Our story please help and advise

[Guest guest]

Hello,

My name is Cara and I have a six and a half month old baby girl Lia. About 4

months ago I noticed that my baby's head was flat and brought it to the

attention of my pediatrician she said that it was positional plagiocephaly and

to not lay Lia on her head as much and give her plenty of tummy time. Since my

baby was 5 weeks old she has been an excellent sleeper she slept in her swing

(which now if I knew would never have allowed) and slept 8 hours at night (and

she is an exclusively breast fed infant)! Needless to say we were thrilled but

noticed that her head was getting worse. Lia's doc said to take her out of the

swing immediately and to put her in her crib. We did so and it it took about a

week for Lia to adjust but she was fine and continued to sleep through the

night. At Lia's 4 month visit (which was actually at 5 months) since her doc's

office didn't have any openings until that time I again discussed with Lia's

doctor the fact that Lia is only allowed to be on her back for sleep now and

that we always keep her on her tummy, her exersaucer or her bumbo seat all the

other times and when we go out we remove her as quickly as possible from her

carseat but her head is still persistently flat and her ears are now sticking

out and uneven. The doc said not to worry that her head would fix itself as it

grows and her ears if she didn't grow into them she could always have surgery

later down the road. Needless to say I wasn't comfortable with this response and

asked for the specialists name and number and called myself to make an

appointment. Once we arrived he too told me that if we were to do nothing Lia's

head would improve and that she has torticollis as well and that we needed to do

stretching exercises. He gave me a referral to Cranial technologies to get a

consultation for a docband. I went and they said Lia would definitely benefit

from the band. After dealing with insurance issues Lia is going to be fitted on

8/11 and will get her band on 8/25. I feel really bad about all of this like its

my fault. I also so scared that she will look abnormal and children will pick on

her. I am not superficial and do not mean to sound superficial but I just want

her to have a happy life and not be picked on for something I as her mother

should have been better informed about and prevented. Is it normal to feel this

way and does it get better?

Also, she still sleeps 12-13 hours a night now and refuses to let me turn her

head off of her flat spot. I have tried several nights and she wakes up

screaming and won't go back to sleep for hours. I feel terrible waking her up

every couple of hours and its also very ineffective because she won't keep her

head in the other position. I bought a sleep positioner and our pediatrician

told us not to use it EVER and Never put anything in her crib with her. If she

gets her band and refuses to sleep in a different position will it still help

her head? Does anyone have any other ideas what to do? Also, please advise about

tortiocollis I was only given exercises to do at home and I don't think I am

qualified to be the only person to treat this. Please help. Thanks.

Cara

[Guest guest]

I can assure you that she will not be abnormal. People WILL stare, but that's because THEY are abnormal - not your sweet girl ).Here are some photos of my little girl, Mia, who just finished up her DOCBand treatment.

http://i25.photobucket.com/albums/c67/kjnellamore/DSC_1165.jpghttp://i25.photobucket.com/albums/c67/kjnellamore/DSC_1238.jpg

http://i25.photobucket.com/albums/c67/kjnellamore/DSC_1162.jpghttp://i25.photobucket.com/albums/c67/kjnellamore/DSC_1065-2.jpg

Hope that helps you feel a little better!Mia also has Torticollis, but she was already in physical therapy for other issues. I would definitely ask for a referral for an evaluation either privately or by the early intervention program in your state.

KimOn Fri, Jul 24, 2009 at 7:28 AM, cp3801 <cp3801@...> wrote:

 

Hello,

My name is Cara and I have a six and a half month old baby girl Lia. About 4 months ago I noticed that my baby's head was flat and brought it to the attention of my pediatrician she said that it was positional plagiocephaly and to not lay Lia on her head as much and give her plenty of tummy time. Since my baby was 5 weeks old she has been an excellent sleeper she slept in her swing (which now if I knew would never have allowed) and slept 8 hours at night (and she is an exclusively breast fed infant)! Needless to say we were thrilled but noticed that her head was getting worse. Lia's doc said to take her out of the swing immediately and to put her in her crib. We did so and it it took about a week for Lia to adjust but she was fine and continued to sleep through the night. At Lia's 4 month visit (which was actually at 5 months) since her doc's office didn't have any openings until that time I again discussed with Lia's doctor the fact that Lia is only allowed to be on her back for sleep now and that we always keep her on her tummy, her exersaucer or her bumbo seat all the other times and when we go out we remove her as quickly as possible from her carseat but her head is still persistently flat and her ears are now sticking out and uneven. The doc said not to worry that her head would fix itself as it grows and her ears if she didn't grow into them she could always have surgery later down the road. Needless to say I wasn't comfortable with this response and asked for the specialists name and number and called myself to make an appointment. Once we arrived he too told me that if we were to do nothing Lia's head would improve and that she has torticollis as well and that we needed to do stretching exercises. He gave me a referral to Cranial technologies to get a consultation for a docband. I went and they said Lia would definitely benefit from the band. After dealing with insurance issues Lia is going to be fitted on 8/11 and will get her band on 8/25. I feel really bad about all of this like its my fault. I also so scared that she will look abnormal and children will pick on her. I am not superficial and do not mean to sound superficial but I just want her to have a happy life and not be picked on for something I as her mother should have been better informed about and prevented. Is it normal to feel this way and does it get better?

Also, she still sleeps 12-13 hours a night now and refuses to let me turn her head off of her flat spot. I have tried several nights and she wakes up screaming and won't go back to sleep for hours. I feel terrible waking her up every couple of hours and its also very ineffective because she won't keep her head in the other position. I bought a sleep positioner and our pediatrician told us not to use it EVER and Never put anything in her crib with her. If she gets her band and refuses to sleep in a different position will it still help her head? Does anyone have any other ideas what to do? Also, please advise about tortiocollis I was only given exercises to do at home and I don't think I am qualified to be the only person to treat this. Please help. Thanks.

Cara

[Guest guest]

Cara,

Unfortunately, your story sounds so much like many others on this board and the sad thing is that many other parents will join this group with a very similar story... I was pretty much where you are about a year ago. Our story is long but I'll give you the following advice:

- Get your daughter to see a PT for her tort. The tort is what contributed to your daughter's plagio/brachy more than anything else. The stretches at home are important, but like you said, you are not physical therapist and you need to know that what you are doing with her is working.

- Get your daughter in a DOC band as soon as possible. It is too bad that CT cannot fit her in sooner than 8/25. Is there any way you can get her in within the next two weeks. At this age, she is growing fast and you do not want to miss a major growth spurt.

- Once the band is on, sit back and relax. You won't have to reposition her in her crib anymore. There will be space in the band for her head to grow in the right direction and the pressure points will prevent it from growing in the wrong one.

- My daughter, Maysa, got her first DOC band when she was 9.5 months and we started seeing results within that first week. Her head is not perfect (for other reasons) but she looks great and I am so glad we put her through 2 DOC bands. Feel free to check her blog at www.mymaysa.wordpress.com

Leila,

Maysa, 18 mo, DOC band Grad 5.29.09

www.mymaysa.wordpress.com

From: cp3801 <cp3801@...>Subject: Our story please help and advisePlagiocephaly Date: Friday, July 24, 2009, 8:28 AM

Hello, My name is Cara and I have a six and a half month old baby girl Lia. About 4 months ago I noticed that my baby's head was flat and brought it to the attention of my pediatrician she said that it was positional plagiocephaly and to not lay Lia on her head as much and give her plenty of tummy time. Since my baby was 5 weeks old she has been an excellent sleeper she slept in her swing (which now if I knew would never have allowed) and slept 8 hours at night (and she is an exclusively breast fed infant)! Needless to say we were thrilled but noticed that her head was getting worse. Lia's doc said to take her out of the swing immediately and to put her in her crib. We did so and it it took about a week for Lia to adjust but she was fine and continued to sleep through the night. At Lia's 4 month visit (which was actually at 5 months) since her doc's office didn't have any openings until that time I again discussed with Lia's doctor the fact

that Lia is only allowed to be on her back for sleep now and that we always keep her on her tummy, her exersaucer or her bumbo seat all the other times and when we go out we remove her as quickly as possible from her carseat but her head is still persistently flat and her ears are now sticking out and uneven. The doc said not to worry that her head would fix itself as it grows and her ears if she didn't grow into them she could always have surgery later down the road. Needless to say I wasn't comfortable with this response and asked for the specialists name and number and called myself to make an appointment. Once we arrived he too told me that if we were to do nothing Lia's head would improve and that she has torticollis as well and that we needed to do stretching exercises. He gave me a referral to Cranial technologies to get a consultation for a docband. I went and they said Lia would definitely benefit from the band. After dealing with insurance

issues Lia is going to be fitted on 8/11 and will get her band on 8/25. I feel really bad about all of this like its my fault. I also so scared that she will look abnormal and children will pick on her. I am not superficial and do not mean to sound superficial but I just want her to have a happy life and not be picked on for something I as her mother should have been better informed about and prevented. Is it normal to feel this way and does it get better? Also, she still sleeps 12-13 hours a night now and refuses to let me turn her head off of her flat spot. I have tried several nights and she wakes up screaming and won't go back to sleep for hours. I feel terrible waking her up every couple of hours and its also very ineffective because she won't keep her head in the other position. I bought a sleep positioner and our pediatrician told us not to use it EVER and Never put anything in her crib with her. If she gets her band and refuses to sleep

in a different position will it still help her head? Does anyone have any other ideas what to do? Also, please advise about tortiocollis I was only given exercises to do at home and I don't think I am qualified to be the only person to treat this. Please help. Thanks. Cara