Category Archives: hypotonia

>Mitochondria, Homeopathy and 15kg….

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>Maya has been struggling with low weight gain for a long time. In 2009, Maya gained only 1kg the entire year topping up to 13.5kg. In 2010 she hovered around the 14kg – 14.5kg mark for the past 1 year. When Maya turned 5 years old in October 2010, she was 14.2kg. With all her hard work, Maya  has lost her Autism diagnosis, her behavior and development skills and age appropriate and she is thriving well at school and socially, However, she is still a picky eater, and even when we manage to feed her adequate meals, she struggles to put on weight. Frequent illness would cause her to lose weight again and again.

Daddy’s Birthday, guess his age…

Maya recently gained weight, she got to 15kg within 1 month! It coincided with our 3 week holiday back in Sydney in December. I weighed her at 14.2kg in early December, when we came back to Kuala Lumpur, she weighed 15kg on New Year’s Eve. It also coincided after I consulted Dr Jeff Bradstreet in November and Dr Michael Beilby in December.

At that time, our main concerns were both girls’ frequent illness, low weight gain and Maya’s fatigue and low muscle tone. We wanted to concentrate on mitochondrial dysfunction, immune dysregulation and revise our chelation protocol.

We consulted with Dr Bradstreet at TRIA, Piyavate Hospital in Bangkok. During Maya’s consult, we concentrated on increasing her cysteine levels by reintroducing N-Acetyl -Cysteine (NAC). as you know, NAC is a precursor to glutathione, the body’s main detox component. Dr Bradstreet emphasized that whilst on chelation, we must always supplement cysteine with NAC. Chelation robs the body of cysteine as well as stripping away minerals. Therefor, his chelation protocol must always include NAC. We discussed his preferences for different brands of NAC, after using Kirkman’s NAC for so long,  we will now be changing to Integrative Therapeutics as soon as my eagerly awaited order comes in.

We also concentrated on Mitochondrial supplements such as CoQ10 and Acetyl-L-Carnitine. We have done all these 3 supplement before at different times for differing protocols, but we had to prioritize other treatments so we had to stop these 3 supplements for a while. There were also other recommendations which we are slowly implementing as well as new mitochondrial testing. He also fine-tuned our existing protocol and helped us move forward in our quest to improve both girls’ mitochondrial dysfunction. Low muscle tone and hypotonia has been associated with mitochondrial disorder (not mitochondrial disease). For these children, zinc, CoQ10 and Acetyl-L-Carnitine would benefit them.

We also inquired whether we should start HBOT (Hyperbaric Oxygen Therapy) but Dr Bradstreet concluded that both girls are doing so well now that the benefits of HBOT on them would be minimal. He went on to explain how HBOT would benefit other kids with other issues. We discussed Maya’s food aversion and her picky eating. We also looked back on her regression on most amino acids. Dr Bradstreet concluded that food aversion may be related to heavy metals, and the regression on amino acids is a sign that she can’t metabolize meat well. The girls naturally eat small amounts of protein anyway, so for the moment we are happy to know that we don’t need to agonize about feeding them more protein. That whatever meat, chicken or fish they are willing to eat is sufficient.

We consulted Dr Beilby in Sydney, with a combination of Biofeedback and Homeopathy, he concentrated on certain toxins, bacteria, parasites and mold. He addressed Maya’s adrenal glands and pancreas as well as identified what medications or supplements were immune-suppressants for Maya. His homeopathic remedies helped to detoxify and address certain issues. We saw some nice gains in Maya and decided to consult with him for Yasmin too. Whenever I start a new treatment or supplement, I always make sure I try it out too. I would not let my girls try something if I myself couldn’t tolerate it too. Both Paul and I were so impressed with homeopathy that we both had a consult individually with Dr Beilby.

Daddy need help to blow out the candles

Both girls were on the homeopathic remedies for several weeks, during which time we saw good appetite, improved bowel movements, improved health, good behavior and improvements in lots of new social skills in both girls. Maya was extremely sociable, her manners and behavior were exemplary to the point that our Aussie friends commented on how well behaved our children are! That was definitely a first. Yasmin in particular did extremely well on homeopathy, her behavior, social skills and verbal communication improved tremendously. Coming back to Kuala Lumpur, after the first week of school started, her teachers commented on her increased vocabulary, how she is now more outgoing and sociable at school, even helping other kids in class.

After 4 weeks on homeopathic remedies, both girls had constipation, Yasmin worse than Maya. Both girls had light colored stools, almost beige and clay like. Maya also had some blood streaks in her stool on 2 occassions. We saw some slight regression in behavior and compliance.We immediately sent an email to Dr Beilby and he recommended us to stop the homeopathics immediately. Both girls’ stools turned to it’s normal color within 3 days, Maya is no longer constipated though Yasmin’s motility issues are back again. Dr Beilby also suggested that at some point, we can resume the homeopathics again when the girls have recovered.

The only other time my girls had beige clay like stools was after drinking Vance DariFree milk for 2 months. That was 2 years ago. 3 days after we stopped the potato milk, their stools went back to normal.

We also had the chance to consult Dr Rina from Indonesia recently. She is helping us with Dr Bradstreet’s protocol and with the urine Neopterin test from Phillipe Auguste Laboratoire and some blood work with our local labs. When we discussed the girls beige stools after 3 weeks of homeopathy and the previous experience with the potato milk, Dr Rina came to conclude that it was related to bile production, biotin and magnesium and an explanation of the biochemistry involved. Needless to say, I had a blank look on my face, most of her explanation went way over my head. But it emphasized to me the importance of biotin and magnesium for both my girls. And to remind myself that homeopathic remedies that detoxify can also strip away minerals. I also then remembered that both girls started grinding their teeth at night a few weeks ago, when we increased their calcium intake, it stopped.

So, for those who are on homeopathy, don’t forget the heavy metals detox principle- if it detoxes heavy metals (whether it’s DMSA, EDTA, natural chelators like Zeolite or homeopathic remedies specifically to detox) it also strips away minerals. So remember to increase your minerals whenever doing heavy metal detox or chelation.

Maya’s turn to blow out the other candle

Dr Rina is pleased with Maya’s progress, before we start chelation she would like to both girls healthy at least for the next 1 month, to maintain their health and if possible for Maya to gain another Kg before we will proceed. I am happy with this slower method, safety is always and foremost in my mind. If my girls are not ready for chelation, that’s fine, there are many other things we need to implement in order to prepare them.

It was Paul’s birthday recently, Maya decided Daddy deserved a home-made cake, so each girl made a cake each with a candle on top. They banned Paul and I from the kitchen, together with the nanny, they made the cake and decorated it. We had a little party at home and  they surprised us with the lovely cakes. Paul is a proud daddy indeed, the girls love him deeply and they show their love every day.

Maya is now back down to 14.7kg. Hopefully Maya will hit the 15kg mark again. We are starting the homeopathic remedies again and introducing the other supplements in slowly. Both girls have started school again after the long Chinese New Year Break and are doing well. We are feeding her lots of small meals and hopefully she can gain a bit more weight. We see more of Maya’s true character emerging, she is affectionate and loving. She is getting much better at drawing and her reading skills are flawless. Most importantly, she has many friends and loves her little sister very much. Recently we bought a toy Doctor’s kit, the girls run around pretending to be doctor and nurse and treating imaginary patients. Most times, Daddy is the patient, it’s funny to see them using the stethoscope, checking temperatures, putting on bandages on their father. Their expression and manners mimic every doctor they have seen. Both girls can’t decide whether they want to be doctors or nurses. I just want them to be healthy and happy, I believe both girls can achieve anything they set their mind to. She’s already come this far in so short a time, who knows how far she can soar……..

>Sitting On A Tack….

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>”If you are sitting on a tack it takes a lot of Risperdal to make it feel better. The appropriate treatment for tack-sitting is tack removal. If you are sitting on two tacks, removing one does not produce a fifty-percent improvement”. Dr Sidney Baker MD

You can also choose to train your child to sit still on a tack by doing months of behavioral therapy. But he will still be in pain.

It’s been 2y5m since the day Maya was diagnosed with Autism. It’s also been 2y5m since we put Maya on the gluten and casein-free diet. And 1y9m since we starting on our biomedical journey with supplements and Biomed doctors. I’m am forever grateful that our choices and decisions thus far has lead us down the path to recovery. Managed recovery for Maya was more than we could ever hope for. When first getting the diagnosis and then deciding what therapies and treatments to choose, we agonize whether it is the right choice for our children. We spend hours on research, ask the advice of doctors, professionals and other parents. But ultimately, it is our decision what we choose to do.

However, at some point, we need to stop doing research and instead apply it. The only way we can determine fully if a treatment or therapy will work for our child is to actually do it. I spent months researching on biomed, now looking back, so many wasted months. I did not need to know everything there was to know about Biomed in order to start it. Luckily, the decision to do the GFCF diet was immediate for Paul and I. We changed Maya’s diet the day she got her autism diagnosis. Right or wrong, we wanted to do something RIGHT NOW. Though the medical community keep telling us that chances of improvement is better the earlier we start intervention, but it usually takes us months just to get a diagnosis and assessment. And more months before we can start behavioral, speech or occupational therapy. But the diet was something that we can start now. Lucky for us, we saw immediate improvement.

I disagree with the current consensus that Autism is a psychiatric disorder. Because Autism manifests itself as primarily a behavioral disorder, many people tend to overlook just how unhealthy our kids are. Our kids don’t only have Autistic behaviors, there are also many physical and medical issues that are brushed aside. Many kids with Autism exhibit hypotonia, low muscle tone, inability to walk well, dyspraxia, low energy levels, some kids I know can’t even last 5 minutes before having to lie down. This to me screams out zinc and CoQ10 deficiencies at the very least.

Some kids have severe feeding issues, refusal to eat, addiction to certain foods especially cheese and milk, reflux, bloating, gassiness, diarhhia and constipation to name a few. In a neuro-typical child, the most obvious conclusion is that this is a patient with either food allergies or intolerance and gastrointestinal issues and the parents would whisk their kid to a GI specialist immediately. But when you bring in a child with Autism to a pediatrician telling them of constipation, they are told that “oh, it’s just Autism” or worse saying that the child is purposefully refusing to poop. Reality check here people, a human being, old or young is not able to mentally will himself to hold on to a bowel movement, especially not for 2 weeks! You should try it sometime, see how far you can go without a bowel movement and see how pleasant you feel during that time.

They are not pooping not because they are Autistic, defiant or trying to exert control over the parents, they are not pooping because they are medically and physically not able to. Constipation is a common malady in Autism, it could be due to many reasons. Food intolerance, inflammation, impacted stool, motility issues, yeast overgrowth,lack of digestive enzymes, Vitamin C and magnesium just to name a few. How many times have I heard “my child is not pooping because he purposefully doesn’t want to”. Have you ever considered that he is not able to? That his stool is so incredibly hard and large that it is agonizing every time he does a bowel movement? That he has been chronically constipated for so long that his bowels are chockful of impacted stool. I have seen Yasmin’s abdominal x-rays, she was literally full of shit! She was so severely constipated that it actually caused diarhhia, known as spurious diarhhia. No wonder she was acting so horribly, her tummy and bowels was in agony. I have dug out rock hard poop out of Maya’s bottom with my fingers, they were as hard as rocks! In light of this, do you STILL feel that she didn’t have a bowel movement for 5 days because it’s a behavioral issue?

If this is your child, go straight to a biomed doctor or a pediatric GI specialist right away. Don’t take Autism as an excuse, if you are constipated for 5 days, you too will act and feel horrible. Laxatives and enemas may be required, but remember that these are temporary solutions just to relieve the symptoms. You need to address the root cause of why he was constipated in the first place. We do get comments such as giving prune juice and my personal favorite “eat more fruits”. Gastrointestinal disease in Autism is a very well known fact. It goes beyond mere prune juice, fruits and more fiber. Plus, many ASD kids refuse to eat fruits and many have salicylates issue so they need to do a fruit-free diet. Maya and Yasmin was only finally able to toilet train and no longer needed to wear diapers after I addressed their health issues.

Many children with Autism have sleep issues such as inability to go to sleep easily, not able to stay asleep for long, the sleep period is too short or my personal favorite, waking up in the middle of the night. They usually wake up for 2-3 hours before going back to sleep, a few just stay quiet or play quietly. But some cry and scream for hours. And some babble, sing and laugh. For parents of children with sleep issues, you know what I mean. Our kids wake up at night every single night for months, some even years. Yes, I have been there and this was by far one of the most challenging part of our lives. Dealing with Autistic behaviors during the day time was bad enough, but having to deal with it from 2-5am every single night for 1 year was too much for any parent to bear. I still get chills down my spine when I recall hearing Maya laughing maniacally in the dark for hours on end.

Please see my previous blogs on sleep issues, the possible root causes and treatments that may help. It is treatable, if your doctor tells you “it’s just Autism” and there’s nothing he can do, then see a Biomed doctor. If your behavioral therapist says that it’s a behavioral issue and to treat it with behavioral therapy, well…. You are most welcome to spend many many nights sleeping with all the therapists in your child’s bedroom, see how far you can get. Biomed doctors understand these things, sleep disorder is treatable.

Some kids have eye stimming such as looking out of the corner of their eyes. For many kids, this is easily treatable with cod liver oil and/or Vitamin A. But please consult a Biomed doctor before undergoing Vitamin A therapy, it can lead to toxicity. Not every child requires additional Vitamin A, most cod liver oils contains Vitamin A and this is usually adequate for our kids.

If your child grinds his teeth or keeps poking their eyes, then it’s usually related to calcium deficiency. Drinking more cow’s milk or formula is not the answer, you need calcium supplementation. Also, cow’s milk is not suitable for our kids. A dentist will say teeth grinding is caused by stress, but seriously, a 3 year old kid with stress? Try some calcium and you’ll notice a difference in a few days.

Children who are always getting sick or has been on antibiotics many times, well, you have to wonder about their immune system. So do kids who NEVER seem to get sick. We are not looking to boost the immune system, we want to have a BALANCED immune system. Most ASD kids have dysregulated immune system or immune dysfunction. Vita
min D, probiotics, zinc and cod liver oil are some of the basic nutritional support for healthy immunological balance. There are many other supplements to address immune dysfunction, but it is child specific.

If your kids have been on frequent antibiotics, you must give him additional probiotics supplement. Remember, antibiotics kills bad AND good flora. The probiotics in yoghurt or yoghurt drinks are not recommended, it only gives very low amounts of good bacterias, it’s not multi-strain and most contain tons of sugar, flavorings and preservatives and not to mention casein. Frequent antibiotic usage also brings to mind yeast overgrowth, when there are no good flora present in the gut, yeast and other opportunistic organisms proliferate. Whenever I bring up the subject of yeast overgrowth with a local doctor, they give me the ‘fungus exists in our bodies naturally etc” speech. Yes, we know that, but we are talking about yeast infections or fungal overgrowth here. It is a well-known fact that yeast infections causes physical discomfort and emotional imbalance.

And when you finally manage to convince them to do the yeast test, and upon finding a positive result, some doctors even refuse to do antifungal treatment! Citing again that fungus exists in our bodies. So why is there a yeast test available in our local labs anyway? If you still won’t treat a positive fungal test, when do you ever choose to treat one? Some argue because the amount is low. Well, if it is positive, that means the amount is far larger than what is considered the acceptable control levels of yeast in the body right? Many doctors have no qualms prescribing antibiotics, but they give me a 1 hour lecture if I request for a yeast test or for antifungals.

Many parents new to Biomed, especially the ones who do not consult with a biomed doctor insist on giving Super Nu Thera. However, many children do not tolerate SNT well. Mainly because it is a multivitamin and mineral combo, many kids require specific nutrients at specific dosages. Thus a combo multivit is not suitable. I much prefer single B6 or P5P formulations. I heard that Kirkman Labs will phase out SNT eventually.

Children who are always licking things, this is usually a sign of mineral deficiencies. In biomedical, we give individual calcium, zinc and magnesium supplements. Maya stopped licking everything after 2 weeks on zinc. Yasmin stopped knocking and patting things with her hands and knuckles after a few weeks on all the minerals.

Maya stopped tiptoeing when we treated her yeast overgrowth. Yasmin only stopped tiptoeing after addressing here chronic diarhhia. Don’t even get me started on aggressive behavior due to bacterial and anaerobic bacterial infections. The improvements we see after treating infections are enormous. Our kids have nutritional deficiencies, immune dysfunction, multiple infections, neurotoxins, abnormal biochemical imbalances, metabolic issues and many more.

If a doctor gives you a lecture of how the GFCF diet or Biomed doesn’t work, I guarantee you that he or she has never been trained in biomed treatments, that they know even less than you do about Biomed. I bet the doctor has never ever recommended a patient to do the diet nor vitamins and minerals supplements. Instead, check how often that doctor prescribes mind-numbing psychotic pharmaceutical medications. I’m sure there are children where the diet and supplements did not help them and only the drugs will help. However, you will never know if your child will be the one to improve or even recover on Biomed unless you try it. Before you go straight to the pharmaceutical medications, try everything. If I listened to the 20 doctors who told me Autism is untreatable and that I should plan for my daughter’s future by putting her in a home for the disabled, I shudder to think how far gone Maya would be now. You have heard the horror stories of the abuse and even murder that goes on in these homes.

Autism is treatable. No matter how old your child is, you can always improve the quality of his life. As Dr Sidney Baker said, remove the tacks.