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

[Guest guest]

First of all, for any kind of band, you will need a doctor's prescription. Neurosurgeons are very often against banding. Can you look up a cranial facial specialist? They are more band friendly.

Also, you might want to check out some PT for possible tort if the baby isn't turning to the left (which is what it sounds like you are saying). The head won't get better unless this is fixed.

Either way, insurance may or may not pay for the band. We had a doctor's recommendation (and so have others), but had to pay out of pocket.

If your ped won't give you a referral to the specialist, then you might need to bite the bullet and pay out of pocket there.

Given that this has been going on since birth, I'm thinking that you probably need to pursue a band. You at least need an unbiased opinion about it.

You could also go for the consult at CT (they are free), but you couldn't go forward without the prescription.

, mom to , 2.5 years

STARband grad May 2009 just starting process....second opinion...lots of questions!

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?

[Guest guest]

I would definitely go ahead and go to Cranial Tech for a free evaluation. One nice thing is that CT will work with your peds to get the prescription so you don't have to worry with that (or at least the one in ndale, VA where I go does). It will all depend on what insurance you have on whether or not they will pay for it or at least part of it. It does seem a lot of doctors are against the band and a lot of insurances won't pay for it stating it's for cosmetic reasons. Thankfully my ped recognized a problem at my son's 1 month check up and we had x-rays to confirm plagio with tort and are moving forward with PT and a band next month. He is 4 months now.

Also, look into Hanger bands. www.hanger.com and look for a location near you. Or the StarBand through OrthoAmerica www.orthoamerica.com. There may be a closer location to you. Although with Hanger I know you have to bring a prescription to the first consultation (which is free too). At least with CT you don't need a prescription for the consult and they will directly work with your peds office to get the prescription and maybe once they send them the report and pictures of your child's head they will get a clue and see that something needs to be done.

Your child's at the perfect age to get the band as the best time is between 4-7 months so don't put it off. Go with your gut as you have all along!! Moms seem to know best for their children!!!!! :-)

BTW, call your insurance and ask them if they will pay for a band. They will ask for a procedure code. Give them this: S1040 (I believe that is the procedure code for any band whether it be from CT, Hanger, etc.) and they will tell you what they will pay for if anything. At CT after the consult their insurance person will contact you within a day or two to let you know also what your insurance says but if you want to find out ahead of time, I would call yourself.

Good luck!

From: squeaky6981 <squeaky6981@...>Subject: just starting process....second opinion...lots of questions!Plagiocephaly Date: Tuesday, April 13, 2010, 2:23 AM

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?

[Guest guest]

Go to CT and get the free consult... Then take the info to your ped. Maybe you could get the rx that way.

Also, has your son been evaluated for torticollis? That is really common in leading to plagio. If the tort is not treated then your baby will never get off his right side.

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

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

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 t

he 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 f

ar 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?

[Guest guest]

Hi!! I also would recommend going to CT...don't wait any longer!! Do not waste your time finding another neurosurgeon. I am not sure about whether insurance will be affected since you did already go to a neurosurgeon, but if you can, get the RX from the ped. Like Jen below said, go get the consult from CT then take that info to your ped. I know it is frustrating because nobody can give you a straight answer, but the facial changes he has will not correct themselves at this point. Listen to your instinct and go! As for the insurance, CT will instruct you on what kind of documentation is needed. Good luck!!!! My daughter, Norah, was 11 months when she got her band on and we have seen changes only after 3 weeks of treatment!!!

, mom to Norah, 12 months- plagio and brachy

Plagiocephaly From: JenandLuli@...Date: Wed, 14 Apr 2010 13:38:19 -0400Subject: Re: just starting process....second opinion...lots of questions!

Go to CT and get the free consult... Then take the info to your ped. Maybe you could get the rx that way. Also, has your son been evaluated for torticollis? That is really common in leading to plagio. If the tort is not treated then your baby will never get off his right side.

JenMom to Luli - 4 yrs oldTorticollis, Plagio, Syringomyelia

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

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 t he 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 f ar 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?

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