an extremely hard task, getting her to drink it all.

After that, I had to make her take a sedative. When she finally fell asleep, the nurses did a rectal wash, similar to a colonic irrigation. However, it didn’t totally clear her bowels up as much as we had hoped. So this morning, we had to do the whole thing again. This time she had to drink 1 litre of the laxatives. She did a massive bowel movement (no big surprise there!) thankfully. Then we had to give her the sedative 3 times, after much struggling, spitting and gagging we managed to get enough into her that she finally fell asleep.

The nurses did another rectal wash, thankfully like yesterday she sleet through the whole thing. However, she woke up pretty soon after if was finished. Nothing keeps my Warrior Princess down for long.Throughout it all, Yasmin was happy and cheerful yesterday and today. She is still her loving, affectionate self. She is such a trouper!

Paul was overseas and was only coming back to KL last night, but we didn’t want to postpone it for much longer as we needed to book the doctor, anesthetist and operating theatre beforehand.Though initially I was very apprehensive admitting her into hospital without Paul around yesterday, i kept telling myself not to let my own fears stop me from doing what’s best for my daughter.

Now, Yasmin is to fast until the procedure, she is hungry and cranky. It’s hard to deny her any food or drink, it was even harder getting her to swallow everything required. But if her bowels and upper digestive system are not cleared completely, then the scope may not be successful. The doctor may not be able to view anything, if there was too much stool left even worse the doctor may end up rupturing parts of her due if the view isn’t clear.

My biggest worry is the general anesthesia. I personally had a bad time coming out of the GA, it changed my behavior and demeanor. It took me several days before I was finally myself.

Yasmin is such an amazing girl, her capacity for love and forgiveness is enormous. Even after the times when I had to force feed her horrible meds, after the shouting, struggling and tears,  when all was done, she would turn to me, hug and kiss me. And when I said that I love her, she said “I love you too, Mummy”. If only we can all forgive and forget so easily, the world would be a better place.

I pray for a safe and successful procedure. I hope there are no long term side effects from the anesthesia. Most of all, I hope this will finally shed some light to Yasmin’s underlying medical issues.         

>The Rash Incident…..

>

The past couple of months have been very taxing for our younger daughter. She had several rounds of fevers, colds and coughs on top of her chronic diarrhea which has been going on for 9 months now. There were also 2 absolutely horrendous weeks of hive-like rashes called urticaria. It started from her legs and progressively spread all over her body, the itching intensifying every day. Initially, the rash and itching was isolated, but everyday there was a little bit more. In the first week, with the help of our local GI paediatrician, we managed to control the discomfort whilst investigating the cause. However by the 8th day, my little girl was in absolute agony. She would cry and scream trying to scratch herself and not finding any relief.

This is the first time this has every happened, I don’t recall this kind of rash happening to either girls before. Paul and I felt so helpless, watching our little girl covered from head to toe in huge red welts, her hands and arms were swollen. During that 2 week period, we went to see a doctor just about every single day, we ended up seeing 4 different doctors. It seemed that nothing seemed to help, the antihistamines, painkillers and other remedies or drugs did not reduce the swelling nor provide relief for the itching.

In the 2nd week, for days and nights Yasmin would cry nonstop and madly scratching herself. We used calamine lotion, 3 types of antihistamines each stronger than the previous and other treatments. For the first 3 days there was some vomitting and mild fever. But later, there was no more vomitting but with intermittent high fever that doesn’t recede with ibuprofen or panadol. Only voren suppositories could bring down the fever.We did a blood test for kidney and liver function and mycoplasma, they turned out to be negative, but the markers were slightly elevated in one of the liver function profile.

Everytime Yasmin was not in an air conditioned room, the itch intensified and her fever spiked. The 1st week of rashes also coincided with the day of the conference in Singapore, which Paul and I were looking forward to. We didn’t want to miss hearing Dr James Partington and Dr Kenneth Bock’s talk, it’s a rare opportunity to hear world-class Autisms expert talk for 3 hours each. But neither could I bear to leave my sick child at home even though my parents were willing to take care of her.

Paul and I decided to pack up the whole family and drove down to Singapore the day before the conference. We also managed to get a quick consult with the girls’ regular doctor there and get a 2nd opinion. We managed to keep Yasmin somewhat comfortable though we could see the rashes were still bad.Nontheless, the girls love going to Singapore and especially love staying in hotels. They were happy enough and we didn’t feel too bad about taking Yasmin away on a trip, even though we should never take a sick child travelling. Right or wrong, it was a choice that Paul and I made.

The next morning, it was hard to concentrate on the presentation. I was incredibly tired from repeated sleepless nights caring for Yasmin plus I had bronchitis. God, please forgive me for spreading my germs to the other parents who attended the conference. Though I had heard both Dr Partington and Dr Bock just a couple of weeks before that in Hong Kong, it was still incredibly beneficial. You just can’t learn enough I feel. It was also good to meet new friends and catch up with old ones, though in the back of my mind I was incredibly worried about Yasmin. She was never far from my thoughts even though I was chatting to people or concentrating on the biochemistry lesson courtesy of Dr Bock. Paul was kind enough to stay with the kids and our nanny while I went to the conference first for Dr Partington’s lecture. He made sure Yasmin was stable enough and that he could safely leave them for a few hours with our nanny. Paul managed to join in for Dr Bock’s portion. Our hotel was only a few minutes drive away so we knew that in case of an emergency phone call from the nanny, we could rush back to our girls quickly.

The day after the conference, before we drove back to KL, we also saw a pediatric immunologist in Singapore. We also wanted to make sure that Yasmin would be ok for the 4 hour drive home, to have some temporary solution so that Yasmin won’t be too uncomfortable during the car ride. The doctor was very concerned about her immune system and recommended that we see an immunologist in KL for further investigation. She suspects the fever and rash was a viral infection rather than an allergic reaction. She gave us some medication to control the fever and itchiness. The drive back to KL wasn’t too horrific, thank goodness.

Back in KL, we saw our regular pediatrician again and we also managed to get an appointment with the only pediatric immunogist in Malaysia. They are working together to investigate Yasmin’s condition, namely inflammatory bowel disease and her impaired immune system. Our consults and testing with the immunologist unfortunately could not bring us any closer to a resolution. But by then, he had identified enough that her immune system is compromised and everything led back to issues with her GI disorder. After all, 70% of our immune system lies in the GI tract. Again, the topic of endoscopy had come up.

Yasmin’s rashes and fevers went away after a course of antibiotic, our paediatrician prescribed it because the rashes were so bad that it caused swelling and infection of the fat layers of her skin. The Rash Incidence has been so traumatizing for us that it took me a long time to even be able to talk about it or write about it till now, 2 months later. Since then, based on the recommendations from our doctors, we have taken steps towards getting closer to healing Yasmin. We did an xray which confirmed fecal impaction, thus we put her on laxatives and enemas. This gave her much relief, her tummy was no longer bloated, her mood and behavior improved and her appetite was much better. However, after some time, the symptoms would return. We have also been battling constant colds, flus, fever and coughs. Till now, I dread the rash would return. The Rash Incident was more traumatizing for us compared to her previous hospitalizations, can you believe it?

I also finally had the time to read Dr Andrew Wakefield’s book Callous Disregard. This turned out to be very timely for me, as Dr Wakefield included many case studies of children he’s worked with. There were many references to bowel disease, immune dysfunction, chronic diarrhoea, behavioural issues  due to GI disease, endoscopies, gastrointestinal symptoms – everything that I was going through with right now. It is a huge loss to the medical world indeed and Autistic children worldwide that a gifted paediatric gastroenterologist was struck off the medical register due to biased misrepresentation, government blunders and the profit margins of vaccine manufacturers. Meeting him again in Hong Kong and listening to his lecture also gave me the resolve to go ahead with the endoscopy. Paul and I had many misgivings about doing the procedure for Yasmin, but now our fears have been allayed. I also read again Dr Elizabeth Lipsky’s book Digestive Wellness and anything else that related to IBD and GI diseases.

I am working closely with my pediatric GI doctor as well as the peadiatric GI surgeon who will do the actual procedure. We are in the midst of preparing for the endoscopy and possible colonoscopy, which will also include more consultation, scheduling and booking the operating theatre and anaesthesiologist, blood work and biopsy. All her symptoms and conclusions from the many doctors we consulted points t
owards IBD, Inflammatory Bowel Disease. So now we are STILL in the initial stages, which is getting a proper diagnosis of which type of IBD or another type of GI disease. However, I am hopeful that we are on the right path. Once the endoscopy and findings confirm it, we can then proceed with treatment. What the treatment will be depends on the diagnosis. And if everything comes up negative, I will deal with it when the time comes. Right now, diagnosis first……..

>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………




>GI Symptoms, Abnormal Stool and Endoscopy

>
Yasmin was hospitalized recently, shortly after I returned from the DAN Conference. For nearly 2 days, she was complaining severely of “itchy bottom”. It was driving her insane to the point that she would strip off her pants and nappy in the middle of the night. She cried about the pain in her tummy, always pointing to the same spot. All day long she wept “I’m not feeling very well” over and over again. When she was admitted into hospital, a doctor tried to place an IV drip, however there was difficulty in finding a vein. After much poking and prodding with needles on 2 separate occasions, I demanded that they stop. After all, Yasmin was still able to drink and she was not vomiting or losing fluids, so an IV is not necessary. After all the trauma and screaming over the IV fiasco, Yasmin was still in pain.

The hospital had assigned an unknown pediatrician on Yasmin’s case, however I demanded a Pediatric Gastroenterologist who was familiar with Yasmin. Dr N is familiar with the GI disorders common in Autistic patients and she was aware of Maya’s issues. After physical exam, thorough history, looking over Yasmin’s lab results and much consideration, Dr N suggested we do an endoscopy. I immediately agreed as my research has led me to believe that an endoscopy will shed more light on Yasmin’s issues. Unfortunately, there was not much that the Dr could do in the meantime except to give Yasmin some panadol. It was heartbreaking to see her in pain yet not being able to help.

We were referred to Dr L, a senior pediatric GI specialist in another hospital, as that is where the equipment and facilities for children’s endoscopy are available. Again I had to go through the entire history with yet another doctor. Yasmin’s main issues include behavioral and physical regression after her bout with Rotavirus more than a year ago. Chronic diarrhea presenting soft, unformed, yellow, smelly stools for past 6 months, alternating with slightly better formed stools with dual colour (green/brown), mucous and slimy, with undigested food. She had abdominal pain, bloated tummy, loss of appetite, picky eater, itchy bottom, recurrent bacterial infection, frequent colds, flus and fevers. Dr N as well as 2 of our biomed doctors have recommended an endoscopy as all the interventions that we have done has not shown great improvement. And any improvement we gained was temporary and very short-lived.

Dr L was willing to do an endoscopy and obtain some samples for biopsy. Yet even after being presented with all the history, symptoms, physical exam and recommendations, he stressed several times to me that he will probably find nothing from the endoscopy. He gave me the impression that he’ll do it, but it’s a waste of time because to him, these are all symptoms that will “probably go away by itself as she grows out of it”. Instantly my Mummy Radar went up, I knew well enough that a doctor who was not committed to the patient nor the procedure is not going to be the best person for the job. And unlike the first pediatric specialist, Dr L was not even aware of the gut-brain correlation, nor the well-known GI disorders in Autistic patients! Shame on you!!

Anyone who has read materials on GI diseases in Autism or by Dr Arthur Krigsman in particular, understands the intricacies of doing an endoscopy for a child presenting GI symptoms associated with ASD. You need to know WHERE to look, WHAT to look for and trained to RECOGNIZE it. Paul and I made the decision that this is definitely not the person we want to do an endoscopy for Yasmin.

We also had our first consultation with Dr Kyle Van Dyke. Over the 2 hour consult, Paul and I were impressed at how quickly he grasped Yasmin’s issues. Of the 6 DAN doctors we have consulted, I just realized that only 1 of them has a child with Autism. Not only is Dr Kyle a biomed doctor, he mentored with Dr Elizabeth Mumper for several years, he is a frequent speaker at DAN and other Autism conferences. But most importantly, he also personally experienced the heartbreak of having a child with Autism. He also treats the siblings of children with Autism and has treated his other child too. Hearing his son’s story at the DAN conference, there were many issues that were reminiscent of Maya and Yasmin’s.

He too recommended an endoscopy for Yasmin, however when we explained the situation, he suggested doing an abdominal X-Ray to check for impacted stool. So, this is next on my ever increasing to-do list. He also put Yasmin on Enhansa and several other recommendations. It’s only been 10 days on his protocol and too soon to tell whether it’s a coincidence, but Yasmin’s temper tantrums and irritability has lessened and no longer complains of itchy bottom. Her tummy is no longer bloated and her appetite has improved. How long this will last, we don’t know.

However, we are grateful for any improvement big or small. Giving up is not an option. Letting my baby suffer in pain day in and day out……. do NOT tell me to give up. Do NOT tell me that there is nothing we can do about it. That sort of attitude or so-called advice is not welcomed. You know when someone thinks that they are being helpful and they say to you “Don’t worry, she’s still young”. What the heck does that mean??

So she’s young, is that any excuse not to treat her medical illness? You really think that someday she’ll grow out of it? Most people don’t realize that chronic symptoms if left untreated can be a precursor to bigger and worse diseases when the child is older. Now, don’t you think as a parent that it is our responsibility to ensure our child’s health? The earlier you treat it, the better their chances at recovery. Why in the world should I wait until it’s too late? I mean, seriously!

Etiquette lesson #23 – if a friend or a family member has a sick child, do not say “Don’t worry, it’ll be fine.” A parent can’t help but worry and we don’t know if it will be fine. Instead say “I’m so sorry to hear that. Is there anything I can do to help?”

For those who know me well, I will never keep fighting for my girls. The words “No need to do anything, she will grow out of it” is not in my vocabulary. Yasmin deserves to know that Mummy will always do what’s right for her. I WILL make her feel better, by hook or by crook. If I can recover 1 child from Autism, I can certainly help ease Yasmin’s pain. I will I will I will………