Need advise (moral support) for a 12 month old with Brachycephaly

[Guest guest]

My foster baby was caught in a red tape saga trying to get a DocBand from

Cranial Technologies. He was diagnosed with Brachycephaly when he was 5 ¾

months old. Because he is a foster baby the funding had to come from grants

since Medicaid turned him down. We were 90% funded at the beginning of May when

the Las Vegas office of Cranial Technologies decided to close their offices. We

had just received the last 10% three days before they took their last patient

here in Las Vegas. Unfortunately for the baby they did not have the courtesy to

contact the social worker to inform her in time (btw, I would DEFINITELY NOT

recommend them due to their lack of customer service). We had even offered to

drive to Arizona for final fittings once their offices closed in September but

we were denied that option as well!

We had to start all over with Hanger Prosthetics and therefore did not get the

band until the baby was over 10 months old. I am not as impressed with Hanger's

techniques (measurement tools, etc.) as I was Cranial Technologies. Because of

the extreme heat in Vegas during August the baby kept getting heat rashes during

the first month of trying to wear the helmet. Now he does not tolerate the

helmet at all, in fact he pulls it off himself.

I was obsessive about making sure he was always on his back. I had no idea that

I was causing the flat head problem. I feel so bad that I did this to him, but

we were instructed beyond a shadow of a doubt, since he was a foster baby, that

we HAD to place the baby on his back to sleep. Since he was all " head " during

his first few months, he was unable to lift his head up for tummy time and could

not turn his head for napping on his tummy (possibly torticollis). I do not know

about the measurements other than he is at 90% instead of a normal 85%.

Is there any hope that his head will reshape itself or that we still have time

to reshape his head? Is there any way to help him like to wear his helmet? The

pediatrician told me at 4 months that his hair would cover the flat head and

gave me grief about even writing the prescription. I think she should have told

me at that time about the re-positioning techniques when there might have been

time to reshape his little head.

Thanks in advance for any help and support anyone provides to me.

[Guest guest]

Hi,

I think your main hope now is the helmet. You cannot expect any

reshaping on its own. Usually the babies almost prefer the helmet.

When my son went through phases of pulling his Starband helmet off,

we tried duct taping the strap shut, and that did the trick. My son

really didn't mind the helmet. Perhaps now that it is getting

cooler, you will have more luck.

Best,

Kathy

On 10/9/2010 10:06 AM, Lexi Wynona wrote:

My foster baby was caught in a red tape saga trying to

get a DocBand from Cranial Technologies. He was diagnosed

with Brachycephaly when he was 5 ¾ months old. Because he

is a foster baby the funding had to come from grants since

Medicaid turned him down. We were 90% funded at the

beginning of May when the Las Vegas office of Cranial

Technologies decided to close their offices. We had just

received the last 10% three days before they took their

last patient here in Las Vegas. Unfortunately for the baby

they did not have the courtesy to contact the social

worker to inform her in time (btw, I would DEFINITELY NOT

recommend them due to their lack of customer service). We

had even offered to drive to Arizona for final fittings

once their offices closed in September but we were denied

that option as well!

We had to start all over with Hanger Prosthetics and

therefore did not get the band until the baby was over 10

months old. I am not as impressed with Hanger's techniques

(measurement tools, etc.) as I was Cranial Technologies.

Because of the extreme heat in Vegas during August the

baby kept getting heat rashes during the first month of

trying to wear the helmet. Now he does not tolerate the

helmet at all, in fact he pulls it off himself.

I was obsessive about making sure he was always on his

back. I had no idea that I was causing the flat head

problem. I feel so bad that I did this to him, but we were

instructed beyond a shadow of a doubt, since he was a

foster baby, that we HAD to place the baby on his back to

sleep. Since he was all "head" during his first few

months, he was unable to lift his head up for tummy time

and could not turn his head for napping on his tummy

(possibly torticollis). I do not know about the

measurements other than he is at 90% instead of a normal

85%.

Is there any hope that his head will reshape itself or

that we still have time to reshape his head? Is there any

way to help him like to wear his helmet? The pediatrician

told me at 4 months that his hair would cover the flat

head and gave me grief about even writing the

prescription. I think she should have told me at that time

about the re-positioning techniques when there might have

been time to reshape his little head.

Thanks in advance for any help and support anyone provides

to me.