Reply To: PANDAS

Health, nothing you quoted contradicts what I have written here, or the advice given by the Dr, so I am not sure what we are arguing about. Your first post described a regular treatment protocol for strep throat, not PANDAS (which by the way is exactly what we did for my son’s first strep infection), and your second post about PANDAS basically just discussed the pros and cons of the various choices of antibiotics to use, and a cautionary approach to long-term prophylactic antibiotics (which as I have said I do not want to do in any case).

Mexipal-thanks for your well-though out comments. I don’t see the signs of OCD, I’ve gone over the check-list of OCD symptoms in PANDAS kids and really don’t see them. Don’t see depression, change in appetite or food avoidance. I’ve questioned him about what he feels and he does not mention anything connected to anxiety or fears, he only talks about the rages and that he gets scared when he rages by something inside of him that he can’t control. The lack of OCD symptoms is why we at first avoided the diagnosis. But he had so many of the secondary symptoms, it is actually eerie reading about the symptoms- some things that I had never even connected to PANDAS. He showed signs of vocal tics- he made these strange trilling sound with his tongue, and would drive his siblings crazy repeating their names with silly comments and ditties. No cursing- B”H he does not know curse words, but would have these outburst when he would start shouting “so-and-so should die” etc. Extreme clinginess, constantly crying and moaning that he needs a hug. Uncontrollable rages, with a look in his eyes like he was possessed. Spinning, sometimes while holding objects like belts or broomsticks that he would flail around. Trouble concentrating in school, could not get through the whole day, especially complaining about math, which has always been a weak spot though. More infrequent, and came up after the other symptoms subsided- sensitivity to light, complaining of muscle pain in legs and weakness, difficulty walking.
As I said in a previous post, I was nervous about going to a “PANDAholic” who might miss something else because of her bias. My pediatrician is also skeptical because the diagnosis is clinical, and the treatment is empiric, and it’s hard to know anything for sure, and treating with long-term antibiotics is not something to take lightly. For the 2 months he had symptoms, we hesitated concluding it was PANDAS and did not want to put him on antibiotics. But then he had another strep infection- which had to be treated. And to my surprise, his symptoms subsided almost right away, with a few blips here and there. That’s when I started to believe it was PANDAS, and turned to the specialist, with my pediatrician’s support.

Daniel, thanks for the info. I wanted to get omega-3, but the pharmacy I was in only had it in syrup or these huge pills, neither of which I thought he would take. I am so nervous about introducing anything to him right now. I think I will wait til the current episode is behind us, IY’H and then look into overall changes to be made to improve his health. We have not done bloodwork now, my Dr has not though to do it, the PANDAS Dr thought we had enough info for the diagnosis and did not require further testing. We did extensive testing last year- the only deficiency he showed was vitamin D, folate was fine, as far as I remember. We have to remember that we are dealing with a child who is going through a lot, and testing in itself can be stressful, so unless it is really mandated, I don’t want to repeat them.