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Message
re: 1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)
Posted on 5/15/14 at 2:09 pm to brucevilanch
Posted on 5/15/14 at 2:09 pm to brucevilanch
Man hate to hear this....but as others said get several opinions. We were told our daughters head was flat on the back and she may be required to wear a helmet. Luckily she didn't and she is fine, but there was a recent study out that showed that making kids wear these $4000 helmets does nothing and there is no need for it.
LINK
LINK
1
Posted on 5/15/14 at 2:54 pm to LSUDM2001
quote:My boss's son had this. They took him to San Antonio and the "two small incisions" procedure done. He is fine and you would have never knew he had surgery.
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.
The Dr. in San Antonio also told them that if the boy would've had the normal "ear to ear incision" he probably would've died from blood loss because he had so much pressure.
I think this is where they went
Posted on 5/15/14 at 3:20 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.
My best friends son had the same thing at birth. It was quite scary for him and his wife but the surgery is apparently pretty common and went over with out any issues. Big guy is 5 years old and doesn't have any lingering issues. My prayers are with you and your family during these hard times but I can assure you that God will take care of you all.
Posted on 5/15/14 at 3:48 pm to MrAndroid
In all seriousness, I would suggest checking out LSU-S. We just had an adventure with a cranial surgery. Was willing to go anywhere period. Chose LSU-S over specialists in New York, Memphis, and several others. The neurosurgeons there (several) are world-renowned. Everything about it happened as they said and I and my family was more than satisfied in every aspect. Almost my entire family is in the medical field.
Posted on 5/15/14 at 3:48 pm to banone74
quote:
As a CRNA, all I can add is that doing that anesthetic is probably the most stressful case I've been involved in.
As an anesthesiologist I can second this opinion. Extremely harrowing cases from an anesthesia perspective but as long as you are ready for anything the kids ultimately do well. I'll third/fourth the opinion of Texas Children's - I've rotated through there and it is second to none.
Posted on 5/15/14 at 4:08 pm to pleading the fifth
Thanks for all of the responses and support. We were able to get an appointment for Monday (way better than 2 months from now!), so hopefully we will have something to report after that.
Posted on 5/16/14 at 8:59 am to ILikeLSUToo
No help on the info front, but prayers sent to you, your family, and most importantly your son.
Posted on 5/19/14 at 8:03 pm to ILikeLSUToo
A friend of mine's son had this. Although it wasn't terrible and he wasn't as young. Maybe he was about 1 or so???
He had the surgery in Lafayette if I'm not mistaken and he's doing great!!
He had the surgery in Lafayette if I'm not mistaken and he's doing great!!
Posted on 5/19/14 at 8:37 pm to Kingwood Tiger
My boy had to wear the helmet for 6 months. He grew to like it and would ram his head into things without consequence. After he had it off it was a rude awakening that head butting the wall hurts. He still has a slight flat spot. Was it worth the 4k? Idk but that's my man and I would pay it again.
Posted on 5/19/14 at 8:43 pm to ILikeLSUToo
Wishing your little one all the best. Hang in there pops.
Posted on 5/19/14 at 8:45 pm to ILikeLSUToo
The only help I can offer is prayer. As a parent I can't imagine these situations but I can relate to the love and care that one has for their child. Let us know if there is any way at all that we can help.
Posted on 5/27/14 at 8:15 pm to nc14
Hope your son is doing well ... and mom and dad too!
Posted on 5/27/14 at 8:38 pm to ILikeLSUToo
quote:
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.
I'm a physician and my daughter had the same thing. The vultures suggested the diapering, but in reality it doesn't work as well and people are not consistent with it. We braced her and spent the extra money to be sure it was fixed. That's my personal input. It would have to be very very mild to recommend diapering.
And had you just diapered at your physicians recommendation, would you bypass litigation later when your daughter needed hip replacement? Or would you be glad you saved the money early on. And price what you spent out of pocket v. the extra diapers and uncertainty.
Posted on 5/27/14 at 9:11 pm to ILikeLSUToo
My son has/had craniosystenosis as well. He was treated at 10 months and is now 3. I can give you a referal or answer questions. tgenola@hotmail.com
Check out the craniofacial center in Dallas. LINK
Check out the craniofacial center in Dallas. LINK
This post was edited on 5/27/14 at 9:17 pm
Posted on 5/27/14 at 9:14 pm to ILikeLSUToo
Prayers sent, no idea about the surgery.
Posted on 5/27/14 at 10:50 pm to joeytiger
This surgery is more common than some think. It is no doubt very scary for the parents but just know these surgeries happen regularly. There are great doctors in the state from a ped neuro prespective as well as from a craniofacial perspective.
If surgery is required, it will most likely be the craniofacial surgeon who does the actual remodeling of the head. I could give a few recommendations but its more about who you are comfortable with.
thoughts and prayers are with your son and the family.
If surgery is required, it will most likely be the craniofacial surgeon who does the actual remodeling of the head. I could give a few recommendations but its more about who you are comfortable with.
thoughts and prayers are with your son and the family.
Posted on 5/27/14 at 10:54 pm to ILikeLSUToo
If you're going to the NeuroMedical Center, I know most of those doctors. They're great people. He'll be fine.
Posted on 5/27/14 at 11:03 pm to tiger91
Sorry I missed the replies today. Someone else in another thread pointed me back here.
I've been reluctant to update until the end of the week, because we've been cautiously optimistic...
On the 19th, we saw the neurosurgeon. Didn't get any definitive answers, but the doctor said he does not think he will need surgery or the helmet. Obviously, this cannot be confirmed until his CT scan, which is happening Thursday morning at Woman's Hospital.
There is another followup appointment scheduled with the neurosurgeon in 2 weeks. I truly hope that we don't have to wait for that appointment to find out what the CT scan says, but it wouldn't surprise me.
Best-case scenario seems to be physical therapy. If the joints in his skull aren't fused together, we are dealing with positional plagiocephaly and torticollis.
This is a pretty good representation of his head shape:
Particularly, his left ear sits noticeably farther back than his right.
It's looked like that since birth -- C-section, and the doctor had to use suction, which I'm told is a large contributor to this issue straight out of the womb.
Also, since birth, he's only slept with his head turned to the right. None of the doctors or nurses seemed to be concerned about it in the hospital, and neither were we (because my daughter was the same way and nothing ever came of it).
We've been doing some neck exercises with him since the last doctor visit, and some repositioning attempts when he's asleep, but he always is able to overpower any attempt and end up with his head turned to the right again. But we're trying, as much as we're comfortable doing safely until we get some definitive answers and perhaps visit a pediatric physical therapist.
So that's where we are... a tiny amount of optimism that barely puts a dent in our anxiety, awaiting an answer that we hope won't take 2 more weeks just to justify a second copay.
I've been reluctant to update until the end of the week, because we've been cautiously optimistic...
On the 19th, we saw the neurosurgeon. Didn't get any definitive answers, but the doctor said he does not think he will need surgery or the helmet. Obviously, this cannot be confirmed until his CT scan, which is happening Thursday morning at Woman's Hospital.
There is another followup appointment scheduled with the neurosurgeon in 2 weeks. I truly hope that we don't have to wait for that appointment to find out what the CT scan says, but it wouldn't surprise me.
Best-case scenario seems to be physical therapy. If the joints in his skull aren't fused together, we are dealing with positional plagiocephaly and torticollis.
This is a pretty good representation of his head shape:
Particularly, his left ear sits noticeably farther back than his right.
It's looked like that since birth -- C-section, and the doctor had to use suction, which I'm told is a large contributor to this issue straight out of the womb.
Also, since birth, he's only slept with his head turned to the right. None of the doctors or nurses seemed to be concerned about it in the hospital, and neither were we (because my daughter was the same way and nothing ever came of it).
We've been doing some neck exercises with him since the last doctor visit, and some repositioning attempts when he's asleep, but he always is able to overpower any attempt and end up with his head turned to the right again. But we're trying, as much as we're comfortable doing safely until we get some definitive answers and perhaps visit a pediatric physical therapist.
So that's where we are... a tiny amount of optimism that barely puts a dent in our anxiety, awaiting an answer that we hope won't take 2 more weeks just to justify a second copay.
This post was edited on 5/27/14 at 11:06 pm
Posted on 5/27/14 at 11:25 pm to ILikeLSUToo
No, not personally. Talked with friend who is a nurse-practitioner, primarily pediatric, and she said the condition, not that uncommon, could be corrected with surgery and suggested this link as a good starting point for your research.
Prayers for you and family!
Prayers for you and family!
Posted on 5/28/14 at 12:00 am to ILikeLSUToo
How do you do physical therapy on an infants head??
Serious question and not a flame.. I wish the best for you and your family
Serious question and not a flame.. I wish the best for you and your family
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