possible pandas ?

[gwr]

Hello,

I have read bits and pieces from this forum over the past couple of months, as I struggled to understand what exactly was happening with my son (10 years old, 4th grade) who had hit a wall with panic, obsessive worrying and separation anxiety...the low points included near-catatonic states in the morning, daily gagging and vomiting. Diagnosis from the therapist (primarily for 504 plan purposes) is Panic Disorder w/o Aographobia with a rule of out of GAD. He had his tonsils removed at age 3, has never had a strep infection, but his strep titres (which I asked the pediatrician to check after consulting with an acquaintance) were elevated slightly, around 400 each. The only other possibly relevant bits of information are that he has a genetic predisposition for anxiety, had a sinus and staph infection (treated for MRSA but not cultured) w/in the past 6 months, and his siblings get strep annually, with his older brother having had it throughout his bloodstream several years ago. He has had intermittent tics over the years...very mild, non-disruptive, and nothing baseline, but looking back they began the year his siblings had strep the most.

He has been seen at the pandas "clinic" at Mass General in Boston, given a 23 out of 40 for OCD (by the psychiatrist)...this doctor's gut reaction was that this was not pandas, however there were key components to the story that made him hesitant to dismiss it, so he referred us to the ID doctor at the clinic who has since put him on 30 days of zithromax (he is allergic to penicillin and bactrim). We are 3 weeks in to that 30 days, at which point I will need to consult with the ID doctor and decide where to go from there. It's difficult to asses if he has improved over the past 3 weeks - he had done well with the CBT alone, and while the worries are still occasional since starting the zithromax, the vocal tics are mostly gone, and things that used to cause stress (such as eating dinner) for years before this big flare have dissipated a bit. It's the latter that makes me think he is responding in some way. I should add that he has not been on an psychiatric medication, however we were considering it, and he's been on probiotics since before the antibiotics, and we tried daily flax oil doses without success (they came right back up).

I guess my question(s) to all of you wise and experienced folks, does this sound like pandas? At the end of the day I think it will be my decision as to what to do with antibiotics - what would you do given this case history? What other things should I be asking/considering? While I feel that we are at the right place with MGH, we have a pediatrician who has no experience at all with pandas, and a psychiatrist and a therapist who, while fabulous at what they do, have doubts.

Thanks very much for your insight, and for listening...

 

[pr40]

did you do Cunningham test? dr hubbuch is in watertown, she spoke at pandas conference and is LLMD. you may want to consult with her for a second opinion.

I have some misgivings about MGH center. dr there recognizes only certain kind of PANDAS, is unwilling to experiment, etc.

In our experience, abx have to be given for a longer period of time to see sustained improvement. for us, abx results were both immediate and very gradual, saw-toothed as it is often described.

[JDuffner]

Also check your probiotic make sure it does not have streptococcus in it as some PANS, PANDAS kids react.