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Strep and Gastro Problems


hugs2day

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Hello, I am new to the forum, I have a 6 year old with PANDAS. He was diagnosed last November after a complete personality change and he became homebound due to fear and anxiety and bizarre behaviors literally overnight. Azithromycin brought him back to us, but now in the 3rd week of school he is slipping away again. The interesting thing is his gut is what is attacked, he gets completely constipated and a distended belly and nothing gets his bowels moving and his urine smells like ammonia. We are giving him food enzymes and mag citrate regularly and his bowels wont move. He had his tonsils removed a year ago due to chronic strep and that is when PANDAS hit the gut. His throat no longer gets red its his gastrointestinal tract. Titers are normal. Is there any research that shows strep attacks the gut.

 

He is still on daily Azithro and his probiotic is custom p. without strep strain alternated with Therabiotic complete without strep strain. DAN wants to try steroids for the first time I am worried it will make gut problems worse therefore PAnDAS gets worse. Should I ask for something like a second antibiotic instead.

 

Any advice you can offer would be really appreciated.

 

This forum is such a valuable resource to me. Thank you for sharing.

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My daughter had stomach problems before the Pandas kicked in, about 1 1/2 months before the ticking/chorea started.

 

I had taken her to the ER twice, where they thought she had appendicitis, but 2 CAT scans later, they said they had no idea what it was, but it wasn't appendicitis. Her pain was so severe they gave her dilaudid. We went to a gastroenterologist, who diagnosed her with mesenteric adenitis based on the CAT scans. He also had her x rayed, which showed "a significant amount of stool in the colon." Looking at the xrays, you could see she was just packed full. He reccommended Miralax, which we used. I unfortunately misunderstood his instructions, and gave her more than twice what she was supposed to get, but it cleared her right out within a week............

 

About a month later, the severe ticking/chorea started. She was ultimately diagnosed with Pandas and Sydenham's chorea. One of the preceding/coexisting factors for Sydenham's/rheumatic chorea is mesenteric adenitis. This is something you may want to check out. take a look at this...

 

http://www.merckmanuals.com/professional/pediatrics/rheumatic_fever/rheumatic_fever.html

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My son always presents with severe gastro pain, constipation, right before the crying, ocd and aniexty begins, it is a common theme with him. It started after he had his tonils taken out because of chronic strep, he couldn't eat or breathe anymore so ENT said he should be done with strep after tonsils were taken out, but that is when PANDAS hit full force. My son does get chorea movements with pandas episodes so I am very interested in researching mesenteri adentis. Thank you for sharing that information.

 

His dr. started him on 21 day taper today his first ever. The hope is it will bring down the assault before it gets going any worse. I have read on other forums that strep can get into the gut and other parts of the body. Not sure, what to think of that, but makes sense because after my sons tonsils were taken out and he had PANDAS severe he got a swollen lymph node behind his right ear yet no red throat or sore throat. The lymph node goes down when he is well and swells up when he is sick, like today. Titers were normal and always are even when he had strep present.

 

His Xrays always show stool packed in colon, but he seems to be in gastric distress when PAnDAS hits. Its a common theme with him.

 

I increased his Azithro today to a higher dose and started steroids and been giving mag citrate and he is already looking better. I pray it lasts.

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stomach aches etc. are a sign of strep. (not a well known one, but my daughter presented with stomach aches often, and sure enough, when tested, she had strep.

 

 

I hope that is all that it is, I feel like he has gut bugs or something you can actually see his tummy distended and hard. I can hear it making noise and he asks for heat to put on his tummy. He said his stomach hurts bad, but he still has an appetite. He starts with gastro pain and crying with anxiety then a day or two later he looses his mind and the rages and odd and a whole host of symptoms overcome him. I am praying I finally have the right doctor and this steroid taper will spare him the misery.

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hugs2day...are you seeing a pandas specialist?

 

 

Yes, our second doc. Our first dr. was good, but wasn't willing to go further than hd abx. This new dr. was recommended by a lot of families that use DAN drs. He did a lot of labs and this is the first time my son was prescribed steroids. He would not get approved for ivig cuz his immune panel does not show immune deficient but the dr. said steroids is sort of like the poor mans ivig. I am really worried about 21 days of steroids, he said we can stop steroids prior to 5 days in if things take a turn for the worse, but I guess after 5 days it has to be tapered and no stopping.

Thank you for your kind words. .

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I definitely would take him to a gastroenterologist. They will do stool samples/bloodwork etc. to rule out things.

 

My daughter's abdomen would also get very hard and distended. At one point we had tried literally every laxative/suppository/enema they had at CVS, and nothing helped until we did the massive doses of Miralax. (I didn't do this on purpose, I just misunderstood the doctor's directions, and it totally cleared her out within a few days.)

 

She also had an episode of severe chorea following her tonsillectomy, which got significantly better(but not totally gone) with a steroid burst and clindamycin. Neuro said this bout of chorea was probably a result of bacteremia consequent to the surgery. It never totally went away though, and the only thing that got rid of it totally was plasmapharesis.

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my son had severe celiac disease along with PANDAS, and in our office, at least half of the PANDAS kids we have tested thus far also are somewhere on the celiac scale, in fact definitely more than half! You can try asking your MD for a celiac test, and i would recommend a stool test instead of blood as the blood has a high false negative rate. if getting a test is hard to do, you can try taking your son 100% off of gluten as a test, but, that is challenging and it would realistically have to be for a solid 8 weeks to really know. but for many kids the stomach problems associated with gluten go away within days or a couple of weeks of being gluten free.

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