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Started By
Message
1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)
Posted on 5/15/14 at 11:35 am
Posted on 5/15/14 at 11:35 am
My son had his one-month checkup this morning. His head has been misshapen since birth, but the doctors all assumed it would go back to normal quickly -- he was a C-section birth and required the use of suction to get him out.
Now, suddenly at his one-month appointment, the pediatrician is concerned that he may have Craniosynostosis, which is a birth defect in which one or more of the joints between the bones of a baby's skull close prematurely before his brain is fully formed, and his brain may not be able to grow properly. The solution is apparently surgery, where they literally cut into an infant's skull.
Obviously, wife and I are pretty fricked up by the news. Just wondering if anyone here has had a kid go through something similar, or knows someone who did, and what to expect.
Update on Page 8 (6/24): He has Lambdoid Synostosis, and his surgery is on July 24.
Update on Page 12 (7/24): Surgery over, he pulled through just fine, other than needing a little bit of blood.
Update on Page 14 (7/25): Back home from the hospital, seems like everything is fine, but he's definitely still in pain
Update on Page 14 (8/18): Helmet pic
Now, suddenly at his one-month appointment, the pediatrician is concerned that he may have Craniosynostosis, which is a birth defect in which one or more of the joints between the bones of a baby's skull close prematurely before his brain is fully formed, and his brain may not be able to grow properly. The solution is apparently surgery, where they literally cut into an infant's skull.
Obviously, wife and I are pretty fricked up by the news. Just wondering if anyone here has had a kid go through something similar, or knows someone who did, and what to expect.
Update on Page 8 (6/24): He has Lambdoid Synostosis, and his surgery is on July 24.
Update on Page 12 (7/24): Surgery over, he pulled through just fine, other than needing a little bit of blood.
Update on Page 14 (7/25): Back home from the hospital, seems like everything is fine, but he's definitely still in pain
Update on Page 14 (8/18): Helmet pic
This post was edited on 8/18/14 at 7:38 pm
43
Posted on 5/15/14 at 11:36 am to ILikeLSUToo
damn, that sucks
Posted on 5/15/14 at 11:37 am to ILikeLSUToo
Not familiar with this, but thoughts are with you guys.
Posted on 5/15/14 at 11:37 am to ILikeLSUToo
I don't want to appear insensitive. I didn't mean to indicate that. Just speaking from my experiences and I am sure your child will turn out great. Just seek several doctors' opinions. 
This post was edited on 5/15/14 at 11:55 am
Posted on 5/15/14 at 11:37 am to ILikeLSUToo
oh wow man. 
Posted on 5/15/14 at 11:40 am to JumpingTheShark
You tell him he will get fricked up answers and bad advice, then tell him to second guess his doctor's motives
frick off you idiot
frick off you idiot
Posted on 5/15/14 at 11:42 am to LSUSoulja08
Speaking from experience dick.
And i forgot that the OT is a treasure trove of nuggets of genius.
This post was edited on 5/15/14 at 11:43 am
Posted on 5/15/14 at 11:42 am to ILikeLSUToo
Must admit I have not heard of it. But prayers to you guys. Definately get multiple opinions though and do not hesitate to venture to Houston to seek a 2nd opinion at Texas Childrens. One of the best ped's specific facilities in the country.
Posted on 5/15/14 at 11:42 am to ILikeLSUToo
Yes.
You should pray that it is nothing and the xrays/mri show that there is no fusion (this happens a lot) or you should pray that it is craniosynostosis and you are fortunate to have a surgery option that works pretty well.
Very sorry to hear you are going through this. I know it is scary but say your prayers and hang in there. Craniosynostosis can be fixed at early age and the kid grows up without further issues.
You should pray that it is nothing and the xrays/mri show that there is no fusion (this happens a lot) or you should pray that it is craniosynostosis and you are fortunate to have a surgery option that works pretty well.
Very sorry to hear you are going through this. I know it is scary but say your prayers and hang in there. Craniosynostosis can be fixed at early age and the kid grows up without further issues.
Posted on 5/15/14 at 11:43 am to JumpingTheShark
And I'm a neuroscientist
But I'm not going to tell him to doubt his doctor when the reality of this ailment in incredibly serious
But I'm not going to tell him to doubt his doctor when the reality of this ailment in incredibly serious
Posted on 5/15/14 at 11:45 am to JumpingTheShark
quote:
You should ask around to family and friends because people here will give you fricked up answers and horrible advice.
I think when it comes to kids and real problems like this one, the OT is less ridiculous in their responses.
quote:
That being said, my 2 cents is to be very wary that they are not trying to take advantage of you and prey on your emotions for your child. Best of luck man
Definitely. This is my second kid, so I've been down the path already of vulture doctors looking for an insurance check. My daughter was born with congenital hip dysplasia, very mild. She had to wear a harness for 6 weeks, and I later found out that in cases that mild, double-diapering for 6 weeks is just as effective. The key is to keep the legs slightly raised and separated. But instead, our insurance (and us, partially) got to pay out for 3 ultrasounds and consultations with a radiologist, 4 visits to a pediatric orthopedic specialist, and several followups with the pediatrician.
But this is different, and I'm not going to brush off a neurosurgeon's recommendations for something that seems this serious. I don't believe they'd do surgery on a newborn out of greed.
This post was edited on 5/15/14 at 11:50 am
Posted on 5/15/14 at 11:46 am to ILikeLSUToo
I have friends who both of their children had to have corrective surgery for this. It was hard times for them, especially when they learned that their second child had the problem and they had to go through it all over again.
Both kids are doing great now though and are fully recovered.
Wish you the best.
Both kids are doing great now though and are fully recovered.
Wish you the best.
Posted on 5/15/14 at 11:47 am to ILikeLSUToo
quote:
Definitely. This is my second kid, so I've been down the path already of vulture doctors looking for an insurance check. My daughter was born with congenital hip dysplasia, very mild. She had to wear a harness for 6 weeks, and I later found out that in cases that mild, double-diapering for 6 weeks is just as effective. The key is to keep the legs slightly raised and separated. But instead, our insurance (and us, partially) got to pay out for 3 ultrasounds and consultations with a radiologist, 4 visits to a pediatric orthopedic specialist, and several followups with the pediatrician.
We had similar experiences seeing pediatricians about my sister's autism symptoms. This was around the time when vaccines were thought to be a major cause of diseases like this, and eveyrone had different answers, which made it hard to make heads or tails of it. I am going to speak with a friend of mine later who deals with stuff like this and see what he has to say.
Posted on 5/15/14 at 11:48 am to Salmon
What's the recovery like, as far as time, child's discomfort level, etc.
Posted on 5/15/14 at 11:48 am to ILikeLSUToo
best wishes to you and the little sir
Posted on 5/15/14 at 11:48 am to JumpingTheShark
quote:
That being said, my 2 cents is to be very wary that they are not trying to take advantage of you and prey on your emotions for your child
Dafuq? Do you have any idea how much liability a surgeon would have recommending a non-necessary surgery on an infant?
OP, prayers to your family, that has to be tough
This post was edited on 5/15/14 at 11:52 am
Posted on 5/15/14 at 11:50 am to ILikeLSUToo
Doctor's can be wrong with an initial diagnosis. I hope your son will be okay. Please let us know.
Posted on 5/15/14 at 11:50 am to ILikeLSUToo
quote:
What's the recovery like, as far as time, child's discomfort level, etc.
lots of swelling, he might not be able to see for a day or not due to his eyes being swollen shut
but I believe that both of the kids were home within a week.
also both of the kids had the surgery when they were older, like around 18 months
This post was edited on 5/15/14 at 11:51 am
Posted on 5/15/14 at 11:52 am to ILikeLSUToo
Contact neurosurgery at Texas children in houston
I have a friend, who is an RN, whose son had this. He had the surgeries for it and is just fine.
She had nothing but good things to say about the doctor and the hospital
I have a friend, who is an RN, whose son had this. He had the surgeries for it and is just fine.
She had nothing but good things to say about the doctor and the hospital
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