Re: Questions for Kerrie!

April 20, 2008

,

I took my son to the ped in August because I thought he had strep throat. They told me had Fifth's disease. They did the rapid strep which came back neg. I asked for the culture and they refused. Within days of being sick my son became very clingy. He would cry if I left the room which was unusual for him. I thought it was just because he wasn't feeling well. After he was better it got worse and I thought it was because I really babied him when he was sick and thought it would eventually fade away. He also started saying "no" anytime you said anything, even if you weren't talking to him.

That was about it until about 6 weeks later. Almost overnight he started with some OCD behaviors, became really defiant, started with vocal and physical tics, became very antsy, and started doing this thing with his legs where he moves them like he's riding a bike all the time. He does it right up until the second he falls asleep. HIs focus/attention fell completely off the charts and he went from doing really well in school, reading and spelling 2 grades above level, and starting to integrate, to a kid who can't function, doesn't pay attention, screams, yells, cries, bites, pulls hair and takes off running. He throws himself on the floor in the hallways and it takes 2 people to walk him anywhere. He's become a total nightmare. It started in October and got progressively worse until now.

Based on blood work (PANDAS profile first in Nov, then again in March along with ASO and AntiDNAse titers) he definitely has PANDAS. We did more blood work for Dr. Gupta and based on those test results he says it seems like his immune system is working well other than this. I was concerned because I have rheumatoid arthritis which is auto immune.

As far as testing, both of his PANDAS profiles were horrible. The first one was really bad, and my DAN and both PA's we've seen in his office have said its the worst they've ever seen.

We started with Bicillin injections and have 3 so far and will get one this week. We are on day 20 something of a 30 day course of zithromax, and we have also done a medrol pack to help with inflammation. He's not getting any better.

Yes, it all started with the strep throat that I know he had in August that went untreated. Once he was diagnosed with PANDAS I went back and compared the symptoms/indications of strep vs Fifth's disease, and the symptoms my son presented with in August and there is no doubt in my mind he had strep the first week of August last year.

Kerrie

n a message dated 4/20/2008 11:35:37 A.M. Eastern Daylight Time, pudgeo9999@... writes:

I posted some questions for you but I am afraid they will get lost in all the posts...I hope I am not being too nosey...1. What were your sons symptoms that you knew something was wrong?2. What did your DAN try?3. what immune or blood test abnormalities are now showing up with your son?4. Did this start with an infection? fever?5. Is there a name for what he has? Is it full blown PANDAS??I wish you LOTS of luck in CA with Dr. Gupta and hope that it is the answer!! I am still learning so much...I appreciate all your help!My son is getting worse/more OCD and agitation...concentration is horrible. I called my Pedi on Friday and basically he told me the test results were wrong..that it's not possible to get the results my son did. I told him I needed someone to make sense of them. Kerrie, when you posted about high Igm,tubulin & ganglioside being possible brain inflamation that's the most info I've gotten! I feel I have to educate myself and not expect the Dr's to have all the answers..thanks!!! Sarag

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April 20, 2008

,

Just passing on a quick tip. My son's concentration and focus were

so horrible during the worst of his PANDAS symptoms and even after

the OCD and anxiety were under control we still had just horrible

focus issues. (he was an honor roll student pre-PANDAS) He started L-

tyrosine 1000mg with 50mg of P5P (B6) on an empty stomach as soon as

he woke in the mornings. This started about 6 wks ago. He just

brought home a mid term progress note that would have landed him

back on honor roll had it been an actual report card. No question,

it's the L-tyrosine, it's the only new adjunct we've added. He's 14

yrs old, weighs 120lbs. I wouldn't part with this supplement, he's

so much happier blending back in during class. These are the best

grades he's had in 2.5 yrs since the second PANDAS episode began.

Hope that's of some help to you and your son, I'm sure sorry for the

incredible run around you're getting, though I can't say I'm

surprised. Gayle

>

> I posted some questions for you but I am afraid they will get lost

in

> all the posts...I hope I am not being too nosey...

> 1. What were your sons symptoms that you knew something was wrong?

> 2. What did your DAN try?

> 3. what immune or blood test abnormalities are now showing up with

your

> son?

> 4. Did this start with an infection? fever?

> 5. Is there a name for what he has? Is it full blown PANDAS??

> I wish you LOTS of luck in CA with Dr. Gupta and hope that it is

the

> answer!!

> I am still learning so much...I appreciate all your help!

> My son is getting worse/more OCD and agitation...concentration is

> horrible. I called my Pedi on Friday and basically he told me the

test

> results were wrong..that it's not possible to get the results my

son

> did. I told him I needed someone to make sense of them. Kerrie,

when

> you posted about high Igm,tubulin & ganglioside being possible

brain

> inflamation that's the most info I've gotten! I feel I have to

educate

> myself and not expect the Dr's to have all the answers..

> thanks!!! Sarag

>

April 20, 2008