Re: never posted before /

[Guest guest]

We got engaged in St and the following year we rented a house

for 10 days on St. . My vision of heaven looks a lot like Cinnamon

Bay. But despite promises to go back there, life keeps getting in the

way.

Can you send me any links to things you've found at NIMH re: the basal

ganglia? My son's PANDAS has just reared it's ugly head again. He

tested negative for strep last week but his glands were swollen and

the doctor at the walk-in clinic felt that after what we've been

through this fall, it would do no harm to put him on Augmentin. For

most of the week, his twitch was mild and his moods, though obvious to

us, were manageable.

Most of the weekend, he hardly twitched at all, So I started to think

we dodged a bullet. Then last night, the big twitch showed back up.

This twitch involves his whole upper body. Like a huge sneeze - he

freezes, waits for the twitch to come, brings his arms up close to his

body, then his head snaps forward and his jaw snaps shut - exactly

like a huge sneeze but with no sound. If he's holding a glass of

something, the liquid goes flying across the room. If he's walking, he

stops dead in his tracks, even in a busy parking lot with oncoming

traffic.

This morning, he was upset about going to school - didn't want people

to see him this way.

We see a new pediatrician this Friday - for those of you so inclined,

please say a prayer that this one believes in PANDAS and is willing to

help us search for answers. I am so tempted to write a letter to Dr.

Swedo at NIMH begging her to look into the use of an

anti-inflammatory. If rheumatoid arthritis is an auto-immune disease

that causes inflammation of the joints and Celebrex acts as an

anti-inflammatory, shouldn't you be able to treat PANDAS with

something similar? What do I know - I was horrible in chemistry. But I

can't keep showing up at work near tears because of what this beast is

doing to my child (and the rest of the family).

Anyone have any ideas, besides hope, patience and prayers?

Oh, to be in St. 's...

>

> What a coincidence! I just got back from a heavenly week in St.

> .

>

> I've been doing a lot of OCD research on the NIMH website. Many

> people researching OCD (pursuing causes, but not close to any

> treatment really). Interesting ideas about damage to the basal

> ganglia. I can burst into tears at a moment's notice when I see my

> once vibrant happy son unable to walk through the kitchen door

because of contamination.

>