Carefirst/Blue Choice

[Guest guest]

Hi everyone, I am new to this group and have learned a lot by reading all of the messages! Our son Noah (71/2 months), was recently diagnosed with brachycephaly. He started wearing his band two weeks ago. and so far, so good. We were very apprehensive and were not sure if we were making the right decision. We have seen some slight changes and are much more comfortable now. We just received our first denial from Carefirst/Blue Choice (HMO/Virginia), UGH, and plan to appeal. Does anyone have any tips? We tried to get pre-authorization under Durable Medical Equipment, but that did not work. I am curious if anyone else has had sucess with Carefirst. We decided to start treatment anyway and keep fighting the insurance company along the way. We were afraid to wait since time is of the

essence!Thanks so much....:)From: ygoodmountain <ygoodmountain@...>Subject: Re: Doesn't like his new helmet, HELP!! VERY frustratedPlagiocephaly Date: Sunday, November 30, 2008, 5:54 PM

Thank you everybody for your support and empathy.

And sorry for not introducing myself. I'm new to this group.

I was so upset last night that I forgot to do this.

My son's name is E (my husband prefers to be private) and he is almost

6 months old. He was born 5 weeks early, and has milk protein

allergy. He had reflux, so we had to put him in a car seat a lot.

Combined with his soft head, he developed flat head due to these

conditions I mentioned. He has plagiocepharcy. His right ear is

sticking out and his eyes look like those of a typical plagio baby.

Now he can roll over or move around the room.

His helmet says, "Boston Band (Brace?)" that I got from Children's

Hospital. The doc said his case is severe that we can't use StarBand.

He had an adjustment about 10 days ago. I think he was doing better

this adjustment. He could keep sleeping after I put it on while he

was asleep. Now he just can't sleep in it, except when he is in a car

seat.

I'd appreciate it if anyone could share tips how he can get used to

this helmet. Does he need a different brand, a second one? I agree

that he needs another adjustment. I already spoke to an orthotist,

but all he could say is to do the best I can and I make the final

decision. (Not really a practical help) We have an appointment with a

craninofacial specialist on Monday, but probably we will end up

talking only about medical stuff, not daily, practical tips. Also we

have an appointment with an orthotist and I will ask him to adjust a

helmet then.

Thank you very much.

>

> It's been three weeks since we got this helmet. We have been through

> one adjustment. Basically, he doesn't like his helmet contrary to

> what others say - he will accept it quickly. During the day, if I

> hold him all the time, he is fine. I have to take it off when I

> breastfeed him, and at night, if he has it on, he wakes up screaming,

> sweating. (I bought him a cotton, comfortable outfit) If I'm lucky,

> he will fall asleep, but he will cry every 30 minutes. It's been

> stressful to me, my husband, and my three-year old son. My baby used

> to sleep for nine hours from 6-3, then 3 hours after, but since we got

> this helmet, he wakes up 3-4 times a night. It's very stressful, and

> I have to choose our mental health or his plagio treatment.

>

> We tried to put it on before he falls asleep (before feeding), and

> sometimes it worked. But these days I put it on after he falls

> asleep. Sometimes he stays asleep, but he will wake up crying right

> away or 10 minutes later. Medical professionals just say I choose

> what I have to do, and the only thing they can do is to tell me the

> helmet has to be on for 20-23 hours a day.

>

> I'm losing my patience, and I have been taking lots of "break" from

> the helmet. I don't know if the baby's head's deformity is

> progressing or getting better on its on. I started seeing some round

> spots. Now I use a Japanese "futon" for babies, the mattress is a

> little softer, but safe enough to be on the market, in case I can't

> put the helmet on him.

>

> please help - he is still screaming and my husband hasn't come home yet!

>

[Guest guest]

Thank you very much everybody for encouragement.

Per your advice, and after being seen by a doctor, we had the helmet

readjusted. We met a new orthotist whom I think is a better much for

us. He listened to my concerns and gave me lots of practical tips.

He slept in the helmet for last two days, although last night he woke

up 5 times, he eventually went back to sleep. With a new orthotist,

we set our goal to 14 hours more a day. Completely off for nursing

when I can't tolerate, and also for tummy time. Occasionally I would

take it off to allviate his red spots. I will call the orthotist

tomorrow to readjust again, as he may be growing more!

I may post more messages in the future, but I thank you again. I hope

all the babies will get the results all of us want!

Yoko & Eli (6 months, Boston Band, barely 4 weeks so far)