9 yo daughter with constant abdominal pain and PANDA like symptoms

[rainingrebecca]

Hi

I am new to the group and hoping someone can possibly shed some light on my daughter's condition. 

My 10 yo daughter had a strep infection about a year and a half ago that went undetected for 3 months until it was finally diagnosed, she did not have a sore throat so it didn't occur to the doctor to do a throat culture.  She was having stomach pain and cyclical vomiting.  We finally went to a different doctor who ran a test and once we treated her she was fine.   

Fast forward to August 2018 and she had a three week bout with vomiting, diarrhea and abdominal pain.   I had them run a throat culture, but it came back negative.   They did discover she had a TSH (thyroid) level of 37 and so we thought it was an endocrine issue.   She tested positive for thyroid antibodies and was diagnosed with Hashimoto's.   

Here is where it gets weird.  She has been having constant abdominal pain and every test (full GI work up, endicrine work up, endoscopy, tons of blood tests) that they have run at the children's hospital has come up with perfect results.   

I finally convinced my regular doctor to run an ASO test and it came back at 250.   So, they started her on a 14 day course of Keflex.   We are in day 5 and I do think her sensitivity to light and sound has improved, her appetite seems to have improved and so has the number of tics she has been having, but her abdominal pain has not improved at all. 

I almost forgot to mention and now her thyroid levels have returned to normal and she no longer has any thyroid antibodies.

Does anyone have a similar story and can someone give me some hope that she can get some relief soon?  The poor thing has had constant abdominal pain for 4 months now and nothing makes her feel better.   And, I am worried she is never going to be normal again.

Thoughts and advice welcome.

 

Thanks

 

 

 

[bobh]

Abdominal pain is so common among PANS kids.  I recall seeing a video of Dr. K. (he's in Chicago) describing how they went down the esophagus on dozens (maybe over 100?) of PANS kids with a scope, trying to find something that might explain it - but they didn't find anything.  Our kid had frequent stomach aches - but not continuous as you describe for your daughter.

I have heard speculation (from one doctor that treats PANDAS/PANS) that a "reboot of the gut" by using antibiotics may be a good thing.  And I have heard lots of talk on these kinds of pages (and facebook groups) about how bad abx is for the gut microbiome.

If you are using a probiotic in between the abx doses, beware:  some kids (mine, but others too) get worse on probiotics.

[LordChallen]

Research "psychobiotics" because they are aimed the gut-brain connection. They have had awesome impact on my daughter, but every kid needs to be fitted to the right probiotics. Some will cause PANDAS to flare.

Ones I use is Culturelle for Kids packets (1 pack per day from Walmart) and Pro-Kids (3x a day) from Amazon. Things are not cured and I still have struggles, but she is SO MUCH better. Almost seems normal. Anger can be a little extreme, but usually understandable. Frustration with math and handwriting not as bad, but still there.

Abdominal pain is basically gone. I was using "alka seltzer gold" when she was hurting. And that was everyday. But it worked miracles. But slowly, she doesn't need them.

She is also on Nexium 2x a day. The burning is just too much with one, and even then, a TUM once in awhile. But the cramping and "pain" is rare now.

Edited January 7, 2019 by lordchallen