4 yr old brother might have craniosynostosis? Please help!?
My brother went for a doctors check-up today, and the doctor said he has to get a CAT scan, because his head is somewhat flat on the sides. He wanted to check for synostosis. I’m really scared. He was born premature. He has had developmental delays. (walking, talking, potty training). But isnt that common for preemies? I also heard that noisy breathing/sleep apnea is a symptom of pressure on the brain. The doctor pointed out today that he may have sleep apnea! How common is Craniosynostosis? Is it likely that he has it? Will he be able to get surgery if he does? I heard that it is usually done when the patient is a baby? How dangerous is it? Can someone have a slomewhat flat skull, and NOT have synostosis?
Thanks for all the help, i’m just really worried. I’m 14, by the way.
Tagged with: brother • cat scan • craniosynostosis • developmental delays • doctors • flat skull • noisy breathing • pressure on the brain • sleep • sleep apnea
Filed under: Sleep Apnea Symptoms
Craniosynostosis is when a suture or sutures (openings) of a baby close too early. While it can cause problems, like harder for the brain to grow or pressure on the brain, it doesn’t always. Many people likely have cranio. and aren’t aware because it never affected them. (One in 1800!) Sometime take a look at bald people and the weird shape of some of their heads — likely you’re looking at cranio. Sometimes you can see a ridge or bump on their head where the suture closed up or sort of overlapped.
It all depends on which suture/s closed early as to what the treatment should be. There are new, less invasive surgeries now being used in some cases. To a good neurosurgeon, it doesn’t seem like this is a big deal surgery most of the time, since it mostly deals with the skull, rather than the brain. (Seriously, this is what a neurosurgeon told me!)
Your brother should be seen by a good neurosurgeon, rather than a neurologist. I say this because I’ve heard of far more neurologists scaring parents and being totally wrong. I don’t know why this happens, but it’s been my experience in giving support to many many preemie parents. If you are near L.A., Dr. J. Gordon McComb at Children’s Hospital L.A. is someone to consider. Most big children’s hospitals have good neurosurgeons on staff.
A neurosurgeon can give you and your parents information on whether your brother needs surgery for cosmetic only reasons or if it is necessary for proper development. Also, have they ruled out positional plagiocephaly? That’s where a preemie’s head is misshapen from laying on it in the nicu. That’s very common.
Here is a 23.5 wk preemie who had cranio (metopic, the suture running up the front of the forehead), but his parents didn’t opt for surgery since the neurosurgeon said it would be only cosmetic in his case. As a baby he had a ridge going up his forehead where the suture overlapped, but now it is gone. Most of his side flattened head is from positional plagiocephaly. He didn’t have treatment for that as treatments weren’t really available then like they are now. (There is now a special helmet to reshape the head.) His head did grow and is now on the larger side and shaped like other family members, and no brain problems at all. (He’s 13 now.) http://www.preemies.us
Preemies DO develop slower than their full term peers, often slower than their adjusted age. There is help in through the Early Intervention or school programs.
Noisy breathing can be a sign of enlarged tonsils/adenoids (or just too big for the kid). This is very common in preemies.
It’s unlikely that your brother has serious cranio because it would have been noticed by one of his doctors a long time ago. Doctors have to cover ever thing to make sure they don’t miss something.
I’m so sorry that you have these adult worries at your age. It’s really very unfair! Try to talk to your parents about your worries. I know they might be spazzed right now, but they can help you. Your little brother is going to be fine!! Please let us know how he is doing. = )
Hi, I don’t know anything about synostosis, but I just want to encourage you. My older brother had sleep apnea and wears an oxygen mask to bed every night. He’s middle aged and doing fine. So find out as much as you can on the Internet, from the doctors about this condition, and know that sleep apnea is totally treatable. Modern medicine is a true gift.
It is possible that your little brother does not have Craniosynostosis. Your dr. is very attentive if he saw this and he wants to rule this out (which is very good, because it can be fixed during young childhood). If he does have craniosynostosis and it doesn’t get treated, he could have injury to his brain and cognition due to increase in cranial pressure (which will also eventually lead to death).
But I think he is fine, because of your dr.’s attention and because he’s still very young and it could be ‘fixed’. Sometimes dr.’s go for extra tests, because that’s where the "bread and butter" is, but why not err on doing too many tests, than the other way around?
I have never heard of the condition your little brother has. What I do know is I have a Great-granddaughter that is 4 yrs old that is developmental delayed. She is my little Sunshine. You are so young to try to take on the burden of ‘what if’. If you have faith..believe and trust. Sometimes Dr.’s run tests to ‘rule out’ really bad things. Let the Dr’s do their job and you just love your little brother. The wrong information can be real scary and you don’t need that. My Great-granddaughter can now walk without a walker,she’s learning to talk and knows some sign language. She goes to a special school called early intervention. I hope your state has such a program. They haven’t gave her condition a ‘label’ yet and it isn’t important for our family to have one, we just love anyway. There are special circumstances so the state is paying for everything. Have your parents check out what your state has to offer. You just be the big sister. Good Luck