Re: Sleepless in San Diego..older / high needs babies

[Guest guest]

We are in San Diego as well. My son got his band around 8 months also. He had/has plagio, we are supposed to be done with therapy in about 4 weeks. The first day my son had some issues with the band. He was always sweaty and pulling at the band. But we would take it off every 2-3 hours and wipe down his head, the inside of the band and put it back on. After the first day he did really well.

As for nursing, I use a boppy and haven't had problems with the band getting in the way. Surprisingly enough he seemed to nurse better with the band on and I think it's because his head felt " even " in the band and didn't have the flat spot. 

My son slept very well the first night with the band and has continued to sleep well. Once again I think it had to do with him not having the flat spot. He was diagnosed with tort as well and once he had the band the tort started to go away.

My son's plagio was from inutero positioning. I'm 4'11 " and he was 22 " and 9 pounds. BIG BABY and not enough room to move around. My husband and I didn't notice he even had plagio until his pediatrician mentioned that his head didn't seem " right " . He also has ptosis of the right eyelid that was caused by the plagio but we were told that it was a congenital defect. Well we know now it wasn't but whatever (we are a military family and sometimes doctors on base are idiots). We had no idea what the heck plagio was and how to even fix it. I am so happy his pediatrician looked at it and sent us to a cranial/facial specialist @ Balboa hospital. Because of my son's age and how time sensitive banding can be, he sent us to CT sight unseen and had them do the diagnosis. I was FLOORED when we got the pictures and measurements back confirming he had plagio. I thought it was just something his doctor was imagining but NOPE, right there was the proof. Tricare won't cover the cost of the band so we paid out of pocket and got a military and full payment up front discount. We maxed out the credit card to do it, but I wouldn't have it any other way. My son's head is getting better and he looks good. On a side note we went to see the cranial/facial specialist that referred us (having never seen my son) and said that his plagio was mild and it would have fixed itself!!! I wanted to throw my diaper bag at his head. I don't ever doubt myself or the decision we made to get the banding. 

I LOVE the San Diego location and all the therapists there. They have been very supportive and have always taken the time to answer all my questions about my sons treatment. They even helped me compile progress photos, and his head mold to take to a medical conference being held @ balboa so they could see my sons progress. 

Don't feel guilty about waiting. You are doing something about it now and from what our therapists have been telling us, we got him banded at the right time. Because I am in San Diego and you would like to see my sons photos or even meet up sometime to talk about your concerns, I'd be happy to.

SylviaAlso if you have anymore questions please feel free to ask.

[Guest guest]

Hello,My daughter was also banded right at 8 months and was and is a "high maintenance baby." Since she wasn't very laid back to begin with, the helmet really wasn't a big deal for her. She tugged at it the first time I put it on her and after that wasn't the least bit interested in it. They wear it so much that the helmet just becomes a part of them. They seem to adjust for nursing, sleeping, etc. I nursed my daughter using the football hold while she was in the helmet and worked fine--no problems at all. I will say that once she was out of the helmet and her tort was resolved she became a much better sleeper. She began sleeping on her tummy. I suspect that she was a tummy sleeper all along which may be the reason she was so high maintenance. You should not feel guilty. At least you know

that you tried repositioning to avoid the helmet. All parents would like to avoid banding if possible. We got wonderful correction at 8 months(2.47mm after 15 weeks) and my daughter continued to improve post band(1mm.) You are doing the best thing for your child. That is really what matters.Good luck!-AmyFrom: chubbachunka <chubbachunka@...>Plagiocephaly Sent: Fri, January 7, 2011 11:31:03 PMSubject: Sleepless

in San Diego..older / high needs babies

Hi all-

My son will be getting his doc band in two weeks. I am a little anxious about everything. Will he be 8 months when he gets the band. Does anyone else out there have an older LO with a helmet. How was the transition. Any advise about how to make them feel comfortable in it (especially while nursing). My son is what Dr. Sears would call a 'high needs baby' He is also teething like crazy (8 teeth already) so he doesnt sleep or feel well. I guess you could say I am hoping for the best but expecting the worse. I am feeling a sense of guilt also...is that normal? He was born with brachy/plagio but it got worse over the months of trying repositioning. I also feel guilty about not following my gut and helmeting sooner. Thanks everyone

[Guest guest]

Hi Amy

Thanks for replying. I am glad to hear from more and more parents that their

child tolerated the helmet. I have heard that some even slept better. My son

likes to pull off his hats and beenies so I am hoping that fact that he can't

get it off he will ignore it. Did your little one have a doc band? If so did

she start wearing it 23 hours on the first day? She also approved post band?

Thats awesome - cause I was worried that when it comes of it might go back to

being flat a bit...even with repositioning. Thanks for your advise. I will

keep you posted on his progress and may email you with questions along the way

if thats ok?

Take care

Lori

>

> Hello,

>

> My daughter was also banded right at 8 months and was and is a " high

maintenance

> baby. " Since she wasn't very laid back to begin with, the helmet really wasn't

a

> big deal for her. She tugged at it the first time I put it on her and after

that

> wasn't the least bit interested in it. They wear it so much that the helmet

just

> becomes a part of them. They seem to adjust for nursing, sleeping, etc. I

nursed

> my daughter using the football hold while she was in the helmet and worked

> fine--no problems at all. I will say that once she was out of the helmet and

her

> tort was resolved she became a much better sleeper. She began sleeping on her

> tummy. I suspect that she was a tummy sleeper all along which may be the

reason

> she was so high maintenance.

>

>

> You should not feel guilty. At least you know that you tried repositioning to

> avoid the helmet. All parents would like to avoid banding if possible. We got

> wonderful correction at 8 months(2.47mm after 15 weeks) and my daughter

> continued to improve post band(1mm.) You are doing the best thing for your

> child. That is really what matters.

>

> Good luck!

> -Amy

>

>

>

>

>

> ________________________________

> From: chubbachunka <chubbachunka@...>

> Plagiocephaly

> Sent: Fri, January 7, 2011 11:31:03 PM

> Subject: Sleepless in San Diego..older / high needs babies

>

>

> Hi all-

>

> My son will be getting his doc band in two weeks. I am a little anxious about

> everything. Will he be 8 months when he gets the band. Does anyone else out

> there have an older LO with a helmet. How was the transition. Any advise

about

> how to make them feel comfortable in it (especially while nursing). My son is

> what Dr. Sears would call a 'high needs baby' He is also teething like crazy

(8

> teeth already) so he doesnt sleep or feel well. I guess you could say I am

> hoping for the best but expecting the worse. I am feeling a sense of guilt

> also...is that normal? He was born with brachy/plagio but it got worse over

the

> months of trying repositioning. I also feel guilty about not following my gut

> and helmeting sooner. Thanks everyone

>

[Guest guest]

Mine got his at 9 month, wasn't high needs but wasn't easy either and

he did fine

On 1/7/11, chubbachunka <chubbachunka@...> wrote:

> Hi all-

>

> My son will be getting his doc band in two weeks. I am a little anxious

> about everything. Will he be 8 months when he gets the band. Does anyone

> else out there have an older LO with a helmet. How was the transition. Any

> advise about how to make them feel comfortable in it (especially while

> nursing). My son is what Dr. Sears would call a 'high needs baby' He is

> also teething like crazy (8 teeth already) so he doesnt sleep or feel well.

> I guess you could say I am hoping for the best but expecting the worse. I am

> feeling a sense of guilt also...is that normal? He was born with

> brachy/plagio but it got worse over the months of trying repositioning. I

> also feel guilty about not following my gut and helmeting sooner. Thanks

> everyone

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

, , and Leah

[Guest guest]

Hi Lori,Yes, I think once they realize that they can't get the band off, then they just give up. My daughter is very stubborn and even she left her helmet alone. I think once babies are around a year or more they do become more adept at getting their bands off, which creates some problems.Although, we did have a consult at Cranial Tech, we went with a local orthotist who was our insurance's preferred provider. No, my daughter did not wear her helmet 23 hours until I believe it was about the 4th day. I just followed the schedule that the orthotist provided because I wanted to get the optimum correction that I could( was banded at 8 months, so a little later than I would have preferred.) Yes, did improve post band from 2.47 to 1.0 in about 4 months. I too, was worried

about regression post banding and that was the reason that I had her re-scanned. The older a baby is when the band comes off, the less you have to worry about regression. Since my daughter was 11 months, her skull was much harder so, there was less of a chance of that happening. The orthotist said there was a 1% chance of regression at her age. Regression is much more common with unresolved torticollis. had torticollis, so I had also worried about that as well. Please do keep us posted on his progress and sure, feel free to email me with any questions that come up along the way. I'm glad to help if I can!Good luck!-AmyFrom: chubbachunka <chubbachunka@...>Plagiocephaly Sent: Sun, January 9, 2011 1:27:37 PMSubject: Re: Sleepless in San Diego..older / high needs babies

Hi Amy

Thanks for replying. I am glad to hear from more and more parents that their child tolerated the helmet. I have heard that some even slept better. My son likes to pull off his hats and beenies so I am hoping that fact that he can't get it off he will ignore it. Did your little one have a doc band? If so did she start wearing it 23 hours on the first day? She also approved post band? Thats awesome - cause I was worried that when it comes of it might go back to being flat a bit...even with repositioning. Thanks for your advise. I will keep you posted on his progress and may email you with questions along the way if thats ok?

Take care

Lori

>

> Hello,

>

> My daughter was also banded right at 8 months and was and is a "high maintenance

> baby." Since she wasn't very laid back to begin with, the helmet really wasn't a

> big deal for her. She tugged at it the first time I put it on her and after that

> wasn't the least bit interested in it. They wear it so much that the helmet just

> becomes a part of them. They seem to adjust for nursing, sleeping, etc. I nursed

> my daughter using the football hold while she was in the helmet and worked

> fine--no problems at all. I will say that once she was out of the helmet and her

> tort was resolved she became a much better sleeper. She began sleeping on her

> tummy. I suspect that she was a tummy sleeper all along which may be the reason

> she was so high maintenance.

>

>

> You should not feel guilty. At least you know that you tried repositioning to

> avoid the helmet. All parents would like to avoid banding if possible. We got

> wonderful correction at 8 months(2.47mm after 15 weeks) and my daughter

> continued to improve post band(1mm.) You are doing the best thing for your

> child. That is really what matters.

>

> Good luck!

> -Amy

>

>

>

>

>

> ________________________________

> From: chubbachunka <chubbachunka@...>

> Plagiocephaly

> Sent: Fri, January 7, 2011 11:31:03 PM

> Subject: Sleepless in San Diego..older / high needs babies

>

>

> Hi all-

>

> My son will be getting his doc band in two weeks. I am a little anxious about

> everything. Will he be 8 months when he gets the band. Does anyone else out

> there have an older LO with a helmet. How was the transition. Any advise about

> how to make them feel comfortable in it (especially while nursing). My son is

> what Dr. Sears would call a 'high needs baby' He is also teething like crazy (8

> teeth already) so he doesnt sleep or feel well. I guess you could say I am

> hoping for the best but expecting the worse. I am feeling a sense of guilt

> also...is that normal? He was born with brachy/plagio but it got worse over the

> months of trying repositioning. I also feel guilty about not following my gut

> and helmeting sooner. Thanks everyone

>

[Guest guest]

Thanks so much Amy! He gets banded on the 25th so I will keep you posted.

Thanks for your help.

> >

> > Hello,

> >

> > My daughter was also banded right at 8 months and was and is a " high

> >maintenance

> >

> > baby. " Since she wasn't very laid back to begin with, the helmet really

wasn't

> >a

> >

> > big deal for her. She tugged at it the first time I put it on her and after

> >that

> >

> > wasn't the least bit interested in it. They wear it so much that the helmet

> >just

> >

> > becomes a part of them. They seem to adjust for nursing, sleeping, etc. I

> >nursed

> >

> > my daughter using the football hold while she was in the helmet and worked

> > fine--no problems at all. I will say that once she was out of the helmet and

> >her

> >

> > tort was resolved she became a much better sleeper. She began sleeping on

her

> > tummy. I suspect that she was a tummy sleeper all along which may be the

reason

> >

> > she was so high maintenance.

> >

> >

> > You should not feel guilty. At least you know that you tried repositioning

to

> > avoid the helmet. All parents would like to avoid banding if possible. We

got

> > wonderful correction at 8 months(2.47mm after 15 weeks) and my daughter

> > continued to improve post band(1mm.) You are doing the best thing for your

> > child. That is really what matters.

> >

> > Good luck!

> > -Amy

> >

> >

> >

> >

> >

> > ________________________________

> > From: chubbachunka <chubbachunka@>

> > Plagiocephaly

> > Sent: Fri, January 7, 2011 11:31:03 PM

> > Subject: Sleepless in San Diego..older / high needs babies

> >

> >

> > Hi all-

> >

> > My son will be getting his doc band in two weeks. I am a little anxious

about

>

> > everything. Will he be 8 months when he gets the band. Does anyone else

out

> > there have an older LO with a helmet. How was the transition. Any advise

> >about

> >

> > how to make them feel comfortable in it (especially while nursing). My son

is

> > what Dr. Sears would call a 'high needs baby' He is also teething like

crazy

> >(8

> >

> > teeth already) so he doesnt sleep or feel well. I guess you could say I am

> > hoping for the best but expecting the worse. I am feeling a sense of guilt

> > also...is that normal? He was born with brachy/plagio but it got worse over

> >the

> >

> > months of trying repositioning. I also feel guilty about not following my

gut

> > and helmeting sooner. Thanks everyone

> >

>