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

[Guest guest]

Why are peds so stiff when it comes to a band? I don't understand?!?!? My ped was right on top of things when it came to getting a prescription for whatever I needed and/or wanted for my son. I guess I got lucky and have a great ped for that matter.

From: <andrea.murr@...>Subject: Re: just starting process....second opinion...lots of questions!Plagiocephaly Date: Tuesday, April 13, 2010, 12:27 PM

I went through the same issues. After I pushed and pushed the ped did write the prescription. However, if yours won't you might try going to a plastic surgeon. They are usually more willing to prescribe the helmet.>> 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]

Wow. That just amazes me! My ped is the one who said something to us at his one month check up and boy am I glad she did!! She is one of Washington, DC areas best pediatricians and I now see why!

From: mcg_woo <mcg_woo@...>Subject: Re: just starting process....second opinion...lots of questions!Plagiocephaly Date: Tuesday, April 13, 2010, 4:48 PM

,I can't understand it, either. Why are so many peds against banding when it offers such remarkable results and is virtually risk-free? It makes no sense. Our ped wouldn't write a script for a band even after someone from Cranial Tech visited her office. I just think a lot of the peds are older, set in their ways and are not up on the latest research. Our ped has been great up until this point, but I really feel like she let us down on this one, especially since I started bringing up the head shape issue when my daughter was only 2 months old. I can only hope that she learned something and will do better the next time with another infant who presents with similar symptoms. I'm just glad she diagnosed the tort when she did and sent up to a PT who was knowledgeable about helmet therapy.You are fortunate to have a ped who listened to you. I trusted my daughter's even though my gut told me otherwise. It has been a

lesson learned for me.-Amy > >> > 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 believe that it is the official position of the American Pediatric association (or whatever the official name is) that the head will round out. Someone else may know this for sure, but I read it somewhere.

Crazy, huh? So, this is what the doctors are taught in medical school. Unless they've had other experiences, they are probably likely to go with what they are taught.

My ped is a by the book person and I usually appreciate that. She has done right by us in other ways, which is why we stick by her. When I finally learned enough about needing to push the issue, she didn't stand in my way. She was actually surprised to hear that I wanted to consider a band, but she had no problem writing me a referral. She did not write the script, because she wanted a specialist to let me know if it was too late. So, even though she did fail my daughter with this, we haven't fired her because of the other things that she has done for us.

Re: just starting process....second opinion...lots of questions!Plagiocephaly Date: Tuesday, April 13, 2010, 4:48 PM

,I can't understand it, either. Why are so many peds against banding when it offers such remarkable results and is virtually risk-free? It makes no sense. Our ped wouldn't write a script for a band even after someone from Cranial Tech visited her office. I just think a lot of the peds are older, set in their ways and are not up on the latest research. Our ped has been great up until this point, but I really feel like she let us down on this one, especially since I started bringing up the head shape issue when my daughter was only 2 months old. I can only hope that she learned something and will do better the next time with another infant who presents with similar symptoms. I'm just glad she diagnosed the tort when she did and sent up to a PT who was knowledgeable about helmet therapy.You are fortunate to have a ped who listened to you. I trusted my daughter's even though my gut told me otherwise. It has been a lesson learned for me.-Amy > >> > 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?> >>