PANDAS/ Neurology visit

[lorib]

Hi Everyone,

 

I had posted about two weeks ago regarding my son's strep infection and his new tics/ocd symptoms. His pediatrician diagnosed PANDAS. He finished his last course of Omnicef about two weeks ago. His symptoms have definitelty decreased, but he is still confessing to everything under the sun & has some hyperactivity (spinning & shaking his head back & forth - mostly at night). He's also still clenching his hands into fists occasionally.

 

I've learned a lot in the past few weeks (mostly from this forum - thank you all!). I can't say that I understand all of it, but this info has definitely helped to prepare me for a visit with Dr. Trifiletti (a neurologist that seems to be familiar with PANDAS) tomorrow morning. Before I go to the appt., I just wanted to post some thoughts and see if any of you have any opinions/advice, etc...

 

One night, during the few weeks that his symptoms were really bad, he got a 103 fever - he usually doesn't get fevers and never this high. I gave him Motrin and he fell asleep, but was flailing arms and legs and head while he slept. Fever broke, then started climbing again. I gave him Tylenol, fever broke and no more shaking. He slept thru the night and woke up the next day as if nothing had happened. No more fever, no other symptoms, nothing. My pediatrician thought that this was unrelated to the strep; she said it was probably a virus, but no one else in my house got anything. It was weird. I mention it only because I'm curious to see if anyone else had anything similar happen during time when PANDAS was active.

 

My son (who just turned 6) has severe food allergies (Peanut, tree nut, soy, sesame, eggs), as well as a lot of environmental (grasses, trees, etc) ones. He was diag. when he was 5 months old (thru IgE testing) and just recently got tested again. The day he got strep tested, he had broken out in patches of hives all over his body (not a rash). Benadryl (which usually eliminates the hives, did not this day - which is why I took him to the hospital where they tested him for strep - which came back from the lab as positive). I'm thinking those hives were from the strep - his immune system reacting to it. Does that make sense? Could you get hives from strep? Could he just have an overreactive immune system? Should I have his allergist IgG test him, as well?

 

I also read a thread here about high histamine levels and the sulfate ion system. I'm wondering if that could be part of this puzzle, as well.

 

I also read about MTHFR here. I have that gene mutation (homozygous). It's never impacted me (that I know of), but could that be an underlying cause of his reaction to strep? Should I have him tested for this? What tests would anyone recommend?

 

 

Again, being new at all of this, I'm still trying to digest it all...I appreciate anyone's thoughts/comments/opinions. I think it's so wonderful that you all take the time to share info & experiences...it's helping me a lot!

 

 

Thanks,

 

Lori

[bmom]

Hi Lori, I started on this path a little over a year ago and unfortunately after taking my son to many doctors, no one mentioned PANDAS. A year later I have finally figured it out on my own and am trying to find a doctor that will work with it. We are on our second episode of PANDAS symptoms right now and I think for what ever reason, during an episode their little bodies overreact. My son both times he has gone through this has gotten a rash on his neck from the sun. At any other time, he does not. It seems to put their bodies into overdrive. He does have environmental allergies, but they are much worse when he is in a PANDAS eoisode. Everything seems to be put into overdrive and takes awhile to settle down. Please let us know what your neurologist suggests. We went to two and they didnt mention this so I guess at least he is ahead of the game!!