Got our Dx and then wierdest thing EVER

[MomtoJake]

So this past week we saw Dr. Murphy and got our official PANDAS diagnosis. (OCD, Transient TIc Disorder, ADHD- Pandas related also dx with hypotonia and PDD-NOS) I have to say the experience was very intense and beneficial. DS (age 6) was seen by 4 doctors (3 fellows and Dr. M) The appointment lasted almost 4 hours and they had all of DS history and lab info MEMORIZED. Dr. M felt that he initially improved on ABX that were stopped after 1 month, then his older brother came down with strep after that and then we saw an increase in symptoms although DS had negative swabs and cultures. Our first instance of him being a strep detector. Dr. M explained how this worked but I must say I was on overload by that point. He was also seen by an OT. We have many recommendation and labs (mycoplasma etc.) to follow up on and we go back in one month. We are back on antibiotics until we see them again. I feel happy that we have this team on our side!!

 

Now to the weirdest thing ever. After the visit we headed over to Disney World for some much needed R and R for all of us. DS hyperactivity and other symptoms have been out of control so we needed the break without the demands of work and school. We had a great time, but DS was OBVIOUSLY not the same child we took to Disney back in February of 2011. On the last day we decided to hit the pool before we checked out of the hotel. DS had a fabulous time swimming and going down a water slide. Then he got REALLY cold, blue lips, the whole 9 yards. None of the other kids in the pool were cold at all. We got him out, warmed him up, got him dressed and then we got in the car to drive home. It was immediately apparent that he had changed. I am telling you this boy was completely normal!!!!! He had gone from extreme hyperactivity, choieform movements, having difficulty completing spoken thoughts, chewing on his shirt constantly, etc to being calm, well spoken with an actual dramatic improvement in sentence structure, focused and not chewing on his shirt at all. It lasted for 3 hours and then he gradually went back to the way he was before he got out of the pool. SO STRANGE!! Anybody ever experience anything similar????

[beeskneesmommy]

My son (5) tends to have an significant increase in symptoms whenever he goes swimming - I attribute it to chlorine and sometimes, stress, if he is taking a lesson and the coach is pushing him too fast for his comfort (needless to say we have stopped lessons for a while). What I can say is that my son is typical in presentation of PANDAS when he has a flare-up, although they are much less often that 1 year ago. However, when he has a flare, he can cycle very quickly - looking quite shaky in the morning then really good by the afternoon. All this being said, he has no comorbidity and is otherwise a healthy, typical kiddo except for PANDAS.

[trggirl]

That's interesting. I have read over and over that pools tend to set some kids off so I am always watchful, but I always sort of felt that the pool did my daughter good. I can't say for sure though.

[monarchcat]

How strange! It reminds me of how some PANDAS kids are when they are actively sick with a fever. I know when my son would get sick (especially strep) his PANDAS symptoms would disappear for a day or so, while he had a fever. Tics, behaviors, etc... all gone for those brief few days. Perhaps the dip in body temperature from the pool caused the same reaction, albeit briefly? Maybe it has something to do with the immune system being "called" to react to the new extreme situation and it stops the autoimmune reaction in the brain for a brief time.... I have no idea, but it's certainly an interesting phenomenon!