Re: Need Help Here For Son

[Guest guest]

Dear Kricket,

You're not clutching at straws at all, and your ped. neurologist should

be well aware of PANDAS. The one thing that not so many people are aware of is

that OCD can be set off like that from infections other than strep, and is

then technically called PITANDS. My daughter had a sudden and dramatic onset of

OCD when she was four following a bad viral illness. It took years before a

psychiatrist agreed with me that it was from the illness.So you may run into the

attitude that if it wasn't a strep infection, it can't be the autoimmune

version of OCD. I think you are right in checking it out. OCD is very treatable

when properly identified and treated correctly (cognitive behavioral therapy,

alone or combined with antidepressants).

I am running to get my daughter (now 11) to her psychiatrist's appt. so

this is very brief - but do get it checked out. I think you're on the right

track.

Best wishes,

in NV

[Guest guest]

Hi

Oh do I feel for you...where to begin. I have a child with PANDAS who

cannot and will not get another vaccination. Vaccines for these children

are very troublesome. A vaccine takes about 7-10 dyas to release into our

system and activate the immune system. Since these children are immune

compromised, vaccines can start a whole series of ocd and tic behaviors.

Even tics that are quite exggerated and look like what they used to call

Sydeams Chorea. Your son may have gotten a double whammy with both the

vaccine and the illness.

The Zithromax was probably a good idea. The problem is the vaccine may take

up to 10-12 weeks to calm down. His titers will stay raised for months

against the flu, you could ask the doc who gave it and don't be suprised

when they do not know the answer! When I had to call about a vaccine they,

even the med company, knows so little about it you will be shocked that we

allow them to be given. They do not know how long it lasts, prevnts the

flu, etc.,.

Try to do things to chelate his system, some people believe that cilantro

and other items work. You should notice within two to three weeks that the

bad symptoms get milder. Is there someone who will prescribe you a

preventative dose of an antibiotic?

Best of luck to you and remember it will go back to normal but with vaccines

it takes even longer than an illness. My thoughts are with you.

Lynne

>From: kricketgirl68@...

>Reply-To:

>To:

>Subject: Need Help Here For Son

>Date: Tue, 16 Dec 2003 12:55:21 -0000

>

>Hello all,

>I took my 11 year old son to the ER last night, because he confided

>in me that he was having intrusive thoughts about knives and wanting

>to stab himself in the stomach (this is entirely new behavior). He

>has never been dxed with OCD, but was dxed at age 7 with Asperger

>Syndrome. We took him in and I noticed a few other things, he was

>doing this strange thing with his hands and also lip smacking quite

>a bit (this is new, he's never had any tics or anything, nor does he

>stim). He confided in the doctor that he also is thinking that

>people want to kill him, and this started about 3 days ago. He is

>terrified of these thoughts and they have come out of the blue.

>

>I casually asked the doctor could this have anything to do with the

>pneumonia that he had about 3 weeks ago? He said yes. My son was

>very ill and was put on Zithromax (they never tested whether or not

>the pnuemonia was viral or bacterial). So based on the doctor saying

>it could be related, I've been looking online and found out about

>PANDAS and am wondering if this sounds to people here like this

>could be what we are dealing with? I am at a loss. The only other

>thing of significance is that he got a flu shot on 12/8 (we

>typically don't get them) and this happened last night (the ER

>visit, 12/15).

>

>Any thoughts most sincerely welcomed. I am calling his ped neuro

>today to discuss perhaps changing his meds (he currently takes

>desipramine and tegretol). How would I even bring up the possibility

>of PANDAS with the ped neuro? I don't want to seem like I am

>clutching at straws, but this honestly seems to fit what has

>happened to him. Please advise.

>

>~Kricket

>

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[Guest guest]

Hello again,

Thank you for the replies. I phoned the ped neuro's office today and

spoke with them. The nurse called me back to tell me what Dr. Glass

said. He doesn't want to do any med changes at this point because he

wants to see how this plays out (wait and watch). He said that

PANDAS is a real possibility, and advised of two nearby hospitals to

take my son to if this gets worse. He said the flu shot could have

played into things as well.

The nurse did say " we have a question that we NEED to ask, by any

chance was he given Phenergen during his illness? " Yes, I said,

cause he was. I don't know why she would ask this and frankly is is

a bit disconcerting to me. I asked her what that was about and she

said she did not know, just that she was instructed to ask that by

Dr. Glass. Does anyone have any idea what he may be getting at with

this? I believe they are going to call tomorrow, as it is now after

hours.

My son had more intrusive thoughts today and sought out the help of

the school counselor (we briefed the man beforehand). My son did do

a few more of the " tic " type things today.

I appreciate any and all thoughts.

~Kricket

> Any thoughts most sincerely welcomed. I am calling his ped neuro

> today to discuss perhaps changing his meds (he currently takes

> desipramine and tegretol). How would I even bring up the

possibility

> of PANDAS with the ped neuro? I don't want to seem like I am

> clutching at straws, but this honestly seems to fit what has

> happened to him. Please advise.