Re: just starting process....second opinion...lots of questions!

April 13, 2010

Welcome-

I feel your frustration and know exactly how you feel! First off, you will need

a prescription from a doctor before you can even get a band. So go get another

opinion from either another pediatrician (maybe someone can recommend a

band-friendly one in your area of Florida if you post it) or a pediatric

craniofacial surgeon. Craniofacial surgeons are generally more band friendly

because they work with the cosmetic side of things. I was in a similar situation

as you, saw a neurosurgeon when my son was 4 months old and he said to save my

money and spend it on a vacation (rather than get a band) and that it would

round out. The pediatrician told me that helmets were " a crock " and that it

would round out. Well I waited too long and didn't band him until he was 17

months old and it's the biggest regret I have. I saw another ped and a cranio

surgeon and both were willing to write a script. My son wore 2 DOCBands and our

insurance did cover it (even after all the " nos " from other doctors - I don't

think that was ever an issue) at 75% (because CT was out of network). Of course,

it totally depends on your insurance company, some don't cover bands at all, no

matter what a doctor says. So you might want to look into that first, if you

haven't already.

The good news is your son is still young and you still have time to work with.

Make the appointment for the cranio specialist asap because you never know how

long you might have to wait.

Good luck!

Jake-3.5 (DOCBand Grad 9/08)

Raleigh, NC

>

> Hi, I'm new to this board and still figuring a lot of things out so sorry if

I'm not posting correctly! My son is 5 months old. He had right-side plagio

when he was born as I noticed his right eye looked bigger than the other. I

mentioned it to his ped who said this was normal. At his two month appt, I

mentioned the flattening on the back right side of his head, the slightly

bulging right forehead, and again the ped said it would straighten out on his

own. At his 4 month appt, I again mentioned it but also mentioned his ears were

out of alignment (right ear is more forward than the other). He AGAIN said it

would straighten out on his own. I got frustrated after returning home and

called back and made another appt and DEMANDED a referral to a pediatric

neurosurgeon. So we got him an appt and drove to ville (almost 3 hours

away). The neurosurgeon only recommended repositioning and said he does not

prescribe a helmet unless the child is immobile. What the neurosurgeon fails to

realize is that we have already been doing everything we can to keep him off the

right side of his head, but it's like fighting a losing battle. Especially

since he flips over himself onto his back at night and he's in daycare while my

husband and I work (I've advised them to keep him off his back but of course, I

don't know for sure they do this). No matter what we do, he WANTS to lay on the

right side of his head. I'm getting so frustrated cuz I feel like that every

day that goes by is another day we could have been treating his head with a

helmet. I don't know what to do at this point. Do I try again and request a

second opinion with another neurosurgeon - only to end up with another who is

anti-helmet? Or do I bite the bullet and drive to Miami for a DocBand? Will I

end up paying 100% out of pocket because I've already had a neurosurgeon say

that he recommended repositioning? I wonder if that trip to the neurosurgeon

will hurt me now as far as trying to get insurance to cover a DocBand? I just

don't understand why ped and the neurosurgeon look at my son's head and say,

" this will correct on his own. " He's had it since he was born and now he's 5

months and still nothing is getting better, only worse! It's really noticeable

when I look down at the top his head as his ears are so out of whack. I'm so

frustrated I could just cry. I guess if I have to charge $3800 on a credit card

it will be worth it. Anyone have any experience in getting a DocBand covered by

insurance after a neurosurgeon recommended repositioning?

>

April 13, 2010

Hello and welcome to the group. You are in good company here as many of us have gone through the same situation as

yourself. I shed some tears trying to get my 9-month old daughter the help I knew she needed. was banded by a neurosurgeon who is young and Harvard educated--so very familiar with the latest research and more open to banding. If you decide to see anymore neurosurgeons, I would definitely ask if they prescribe helmet therapy for positional plagiocephaly BEFORE I booked an appointment with them. You still have plenty of time since your son is only 5 months, but you don't want to waste money and time with a specialist who is against banding altogether. You might have better luck with with a Craniofacial specialist as the other posters have suggested. I think the consensus is that they are in fact, more concerned with the deformation part of plagio as opposed to neurosurgeons who seemed to be more concerned with brain function.If you try the pediatrician route, I would do the same thing as with a neurosurgeon--ask if

they prescribe helmet therapy before booking an appointment with them. Our ped refused to prescribe helmet therapy and lucky for us, sent us to a neurosurgeon who recognized the need for it.By the way, you have plenty of time, despite the urgency that Cranial Tech puts forth. My daughter was banded at 8 months and she has already received fantastic correction in only 5 weeks. Obviously, the sooner the better in some cases, but you can band too soon. I spoke with a parent before my daughter's band adjustment appointment yesterday who had taken her 5-month-old son in for a consult and the orthotist told her to wait a little longer and bring him back later for an evaluation. I spoke with my daughter's neurosurgeon about this "urgency" because after an eval with CT, I was concerned about my daughter being banded so late and he assured me that 6-7 months is the right time for banding because they know by then, the condition won't correct on its

own. You have plenty of time to get the help your son needs. Relax and try not to be so upset. Best of luck to you and your son!Amy

April 13, 2010

Hi,

My son was diagnosed with plagio when he was 2 months old. Our ped sent us to PT

saying that they would check my son for torticollis and advice on repositioning.

Our PT recommended a band. Then I asked my ped for a referral to see a

neurosurgeon who didn't recommend banding. So my ped ended up writing a

prescription for the band and our insurance still payed for it ( even though the

neurosurgeon didn't recommend it).

If your ped doesnt want to write a script for your son, you might try to find a

different ped who will.