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Cranio in one, Autism in another

Ann - posted on 05/18/2010 ( 11 moms have responded )

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I've been trying to read about others and craniosynostosis since my daughter, 23 months had recently been diagnosed for the the 2nd time. (She had her first surgery in Feb 09) We are waiting on a date for the 2nd as well as an appointment for Genetic testing. As I read I notice quite a number of twins (she too is a twin, her identical twin has no craniosynastosis) And I notice a number of people mentioning either the child with the craniosynastosis has ADD, ADHD or Autism or a sibling. Jessie's bother is Autistic. And finally she is a preemie. Just curious if anyone knows exactly what caused their childs Craniosynostosis. Anyone know if their are links between some of theses issues. I'm still learning but would love a direction to go in if someone out there knows of one.

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Jessica - posted on 07/26/2010

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Thanks for sharing. What was your theory as to what causes craniosynostosis?

Ann - posted on 07/26/2010

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My daughter had the traditional surgery. She was cut from ear to ear in a wave as to allow for hairstyles. Her first surgery was at 7 months old (4 months corrected) The scar wasn't really visible before the 2nd surgery. You could tell her head was growing upward, especially if you say her sister. Not too bad but noticable. When she was to go in for her final appointment with the neurosurgeon they noticed that it was not shaped quite right. Upon reviewing the CT scan they saw it refused along with more sutures. Do to my surgeon leaving Dartmouth for a hospital in Boston, we had her 2nd surgery a few weeks after diagnosis. Just before she turned 2. The surgery itself was more intensive but she is recovering just the same. Her hair is growing in and looks a bit funny. I think that the hair stands out being odd over seeing the scar. She is a month and a half out now.

Jessica - posted on 07/25/2010

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Well it's very early now. We just had xrays done 1 1/2 weeks ago and that showed fusion in some sutures. We get the CT scans done for both girls early August and that will determine exactly what sutures are fused if any (I'm praying and staying positive). But right now I do not know which sutures are fused for sure. I still have not even sat down one on one with my surgeon since the xrays. Did your daughter have endoscopic surgery or the traditional surgery and how old was she when she underwent the surgery?

Ann - posted on 07/25/2010

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I believe that the surgery avoids those issues far more often than causes them. Of course surgery is always a risk!!! Our daughter had to have a heart valve procedure done before the anastisiologist would work with her. This procedure is known for blood loss and blood transfusions. So that is why there was concern. I know that vision is often the first issue to surface without surgery. I think my daughter is suppost to be followed by the eye doctor after the surgery. She already goes since she was on oxygen for so long at birth. The side effects as for doing surgery or not may depend on what suture(s) and when they actually fused. As Ironic as it is, Jessie is my daughter who is ahead of my other children. She is actually in normal range for her age. Impressive considering how premature she was and all that she has been through in her short life. I had faith in the surgeon and had to balance the risk with what I felt was the best quality of life for her.
Are both your daughters effected the same? Do they suspect a specific genetic disorder? I have my theory on my daughter but I can not say that it is a medical theory.

Jessica - posted on 07/25/2010

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Are there any associated after affects such as developmental delays, intellectual affects, neurological, behavioral that you know of?

Ann - posted on 07/25/2010

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Jessica - I can imagine the stress of both girls and the possibility of the Craniosynostosis. The one thing I will say is that once you come to a decision on what to do the stress goes down and if it is surgery, after the surgery it is again reduced. My daughter is doing great . The scar still has some of the stitches in it and they are a bit rough here and there. Then we can feel the screws and that is eerie. But she is back to he old self.

Jessica - posted on 07/24/2010

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I have twin girls and just found out that they may have craniosynostosis. I go in August to confirm it with a CT scan. I will keep you all in my prayers, please keep my twin girls in your prayers as well.

Ann - posted on 06/28/2010

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Just an update to say my daughter is doing great. No clinically obvious genetic disorder. Surgery went well. For My husband and I we had the support of a 2nd family going through the same thing. Literally! Their child was having their 2nd cranio repair at the same time, same plastic surgeon. We've been to the post op appointment and no helmet is needed again :) Now we do not go back for 9 months. Jen - good luck to you. The time before surgery is so much worse than after... My son hasn't bothered Jessie and her twin pointed to the scar and said "pretty". I think she thought it was a head band

Jen - posted on 06/05/2010

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Is two surgeries recquired for most cases?? The drs all told me that she would need surgery but they haven't mentioned a 2nd surgery or any others. I worry about it too since she will be around the same age as your daughter was for her first surgery. Also I've got a 2 year old daughter who is on the go 24/7 or so it seems. And I am worried that she will try to play too rough with the baby or try to pick at the bandage or stitches since she's not used to seeing stuff like that. I hope all goes well and it's successful with your daughter. My prayers are with you.

Ann - posted on 06/05/2010

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Jen - my daughters 2nd surgery is this Wed. She was only 6 months corrected with the first. Let me tell you it is not easier when they get older. Now I worry about how active she is and how scared I know she'll be... looking back, I think that it wasn't too bad last time. I do remember how nervous I was before hand and it was definately the worst part. Hopefully Next week I can tell you that the same is try for the 2nd time around.

Jen - posted on 06/05/2010

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My daughter is 5monthes old right now and was diagnosed with craniosynostosis when she was only 1 month old. She has seen a number of specialists including the neurosurgeon, plastic surgeon, cardiologist, genetecist, opthalmologist, and neurodevelopmental psychologist and that's just for her cranio. But they have all told me that it is not an uncommon thing anymore. Although I don't remember if they told me what causes it but they just say that it's from the skull fusing too quickly and leaving them with no soft spot. My daughter will be having surgery either at the beginning of next month or the month after. As for links about any of this I don't know of any but I just thought I'd let you know that you're not alone. Even though I don't have twins I do have a daughter that has the same. Hope I helped you out a little bit. I'm just glad that they have such great support groups like this now. Especially for someone like me that is going to be a complete basket case when my daughter does have to go in for surgery.

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