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DS15 has had GI pain and GERD since December 2012. Ironically the symptoms started when we were in Florida for the OCD program at Rothman. So we were there to fix one problem and came home with another.

 

Since December the following tests have been done:

 

Metametrix Stool Analysis - only showed low Elastase (pancreatic enzyme) so he's taking digestive enzymes now

H. Pylori blood test negative

C Diff blood test negative

C Diff Stool negative

H Pylori stool negative

Colonoscopy/Endoscopy showed a hiatal hernia but nothing else remarkable (and biopsies were negative for H Pylori)

Abdominal CT scan negative

 

He's taking Dexilant (proton pump inhibitor) that is sort of helping with the GERD, but I learned this can eat up B12 so this is not a long-term solution.

 

I know you are all thinking OCD restrictive eating, but this is not the case. He simply has abdominal pain when he eats and does any form of physical activity like climbing stairs.

 

He has lost 10 lbs. since February. He is 6'2" and weighs 126 lbs.

 

He is IGM positive for Mycoplasma, has elevated strep titers and positive for WA-1 Babesia. He has a Hickman line for IV abx, but we stopped all abx and antifungals 3 weeks ago to see if they were causing the GI distress.

 

Without resorting to an NG tube, how do I get calories in him? We have been strictly gluten and dairy free for 4 years.

 

 

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Just brainstorming, but was there any smell of mold at Rothman? Have you checked his TGF-Beta 1 blood test to see if inflammation is causing it?

 

Ever since my son started with PANS he has had stomach pain after eating and some nausea. The more treatment for lyme etc. the better his stomach felt until his last PANS flair and it came back immediately. The pain has slowly decreased after that until he started with a treatment that can cause inflammation and it is bothering him again.

 

So it could be his PANDAS reacting with inflammation to strep or reacting to biotoxins in a mold building.

 

Best wishes on healing!

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  • 2 weeks later...

Thanks for the ideas. He does take digestive enzymes. The pain is sometimes not present in the morning so he will he breakfast. But it starts 1 hour after breakfast and gets progressively worse throughout the day. Even wakes him up at night.

 

JuliaFaith - I am suspecting a mold exposure in our rental home. Do you think if he was exposed to mold in December that he would still be holding onto biotoxins?

 

He was started on TPN on Saturday since he lost 2 more lbs. Not where I thought life would take us but he is wasting away and we had to head the weight loss off somehow.

Edited by mdmom
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Did you ever try the IV C with this particular child? My friend had similar stomach issues while taking Alinia and they stopped with the addition of IV C and IV glutatione and she is now able to tolerate Alinia. It took a month for things to improve.

 

I have also noticed with Chelation 'too much dumping of heavy metals' I get a gagging reflex, lose my appetite and started vomiting. My body was dumping way too many metals, too quickly. Have you checked him for heavy metals? Or his Thyroid?

 

Plus when did you start the enzymes, how much, what kind and did he get worse when you started. For me, the pancrease dysfunction, glucose and thyroid (mercury can disable thyroid hormone production) are all tied together. I am taking specific "protease" enzyme for pancrease but also working on Iodine deficiencies to dump mercury from thyroid.

 

Anyway.... hoping something I've posted resonates and gives you a couple of things to explore.

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Mold toxins can stay in the body for quite a while-do not know for how long. My son has used 'Health Force-1500 chlorella manna tabs(chlorella pyrenoidosa)' for detoxing for over a year now and is still taking them. He was taking 20 (small) tabs before each meal (total 60 a day). With that said, 'chlorella vulgaris' is easier on the stomach. Chlorella is really good too because it detoxes 90% of heavy metals (according to a well-known dr.) and you get your greens. :) You could start with just one bottle and see how he feels.

 

My dh decided to take these for a year (or 6 mos.?) and he felt great. My turn next!

Thanks for the ideas. He does take digestive enzymes. The pain is sometimes not present in the morning so he will he breakfast. But it starts 1 hour after breakfast and gets progressively worse throughout the day. Even wakes him up at night.

 

JuliaFaith - I am suspecting a mold exposure in our rental home. Do you think if he was exposed to mold in December that he would still be holding onto biotoxins?

 

He was started on TPN on Saturday since he lost 2 more lbs. Not where I thought life would take us but he is wasting away and we had to head the weight loss off somehow.

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mdmom,

 

Read some of the old posts from Dr. T on this forum he often mentions GI problems associated with Pandas. I am copying and pasting one of his commments from 2010 below:

 

(this is Dr. T)

We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene.

There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated.

 

FYI this is me- my childrens first symptoms before a flare for years was always stomach pain and gerd. I started treating the GERD with Pepcid and Alka seltzer gold. they improved and so did their appetite.


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