Re: re: anybody have a child like this?

[Guest guest]

Caroline,

Have you considered taking her to Dr. Goldberg? I would assume that you

have spent a lot of time at Riley (I seem to remember that you are from

Indiana).

I know it seems like an impossible thing to do, but it really hasn't been

that bad. If you can afford it you really might want to consider it.

A few years ago at Riley I was told that my son (now) 6 had a horrific form

of epilepsy (Lennox-Gastaut Syndrome) and that it was typically

degenerative. Thanks to our local pediatrician and Dr. Goldberg, he is now

in regular first grade (with some help) and has had no seizures for over a

year. I remember very clearly what Dr. Goldberg said when we told him the

Lennox-Gastaut Syndrome diagnosis. He said that children aren't supposed to

disintegrate (referring to childhood disintegrative disorder). He did not

accept that and now my son is much, much better. He is not caught up to

where he should be, but in some areas he is way ahead now. He has gone from

losing all speech at age three to reading aloud at above the 5th grade level

at age six.

Although the docs at Riley are great at running lots of test, I found that

for my kids, they weren't running the right tests and even if they had, they

would not have known what to do with the results. I needed someone on the

cutting edge. When we go to Riley now, they'll read the list of meds my

sons are on and ask what they are for, and we tell them. They don't

challenge it, but sadly they just don't seem all that interested in why my

son got better and the kids they are treating aren't.

Caroline G

> From: caroline beam milligan <CaCI32@...>

> Reply-< >

> Date: Mon, 20 Nov 2006 15:12:50 +0000

> < >

> Subject: re: anybody have a child like this?

>

> hi,

>

> I was wondering if anyone had a child like mine? She is 15. She has

> bouts where her hair falls out, lesions in her scalp, occasinal swollen

> lymph nodes, Raynaud's syndrome, Livedo Reticualris, one blood test

> indiacated a 1:640 lupus titre, follw up showed 1:80. postive for

> Epstien Barr, Postural Orthostatic Tachycardia Syndrome, and has had

> blood work come back indicating Positive Anticardiolipin Proteins,

> however the doctor said she couldn't confirm it, (this after 11 positve

> tests), 4 of the test indicating blood clots, The doctor says

> something is evolving she just isn't sure what. (so comforting) Now

> she has SMA or Wilkie Syndrome, (Superior Mesenteric Artery Syndrome),

> This is considered a wasting disease. She has been told to drink 4-5

> boost drinks a day, this does help the nausea. They will retest after

> she gains 5 pounds and maintains it. Beside that she is an Aspergers

> girl with some sensory issues and has reflux disease. WE dont know

> what to do now or where to go any advice.?