LexMom

My son was already scheduled for a T&A when he had his first bout with PANDAS. Although he still has flares, he has not had strep once since his surgery. The recovery for him wasn't even that bad. I would make sure he is on ABX afterwards though. The ENT wouldn't give my son ABX and, within a week, we were at the office for a sinus infection.

I have a friend who has EDS and she recently started a yeast-free diet and has seen some relief. If you are on Twitter there are a lot of people who share their experiences with the disorder. Maybe they can offer some suggestions.

We were at the GI recently and he recommended Florastor. He says it is one of the only probiotics that is backed by studies. It is expensive, but within a few days my son's diarrhea went away and his symptoms were better. Of course he is also taking an antibiotic, but I do think the Florastor has helped.

He always seems to get diarrhea with a sinus infection. No sure why. This all started as a sinus infection.

Seems like it was just a flare in symptoms. The doctor put him on omnicef and he is almost back to normal. He went from being in the bathroom for 6hrs at a time to in and out. Weird how the symptoms change. We've experienced anxiety, motor tics, bathroom problems, OCD. Going to try another course of full strength antibiotics before a course of prophylactic antibiotics. Also weird how some antibiotics work for some symptoms, but not others. Zithromax and clindamycin didn't work for this one, but omnicef did.

I would assume they tested for Giardia since he had a stool analysis. It's just so hard to figure out what is wrong, as he always seems to have atypical symptoms. Even when he had a case of strep that sent him to the hospital, his blood tests have always came back normal.

It's possible that it is c-diff or even some other infection. Both my daughter and myself have had diarrhea on and off for a month. It would be nice if some test would come back abnormal so it would point us in some kind of direction.

He's been checked for Celiac. He is on his 3rd course of antibiotics this summer for a sinus infection. I'm wondering if he doesn't even have a sinus infection. It seems like he has some kind of inflammation that just travels around his body...eyes, sinuses, bladder, bowels. Nothing seems to help and, just like that, it is gone. I'm going to ask the doctor about vasculitis. It definitely had a strep connection, at least in the beginning, but he hasn't had any strep infections in over a year. Right now he is taking Florastor and antibiotics. Just did 4 days of prednisone.

My son has been having bouts of diarrhea where he says it won't stop coming out. Same with urine. We've been to the gastro and a urologist but they didn't really do anything. He feels fine otherwise. His anxiety level seems fine, so I don't feel like it is an obsession. He's had bloodwork and a stool sample analyzed and they were fine. Anyone's child ever had this problem?

My son also had this problem. I believe it was during the time when he had a UTI. He actually started wetting himself afterwards. It seemed to clear up after his infection was gone.

I am going to cancel an appt with Dr. Latimer. I made it in July, but our son is doing very well and we would have to pay for it out-of-pocket. If someone wants to try calling after I cancel, you may be able to get it. It's for 11/15 at 10:30. Let me know and I will try to coordinate it with you.

They did multiple tests on my son, as well as an ultrasound, and everything came back normal. All of a sudden it just stopped and he hasn't had any problems since then.

I know how you are feeling. We only really got a response from a doctor when it was discovered that my son had low IGg levels. Only then did they discover that his pneumococcal titers were low. They gave him a booster and he has been a totally different kid, although not 100%. If your child is having problems with getting sick a lot then I would ask about checking his immunoglobulin levels. My son had to have his tonsils and adenoids out before the doctors would believe me when I told them that it was not normal for my previously healthy child to be getting sick so much. He has now gone 5 weeks without needing antibiotics. It is my belief that immunity plays a role in PANDAS. Although I am no doctor.

It's so weird. My 11yo son had this problem for awhile. He had previously had recurrent UTI. The doctor cultured it and it came back morganella. It was resistant to common antibiotics. I think the leakage started after everything was cleared up though. We were thinking it was psychological because it happened during a flare of his OCD.