Re: anyone there I need help right now......

[Guest guest]

Guess what we traveled from Ohio to Florida to Gainsville by plane to

see Dr. and an associate. However, I do have to say I

appreciated her diagnosis of PANDAS and suggested treatment such as OT

and meds for my son. However she couldn't prescribe meds over state

lines for my son. I didn't know this at the time. So I came home and

was able to get our neurologist to prescribe the Abilify for the ADHD

and moods and the immunologist to write the script for the Omnicef for

the strep reaction. I do feel there are other Dr's out there one in

particular in Chicago named Dr. K who are treating this much more

progressively. Dr. K suggests IVIG to cure the PANDAS. After too many

strep reinfections a little bit of who they were before is replaced by

a new less stable mentally child. There is a big problem with NIMH and

Sweedo's research on PANDAS. It has put a giant hold up on PANDAS

research and for some reason skeptics have criticized her work. Feel

lucky to work with Dr. because she is one of the leading Dr.'s

on the research with Sweedo but know for some reason they are not able

to come out with the research that IVIG can cure the PANDAS OCD. If

you get a chance ask her about the IVIG and post her response here.

Supposedly Dr. K has worked with Sweedo to use her formula of IVIG to

help PANDAS kids recover. Please keep me posted of your work with Dr.

. I feel we are too far away to really consult with her and

there are few Dr.'s in Ohio who get PANDAS. Howver I have kept in

touch with her by email a few times. I am willing to accept the TS

diagnosis to get my son the help he needs from a knowledgable TS DR.

even if he doesn't believe in PANDAS.

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> > Is he on OCD medication for his unbearable contamination fear? Â My

> contamination fear always made coming home most difficult. Â I hated

> going out because I knew that eventually I would have to come back

> home and inevitably I would feel contaminated and  I would have to go

> through the rituals of long showering, washing my clothes, throwing

> things out or whatever. Â The thought of having to do these rituals

> was so aversive, but the fear felt so real that I felt to do otherwise

> was too foolhardy. Â If this is what your son is experiencing, how

> does he finally feel safe enough to come in the house? Â What does he

> do to " clean off " ? Â It sounds like he needs to be seen by a very good

> OCD specialist who can do intensive exposure and response prevention,

> but for me that only worked after I was on medication for a while,

> which for me seems to be Anafranil. Â

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> > My son 13 has rages too but not as often as a couple months ago.Â

> He typical rages outside and he struggles with how to get clean.  We

> have just arrived home from a place where he felt he got really dirty

> and he doesn't want to come in the house and then he has a melt

> down. If I ignore him, h

> > e tells me (his ocd tells me) I'm being mean and it only adds fuel

> to the firest. This can last 1-3 hours.  He had one on Sunday

> after church and that was the first time I ignored him.  I went

> inside and did some laundry, etc and then I heard noises. He broke

> our fence and did a few other things around the house that will cost

> me to repair. We are already struggling with money due to all the

> therapy, etc.  Anyone else struggle with this and ideas? Â

> Ignoring him inside is safe but outside does not seem to be safe.Â

> His drs have told me to ignore him as well and that he will come in

> when he is ready but in the mean time, I don't like the

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> > damage that occurs. thanks!Â

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[Guest guest]

My son is on 3 different meds and is doing ERP with a specialist in Dallas.  He

has made much improvement since he was diagnosed in April.  It's just little

steps and I will take what I can! 

[Guest guest]

Was he diagnosed with PANDAS in Dallas? What type Dr. diagnosed him?

What meds are they using currently for him? I am glad he is making

progress. In the beginning my son seemed to make a full recovery after

the episodes, however after repeat strep infections and PANDAS

reactions he started to permanently remain somewhat changed. Now the

moods and compulsive likes are always there. The ADHD got bad so we

had to medicate for school purposes. The tics seem to come and go but

he does have mild vocal squeals on a daily basis even on meds. The

motor issues have never resolved. He is now behind in fine, gross and

visual motor skills. We do OT twice a week to help him. I think he is

just behind and can catch up eventually. His behaviors are immature

emotionally but I think he can catch up in that area eventually too.

At six he doesn't stick out too bad. Now if he acted this way with

tantrums at 10 it may seem odd. Most people say it is like a typical

six year old boy!

Michele

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> My son is on 3 different meds and is doing ERP with a specialist in

Dallas.  He has made much improvement since he was diagnosed in

April.  It's just little steps and I will take what I can! 

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[Guest guest]

No PANDAS and no strep and yes, he was diagnosed in the Dallas area by our

family physician a psychiatrist and 3 different psychologists.  He started on

Paxil and it didn't help so now  he is on Lexapro and they just added Seroquel

because he was not functioning at school and Ativan as needed.  He has not taken

the Ativan yet.