Re: Still unsure

[Guest guest]

Hi Pam,

You know, everyone's going to jump in and say, "Go for it, Do it!" And, I guess I'm one of those people, too. But, you're doing the right thing by thinking it all the way through. I can tell you, though, from our experience with Grace's band, she's suffered no ill effects. I feel confident I did the right thing and if I had it to do over again wouldn't change one thing!

Maybe Cameron's head would round out as he gets older. But, unfortunately, we're dealing with unknowns. Sometimes it's better to prepare for the worst and hope for the best. Meaning, box the watermelon and be happy with the results you get.

That's my silly opinion, anyway.

C./subscribe/Plagiocephaly

----- Original Message -----

From: Doug & Pam

Plagiocephalyegroups

Sent: Thursday, April 06, 2000 9:31 PM

Subject: Still unsure

We had our first appointment at the craniofacial clinic today... I thought I would come away from this appointment with a clear decision about whether or not we would go with the helmet. I have more information, but I'm still unsure about what to do. I thought Dr. Cunningham was excellent... he was very nice and "down to earth", took plenty of time chatting with us and answering questions, and didn't talk down to us like so many doctors seem to do. In fact, he was surprised at how much we knew and said we were the most educated parents about plagiocephaly that he has ever met! Thanks to this group and website, of course. And get this - he asked me for the web address and is contemplating joining the group, even if only as an "incognito" observer!

Anyway, he diagnosed Cameron with mild to moderate plagio (without doing any measurements or scans), and said that about 50% of parents with kids who have a similar degree of severity to Cameron opt for the helmet (the other 50% do nothing). He wouldn't make a recommendation as to whether we should go for it or not, but gave us all the insurance info for pre-authorization and a letter to provide to the insurance company for justification. The thing that I'm struggling with is that my pediatrician (and it seems many other doctors) says Cameron's head will round out in time, but this doctor today said that after 6 months, there really won't be much change in the shape of his skull since most of the brain growth has occurred... the skull will just get bigger but stay in the same shape. I don't know who to believe since there seems to be such a difference of opinion among medical professionals. If Cameron had a clearly severe or moderate case, I wouldn't even hesitate to get the helmet. But it is on the border of mild/moderate and looks so much better than it did... I hate to put Cameron through it if there's a possibility it will correct on its own and if the helmet/chinstrap is going to be uncomfortable and hot and itchy, especially during the summer. I suppose there is nothing to lose by doing it... I think I just need to be convinced! This decision is harder than I thought it would be.

-Pam

[Guest guest]

Thanks . I'm going to get the insurance pre-authorization process started today anyway. I'll probably end up doing the same and asking everyone I know what they think! -Pam

----- Original Message -----

From: King

Plagiocephalyegroups

Sent: Friday, April 07, 2000 12:01 PM

Subject: Re: Still unsure

Hi Pam,

Your story sounds so familiar. It was the same way with . The dr. said he was mild to moderate so it's up to us. He never made a recommendation one way or the other. Needless to say, we agonized for about 3 weeks trying to decide if we should do it or not. We asked everyones opinion. Finally it was our family doctor that said why not try it. It won't hurt to try. Well we did go with the DOC band and are glad we did. has had great results and is set to "graduate" next week (after 12 wks of wear).

----- Original Message -----

From: Doug & Pam

Plagiocephalyegroups

Sent: Thursday, April 06, 2000 8:31 PM

Subject: Still unsure

We had our first appointment at the craniofacial clinic today... I thought I would come away from this appointment with a clear decision about whether or not we would go with the helmet. I have more information, but I'm still unsure about what to do. I thought Dr. Cunningham was excellent... he was very nice and "down to earth", took plenty of time chatting with us and answering questions, and didn't talk down to us like so many doctors seem to do. In fact, he was surprised at how much we knew and said we were the most educated parents about plagiocephaly that he has ever met! Thanks to this group and website, of course. And get this - he asked me for the web address and is contemplating joining the group, even if only as an "incognito" observer!

Anyway, he diagnosed Cameron with mild to moderate plagio (without doing any measurements or scans), and said that about 50% of parents with kids who have a similar degree of severity to Cameron opt for the helmet (the other 50% do nothing). He wouldn't make a recommendation as to whether we should go for it or not, but gave us all the insurance info for pre-authorization and a letter to provide to the insurance company for justification. The thing that I'm struggling with is that my pediatrician (and it seems many other doctors) says Cameron's head will round out in time, but this doctor today said that after 6 months, there really won't be much change in the shape of his skull since most of the brain growth has occurred... the skull will just get bigger but stay in the same shape. I don't know who to believe since there seems to be such a difference of opinion among medical professionals. If Cameron had a clearly severe or moderate case, I wouldn't even hesitate to get the helmet. But it is on the border of mild/moderate and looks so much better than it did... I hate to put Cameron through it if there's a possibility it will correct on its own and if the helmet/chinstrap is going to be uncomfortable and hot and itchy, especially during the summer. I suppose there is nothing to lose by doing it... I think I just need to be convinced! This decision is harder than I thought it would be.

-Pam

[Guest guest]

Pam.....When we first saw neuro we were given the choice to treat or not. We

did not hesitate. We figured we had nothing to lose but $$ if ins did not

pay. We have spent money on dumber things. Not until after my son had helmet

did I notice features being off. I would rather go thru it and see some

improvemnt than not and have more problems later when nothing can be done at

all. Belinda (Indiana)

[Guest guest]

Hi Pam,

Your story sounds so familiar. It was the same way with . The dr. said he was mild to moderate so it's up to us. He never made a recommendation one way or the other. Needless to say, we agonized for about 3 weeks trying to decide if we should do it or not. We asked everyones opinion. Finally it was our family doctor that said why not try it. It won't hurt to try. Well we did go with the DOC band and are glad we did. has had great results and is set to "graduate" next week (after 12 wks of wear).

----- Original Message -----

From: Doug & Pam

Plagiocephalyegroups

Sent: Thursday, April 06, 2000 8:31 PM

Subject: Still unsure

We had our first appointment at the craniofacial clinic today... I thought I would come away from this appointment with a clear decision about whether or not we would go with the helmet. I have more information, but I'm still unsure about what to do. I thought Dr. Cunningham was excellent... he was very nice and "down to earth", took plenty of time chatting with us and answering questions, and didn't talk down to us like so many doctors seem to do. In fact, he was surprised at how much we knew and said we were the most educated parents about plagiocephaly that he has ever met! Thanks to this group and website, of course. And get this - he asked me for the web address and is contemplating joining the group, even if only as an "incognito" observer!

Anyway, he diagnosed Cameron with mild to moderate plagio (without doing any measurements or scans), and said that about 50% of parents with kids who have a similar degree of severity to Cameron opt for the helmet (the other 50% do nothing). He wouldn't make a recommendation as to whether we should go for it or not, but gave us all the insurance info for pre-authorization and a letter to provide to the insurance company for justification. The thing that I'm struggling with is that my pediatrician (and it seems many other doctors) says Cameron's head will round out in time, but this doctor today said that after 6 months, there really won't be much change in the shape of his skull since most of the brain growth has occurred... the skull will just get bigger but stay in the same shape. I don't know who to believe since there seems to be such a difference of opinion among medical professionals. If Cameron had a clearly severe or moderate case, I wouldn't even hesitate to get the helmet. But it is on the border of mild/moderate and looks so much better than it did... I hate to put Cameron through it if there's a possibility it will correct on its own and if the helmet/chinstrap is going to be uncomfortable and hot and itchy, especially during the summer. I suppose there is nothing to lose by doing it... I think I just need to be convinced! This decision is harder than I thought it would be.

-Pam

[Guest guest]

Hi Pam,

I'm glad you had a good meeting with Dr Cunningham. My son, too, was diagnosed at Children's as a moderate case. I'm sorry I can't remember how old Cameron is, but from what I learned, I agree that after 6-mo of age the chance of self-correction is minimal. You might want to get Cameron's asymmetry measured if that would help you decide. Also, if he has facial asymmetry (not just head), that might be a reason to get correction. You're right that there's not much to lose by going ahead with a device (helmet or band), except that it's a pretty big hassle for the parents. The baby won't even know it's there, and it does provide protection during the sitting up and learning to crawl stages!

Good luck w/ your decision.

----- Original Message -----

From: Doug & Pam

Plagiocephalyegroups

Sent: Thursday, April 06, 2000 7:31 PM

Subject: Still unsure

We had our first appointment at the craniofacial clinic today... I thought I would come away from this appointment with a clear decision about whether or not we would go with the helmet. I have more information, but I'm still unsure about what to do. I thought Dr. Cunningham was excellent... he was very nice and "down to earth", took plenty of time chatting with us and answering questions, and didn't talk down to us like so many doctors seem to do. In fact, he was surprised at how much we knew and said we were the most educated parents about plagiocephaly that he has ever met! Thanks to this group and website, of course. And get this - he asked me for the web address and is contemplating joining the group, even if only as an "incognito" observer!

Anyway, he diagnosed Cameron with mild to moderate plagio (without doing any measurements or scans), and said that about 50% of parents with kids who have a similar degree of severity to Cameron opt for the helmet (the other 50% do nothing). He wouldn't make a recommendation as to whether we should go for it or not, but gave us all the insurance info for pre-authorization and a letter to provide to the insurance company for justification. The thing that I'm struggling with is that my pediatrician (and it seems many other doctors) says Cameron's head will round out in time, but this doctor today said that after 6 months, there really won't be much change in the shape of his skull since most of the brain growth has occurred... the skull will just get bigger but stay in the same shape. I don't know who to believe since there seems to be such a difference of opinion among medical professionals. If Cameron had a clearly severe or moderate case, I wouldn't even hesitate to get the helmet. But it is on the border of mild/moderate and looks so much better than it did... I hate to put Cameron through it if there's a possibility it will correct on its own and if the helmet/chinstrap is going to be uncomfortable and hot and itchy, especially during the summer. I suppose there is nothing to lose by doing it... I think I just need to be convinced! This decision is harder than I thought it would be.

-Pam

[Guest guest]

You'll do fine and so will your baby boy. I actually took it all much harder than what my son did. I cried and cried the first day. I struggled with the whole process. He was 8mos old when he was banded and never really skipped a beat. The hardest part for me was keeping him cool during the night. I had to find a happy medium between keeping him cool, not too cold, and not too hot. Once I mastered that it was fine. You'll be relieved you banded once you start to see results. We saw results within the first 2wks..so much that I have to convince myself that he still needs to wear it. All I do at that point is think about the $3k check I had to write for it. At that point I am convinced it needs to run its course. God bless and take care! Tammy (mommy to Christian docband 04.18.08 - Arlington, TX)cdm11382 <cdm11382@...> wrote: My son is now 6 months old and has been diagnosed with plagio. After seeing 4 doctors we finally got a prescription. I guess I am just really torn on what to do. I want to cry every time I look at my baby's misshaped head. I want it to look perfect like every mother wants their child to look. I am really nervous about how my son will react to the helmet. I have heard that the first few weeks are really tough. We are scheduled for the scan next week and I am a nervous wreck! Any advice would be greatly

appreciated.

[Guest guest]

I know it seems hard now but it really was worth banding my daughter. The results were worth every minute of her wearing the band. And she never inded it at all. She wore a StARband from age 9 to 12 months. It does take some babies a few weeks to adjust but Jenna never had any issues adjusting. Look through some of the photos and see how happy the babies are and look at the before and after results. Those really helped me before banding. Good luck and please keep us posted.

Angie and Jenna(STAR grad 2003)

still unsure

My son is now 6 months old and has been diagnosed with plagio. After seeing 4 doctors we finally got a prescription. I guess I am just really torn on what to do. I want to cry every time I look at my baby's misshaped head. I want it to look perfect like every mother wants their child to look. I am really nervous about how my son will react to the helmet. I have heard that the first few weeks are really tough. We are scheduled for the scan next week and I am a nervous wreck! Any advice would be greatly appreciated.

[Guest guest]

Hi there. My daughter turned 5 months old yesterday. She got her band on Friday, so this is her first week. I was feeling the same way you were. We have the best OT that we are working with on the DOC band. My daughter is doing amazingly well! I was all set up for her to be screaming all the time and to be up all night and honestly...she has done so good!!! She got it on Friday and wore it most of the day. We took it off every 3 - 4 hours to check for red spots. She had a few, so we put cortisone cream on them, then put the helmet back on. She didn't sleep in it on Fri night. So she got up Sat morning and we put it on her. She wore it all day with us checking every 3 - 4 hours again. Sat night was her first night in the helmet...she didn't even wake up! if you can believe that She only started sleeping through the night about 2 weeks ago so I thought for sure she would revert back to waking up and she hasn't. She's done so good. Sunday she did great as well. Then yesterday was the first day we didn't check it throughout the day. Just once in the morning she has it off for about 20 min and once at night for bath time. The worst part (besides not feeling like you can snuggle her and kiss her head) is that she gets hot. So you want to be sure to dress you son as cooly as possible.

Anyways, if you have any other questions feel free to ask!

Plagiocephaly From: cdm11382@...Date: Tue, 27 May 2008 16:25:37 +0000Subject: still unsure

My son is now 6 months old and has been diagnosed with plagio. After seeing 4 doctors we finally got a prescription. I guess I am just really torn on what to do. I want to cry every time I look at my baby's misshaped head. I want it to look perfect like every mother wants their child to look. I am really nervous about how my son will react to the helmet. I have heard that the first few weeks are really tough. We are scheduled for the scan next week and I am a nervous wreck! Any advice would be greatly appreciated. Give to a good cause with every e-mail. Join the i’m Initiative from Microsoft.