Wrist X-Ray

[Guest guest]

, , and all,

As I posted earlier, the wrist xray has to do with overgrowth syndromes.

It's helpful if there is also a brain mri. Many of our kids with special

needs seem to have larger heads or are taller than typical. However, with

the overgrowth syndromes based upon my research and speaking with a

specialist in the field, you are dealing with really huge differences in

size. My daughter is 4 but looks 5 or even older. Also important seems to be

the birth size and the head circumference is another biggie, although, my

daughter always had a big head circumference and that alone is not enough to

determine if there is a geneticially caused overgrowth syndrome.

I actually had gone to Children's Hospital in PA and saw a geneticist who ran

tests and did not bother doing the wrist xray bec. she didn't think the

overgrowth syndromes could be applicable. Then I went to Columbia Presy.

and saw a metabolic dr. there (who happened to be obnoxious) and he said

definitley I see an overgrowth syndrome.

At that point, I went on the net and found the Sotos Syndrome egroup

list and corresponding site. There's lots of info there. I found that

almost of these parents contacted the expert in the field, Dr. Schaffer from

the Un. of Nebraska who consulted with them at no charge. He had me do the

wrist xray. After looking at pictures of my daughter and our entire family,

a video of her, the xray, and mri, he was very confident that there was no

overgrowth syndrome.

However, I can tell you that if a child does have Sotos Syndrome, it is

believed to be one of the better syndromes, if I can use that term, because

kids tend to grow out of it in time. The therapies do not seem to be any

different than what we are doing.

I am still on that email list because there are great similarities. For

instance, the low muscle tone, upper teeth problems with enamel that my child

has, speech delays, etc. I have recommended proefa to parents on that list.

In the end, I think that my daughter's issues are not caused by something

inherited but something may have happened to the brain that cannot be seen in

a MRI based upon some preterm event or the tramatic labor I experienced.

I would encourage all of you to check out the sotos egroup though because

there are similarities and we all can continue to help each other.

Carolyn

[Guest guest]

, please keep us posted. This is all very interesting. I guess my

biggest question is does any onf these genetic tests really change

the course of therapy?

> Hi and Welcome!

>

> Speaking of " lots of therapy " I just took my two boys to their

> pediatrician yesterday and wanted to run something by you and

> everyone else to see if you've heard of this- on your list, etc. I

> take my children to a " special needs " pediatric group that is

through

> the Children's Specialized Hospital, and I love this group. One of

> the Doctors is a pediatrician who has a background as a child

> neurologist, and the other used to be a pediatrician with a

> background as a neonatologist. The pediatrician with a background

as

> a neonatologist just left and was replaced by a new

> pediatrician who has a background in Genetics from Beth Israel

> Hospital.

>

> With both children he looked at them in a way no other doctor ever

> has-and my two have been to quite a few neurologists, etc. With

> Tanner, he asked to see a picture of my husband, really looked at

> Tanner's features, the way he walked, etc. and asked all kinds of

> questions about what types of tests we've had for him. To make a

> long story short, he's written a prescription for me to take Tanner

> to get an X Ray of his wrist, and he wants me to take Tanner early

in

> the week (not towards the weekend like when I was there so blood

work

> doesn't get lost) to test to see if there are any genetic reasons

for

> Tanner's apraxia.