View Poll Results: Have you heard of Craniosynotosis?
Yes 21 32.31%
No 38 58.46%
my child has cranio 8 12.31%
I know someone with a child with cranio 5 7.69%
Multiple Choice Poll. Voters: 65. You may not vote on this poll

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Old 05-01-2010, 10:59 PM   #1
mommyjamieof2
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Are you aware of Craniosynostosis?

I am a bit surprised that there are no topics on this site regarding Craniosynostosis but at the same time not since awarness is so desperatly needed.

I have a 7 year old that was misdiagnosed at birth with molding when his metopic sutures were fused. We then went until his 2 year well check with out ever having any concern expressed about his head shape. We were then told that it was cosmetic and don't worry about it. Now so many years later while searching for answers regarding my thyroid problem I came accross the link between craniosynostosis and hyperthyroid. Well I was hyperthyroid during pregnancy and I started to read into my sons condition and found it was much more then a cosmetic issue. This could have caused intercranial pressure and caused retardation, blindness, learning problems, vision problems, even death!
We are very lucky to this point he does not seem to have suffered from having the cranio but we are now looking at doing a surgery that was ment for a baby and it will be more difficult for the surgeon and on him being as the bones are hard in his skull now.

I wish I would have been given the opportunity to make this decision to have surgery when he should have had it. I want every pregnant woman out there to be aware of their baby's head shape and be your childs advocate make sure you know to the fullest extent what any condition entails don't rely on your pediatrician because all to often they are to busy to recognize a problem that could be potentially life altering.

If you have concerns about your baby's head shape please visit craniokids.org

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Old 05-02-2010, 08:53 AM   #2
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Re: Are you aware of Craniosynostosis?

I just wanted to say I am sorry mama that you are going through this and am appreciative to the space you have created to help inform others. Prayers and thoughts to you and your child, as you go down the road of surgery and healing.
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Old 05-02-2010, 09:04 AM   #3
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Re: Are you aware of Craniosynostosis?

Thanks for sharing
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Old 05-02-2010, 12:15 PM   #4
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Re: Are you aware of Craniosynostosis?

That is alot of No results I am glad I took the time to post here I hope to have helped.

It is estimated that craniosynostosis affects 1 in 2,000 live births. It can be the result of an inherited syndrome or sporadic. In sporadic cases, the cause is unknown.
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Old 05-02-2010, 03:31 PM   #5
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Re: Are you aware of Craniosynostosis?

My DS (now 5) had his front sutures fused. It was very pronounced as an infant. We saw a specialist and did MRI/CT scans every 3 months for the first 2 years. There was never any cranial pressure and ample space in other sutures. It was very scary. Oddly enough my niece had it too.
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Old 05-02-2010, 06:56 PM   #6
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Re: Are you aware of Craniosynostosis?

thank you for sharing your story and teaching me a bit more about this!
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Old 05-02-2010, 10:22 PM   #7
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Re: Are you aware of Craniosynostosis?

Quote:
Originally Posted by Eph&Ella View Post
My DS (now 5) had his front sutures fused. It was very pronounced as an infant. We saw a specialist and did MRI/CT scans every 3 months for the first 2 years. There was never any cranial pressure and ample space in other sutures. It was very scary. Oddly enough my niece had it too.
Would you be willing to share pictures? I would love to see as an infant and present. If you don't mind.
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Old 05-03-2010, 08:06 AM   #8
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Re: Are you aware of Craniosynostosis?

Craniosynostosis--the premature closing of one or more sutures or fibrous joints knitting the bones of the infant's skull--showed 2.5 times more prevalence in infants exposed in utero to SSRIs. This condition also varies in severity. It can be primarily a bone condition of the skull or it can be secondary to an underdeveloped brain in the infant.

Craniosynostosis occurs in about four per 10,000 births according to the National Institutes of Health. A 2.8 times greater occurrence of this condition will cause 2,305 more U.S. babies to be born each year with this birth defect as a result of their mothers taking SSRIs in the first trimester of pregnancy.
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Old 05-03-2010, 08:06 AM   #9
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http://www.huffingtonpost.com/dr-pet...n_b_57270.html
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Old 05-05-2010, 06:43 PM   #10
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Re: Are you aware of Craniosynostosis?

I wrote a blog about this for the diaperswappers blog.

My son had it.

http://www.diaperswappers.com/diaper...2%80%99s-story
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