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

[Guest guest]

My daughter had brachy and wore a starband. She got it at 5 mo old, but even we

had some bad advice from our ped - at 2 mo when we started noticing the problem

we were told " don't worry " . I'm not sure how you child looks, but our specialist

recommends banding at 90% or above, so by that criteria he is borderline - not

as bad as many. He will likely get some rounding out as he grows, but the

problem tends to be that the extra width will remain. My daughter graduated at

10 mo old. We had her head remeasured at 14 mo and although she had grown her

head didn't improve since the growth was all over.

If I were you I would go back to Hanger and see if the band fits properly. I

don't think he should be able to take it off himself it the fit is good. Also if

he is opening the velcro you can try putting a clip/barrette on the velcro so he

can't do it. Also try distraction to keep him from pulling it off, and make a

big deal if he keeps it on. I would recommend trying to do a little more if you

can. Babies can be banded up until 2 yrs old (although some orthos don't

continue past 18 mo, and a few past 1 yr). His head is still growing and there

is hope :-)

-christine

sydney, 4.5 yrs, starband grad

>

> 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.

>