Severe brachy and severe frustration

[Guest guest]

My son has severe brachy with a cephalic index of 104% and assymetry of 7mm. I

am obsessed with his head and am terrified that it is too severe to ever look

normal. He is 6 1/2 months old and we have been trying to get him in a helmet

for 5 months! We started repositioning when he was 6 weeks, and he has been

going to physical therapy for tort. since he was 4 months old. We live in

Tulsa, OK and are 1 1/2 hours away from Hanger and 5 hours away from CT in

Dallas. We made the mistake of trying a local O & P that uses starbands, and the

orthotic wasted 6 weeks of our time. Innovative O and P is the name, and the

orthotic didn't submit the proper paperwork to BCBS. He took a plaster mold of

my son's head and sent it off, and then didn't call us back for 3 weeks, only to

finally tell us that the mold was damaged in the mail and he had to do it again.

Obviously, we have moved on and are now working with Hanger in OKC. But, we had

to start with square one and are waiting for the predetermination with BCBS.

In the last 5 months, his brachy has gotten worse. He also has mild plagio on

the left side. Hanger has been great so far and are trying to rush BCBS to make

a decision either way. At this point, I just want him in a helmet ASAP. I

think realistically he will be 7 1/2 months before he is actually in it. I am

so frustrated and scared! Has anyone else seen major improvement in brachy this

late? What if the helmet doesn't work like I am expecting it to? I will move

on to CT next, I guess, but it is so far away and my husband and I both work. I

feel like I have been trying to be calm and patient for 5 months now and he has

just gotten worse.

Casey, mother of

Maverick 6 1/2 months

[Guest guest]

I don't know anything about how much correction of brachy is

possible (many others here will), but I want to wish you good

luck and commend you for keeping at it! Your son is very

young still, so I bet you will get good results.

>

> My son has severe brachy with a cephalic index of 104% and assymetry of 7mm.

I am obsessed with his head and am terrified that it is too severe to ever look

normal. He is 6 1/2 months old and we have been trying to get him in a helmet

for 5 months! We started repositioning when he was 6 weeks, and he has been

going to physical therapy for tort. since he was 4 months old. We live in

Tulsa, OK and are 1 1/2 hours away from Hanger and 5 hours away from CT in

Dallas. We made the mistake of trying a local O & P that uses starbands, and the

orthotic wasted 6 weeks of our time. Innovative O and P is the name, and the

orthotic didn't submit the proper paperwork to BCBS. He took a plaster mold of

my son's head and sent it off, and then didn't call us back for 3 weeks, only to

finally tell us that the mold was damaged in the mail and he had to do it again.

Obviously, we have moved on and are now working with Hanger in OKC. But, we had

to start with square one and are waiting for the predetermination with BCBS.

>

> In the last 5 months, his brachy has gotten worse. He also has mild plagio on

the left side. Hanger has been great so far and are trying to rush BCBS to make

a decision either way. At this point, I just want him in a helmet ASAP. I

think realistically he will be 7 1/2 months before he is actually in it. I am

so frustrated and scared! Has anyone else seen major improvement in brachy this

late? What if the helmet doesn't work like I am expecting it to? I will move

on to CT next, I guess, but it is so far away and my husband and I both work. I

feel like I have been trying to be calm and patient for 5 months now and he has

just gotten worse.

>

> Casey, mother of

> Maverick 6 1/2 months

>

[Guest guest]

Hi Casey……just read your posting. My 6 month

old son, Grant, just got his CT helmet last week. I can tell you that even if

your son gets his helmet at 7.5 months, he will still see dramatic improvement

in his head shape…it just might take longer wearing it. That’s

what the tech at CT told us. Grant has 93% brachy and moderate plagio and his

estimated time to wear it is 3 months. His head grew 7 mm last week which is

phenomenal growth according to CT…off the charts. I am so glad that he

was wearing his helmet when this growth took place. I can already tell a difference

in his head shape. It looks more round. I have to admit, I don’t know

much about Hangar b/c we used CT…there happens to be a CT office 30

minutes from us. At CT, they use a 360 degree camera to take a picture of his

head to make his helmet (no plaster involved). It’s supposed to be

extremely accurate too. This is the latest and greatest technology. I can

also tell you based on other things I have read about BCBS, they are a tough

one to crack to get approval. I also have BCBS and CT is working with them

now, but the approval looks slim. We decided however that we were going to do

it regardless of whether BCBS picked up the cost. That’s what you have

to decide too. Can you look at your son’s head and say ….okay I am

fine with his head shape if BCBS doesn’t pick up the tab? If not, then

you need to be prepared to pay the full price regardless of whether BCBS pays.

That’s what my husband and I had to come to terms with. At 93%, it looks

pretty bad to us so we are not willing to just live with it. I am interested

to see if anyone else out there has any BCBS experience and what that might

be?????

[Guest guest]

My daughter had brachy (96%) and was banded at 5 mo. However she wore her band

until 10 mo old, and got good improvement the entire time. His head probably

won't be " normal " but you can probably get a lot of change, even starting now.

If you're worried about BCBS I would try to pay yourself if at all possible,

that way you can get started sooner. I'm not sure you'll be able to " rush " them.

Also if they deny you will want to file appeals - which will take time.

-christine

sydney, 3.5 yrs, starband grad

>

> My son has severe brachy with a cephalic index of 104% and assymetry of 7mm.

I am obsessed with his head and am terrified that it is too severe to ever look

normal. He is 6 1/2 months old and we have been trying to get him in a helmet

for 5 months! We started repositioning when he was 6 weeks, and he has been

going to physical therapy for tort. since he was 4 months old. We live in

Tulsa, OK and are 1 1/2 hours away from Hanger and 5 hours away from CT in

Dallas. We made the mistake of trying a local O & P that uses starbands, and the

orthotic wasted 6 weeks of our time. Innovative O and P is the name, and the

orthotic didn't submit the proper paperwork to BCBS. He took a plaster mold of

my son's head and sent it off, and then didn't call us back for 3 weeks, only to

finally tell us that the mold was damaged in the mail and he had to do it again.

Obviously, we have moved on and are now working with Hanger in OKC. But, we had

to start with square one and are waiting for the predetermination with BCBS.

>

> In the last 5 months, his brachy has gotten worse. He also has mild plagio on

the left side. Hanger has been great so far and are trying to rush BCBS to make

a decision either way. At this point, I just want him in a helmet ASAP. I

think realistically he will be 7 1/2 months before he is actually in it. I am

so frustrated and scared! Has anyone else seen major improvement in brachy this

late? What if the helmet doesn't work like I am expecting it to? I will move

on to CT next, I guess, but it is so far away and my husband and I both work. I

feel like I have been trying to be calm and patient for 5 months now and he has

just gotten worse.

>

> Casey, mother of

> Maverick 6 1/2 months

>

[Guest guest]

> >

> > My son has severe brachy with a cephalic index of 104% and assymetry of 7mm.

I am obsessed with his head and am terrified that it is too severe to ever look

normal. He is 6 1/2 months old and we have been trying to get him in a helmet

for 5 months! We started repositioning when he was 6 weeks, and he has been

going to physical therapy for tort. since he was 4 months old. We live in

Tulsa, OK and are 1 1/2 hours away from Hanger and 5 hours away from CT in

Dallas. We made the mistake of trying a local O & P that uses starbands, and the

orthotic wasted 6 weeks of our time. Innovative O and P is the name, and the

orthotic didn't submit the proper paperwork to BCBS. He took a plaster mold of

my son's head and sent it off, and then didn't call us back for 3 weeks, only to

finally tell us that the mold was damaged in the mail and he had to do it again.

Obviously, we have moved on and are now working with Hanger in OKC. But, we had

to start with square one and are waiting for the predetermination with BCBS.

> >

> > In the last 5 months, his brachy has gotten worse. He also has mild plagio

on the left side. Hanger has been great so far and are trying to rush BCBS to

make a decision either way. At this point, I just want him in a helmet ASAP. I

think realistically he will be 7 1/2 months before he is actually in it. I am

so frustrated and scared! Has anyone else seen major improvement in brachy this

late? What if the helmet doesn't work like I am expecting it to? I will move

on to CT next, I guess, but it is so far away and my husband and I both work. I

feel like I have been trying to be calm and patient for 5 months now and he has

just gotten worse.

> >

> > Casey, mother of

> > Maverick 6 1/2 months

> >

>

We plan to pay regardless of what BCBS decides, but we have to wait for them to

make a decision either way. Hanger told us that on the slim chance that they

agree to pay, they will pay 80%, but only if we haven't scanned him yet. So I

am trying to rush them, because I just need them to say yes or no.

Casey

[Guest guest]

That number is pretty severe, but i know that you can get significant improvement. Will it be normal? I'm not sure, but the sooner you get started, the more correction you could get. More than likely, you'll need two bands if you are going to have any hope of getting into that "normal" range. Good luck and keep us posted.

Re: Severe brachy and severe frustration

My daughter had brachy (96%) and was banded at 5 mo. However she wore her band until 10 mo old, and got good improvement the entire time. His head probably won't be "normal" but you can probably get a lot of change, even starting now. If you're worried about BCBS I would try to pay yourself if at all possible, that way you can get started sooner. I'm not sure you'll be able to "rush" them. Also if they deny you will want to file appeals - which will take time. -christinesydney, 3.5 yrs, starband grad>> My son has severe brachy with a cephalic index of 104% and assymetry of 7mm. I am obsessed with his head and am terrified that it is too severe to ever look normal. He is 6 1/2 months old and we have been trying to get him in a helmet for 5 months! We started repositioning when he was 6 weeks, and he has been going to physical therapy for tort. since he was 4 months old. We live in Tulsa, OK and are 1 1/2 hours away from Hanger and 5 hours away from CT in Dallas. We made the mistake of trying a local O & P that uses starbands, and the orthotic wasted 6 weeks of our time. Innovative O and P is the name, and the orthotic didn't submit the proper paperwork to BCBS. He took a plaster mold of my son's head and sent it off, and then didn't call us back for 3 weeks, only to finally tell us that the mold was damaged in the mail and he had to do it again. Obviously, we have moved on and are now working with Hanger in OKC. But, we had to start with square one and are waiting for the predetermination with BCBS.> > In the last 5 months, his brachy has gotten worse. He also has mild plagio on the left side. Hanger has been great so far and are trying to rush BCBS to make a decision either way. At this point, I just want him in a helmet ASAP. I think realistically he will be 7 1/2 months before he is actually in it. I am so frustrated and scared! Has anyone else seen major improvement in brachy this late? What if the helmet doesn't work like I am expecting it to? I will move on to CT next, I guess, but it is so far away and my husband and I both work. I feel like I have been trying to be calm and patient for 5 months now and he has just gotten worse.> > Casey, mother of > Maverick 6 1/2 months>