LexMom

My DS never had any abnormal tests results aside from low IGg levels. CBC, EEG, MRI, Cat scan, even strep titers. His titers weren't even high when he had strep. I always thought it was unusual. Then my daughter started getting sick and the doctor checked her for h. pylori and she was positive. Our whole family was treated and we have seen significant improvement in our DS. He had very high anxiety. I'm wondering if we were fighting the wrong infection. Anyway, my point is that I think it doesn't hurt to check for bacterial infections of the stomach. They can affect your immunity. Probably the reason I also had low IGg.

My son and daughter's only symptom for strep was frequent urination. I few times, I took them to the doc thinking they had UTIs, but they had strep.

Does she have any stomach issues? My son has seen remarkable improvement after being treated for h. pylori. My daughter was diagnosed with it so our ped treated my son, too. Stomach issues can mess with your immune system and mental function. I'm now wondering if this was not his problem all the time.

My son never had elevated titers, even during a bout of strep. Does she have stomach problems? We have seen remarkable improvement after our son was treated for h.pylori.

I felt there was no hope for my son until my daughter was diagnosed with h. pylori. They treated our whole family since it is contagious and now my DS has been doing fantastic. Now I'm wondering if this was his problem all along.

The gastro insisted Florastor is one of the only backed by studies showing its effectiveness.

Here we are...months later...and we get a diagnosis of h. Pylori. :-/

We saw a lot of improvement with tonsillectomy, but have never really had a tic-free period.

I rethought this. I don't believe Florastor contains strep because the doc told us it is a yeast, not a bacteria.

We use Florastor. I'm not sure if it contains strep, but the GI doctor told us it is one of the only probiotics that has documented studies behind it.

Unfortunately, by the time we get to the doctor, he is not bleeding anymore. It's very unusual. It seems to only happen once, then go away for months. It is clearly blood, though. I need to keep a urine cup at home for when it happens. He is having back pain where his kidneys are and an explosion of tics. I am ready to give up. All his tests always come back normal. Even his strep titers are always normal.

Thanks. I followed up with the doctor. She ordered a couple of urine tests. His urine usually come backs normal. I suggested maybe he has some kind of vasculitis since he has other inflammatory problems. She ordered some tests.

Has anyone else's child ever had blood in their urine? My DS just had his 3rd incidence. Usually he flushes before I can see it, but this time he saved it. It's pretty red. He is having back pain. They thought he might have kidney stones, but a followup with a urologist and nephrologist were both fine. Sonogram of kidneys were fine. I'm puzzled.

My DS had an eye tic when he was having a bout of blepharitis. Has he seen an opthamologist?

My son's onset was so abrupt, even he acknowledged it was not normal. Of course, he was older. It took a lot of doctors before we found a doctor who treated it as PANDAS and, even still, they treat it as PANDAS but will not name it as such.

I think our problems were more from the infection, than the vaccination, although I got petichae all over me right after receiving the vaccine. Anyway, I think the infection just messed with DSs immune system. He previously had only one bout of strep and he was 8 or 9.

Our problems started after h1n1 too. 5 bouts of strep after that.

My sister sent me this article. Has anyone ever had HPHPA levels checked? http://abcnews.go.com/Health/anxiety-head-gut/t/story?id=20229136

My FIL is a phamacist at CVS. They carry a generic for $15.

Mine gets new tics all the time. They are usually related to how he is feeling. If his back hurts, he will raise his arm. If he has a sinus infection, he sticks out his tongue. If he has an eye infection, he flicks his eyelid. Then, for months they stopped. Now he has been having them again. I can't say they coincide with a fever, since he has very rarely had a fever despite numerous infections. However, they usually stop when he is on antibiotics. This time he is on antibiotics, but the tics remain. It is so inconsistent. I've started taking him to the doctor when he has tics. Often times it is the only indicator that he is sick.

Sorry...we have that experience also. My DS will have a great day. He'll be really happy when I pick him up from school, then cry himself to sleep at night and refuse to go to school the next day. It's so frustrating. I try to remind myself that at least we are not where we were a year ago.

My son basically had no pneumococcal antibodies. He got a booster and was better for about 3 months. They have dropped steadily since then, but the immunologist has said they are still in the protective range. Interestingly, he tested my antibodies and I am also deficient. However, I never get sick. I find that weird. Not convinced there is any correlation.

I live in Sterling. Dr. Williams at Reston Pediatrics has been treating my son. She is open to trying different things. We also see Dr. Alpan in Fairfax. He won't really diagnose PANDAS, but he treats my son as if he has it. He is committed to at least helping him, unlike some of the neurologists and psychiatrists we have seen. Currently he has my son on long-term abx.

My son recently had a flare and he was on 2 antibiotics before the 3rd one finally relieved his symptoms. We also experience the 2 steps forward, one step back effect with him, as other have said. It involves a lot of trial and error to get him feeling well again.

I was reading about Bartonella and I think there is a rash associated with it that can look like stretch marks.