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Re: PANDAS update

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Kricket,

Do you have a good pedi psychiatrist, I truley dont know what I would do

without our she is always available by beeper in an emergency.

I cant offer much help on the ritual end as my own child just started with

this type of ocd. The killing, injury one is pretty common. She has had that

one often and never hurt herself. You need a MD who is good at adjusting

meds and reachable. Hang in there. Lori

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Hi Kricket, has one of the docs tested your son's blood for high antibody

titers to strep A? If these are high, right now when his OCD symptoms seem

to be exploding, you will have your answer whether your child has PANDAS

OCD. My daughter is a PANDAS kid and I also can name the day her OCD and

weird movements (tics) started (Dec. 8). If his titers are high, then yes

you can look forward to symptoms gradually tailing off as his circulating

strep titers reduce over time. Some PANDAS kids have very little OCD or

tics in between exacerbations following strep infections, though my child

has not been that lucky.

My daughter's symptoms also started with gruesome thoughts of sticking a

knife into herself, in her case her eyes. She also had obsessions of

cutting off her arms and legs at the joints. She had odd movements around

her mouth, and did do some self-injury things such as pinching herself black

and blue, and pressing and jabbing the edges or corners of objects into her

skin.

My child was also suddenly thick-tongued and clumsy. Have you noticed this

in your son? Acute PANDAS OCD is basically an " attack " on the basal

ganglia, which explains the obsessions, compulsions, odd movements, and so

on.

Benedryl was helpful for my child too, both in calming her down and

facilitating sleep, and also I believe in dampening down her immune reaction

(Benedryl is of course an antihistamine.) That last is my own theory, but

in any case it did seem to help.

Given your description of your son's problems I would almost bet he is

PANDAS. Your son's experience is a near copy of my daughter's.

Take care,

Kathy R. in Indiana

----- Original Message -----

> I posted last week about my 11 year old son and possibly having

> PANDAS. He was dxed with Asperger Syndrome at the age of 7.

>

> Anyway, for background info, he had pneumonia in mid November and

> was also vomiting so he was given phenegan for the vomiting. His

> PANDAS symptoms started on 12/15 with intrusive thoughts of sticking

> a knife into his stomach. We took him to the ER where it was

> determined that he was not suicidal. At the ER I also noticed that

> he was making weird movements with his mouth and hands.

>

> Anyway, last week his ped neuro said PANDAS was possible, but

> focused instead on the phenegan. We were told to give him benedryl 4

> times a day, etc. Well I then talked to the pharmacist and he said

> that the phenegan would have been out of his system 3 days after the

> last dose, and that the med couldn't be affecting him now.

>

> Well today I kept smelling a strong scent of soap. I finally

> realized that it was coming from my son. I asked him about it. He

> has been washing his hands repeatedly. I asked him, " so just after

> you have been to the bathroom? " . He seemed a bit embarrassed about

> it but I finally got out of him that it is due to " germs " and in the

> 2 hours that he was up he'd washed his hands at least 10 times! I

> didn't know what to do so I just said, please don't wash them

> anymore (cause he is using so much soap that his hands literally

> reek of soap). He said ok, but about 15 minutes after that he washed

> them again.

>

> I am about at the end of my rope here. I tried to call the ped

> neuro, but since it is Christmas Eve he wasn't there, so I called

> the local doc. She listened to what I said, but basically told me it

> was out of her scope.

>

> I am wondering how much worse this can get? When I spoke to the ped

> neuro he did say " this might get a whole lot worse before it gets

> better " and I am a little haunted by that. The local doc did say

> that if he starts to do stuff like self harm we are to bring him to

> the ER asap.

>

> I just want my regular kid back, you know? The Aspergers is easy for

> me to deal with, but this PANDAS stuff is not.

>

> Turning to you guys for advice and help...

>

> ~Kricket

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