Re: Re: PANDAS/strep question

[Guest guest]

Hi,have you looked at the site www.latitudes.com? Also have you read the book

Saving Sammy? The Md that treated him is in Marlton NJ-we are waiting for a

script to come regarding what kind of blood work to have done to rule out

pandas.She will do  a phone conference.Dr.Nicolaides.The area code is 856-.I

called information and that is how I got her number.My daughter has been playing

with the book " her journal " and she is at school and I can't find it!I have the

number written on the book.Hope the above is helpful,Steph(mom of ocd child 6

1/2 years old)

Subject: Re: PANDAS/strep question

To:

Date: Friday, October 9, 2009, 9:22 AM

 

I can post more later- my kids have flu and I am on my way to

doctor.

Go to www.pandasnetwork. org for more PANDAS info.

Your physician should KNOW that sinuses are frequently infected with strep,

especially when it is chronic. Do you see an improvement on the Omnicef? The

improvement with antibiotics is the best evidence of PANDAS. Sorry I can't

write more now, but will ater.

Colleen

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> This is for Colleen or anyone else out there who might know. ?Where can I go

on the Internet to print out something for my son's pediatrician that shows

strep can be found in other places in the body such as sinus and ear? ?And where

can I get some printed information regarding PANDAS occurring without raised

strep titers? ?I have been round this with her, and don't think she's listening.

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> The last 2 times my PANDAS son (age 13 now - diagnosed at age 7) has had a

spike in his OCD, along with physical complaints, we have brought him in and she

has diagnosed a sinus infection. The first time (June) she also did a throat

swab which was negative. ?She gave us 30 days of Omnicef, so I really didn't

care what she called it, as long as I had the antibiotic in my hands. ?He spiked

again in August without any physical complaint and for some reason I completely

blanked out about his " sinus infection " from June and the PANDAS connection. ?We

had discontinued his Abilify and he was ramped up with anticipatory anxiety

about starting school and we looked to that as the cause.

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> ??Last Sunday, he completely freaked out - in a different way than usual.

?More panicky - more out of control - more intense. ?Woke up Monday saying he

felt awful and that something wasn't right with his brain. I took him into the

pediatrician, who diagnosed another " sinus infection " . ?She did not want to do a

strep swab or blood test, ?seeing as these were usually negative and he hadn't

had had a positive strep test since spring of '07. ?So I took my Omincef and

moved on. ?The first few days this week, his OCD and worrying was like a light

switch turning on and off. ?Fine one second, then overcome the next. ?Day 5 on

the Omnicef, he is functioning again. ?The pediatrician is sending us to an

" allergist " to see if an allergy is turning into a repeated bacterial sinus

infection. ? While the pediatrician does not " poo poo " the PANDAS idea and feels

the " sinus infection " may cause the same reaction to the brain as the strep, my

son is the only PANDAS

patient she has seen in 15 years. ?I am concerned about what may happed with

him after the Omnicef runs out, and feel like we may be barking up the wrong

tree seeing this allergist. ?The only info I can find on strep being elsewhere

in the body and negative strep titers not being indicative of anything is all

anecdotal from parents. ?So if anyone has a link to scientific articles etc that

a doctor would " respect " , I would be very appreciative.

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> - in MI?

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