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Started By
Message
re: 1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)
Posted on 5/15/14 at 11:55 am to ILikeLSUToo
Posted on 5/15/14 at 11:55 am to ILikeLSUToo
Always get second opinion
In this case, third would hurt
Best of luck for your family.
In this case, third would hurt
Best of luck for your family.
1
Posted on 5/15/14 at 11:56 am to mkibod1
I'll second the recommendation for Texas Children's Hosp. My youngest son had surgery at 4 yrs old by a pediatric urologist and the place was top notch. Good luck to you and your family.
Posted on 5/15/14 at 12:03 pm to djangochained
We were referred to Dr. Allen Joseph in BR. The nurses at the pediatrician's office tried to call today, and of course the answering service folks are trying to say "earliest appointment is 2 months from now." Pediatrician said frick that (in different words). So now they are trying to get in touch with a nurse over there and get an earlier appointment.
So it's just a state of limbo right now. I do not handle uncertainty very well when it comes to shite like this. It drives me nuts to think I may not have an answer about all this within even the next 3 hours, let alone 2 months.
So it's just a state of limbo right now. I do not handle uncertainty very well when it comes to shite like this. It drives me nuts to think I may not have an answer about all this within even the next 3 hours, let alone 2 months.
This post was edited on 5/15/14 at 12:04 pm
Posted on 5/15/14 at 12:04 pm to ILikeLSUToo
Good luck man.
Glad Salmon saw this and posted so quickly. That probably helped the op and his wife tremendously.
Glad Salmon saw this and posted so quickly. That probably helped the op and his wife tremendously.
Posted on 5/15/14 at 12:05 pm to ILikeLSUToo
Hang on! So very sorry. Remember technology is amazing now. Will pray.
Posted on 5/15/14 at 12:06 pm to Isabelle
prayers man
Posted on 5/15/14 at 12:09 pm to ILikeLSUToo
ILike: call Neuromedical Center Administrative office or get pediatrician to do this. They will understand the urgency and move on it. You never know what idiot is making the appointments. This from my experience at NMC.
Posted on 5/15/14 at 12:12 pm to ILikeLSUToo
One of my colleagues just gave birth and her son was diagnosed with the same thing. Additionally, a family friend had the same thing happen to her niece.
Both were given two surgery options. The first was very invasive and required blood transfusions. It involved a zig zag incision across the forehead. The second is a newer procedure where a straight line incision is made past the hairline, so the scar is hidden in the hair. It also has a much shorter procedure time, shorter healing time, and doesn't require transfusions.
My coworker's son is having the procedure today. The family friend's neice had it a while ago (less than 1 year), and you would never know. I saw pictures of the little girl and I couldn't see any issue.
Rest assured, friend. You are not the only one. This is becoming more common as is new babies having to wear a helmet for a while.
Hang in there, buddy. Prayers for you and the family. If you want my email, message me.
Both were given two surgery options. The first was very invasive and required blood transfusions. It involved a zig zag incision across the forehead. The second is a newer procedure where a straight line incision is made past the hairline, so the scar is hidden in the hair. It also has a much shorter procedure time, shorter healing time, and doesn't require transfusions.
My coworker's son is having the procedure today. The family friend's neice had it a while ago (less than 1 year), and you would never know. I saw pictures of the little girl and I couldn't see any issue.
Rest assured, friend. You are not the only one. This is becoming more common as is new babies having to wear a helmet for a while.
Hang in there, buddy. Prayers for you and the family. If you want my email, message me.
Posted on 5/15/14 at 12:15 pm to LSUDM2001
Let me also include that the lady I work with was given that first option (the more invasive procedure) at the hospital where the baby was born in Austin, TX. She sough second opinions and ended up finding the better option in San Antonio.
Posted on 5/15/14 at 12:21 pm to LSUDM2001
I've been reading about the surgery types and how there is a less invasive one like you described. If the surgeon in BR doesn't use that method (if it comes down to needing surgery), I'll sure as hell be finding a surgeon who does.
Please keep me posted on your coworker's son, after the surgery and through recovery.
Please keep me posted on your coworker's son, after the surgery and through recovery.
Posted on 5/15/14 at 12:27 pm to ILikeLSUToo
Sorry to hear - no clue as to what to do/who to talk with, so I can only offer prayers for you, your wife and your little man.
Posted on 5/15/14 at 12:30 pm to 318TigerFan
Sorry man. Just can't imagine
Posted on 5/15/14 at 12:30 pm to Unobtanium
quote:
Unobtanium
Your avatar sent me a heavyhearted reminder that I should be thankful it's nothing more serious.
Posted on 5/15/14 at 12:34 pm to ILikeLSUToo
quote:
ILikeLSUToo
It's going to be ok:
Craniosynostosis:
1. It is not life threatening
2. It is correctable
3. It is only a skull defect with no brain involvement.
4. It does not have any lingering life-long effects
5. Your child at a month old won't remember this procedure
6. The majority of suspected craniosynostosis turn out to be nothing after x-rays or CT scans. The kid may just have a funny lookin' head... Which will correct itself as he gets older.
Good luck!!
Posted on 5/15/14 at 12:53 pm to ILikeLSUToo
quote:
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.
Me and my wife went through this with our daughter. She was diagnosed with Sagittal Cranio around the same time as yours.
The surgery sounds pretty rough, but little ones bounce back so fast. There is a wonderful website full of support for this procedure. craniocarebears.org. Let me know if you have any other questions or concerns.
Posted on 5/15/14 at 1:00 pm to ILikeLSUToo
As a CRNA, all I can add is that doing that anesthetic is probably the most stressful case I've been involved in. We have a highly respected surgeon up here that does them, it's just a sphincter tightening case, but as the OT said, they typically do very well. God bless you guys, stay strong my man
Posted on 5/15/14 at 1:23 pm to ILikeLSUToo
My baby nephew just recently went through this at Childrens. Your baby boy will be just fine.
Posted on 5/15/14 at 1:41 pm to ILikeLSUToo
I work with a guy that had this. One of the smartest guys I know. You wouldn't know anything was ever wrong other than noticing the scars when he cuts his hair short. He has a very normal shaped head. Another guy I work with has a 10 year old son with this as well. He has to have surgery every couple of years to allow the skull to grow properly. Oddly enough, I work as a nurse in the Neuro ICU with these guys.
This post was edited on 5/15/14 at 1:44 pm
Posted on 5/15/14 at 1:42 pm to Fight4LSU
Get the Baton Rouge doctor's opinion but I would head to Children's in Houston before I let any pediatric neurosurgeon operate on my newborn.
Posted on 5/15/14 at 1:51 pm to ILikeLSUToo
My uncle and both of his kids went through this. The older kid is 21 and the younger is 11. I can say that the difference in technology in that 10 years was remarkable. I'm sure it's even more so now.
Wish you the best, I'm sure he'll be just fine.
Wish you the best, I'm sure he'll be just fine.
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