New here, Not new to PANDAS

[MashedTaters]

Hi everyone!

 

I have a 6 year old kiddo with PANDAS.

 

His first cold was when he was 2 months old, and it's been downhill from there.

 

He was diagnosed with BiPolar at 2 years old when he just could NOT sleep. (obviously the not sleeping would be part of PANDAS, and he's NOT bipolar!) He was placed in the psych ward for it also, and was in for 2 days. Since then it's been Raging (which now we know was infection based) OCD like behavior, LOTS of anxiety, and of course, LOTS of sinus infections, ear infections, anxiety attacks, upper respiratory infections, and undiagnosed infections (that relate back to pandas now)

 

It's crazy how everything relates back to PANDAS. I was reading up this morning, some more to see if his other symptoms, hallucinations, ADHD, and sensory issues were all related, and of course they are.

 

We go to our first PANDAS doctor tomorrow. I'm nervous. Our pediatrician treats PANDAS so we've just been seeing him, but now it's time for a specialist.

 

Here's his list this year so far:

 

4/14--Ear infection

9/30 upper respiratory infection

11/1/11 Nathan acting unsafe at school -Ear Infection

11/6/11 Sinus infection

11/28/11 Stomach virus for thanksgiving (anxiety)

12/15/11- stomach virus before christmas (anxiety)

2/24- wiped out from some illness

2/29- ear infection Sinus infection, upper respiratory

3/27- Sinus infection

5/3 sinus infection

5/15 Sinus infection

 

 

Uuuuugh, i HATE pandas.

[Kiera]

Welcome and sorry you find yourself here! Just wondering after reading the list of your son's infections if you've ever taken him to an ENT Dr? My ds's brain MRI (ordered by local pandas dr who's neurologist) revealed a completely occluded maxillary sinus, which we later had drained during T & A surgery and cultured positive. This is probably an avenue to explore.

[tpotter]

Sorry you're going through so much, but thank goodness you've now got answers. I'm pretty blown away that they would dx a 2 year old with bipolar. Never heard that one before

 

BTW, which PANDAS doc are you going to...you can PM me. Just curious. Good luck, and I'll keep you and your child in my prayers.

[ptcgirl]

A good ent sounds like an excellent piece of advice. Getting the allergies under control via dr b has also been important for my dd. sinus infections really mess her up too. Welcome to the forum. I know it really helps me to see what everyone else is going through too. God sent group.

[MashedTaters]

Sorry you're going through so much, but thank goodness you've now got answers. I'm pretty blown away that they would dx a 2 year old with bipolar. Never heard that one before

 

BTW, which PANDAS doc are you going to...you can PM me. Just curious. Good luck, and I'll keep you and your child in my prayers.

 

 

Right. It was the head of psychiatry too. :\

 

 

Thanks everyone. I can't wait to see how tomorrow turns out.

[MashedTaters]

So. After 8 (minimum, i didn't count them) vials of blood, 5 X-rays (3 head, 2 chest) and a referral to an ENT (that deals with PANDAS) we were out of there, 4 hours later. Holy. The doctor was SO through. Amazing, and she went through his whole history, from birth until now. She kept on saying 'this is so classic PANDAS,' and "yep, psych meds were a good idea to stop, i'm glad you went through that though, because otherwise we'd start there first'. Whew.

 

 

I have a RX for keflex, for 4 months first, then go back and get another RX (if this is the right one) in 6 weeks.

 

Adult multivitamin, and Omega 3's to boot.