[Both kids--need advice]

raven and dove -- it doesn't appear you need another to chime in .... but that is what i am going to do.

i agree April seems very far away.

 

just our experience, when we realized it was pandas for ds7, about 3-4 months after 'sudden onset' he got on the right abx and saw 100% remission in about 3 days. he was on abx for 30 days, off for about 30 days and then began to backslide. he went back on abx, but not at the same treatment dose at first and not to the same great results.

 

if i had to do it all over again. . . i would keep him on abx until we had a good handle on what was happening - or at least a good enough handle as we could get.

 

i have one ds7 who has diagnosed pandas -- pretty classic presentation and severe enough to make people think, 'what is this". i also have ds9, who last year presented symptoms, had high titers but mild enough to be explained by many others theories from those not 'in the know'. he is doing well now - but i'm quite sure would have gotten worse with inappropriate explanations for what was causing the symptoms.

 

I found out who Dr. K is and will call him next week. We just went with the St. Louis doctor becasuse our pediatrician had sent other kids there who recieved a PANDAS diagnosis. I figured a neurologist who believes in the syndrome is better than one that doesn't. I am so puzzled. If this is really an autoimmune syndrome, then why are neurologists diagnosing and treating it?

[Both kids--need advice]

Thank you for pointing out what should be obvious to me. I tend to tiptoe around doctors because they are so crictical of everything we do. We had her evaluated for autism at age 5 and were given 10 different diagnoses that were not on the spectrum. We couldn't get any therapy for her because the pscyhologists inisted she had autism. Six months later, the same doctor decided she qualified as PDD-NOS which easily encompassed most of her other diagnoses. Now the social worker is puzzled because she doesn't exactly fit her idea of an autistic child either. Looking back, I can see that everything could fit with PANDAS including the severe enuresis and anorexia. What a revelation!

Thanks so much for the great information.

 

My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to.

I think its VERY possible, perhaps probable that the selective mutism and PDD-NOS are also symptoms of the same underlying problem that causes the tics and OCD, rather than separate conditions.

[Both kids--need advice]

Thanks so much for the great information.

 

My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to. The social worker told us initially that her tics were "bad habits" then changed her mind. The pscyhiatrist assumed she could improve with habit reversal therapy. The social worker let us know that was absurd.

 

The older child took two rounds of Clindamycin since she is allergic to several antibiotics.

 

I thought of another question. Do some people notice that this appears throughout several generations of a family? I am still open to the idea that this is Tourettes because my husband had similar experiences as a child (although his tics looked more like full blown seizures). However he has a number of autoimmune syndromes including celiac and psoriatic arthritis, which makes me wonder.

[Both kids--need advice]

Hi,

 

This is my first time posting on this forum and I am hoping for some direction. Last January, both of my daughters (age 9 and 10 at the time) developed one vocal and motor tic each immediately after a bad cold. The older child developed compulsive counting behaviors and separation anxiety. I did not think much of it since they had had minor tics in the past and OCD runs in the family. In June the younger daughter started having around 3 vocal tics simultaneously along with several complex motor tics. She had up to 100 vocal tics per minute so we consulted a couple of specialists. She was diagnosed with Tourettes. The psychiatrist commented it could be PANDAS but he essentially didn't care. He was going to treat her for Tourettes and we were to put her back in school for her own good (we currently homeschool). The pediatric development specialist assured us it probably was PANDAS but he wouldn't have the slightest idea what to do about it. He gave us the option of not treating the tics and didn't seem worried about the damaging effects of homeschooling. We opted to use acupuncture/herbs and cranioscral therapy which seem to make the tics bearable.

 

When my older daughter developed more severe vocal tics in October I took them both to a new pediatrician. He was familiar with PANDAS and recommended a neurologist in St. Louis who had diagnosed it in a few of his referrals. Our appointment is in April. Just for "fun", he tried my older daughter out on antibiotics. A week later she developed a sinus infection and needed more antibiotics. Her tics have improved by about 75% after the two rounds and she has suddenly and dramatically resolved her reading fluency problems that have been plaguing her for some time.

 

Is it common for siblings to develop symptoms like this at the same time? Should I expect the effects of the antibiotic to be temporary? Is there anything I can do before our appointment in April to maintain sanity? Thanks in advance for any advice or support.