Re: My daughter just got diagnosed with plagiocephaly.

[Guest guest]

Hi ,

Welcome to the group. I'm sorry to hear your daughter still isn't sleeping well. Usually that is all worked out in a few days. Where are you and what kind of helmet do you have? There are a few brands that come in pink Have you noticed any red spots on her head when you take it off? Do they fade? Are they getting better or worse? When you say she has new bulges ar ethey in areas you want to fill in or is she getting more flat? Sorry for the million questions. We have a chat tonight at 10 PM EST. We could probably help you our there.

Without knowing which one she has I can't give you more specifics on how your specific helmet working but I can give you a general idea of the two different types. There are many brands of each type. Passive helmets are larger than the babies head and tend to have quiet a bit of room. The idea is that as the baby's head grows it takes on the desired round shape of the inside of the helmet. These bands are usually worn by younger babies and require follow-up about once every 4-6 weeks. They look more like football helmets or hockey helmets and may even have a chin strap. Active bands fit a bit tighter. They usually have a bigger opening on the top of the head but some are almost all the way closed like a helmet. They will usually only move 1/2 - 1" side to side as they are jostled with normal movement. They fit tighter near the prominant/bossing areas. They have lots of room for gorwth in the flat areas. The

prominant areas are held by the band while the flat areas fill in. The brain will take the path of least resistance so the slight (ever so slight) pressure on the holding points encourages the brain and thus the skull to fill in the flat areas. Active bands require adjustments every 1-2 weeks depending on the baby's growth. As the flat areas are filled in more band is shaved away on the inside to allow for more growth. Does that help? Like I said I will be in chat tonight along with some other "veterans" if you have any more questions.

mom to na

DOC Grad 2/2004

SCbarbmos <barbmos@...> wrote:

Hi. My daughter is 5 months old and they just told me she has plagiocephaly. She has to wear a little pink helmet. She looks like a hockey player. It makes is so hard for her to sleep. She moves at all and it wakes her up. She has had it a week and 4 days. I am not sure how I feel about it. She seems to have new buldges. I honestly don't see how it works since she can wiggle her head in it and isn't doing anything but making her head hot. Does anyone get how they work?Sincerely,For more plagio info

[Guest guest]

,

I don't know what type hers is but it is soft and squshy and has a

chin strap. On the flat spot she has what I call the foot. It looks

almost like a little shoe velcrowed on. When we take it off the is

getting a little buldge over her ears. The flat spot is a little

better. I just worry because her back soft spot is closed and the

other one on top is almost closed. It can only be seen by x-ray. The

doctor said she only has to wear it for 2 months but all the time. I

only take if off to change her clothes. I just moved to galax,va and

I dont know anyone who has had a child have this. She sees the

plastic surgen in Winston-Salem, VA at the Wake Forest University

Baptist Hospital. I am just worried. I just want my baby better.

>

> Hi. My daughter is 5 months old and they just told me she has

> plagiocephaly. She has to wear a little pink helmet. She looks like

a

> hockey player. It makes is so hard for her to sleep. She moves at

all

> and it wakes her up. She has had it a week and 4 days. I am not

sure

> how I feel about it. She seems to have new buldges. I honestly

don't

> see how it works since she can wiggle her head in it and isn't

doing

> anything but making her head hot. Does anyone get how they work?

> Sincerely,

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi rachel,

It sounds like a passive helmet (I'm about 90% confident). I suprised they said she would only wear it for 2 months. Most passive helmets are worn for up to 6 months. Maybe it's a combo of her expected growth and the closing of the soft spots. Did you mean Winston Salem, NC? There is a Cranial Technologies in Charlotte, NC. That is where I took na. They are great. They do free evaluations. They treat infants up to 24 months. Her soft spots are probably getting small but almost entirely closed at 6 months seems a bit odd. What does the plastic surgeon think of the soft spots being so closed? The little bulge above the ears could be fluid build-up from the helmet, but without seeing it I wouldn't know for sure. With the DOC band it velcros clsoed on the side. My daughter got a fluid pocket under the velcro opening. It went away after treatment.

Would you mind posting pictures? It would really help. Take one of her in her helmet looking straight at her face. Also, take pics in her helmet from other angles if you think they would be helpful in showing it's full detail. Then take a picture from above her head so you can see both ears and her nose (sometimes not easy - you can just tell us where the ears and nose are if necessary). Then take full face view, full back and each side. If you look at the DOC band B & A pics you'll see what I mean. It really helps to see all the angles. Now for your own peace of mind I would repeat the pictures every 2 weeks to watch for improvement.

mom to na

DOC Grad

SCbarbmos <barbmos@...> wrote:

,I don't know what type hers is but it is soft and squshy and has a chin strap. On the flat spot she has what I call the foot. It looks almost like a little shoe velcrowed on. When we take it off the is getting a little buldge over her ears. The flat spot is a little better. I just worry because her back soft spot is closed and the other one on top is almost closed. It can only be seen by x-ray. The doctor said she only has to wear it for 2 months but all the time. I only take if off to change her clothes. I just moved to galax,va and I dont know anyone who has had a child have this. She sees the plastic surgen in Winston-Salem, VA at the Wake Forest University Baptist Hospital. I am just worried. I just want my baby better.> > Hi. My daughter is 5 months old and they just told me she has > plagiocephaly. She has to wear a little pink helmet. She looks like a > hockey player. It makes is so hard for her to sleep. She moves at all > and it wakes her up. She has had it a week and 4 days. I am not sure > how I feel about it. She seems to have new buldges. I honestly don't > see how it works since she can wiggle her head in it and isn't

doing > anything but making her head hot. Does anyone get how they work?> Sincerely,> > > > > > > For more plagio info