Craniostenosis

[Nicki1433]

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?

[punkmaxine]

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?

[marie18]

my son had his op in 2007 and is doing well how your friend daughters baby, also hows your son punkmaxine? marie

[buvanit]

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

[mandasmom]

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  

[marie18]

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

[sandi177]

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

[shelbydoo137]

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.