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Medical Detective?


ibcdbwc
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Feel like being a detective?

Quick recap: PANDAS morphed to PANS. Did well on antibiotics. Remission X 18 months, Managed well for years until in seventh grade - we began with monthly flares with monthly sinus infections. Found to have elevated tissue transglutaminase. Removing gluten and dairy was a huge help to us and helped us back into remission. Now with the start of high school, we are flaring every 6 weeks again - clock work.

 

1-2 days before flare:

  • flushed cheeks (he is fair skinned and always pink) but during a flare his cheeks are bright red (we try to avoid food dye and as said we are gluten and dairy free). Have not been able to find direct link to anything else causing the flush (i.e salicylates...)
  • unusual body odor (one or two days prior to the flare he smells more pungent - moreso than a normal 14 year old boy!)
  • increased kinetic energy
  • increased water consumption and increased urination

Flare: (7 days - day 4-6 are the worst!)

  • Insomnia - horrific
  • headache
  • OCD primarily obsessive thinking
  • severe constipation and thus obsessive thoughts about weight and BM's
  • food refusal
  • dramatic energy decline
  • horrible brain fog
  • mental and speech processing dramatically slows

1-2 days Post Flare:

  • Spacey and a little goofy for a few days as he searches to get his brain back.

 

Motrin helps some. Azith used to help alot but now seems to make his mental fog worse if we give it during the flare. Western Blot in 2011 showed one band IgM 23. BUT subsequent years of testing has been negative for lyme and all coinfections. Titers for mycoplasma and strep are low as well. He does have chronically swollen nasal turbinates -- but has not had an infection in quite a while (as opposed to 7th grade when it was every month).

 

We are dealing. We are managing. He is growing and maturing. But why the cyclical nature?

Edited by ibcdbwc
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Hi qannie, he is severely allergic to dust mites. We have been good about controlling for dust mites (and we addressed mold issues two years ago). We are on the waiting list to see Dr. Greenblatt but in the meantime I am digging again. We did so well for so long and I cant believe we are back to every 6 weeks like clock work.

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That's a good thought. We have not given enzymes. I know his diet is not as clean as it once was as he is in high school. During his 5 good weeks-- I'm sure he must say "what the heck..." and consume things he shouldn't. He's very good about gluten. He has dairy, sugar and dye slip ups.

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What about a parasitic round worm infection (nematode)? Some have 6 week cycles and don't have obvious symptoms but would activate the immune system... One actually triggers an allergy to dust mites according to something I recently read.

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Thanks everyone for the thoughts! We are going to do another round of stool work up and add digestive enzymes as well.

Dasu-- we have not done contrasting bloodwork. That is a great thought. I assume if the count changes it would indeed confirm infection. We had noticed previously that during a flare his IgE was always elevated- hence our focus on allergies - food and otherwise. But the clock work type cycle is baffling.

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  • 2 months later...

I am also wondering if you are tracking full moon cycle and increase in symptoms. Many parasites replicate during full moon. If symptoms increase 2 to 3 days prior to full moon and after I would definitely consider treating him for parasites. Parasites like tape worms, rope worms, round worms, liver flukes are very hard to test for even with comprehensive stool.

 

The two things you mention that indicates parasites to me is constipation and strange odor. Parasites omit ammonia and the best description I have read is ''you smell like cat pee". You might check ammonia levels when he smells. Parasites also love B-12 (B-12 deficiency) and he would have very little gut absorption. Look at Butyrate levels indicated on comprehensive stool analysis for gut absorption. B-12 testing I would recommend Spectracell Testing.

 

We currently use Scram from Health Force for parasites. Also, Babesia and Bartonella are technically parasites. You might test him via Galaxy Labs for Bartonella/Babeia when flaring. It requires three different blood draws every other day. They test for more strains verses Igenex.

 

http://www.galaxydx.com/web/pathogen-testing/

Edited by sf_mom
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Thanks @sf_mom! Yes the ammonia connection I am currently following. We do have confirmed gut dysbiosis and yeast on most recent stool study. And his homozygous 1298 - makes this a possible ammonia issue for him anyway in clearing ammonia. Parasite testing has been negative but I do plan to follow your lead and dig deeper. The "cycle" just seems to scream parasite.

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I agree regarding cycles and parasites.

 

He might also improve greatly by treating yeast. I would definitely use whatever is recommended in the comprehensive stool for treating it.

 

Try the Scram and work your way up to the recommended amount on bottle. If he has parasites or Babesia you should see improvement.

 

Is he on anything other than Azithro right now?

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