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Craniostenosis

Please keep my friend's 3 week old daughter in your prayers.  She was diagnosed with craniostenosis today and will be having surgery sometime soon.  

Does anyone have any experience with this?
10 Responses
Avatar universal
Hi Nicki, my son was diagnosed with this about 2 days ago, he will be having the surgery in Jan 08. Did your friend's baby have the surgery yet? Where are you guys from?
Avatar universal
my son had his op in 2007 and is doing well how your friend daughters baby, also hows your son punkmaxine? marie
Avatar universal
Hi,
My sister underwent her cranial surgery for Craniostenosis, in 1980 in Chennai, TamilNadu, India. In 1997, doctors brought her maxilla to the front and she breaths & looks better now.

Her son (7 days old) is being diagnosed for his resemblance of my sister (yes for Craniostenosis).

Regards,
Buvana

Avatar universal
my sister was told that her child has craniostenosis, they told her that surgery would have to be done, she has refused surgery.  Could somebody please tell me what the long term effects or any effects could be by not having the surgery.  I am very concerned for my nephew and would like more info on this  
Avatar universal
hi mandasmom my son had craniostenosis and had op last year. there different vararation of it has your sister said what he would have to have done? and why she refusing? hope his doing well marie
Avatar universal
My daughter is diagnosed with craniostenosis and going to have the surgery soon at Delhi AIIMS. Can anybody tell me if that is the best place for the surgery in India or should I try the same elsewhere.

Sandipan
1076513 tn?1255764759
He was my third child and even after changing his diaper, feeding him and burping him, he still cried.  To me it was obvious that he was in pain, his head was long and narrow.  You can compare it to a football.  
My mom and sister were still telling me, ''don't worry about it, he's gorgeous.’’. The paediatrician kept telling me that it was normal that his head had that shape because I had him naturally without any anaesthesia.   But after debating the situation with his paediatrician when he turn  4 months and needed his shots, I insisted to have him seen with a Specialist because of the shape of his head and mostly because of the pain he had.  The next day he (my son) was seen by a Neuro surgeon at the Montreal Children’s Hospital and given test after test with CT scans.  The  Neuro Surgeon told me that my baby needed an urgent operation because he had Craniostostenoses, with pressure to his brain.  My son was then admitted to the Montreal Children’s Hospital and stayed for a week because of the pressure to his brain he lost 200cc of blood.  But after all that, the Fabulous Doctor Montex told me that I gave my son a second life. (I of course thank God for Dr. Montex that listened to me). But he told me that without my motherly instincts, nothing would have been done to him.  That only because of my intuition and because I KNEW MY BABY WAS IN PAIN AND INSISTED TO SEE A SPECIALIST, that he is fine today and living a normal life.  

My son Max does have profound dyslexia, ADD and ADHD but I was told that it had nothing to do with The Craniostostenoses.  My son, is 10 at this date and although he has a scare that goes from one ear to another and will never be able to have a brush cut (spiky) because of the scare that is a reminder of what he went threw,  is in perfect health.  He is smart, never failed a year in school, is good in sports and is sweet as little boys can be.  He is a good boy with full of life and the future awaits him.  Although he has little problems, I take them and accept them with a smile because things could have been much worse.  So if you are a parent that senses that something is wrong with your child, even if your Pedatrition does not want to listen, get a second, third or fourth advice until you get a doctor that will listen to you.  You are your Childs advocate and you are his or her voice.  So scream for him or her if you need to, because only you know your child and only you can save him or her.
Avatar universal
my son is 3 weeks old  and was tested for craniostineos  by ct scans. They said it looked like his plates were just tightly over laped. Now at 3 weeks the doctors sending us to a neuro surgeon to get a second opinon because it doesn't  look like they've moved at all. Has anyone else had this happen to them?
Avatar universal
We went through this with our eldest child, oblong skull and no soft spot. Surgery was done on the day he turned 3 months. We go in for eye appointments annually to ensure there is no pressure on the optic nerve. He is 6 1/2 and is otherwise perfectly fine. He too has the scar but he knows what it is from and it doesn't bother him. Within 15 months of the surgery there were friends who were watching him when our daughter was being born who hadn't known him when he had the surgery and even with his head wet during bathing they didn't notice the scar! Thank God for Dr. Telfian Lubbock, Tx Neurosurgical Associates. I reccommend a plastic surgeon for the suturing minimize noticable scarring. There is another boy in my son's elementary school who had had the same surgery. A friend of mine's son had the surgery as well. It's rare but not that rare!
Avatar universal
Hi,
Does anyone know if it an xray is a good way to diagnose craniostenoso? They told us her head was measuring large and it is very enlongated and narrow. They sent us for an xray which they said was normal and now thats it. Should I trust the xray?
Thank you for you help.
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