Re: John 16's Mom's reply


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Posted by Ellie on May 8, 2002:
In Reply to: Re: Anyone here know much about PANDAS? posted by John 16's Mom on May 8, 2002:
You know, I didn't even realize I was playing a game of guilt in this search.
Yes, I'm sure you do understand how I feel. Mostly we are all handling this well.
We had a battle to keep us focused, as Paul was not allowed to attend school back
in mid-Feb. He's now homebound, getting a lot of support from the school system
to make up for the damaging and hysterical view they took of his disability.
Mustering all our resources to sort out right and wrong, meanwhile supporting
Paul as we all learn about this puzzling disorder and helping him get the tools
he needs... well, I can't say that I've stopped much to explore what I'm feeling
deep inside.

Before the school crisis came up I was reading a lot about the mercury in
vaccines, wondering if what was appearing to be a serious brain disorder in our
son might be a form of mercury poisoning. (From thimerosol a common preservative
in vaccines and possibly antibiotics). I understand heavy metals that find
their way to the brain block serotonin and/or dopamine receptors. But then I
ran into this PANDAS information and it sounds like a different mechanism, that
is, lesions. I presume there will eventually be articles about research that
brings more clarity for me. I am an insatiably curious person by nature. Paul
and I together have read quite a lot on the web to understand OCD and tic
disorders.

He is mostly doing really well on the fluvoxamine (Luvox) and Rispardol. We
are learning what stresses his system and elevates symptoms. He's in really
good spirits... in fact, I don't believe he has ever experienced the peace and
happiness he is now. At least not for a long time. He's very accepting --we
all are-- of this "name" for what he's experienced for so long. The things we
are learning to avoid have often come up in this forum and on other sites...
caffeine, sleep disturbance. By the time he goes back to school for his senior
year in the fall we hope the CBT will help him cope better in that most stressful
environment for him. He has managed to deal with his girlfriend breaking up with
him with no exacerbation of symptoms. He's a really creative kid and found how
to balance the loss and pain with creative activities all on his own. (I was
never so insightful at that age.) We were impressed.

Thanks so much for the mirror! I might need to take a little better care of myself
as well.

 Dear Ellie,

>>  I went through this same thought process after I heard about the possible connection between previous strep infections and the manifestation of OCD. I thought, "Wow, John had some strep infections when he was younger". But after short consideration, I just decided that it was no use worrying now about how he got the OCD. He has it now and we are dealing with it. You can't go back in your past and try to dredge up old occurrences to bring guilt upon yourself. What's happened has happened, and it's just best to let it go. We know that not all OCD is caused by strep, so you can never be 100% sure that the strep infections caused your son's OCD. Remember, nothing is ever 100% sure. So to give yourself peace of mind, just move forward and focus on the positive aspect of getting your son in the best state of wellness that he can reach. That is a better way to look at it, in my humble opinion.

>>  I haven't read any research about the effectiveness of antibiotic usage for present day OCD symptoms. As a matter of fact, my son was on antibiotics when he first presented OCD symptoms. I immediately thought that the antibiotics had something to do with his anxiety symptoms because they came on so suddenly and strongly. Maybe someone else will have some more info to post for you. Good luck with your son. I understand how you feel.

>>  John 16's Mom





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