[symptoms in sibling but normal blookwork results]

my older daughter (now 12) was diagnosed with Pandas and Sydenham's chorea, after just about every abx and several steroid bursts etc, she had plasmapharesis in March. she has been fine since, still on prophylactic zithromax..........now symptom free. she never had any increased strep titer/etc., and she had at least 8 or 9 blood tests over about 10 months, but almost always positive throat culture, and it was really high and really fast with the rapid strep test..

 

little one (now 6) would test "scant positive" when older one was sick, little one generally had no symptoms.....also got some strep (perianal) and had sinus problems....also negative blood work, but generally both of them went on abx if at least one tested positive for strep.

 

both kids got tonsils/adenoids out.....little one has some symptoms of hyperactivity which seem to occur when she has strep symptoms, but again, she usually doesn't test positive, or "scant positive"....but always improves after a course of zithro, or suprax also worked (she was on it for a UTI).

 

I just don't think you can exclusively go by test results, especially if you have been down this road before. I would try to abx, especially since Pandas tends to occur in siblings.

[Increase in choreiform movements, tics, tremors]

my daughter's problems with pandas were almost all movement based too, several bouts with severe chorea, although cunningham test showed pandas.

she had a brain MRI during the most severe bout when she was hospitalized, under general anasthesia (she was moving/shaking/twitching too severely to go into the machine without sedation), and it was negative.

 

it seemed like each episode got worse. she had a total of about 4 episodes over the course of about a year, although the first one was probably the most involved (head/neck/eyes, legs/severe dysphagia) . it was just awful and almost no one had ever seen anything like it.

 

at first, she responded well to abx and steroid bursts, with some valium to keep her still enough to sleep. but, after a while, even that wouldn't work. we had pharesis done in march, and that was the only thing that totally remediated the tics/chorea.

 

also, she had quite an extensive history of strep and would always test positive. younger daughter would too, but would generally be symptom free. unusual variants of strep.....headaches, stomach aches, rash on rear end, and sometimes throat cultures, generally with no fever. it got to the point where the doctor would just do a rapid strep/culture on both kids before even considering anything else.

[tonsillectomy]

Hi, I haven't posted in a while. Its been 14 months since PANDAS invaded our lives. I can say my DD9 is about 50% back. We are having major issues with behavior. She doesn't listen and fights with us all the time. She is on Zoloft 50 mg but I don't see that helping anything but her anxiety. She is also on Strattera 40 mg which is also not doing much good and Pen V K 250 mg. BID. She was good for a few weeks but she seems to be going backward with her symptoms. So anyway her ID doctor said have her Adenoids checked. She said they can hide strep. Has anyone heard this? And is it worth it to get a tonsillectomy if she doesn't get strep often? And anyone who did a tonsillectomy has the PANDAS symptoms decreased?

Thanks so much, Kari.

 

I would absolutely get the tonsils/adenoids checked. I got T/As done on both my kids in November. The ENT said older one's tonsils "were the most disgusting things he'd ever seen" and were oozing pus.......none of this was visible to anyone who examined her preop. she was also diagnosed with pandas, although her symptoms were almost always those of severe chorea. I would say that if you do go for the t/a, you should really check into making sure that they give your child follow up abx and prednisone. mine got a severe exacerbation of motor tics/chorea afterward, which dr. t said was probably from bacteremia following the surgery. she is fine now, having undergone pharesis in march.

[I just don't understand how this is even possible]

my daughter had several bouts of debilitating chorea over the past year.

we tried abx and steroids bursts, which worked, until they didn't.

used zithro, clindamycin & prednisone, then again, which worked again.

couldn't use augmentin (allergy) .

then biaxin (severe diarrhea) and medrol. no change.

then tegretol...minor improvment, but side effects.

in the end, the only thing that got rid of the chorea/severe tics was PEX, which so far has made a world of difference.

through it all, strep titers never rose, even with raging strep infections (cultures).