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………
Spectrum Mum in Malaysia 