prematurely fused soft spot- info and support needed

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Prematurely fused soft spot- info and support needed

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amother

Thu, Nov 25 2010, 10:27 pm

Today,I went for a well-visit with my 5 mth old DS. The pediatrician noticed that his soft spot fused prematurely.
He is sending me for a cat scan to decide if surgery Is necessary.
I am lost. And scared.

I had just been discussing with my husband how perfect, and comfortable our life is.
We have enough money to live on.
I love my job.
My kids are very well behaved and adorable.

And now the prospect of surgery looms..:-(

I would like to know if anyone has ever had this or similar experience.
In addition, I would like to know if anyone has info on a pediatric neurosurgeon that we can consult, my son is covered under hip medicaid. We have been referred to Dr. Howard Weiner in NYU hospital (in NY)

Any info would be kindly appreciated..

(Anon cuz I have quite a few acquaintances on board and would love to keep the situation under wraps until anything has been confirmed)

newyorker

Fri, Nov 26 2010, 12:37 am

We just went through a very similar situation, and we visited quite a few pediatric neurosurgeons. Feel free to PM me for more info - I'll gladly give you names and numbers...

IloveHashem613

Fri, Nov 26 2010, 12:45 am

OP I can't tell you anything from personal experience. But I have a friend who had this with her baby and he had to have surgery for it. And I'm sure at the time it seemed scary but b"h their baby is now a healthy toddler...hope that gives you chizuk. She told me that of all the types of brain surgery, this one is considered the smoothest one in the medical world...

wozgurl

Fri, Nov 26 2010, 1:32 am

I had this surgery when I was 4 months old. As a mother, I cant imagine how nervous you are but I can assure you that your baby will be just fine should the surgery be necessary CV. Just wanted to let you know that I have no long term effects and my head looks totally normal. My mom said that the recovery was pretty quick and easy and that the whole thing was much harder on her than me. Hope that helps. I hope they find no need to operate.

HindaRochel

Fri, Nov 26 2010, 2:07 am

A friends son went through this, and all is well with him now, many years later.

It is frightening of course, but it isn't that uncommon and your son will do fine.

When the surgery date approaches please give us his name so we may daven for his refuah.

prettyme

Fri, Nov 26 2010, 2:45 am

Is this term called - Craniosynostosis? If so I would also appreciate some input from anyone having gone through surgery or you can can pm me.

amother

Fri, Nov 26 2010, 8:40 am

prettyme wrote:

Is this term called - Craniosynostosis? If so I .

My pediatrician has not given me an official dignosis, but from reading online this is what I infer.

I have done a little research online.
The dr. Had made it sound as if surgery was inevitable but from the little I read (I refuse to read too much unnecessary info) I understand that the reason for the cat scan is to check if the brain has room to grow. And there are chances that there is.
So I am a lot less nervous and hoping and praying that all will be fine.
Yesterday was thanksgiving so we were unable to get an appointment for a scan. I will try to ask around for referrals and then make an appointment

sunshine!

Fri, Nov 26 2010, 10:41 am

Amother you can pm me for more info.

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