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Re: Hello! I am new here!

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,

Welcome to the group. We have lots of parents of brachy babies in this group

so you should be right at home!

I'm wondering why surgery would be an option to correct the brachy? Your

daughter seems young enough that surgery wouldn't even be an option unless

she had craniosynostosis. Has she had a CT scan to rule out cranio?

Hopefully you will get some good responses from other parents who have dealt

specifically with brachy. I know that banding can be very effective for

brachy and Lauryn is DEFINITELY not to old for banding therapy!!!

Good luck and please keep us posted. You have come to the right place for

advice, support and friendship - this is a great group of moms, dads and

professionals!!

Marci (Mom to )

Oklahoma

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Hi ,

First, what a cutie pie is! I have read that surgery is only a last resort, and with only being 8 months old, I would think a helmet could work wonders! Many members have started much later, and received an ample amount of correction. Check into the helmets, DOC, STARBAND or locally made, to give you an idea of what can be done in this regard. Good luck!

' Mom

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Dear Marci, Thankyou for the welcome. Her pediatrician and Dr.Billmire have

consulted and said that she seems to have premature fused sutures and that

they should be allowing more room for her brain to develope but, they are

not. I am unsure as to why this is happening. Sincerely,

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,

It kind of sounds like your baby might have craniosynostosis if the sutures

are prematurely closed. You might take a look at www.cappskids.org - this is

a sight for cranio support and if it is cranio you will get all the support

and answers you need there. Of course, you will have the support of this

group as well no matter what the outcome is. We have a member here named

whose daughter was diagnosed with cranio. She has been through the

corrective surgery and then her daughter wore the DOCband for protection and

additional correction. I'm sure you will get a response from her and she will

be able to give you all sorts of help and advice.

Let us know how things progress. Good wishes to you!

Marci (Mom to )

Oklahoma

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:

There is also a group that provides support for families of babies with fused sutures. You can find them at

CranioandParentsSupport/?yguid=75062272

I hope Lauryn will only need a helmet, but just in case, you should have the support you need. These people might be able to help you with the wording of the CT report as well.

Good luck, and please keep us posted.

Kendra

Re: Hello! I am new here!

Dear Marci, Thankyou for the welcome. Her pediatrician and Dr.Billmire have consulted and said that she seems to have premature fused sutures and that they should be allowing more room for her brain to develope but, they are not. I am unsure as to why this is happening. Sincerely, For more plagio info

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Dear Marci, Thankyou sooo much! I joined the CAPPS! It is very informative

but, I am going to stick with you all too! :o) I appreciate all of your

input! You are great! Thanks for making me feel welcome! Sincerely,

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,

I'm glad you joined CAPPS - you will get so much support and help from them

if it does turn out to be cranio! Like I said before, I'm glad you joined us

as well!

Marci (Mom to )

Oklahoma

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