>Post Endoscopy & Colonoscopy…….

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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.        

>Clostridia, Flagyl & Culturelle….

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.