Bronxmom, A friend from another board directed me here to your discussion. My oldest ds is gifted but not like your son...he's a 133. We are having the same issue as you with PANDAS. Although I only read the 1st and last pages of this thread (we are off to the dr for another strep test in 30 minutes), I feel your pain. I will share our story here and then maybe we can talk later and I can go back and read what you've been dealing with.
DS has an Aspergers diagnosis since 6 years old...barely qualified but we needed help due to behavioral issues, mostly aggression but one could say it's primarily due to fixation on a frustration. Just before turning 8 he developed chronic headaches and behavior declined after 2 pleasant summer months. We got him glasses for a mild vision problem, got sinus xrays and had an MRI done. The only helpful thing we learned was that he just barely tested positive for strep (after 3 weeks of headaches which struck the dr as odd - if he'd really had 3 weeks of symptoms there should have been lots of strep in his system). He was treated and 2 weeks later we had the most delightful, beautiful child! That's not to say he suddenly became a social butterfly, but he was kind and thoughtful, helpful and sweet. We had 1 good month and then it all started again. He had strep a 2nd time. Then another good month and behavior declined again. This 3rd time we caught it faster...he had no other symptoms besides behavior. However, although his behavior improved, it was not as dramatic as the 1st 2 times. 2 more decent months and then his little brother picked up strep at school. Behavior declined AS we were waiting for the strep results to come back. Again, behavior improved quickly but not to previous levels.
This was 2 months ago. Now in that time he's presumably had croup (oral steroids which mess with his behavior and confused things), a cold (headaches too so another false alarm), horrible double ear infection (resistant to amox so he switched to augmentin), and then 4 days after finishing his anitbiotics he develops a horrid headache and vomits all over the nurse's office at school. He is complaining of a mildly sore throat as well. To my amazement, the strep test was negative. I should have ben more skeptical. It has been 8 days...the low grade headache and sore throat have persisted and then this evening he woke up and started vomiting again. Now he says his throat hurts horribly. His stomach still hurts. I'm SURE he had strep and they missed it bc he'd been on antibiotics so recently. I was assured that 3 days post antibiotics was plenty of time for an accurate test but what else causes 8 days of headache, vomiting and stomachache in a child? Especially with his history.
His behavior has been horrid...we feel like we've gone back to this time last year and lost all 'progress' behaviorally. I want to bring him home to homeschool in the fall. We thought we'd figured out that the behavioral issue were strep-related and that we could now manage him at home. If we could keep him healthy life would be so much happier for all of us. Now I'm not sure I can handle schooling him at home...if this keeps up...if he becomes resistant to all the antibiotics and continues to get strep...if this isn't strep at all. I don't know what dr to turn to anymore. We've seen an infectious disease specialist (strep specialty...useless), a neurologist (thought he was developing migraines) and we've been on a waiting list for a year for an autism dr who might actually take us seriously but the date we were told just keeps getting bumped back time and time again.
To add more relevant to this board and learning...ds has stayed on track at school but he used to be WAY ahead. He seems much less able to learn when he is having these headaches (i.e. strep). He also had handwriting issues in 1st grade. It was agonizing for him although the teacher wasn't concerned bc it was legible. OT eval showed huge delay in line tracing masked by skills that were very advanced for his age. This year is much better. I thought it was due to OT and age but perhaps not, now that I think about it. Last night he was tortured by switching back and forth between printing and cursive on his spelling hw...maybe it was the sign that symptoms were about to resurge last night. I had commented to dh that it was the most difficult night of hw we've had all school year but initially I had thought it was an inability to switch gears back and forth...hmmmm
I would love to talk to you.
Brownie
