Re: More on the MRI - Cheryl

October 1, 2004

Cheryl - OK, I just went to my personal email and got your long

posting about Landen, with all the background details. Now reading

all of your emails, I am going to correct my posting to

the listserve about the 2nd MRI.

I have to be honest that without seeing photos of him, it is hard

for me to guess at whether or not he has RSS. However, what you are

describing does not sound like an RSS child. It sounds like other

things are going on, and I think your neurologist is on the right

track to keep investigating.

Do you live in Chicago???? It would be great if you could see

someone like Dr. Levy, pediatric endocrinologist, at the MAGIC

Foundation New Heights Clinic. Heis also at Univ of Chicago but the

wait is much longer. Dr. Levy has seen a bunchof our RSS kids at

different times. He might be able to give you some idea, but

unless your other children are 95% height and weight, I have simply

never heard of an RSS child without GH who is at the 50th

percentile. Definitely there are some that are born at 6 or 7lbs,

but have had siblings born at 8-9lbs, but 50th percentile, wow!!!!

Goodluck, and keep us posted on everything that goes on.

> Our 13 month old is having an MRI done next week. The neurologist

is

> looking to see if there is brain injury that is causing his low

> muscle tone. He has already had an MRI done at 6 months of age.

The

> doctor claims that the water content on the brain lessens after

the

> age of 1 and she will be able to see things that weren't able to

be

> seen before.

>

> Has anyone ever heard this or had any experience w/ having 2 MRI's

> done so close together? Our concern is that she is just ordering

> tests to be doing something until a diagnosis is found.

>

> Thanks for your thoughts!

> Cheryl Bremer

> mother of Landen, 13 mo, possible RSS diagnosis

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