My youngest daughter Min has had issues with bowel movements ever since she was hospitalized for Rotavirus infection over 2 years ago. She alternated between constipation and diarrhea as well as accompanying tummy pains and lack of appetite. Since then, … Continue reading
Clostridia are anaerobic bacteria which exists naturally in our gut. There are many species, some are not harmful though overgrowth of certain clostridia species has many negative impact on the human body. Clostridia overgrowth produces harmful byproducts, clostridia are also spore-formers. Due to several reasons, clostridia overgrowth is also common in certain children with Autism. Clostridia is not easy to test, it requires specialised labs with oxygen free environment to test for it. Our favourite CSA (Comprehensive Stool Test) by Doctor’s Data also tests for Clostridia. Both Maya and Yasmin’s stool test has confirmed clostridia infection at one time or the other. Depending on the severity from 1+ to 4+ (1 being the lowest, 4 being the highest) you can choose to treat it in different ways. An experienced GP or paediatrician can also diagnose it based on clinical symptoms and physical examination. Depending on your doctor’s personal preferences and priorities with infections over other issues, the doctor may or may not choose to treat it.
However, for those who know me well, fighting infections are always a big priority for me. I am also blessed to have a doctor who supports me and shares the same goals and priorities. Namely because any type of infections has such a profound effect on my children’s behaviour. Apart from the health point of view, addressing yeast/ fungal infections, bacterial infections, clostridia, parasites and viral infections are high on my list for treating behavioral issues and developmental delays. Depending on the child, my girls have exhibited the following behaviors, all caused by either one of the infections- tantrums, aggression, meltdowns, crankiness, irritability, shouting, hyperactivity, non-compliance, echolalia, lack of focus and poor appetite to name just a few. Though there are many reasons for tantrums, meltdowns and all of the above behavior, when it is related to very high bacterial or clostridium infections, the tantrums and aggression are amped super-high. After some time, we knew whenever Yasmin had a bacterial infection. And we definitely knew when she had a clostridia infection- she would shout and her voice was always super loud. Even her normal speaking voice was like a megaphone. For Maya, clostridia causes aggressive behaviour, OCD, hyperness and rigidity.
Apart from the behavioral issues, infections also comes with other unpleasant physical symptoms such as diarhhia, constipation, bloating, foul smelling abnormal stool, tummy ache, night awakenings, poor appetite and many others. Not every child may present the same set of symptoms as my girls. Many parents tell me that though their CSA test result shows high bacterial, yeast or clostridia levels, they can’t distinguish or notice any behaviors or symptoms related to the infection. However, their child still exhibit many Autistic traits or behaviors. However, I hope that by treating the infections, it will lessen the Autistic symptoms.
Treating yeast, bacterial, clostridia, parasitic or viral infections does not necessarily mean treating Autism and it’s symptoms. However, you are treating and addressing your child’s health issues, it will enhance his quality of life. Our children deserves good health just like any other child, Autism or not. Infections causes many pains and discomfort, addressing it will lessen your child’s pain and enable him to feel and think better.
Clostridia is commonly treated with Flagyl (metronidazole, the generic version is Norzol) an antibiotic specific for anaerobic bacterial infections. The course ranges from 3 days to 2 weeks, a main-stream doctor will usually prescribe 3 days of Flagyl, though a biomed doctor will prescribe 2 weeks for a child with ASD. Depending on the child, some children respond well to Flagyl, though some may not.
You can also treat clostridia with Culturelle. Culturelle is the brand name for Lacto GG, a strain of probiotics that are particularly effective against clostridia. It is said that Lacto GG is the most researched probiotic in the world. Best of all, Culturelle is also casein-free, compared to other brands of Lacto GG. Some children react better to Culturelle compared to Flagyl. Dr William Shaw, founder of Great Plains Lab, who is also a highly-respected biochemist in the biomed world, finds that Culturelle is more effective in addressing clostridia long term compared to Flagyl. He believes that treatment by Flagyl alone results in 100% recurrence in clostridium infection. However, by either using Culturelle alone or in combination reduces the recurrent infections tremendously. Reason being, clostridia is a spore-former, therefor Flagyl is not effective against the spores itself, only on the bacteria. The spores are the guys that reproduce and make more ‘baby clostridias’. Thus it would make sense to have a treatment protocol that address both the bacteria AND the spores. Please sign up to the Great Plains newsletter at www.greatplainslaboratory.com . You will also receive a free e-copy of Dr William Shaw’s book Biological Treatments for Autism & PDD, a staple in every biomed home.
Some children experience terrible die-off symptoms either from Flagyl or Culturelle or both. Some parents are happy to see bad die-off, thinking that it means it is killing the infection effectively. I would like to dispel that myth, some die-off can be expected. But really bad die-off is not good. It means that the body’s detox system is overloaded, that they are not able to detox or flush out the by-products effectively. At this point, please consult your doctor, you may need to reduce the dosage. On the other hand, no die-off or very mild die-off doesn’t necessarily mean that it is not working. Just count yourself lucky. Remember, if the child seems in a lot of pain, terrible discomfort, not able to sleep for many nights, really bad diarrhoea, continuously crying and mega tantrums, it is a sign to take it down a notch. Activated charcoal, Alka Seltzer Gold and Epsom Salts baths helps to reduce the die-off.
On the other hand, there are some parents who are so fearful of possibly bad die-off, that they prefer to not address the infections. Fungal / yeast, bacterial and parasitic infections causes terrible itch, pain and discomfort in the tummy, bowels, skin, genitals and anus. Please, don’t be put off by the die-off horror stories. If you yourself have ever had a yeast infection, you know how horrific it is to live even 1 day with the itchy scratchy pain in your nether regions, so imagine if it is a systemic yeast infection in your child, imagine the pain and discomfort he is experiencing. If you fear the die-off, consider that the treatment is only for a couple of week, after which you child will be left feeling a whole load better, pain free and itch free. 2 weeks of tantrums and sleepless nights compared to a life-time of happiness. Don’t let your own fear hold your child back. Don’t let your own fear of sleepless nights or dealing with tantrums deny your child the medical attention he needs. If you do decide to take the plunge, and if the die-off is too unbearable, remember that you always have a choice to reduce the dosage or stop it altogether. Having activated charcoal on hand helps. A
t the very least, you can tell yourself that you tried your best for your child.
For my girls, I have tried Flagyl and Culturelle, both singularly or in combination. We have done Flagyl for 2 weeks, then followed by Culturelle at a maintenance dose. I have also done only Culturelle at a therapeutic dose for 3 weeks, then reduced to a maintenance dose. Both have been effective for us, the incidents of recurrence have been manageable provided that we always include a maintenance dose of Culturelle daily. There was a time 2 months after Yasmin’s last Clostridium infection which we treated with Flagyl followed by Culturelle, we ran out of Culturelle. After 3 days of missing it, all the symptoms came back with a vengeance. The shouting and tantrums, poor appetite, night awakenings and severely bloated tummy points to clostridia again. Based on our doctor’s advice, we put her on a therapeutic dose of Culturelle. It did the trick, after the first week, we could see a reduction in the behaviours and physical symptoms. Since then on, I made sure we never ever ran out of Culturelle again.
There were times that therapeutic dosage of Culturelle was not enough and we had to resort to the Flagyl/ Culturelle combo again. But for us, maintenance is the key. Without daily dosing of Lacto GG, the highly opportunistic clostridium WILL come back. Also, we made sure that the girls get high doses of multi-flora probiotics post antibiotic treatment. My current favourite probiotics are Custom Probiotics CP-1. It is 50 Billion CFU, it is casein-free and strep-free multi-flora combination of Lacto and Bifido strains. I also supplement with S.Boulardii as it is also helpful with the fight against dysbiotic flora. If you have a child who is prone to recurrent infections like I do, addressing the immune system imbalance concurrently is a must.
Flagyl is a prescription antibiotic, you can get it from your prescribing doctor. Culturelle comes in 1 Billion or 10 Billion CFU, I always make sure I get the 10 Billion CFU ones. Culturelle is usually stored and shipped unrefrigerated, it comes in specialized foil packaging that protects it during transport. However, it is always recommended to store all probiotics including Lacto GG in the refrigerator once you receive your shipment to ensure potency. Culturelle is available at www.iherb.com, www.spectrumsupplements.com, www.b2bdiet.com.sg and autismrecovery.com.sg. You can purchase Custom Probiotics at www.customprobiotics.com. All the above stores delivers to Malaysia.
A friend reported that her child was diagnosed with anaerobic bacterial infection by her peadiatrician. Based on clinical symptoms and physical examination, he prescribed a 3 day course of Flagyl. I spoke to her about Culturelle and once the course of Flagyl was finished, she put her child on a therapeutic dose of Culturelle. Funnily enough, the 3 day course of Flagyl didn’t seem to cause any die-off nor improvements in her child. However, on the 2nd day she was on Culturelle, her daughter experienced die-off behaviours- irritability, crankiness, fatigue, non-compliance and poor appetite. Take note that this is a neuro-typical child with absolutely no Autistic symptoms.
Finally, her daughter did a massive bowel movement. My friend couldn’t believe how much came out of her child, to the point that she insisted that her husband and the maid look at it. They feared the toilet bowl was going to overflow, gross yet fascinating, they couldn’t look away. She was so concerned for her child, yet the texture and appearance of the stool was normal, the only abnormal thing about it was the amount. It seemed more than even an adult could produce, much less a skinny 5 year old child. However, right afterwards, her child said to her that she felt much better. She then was ready to eat and had a healthy appetite again. It is amazing how quickly a child bounces back. Since then on, she is a big believer in Culturelle. This is a gross story, but something only a biomed parent can appreciate. In fact, when my friend called me about it, she was so amazed by what happened on that day and she knew that I was the only person who would appreciate such a story. And yes, I did.
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………
Every little milestone my girls achieve is another celebration in my home. Big or small, whether it was at age-appropriate developmental milestone or if it came 1.5 years later. Based on many accounts of parents with either neuro-typical or children on the Autism spectrum, their kids were toilet trained (fully or partially or only for daytime) around the age of 2.5 – 3 years old. This turned out to be a struggle for us.
ng that Maya said was correct. We were amazed at her memory and her comprehension, all this after only telling Maya about it once.
As Autism parents, we are subjected to numerous tests and evaluations from doctors, child psychiatrists and clinical psychologists. And these tests are just to confirm that yes, your child has Autism. What next? Therapy and more therapy.