Re: Re: Immunovir break and restart

September 22, 2010

We got our son tested through Dr. Madeleine Cunningham’s lab at the

University of Oklahoma. I am wondering if Dr. G uses her PANDAS test and, if

not, why not?

From: [mailto: ] On Behalf Of kathd9

Sent: September-22-10 8:51 PM

Subject: Re: Immunovir break and restart

Thanks - yes he is on an SSRI - celexa I think it is a good fit for

him. I have been suspicious of PANDAS since I first heard of it 3 years ago.

Everytime I get his strep checked he is neg except for the last time. Dr G

knows this and we are doing a second ASO titer test this month. He didn't do

anything about the ASO being positive this time because he said previous

tests were neg and we also did a throat culture and it was neg. He has

mentioned possibly being on a low dose antibiotic I forget the name - starts

with an E. I think that PANDAS is part of my guy's issues. He mouths stuff a

lot and gets pretty frustrated and pushes on his chest to show us he's

upset.

Kathy

>

> From: kathd9 <kathyd3@...>

> Subject: Immunovir break and restart

> <mailto:%40>

> Date: Wednesday, September 22, 2010, 4:26 PM

>

> Â

>

> My son has been doing fairly steady on since Jan 2010. Nothing major

like burst in language just better comprehension and a better sense of

himself and others. We have just re started immunovir for our 2nd time after

the 2 week break and I am seeing a few negatives. He gets irritated

extremely quickly and is biting which used to be just mouthing but now is

extreme tension which turns to biting. He is also not sleeping well. we had

a great 2 weeks off Immunovir and now I'm wondering if this medication is

really worth all these side effects. I've looked at my notes to Dr G and all

these symptoms are noted in the past which makes me worry because I thought

maybe they would pass. Just curious if anyone here has had success on

without Immunovir? I know people don't go on it because they can't get it.

We're Canadian so its fairly easy for us to get so I just want to know your

opinions. I am going to send my update to Dr G about this now.

> Kathy in BC

>

September 22, 2010

In addition to checking his ASO titer also check his DNASE. Go to

www.pandasnetwork.org for lots of great info.Â Some people do not show titers

but do have pandas. The anti biotic ERY PED is what Dr G likes.Â We just

started it and are seeing gains but I am thinking of switching to AzithromycinÂ

since that is what all of the PANDAS people are using......it tastes better and

has a much longer half life so will be esier to use. They are very similar but I

guess Azithro is newer than Ery Ped.Â THere are lots of symptoms of PANDAS and

sme docs will treat if the symptoms are there even if the titers are not high.

My son is having major separation anxiety from me which is a classic symptom of

PANDAS

Â

From: kathd9 <kathyd3@...>

Subject: Re: Immunovir break and restart

Date: Wednesday, September 22, 2010, 7:50 PM

Â

Thanks - yes he is on an SSRI - celexa I think it is a good fit for him. I

have been suspicious of PANDAS since I first heard of it 3 years ago. Everytime

I get his strep checked he is neg except for the last time. Dr G knows this and

we are doing a second ASO titer test this month. He didn't do anything about the

ASO being positive this time because he said previous tests were neg and we also

did a throat culture and it was neg. He has mentioned possibly being on a low

dose antibiotic I forget the name - starts with an E. I think that PANDAS is

part of my guy's issues. He mouths stuff a lot and gets pretty frustrated and

pushes on his chest to show us he's upset.

Kathy

>

> From: kathd9 <kathyd3@...>

> Subject: Immunovir break and restart

>

> Date: Wednesday, September 22, 2010, 4:26 PM

>

> Ã‚Â

>

> My son has been doing fairly steady on since Jan 2010. Nothing major like

burst in language just better comprehension and a better sense of himself and

others. We have just re started immunovir for our 2nd time after the 2 week

break and I am seeing a few negatives. He gets irritated extremely quickly and

is biting which used to be just mouthing but now is extreme tension which turns

to biting. He is also not sleeping well. we had a great 2 weeks off Immunovir

and now I'm wondering if this medication is really worth all these side effects.

I've looked at my notes to Dr G and all these symptoms are noted in the past

which makes me worry because I thought maybe they would pass. Just curious if

anyone here has had success on without Immunovir? I know people don't go on

it because they can't get it. We're Canadian so its fairly easy for us to get so

I just want to know your opinions. I am going to send my update to Dr G about

this now.

> Kathy in BC

>

September 22, 2010

I would also test thoroughly for Lyme disease â€“ just my 2 cents....

From: [mailto: ] On Behalf Of Fund

Sent: September-22-10 10:06 PM

Subject: Re: Re: Immunovir break and restart

In addition to checking his ASO titer also check his DNASE. Go to

www.pandasnetwork.org for lots of great info. Some people do not show titers

but do have pandas. The anti biotic ERY PED is what Dr G likes. We just started

it and are seeing gains but I am thinking of switching to Azithromycin since

that is what all of the PANDAS people are using......it tastes better and has a

much longer half life so will be esier to use. They are very similar but I guess

Azithro is newer than Ery Ped. THere are lots of symptoms of PANDAS and sme

docs will treat if the symptoms are there even if the titers are not high. My

son is having major separation anxiety from me which is a classic symptom of

PANDAS

From: kathd9 <kathyd3@... <mailto:kathyd3%40shaw.ca> >

Subject: Re: Immunovir break and restart

<mailto:%40>