new to the group - Pittsburgh area - older baby - having problems!

[Guest guest]

below is a message I placed on the first group I joined. I was referred to

this group, too, because my son is older & someone said there is a moderator

here with an older baby?....

Today didnt go well! I talked to our cleft/craniofacial surgeon, who I was sure

would be on board for a band, but he said 16 months is too old for any change to

occur. He said the sutures have closed, change would be minimal, and banding is

a big commitment, its going to be hot in the summer, etc.

But, he said if I wanted to persue it, he would write the Rx and the letter for

my insurance company. And then he referred me to Union orthotics in Pittsburgh.

I called there (they to Starbands) but they won't take babies older then 10

mths. So I called the next closest Starband, in Toledo, OH, and was told the

same thing - he is too old for results, a CT scan would be needed, insurance

companies won't pay over 12 months of age, etc. etc.

So, my last choice (which is really my first choice, but they are really far

away) is Cranio Tech in ndale VA. They are 5 hours away. I was hoping that

maybe we could get something closer, just because my son is complicated to

travel with (he has a trach and g-tube) But, I placed a call to them to see if

they would help him. (He has a trach.....can trach kids even be banded?) the

lady that answered said she would have a clinician call me back.

I just dont know what to do. I feel like I've failed him!! I want to do all I

can to help him, but I'm feeling like my hands are tied here!!

Has anyone run into these problems with an older baby?.....thanks for listening.

Here is my intro from the other group:

Hi everyone,

I just joined this group for my son, who is now 16 months old. He is a patient

at Children's Hospital in Pittsburgh. He was born with several birth defects -

cleft lip & palate, bilateral coloboma

of his optic nerve & retina, dandy walker variant, and a heart defect. He had a

g-tube & trach surgery when he was a month old.

He spent a good bit of his first year in the hospital.

In Feb. 2007, when he was 2 months old, we were told he had torticollis, plus a

flat spot on the side of his head he favored. We used positioning to work that

out. Our cleft surgeon told us we needed to work it out to prevent his face from

changing.

He spent a lot of the summer in the hospital again, and developed a flat spot on

the back of his head this time. The surgeon told us he was not worried about a

flat spot on the back of the head, because his hair would grow in over it.

My son is developmentally delayed, and is just learning to sit unassisted. His

hair isn't growing in well over the flat spot, because he still sits against the

back of his head so much for support. (he's making progress though, but right

now, when he eats, he sits in a bouncy chair - so the back of his head is still

against something)

Has anyone had success in starting this late?

[Guest guest]

Hi,

I am the one who referred you to this group and I know that will respond to you. I just wanted to add that Maysa, my daughter goes to CT in ndale, VA and they are awesome. We see Amber and we've also seen Gen and Sheryl once.

I do not know what trach is (sorry) but I certainly hope that they will agree to treat your son regardless. It is a long drive from Pittsburgh to ndale (we were there this weekend) but you have to do what you have to do while you can.

Good luck and keep us posted.

Leila,

Maysa, 15 months old, 5 weeks left in DOC band 2

www.mymaysa.wordpress.com

From: michaelann32 <michaelann32@...>Subject: new to the group - Pittsburgh area - older baby - having problems!Plagiocephaly Date: Monday, April 20, 2009, 3:42 PM

below is a message I placed on the first group I joined. I was referred to this group, too, because my son is older & someone said there is a moderator here with an older baby?....Today didnt go well! I talked to our cleft/craniofacial surgeon, who I was sure would be on board for a band, but he said 16 months is too old for any change to occur. He said the sutures have closed, change would be minimal, and banding is a big commitment, its going to be hot in the summer, etc.But, he said if I wanted to persue it, he would write the Rx and the letter for my insurance company. And then he referred me to Union orthotics in Pittsburgh.I called there (they to Starbands) but they won't take babies older then 10 mths. So I called the next closest Starband, in Toledo, OH, and was told the same thing - he is too old for results, a CT scan would be needed, insurance companies won't pay over 12 months of age, etc.

etc.So, my last choice (which is really my first choice, but they are really far away) is Cranio Tech in ndale VA. They are 5 hours away. I was hoping that maybe we could get something closer, just because my son is complicated to travel with (he has a trach and g-tube) But, I placed a call to them to see if they would help him. (He has a trach.....can trach kids even be banded?) the lady that answered said she would have a clinician call me back.I just dont know what to do. I feel like I've failed him!! I want to do all I can to help him, but I'm feeling like my hands are tied here!!Has anyone run into these problems with an older baby?.....thanks for listening.Here is my intro from the other group:Hi everyone,I just joined this group for my son, who is now 16 months old. He is a patient at Children's Hospital in Pittsburgh. He was born with several birth defects - cleft lip & palate, bilateral

colobomaof his optic nerve & retina, dandy walker variant, and a heart defect. He had a g-tube & trach surgery when he was a month old.He spent a good bit of his first year in the hospital.In Feb. 2007, when he was 2 months old, we were told he had torticollis, plus a flat spot on the side of his head he favored. We used positioning to work that out. Our cleft surgeon told us we needed to work it out to prevent his face fromchanging.He spent a lot of the summer in the hospital again, and developed a flat spot on the back of his head this time. The surgeon told us he was not worried about a flat spot on the back of the head, because his hair would grow in over it.My son is developmentally delayed, and is just learning to sit unassisted. His hair isn't growing in well over the flat spot, because he still sits against the back of his head so much for support. (he's making progress though, but rightnow,

when he eats, he sits in a bouncy chair - so the back of his head is stillagainst something) :(Has anyone had success in starting this late?

[Guest guest]

Hi! I am the moderator whose son was 17 months old when we started band

treatment. And I'm from Pittsburgh! So I'm happy to help the best I can....

I'm so sorry to hear of all the medical issues you've dealt with so far. Your

son sounds like a real trooper. I guess my only concern about starting band

treatment with him and his medical issues, would be is he growing at a good

rate? Because if he is a slow grower, that would really be the only thing that

would keep the band from working to his highest potential. Having said that, I'd

still try anyway! I know what it feels like to want to do everthing you possible

can. I was desperate to help my son and did have to break down in tears in front

of the plastic surgeon to get him to write a script for me. I then visited the

STARBand ortho in the same hospital and they were willing to try banding him,

but they couldn't say for sure whether he would wear it beyond 18 months old

(one month from the time he would get it), because the protocol for that band

only allows it to be worn to that age. I then travelled to Charlotte (almost 3

hours each way, so not as far as you would have to go), and Cranial Tech had a

very positive attitude about the band doing something good for him (just

couldn't confirm how much) and guaranteed that he would be able to wear it for

the full 16 weeks allowed. He ended up wearing two bands for 32 weeks and

graduated 2 weeks after his second birthday, with REALLY good results. His

pictures are in the Our Plagio Babies - J folder under Jake W.

So I think it's definitely worth the trip for a free evaluation at the CT in

ndale. I think they'll be able to give you a realistic outlook on the

situation and they do not require a CT scan before beginning treatment. You can

also ask them over the phone about the insurance part of it, and they can let

you know if you have the proper insurance coverage. Assuming he is a

decent/average grower, a DOCBand will help him. (As long as they are able to

treat him with his trach tube, I don't see why they wouldn't, I believe they may

have in the past if I remember correctly).

Also, it sounds like you'd be a perfect candidate for Angel Flights, small

private planes/pilots that fly people like yourself to medical appointments far

away. Two members of this board have used them recently with great success, so I

would definitely look into that avenue.

Best of luck!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> below is a message I placed on the first group I joined. I was referred

to this group, too, because my son is older & someone said there is a moderator

here with an older baby?....

>

>

> Today didnt go well! I talked to our cleft/craniofacial surgeon, who I was

sure would be on board for a band, but he said 16 months is too old for any

change to occur. He said the sutures have closed, change would be minimal, and

banding is a big commitment, its going to be hot in the summer, etc.

>

> But, he said if I wanted to persue it, he would write the Rx and the letter

for my insurance company. And then he referred me to Union orthotics in

Pittsburgh.

>

> I called there (they to Starbands) but they won't take babies older then 10

mths. So I called the next closest Starband, in Toledo, OH, and was told the

same thing - he is too old for results, a CT scan would be needed, insurance

companies won't pay over 12 months of age, etc. etc.

>

> So, my last choice (which is really my first choice, but they are really far

away) is Cranio Tech in ndale VA. They are 5 hours away. I was hoping that

maybe we could get something closer, just because my son is complicated to

travel with (he has a trach and g-tube) But, I placed a call to them to see if

they would help him. (He has a trach.....can trach kids even be banded?) the

lady that answered said she would have a clinician call me back.

>

> I just dont know what to do. I feel like I've failed him!! I want to do all I

can to help him, but I'm feeling like my hands are tied here!!

>

> Has anyone run into these problems with an older baby?.....thanks for

listening.

>

>

>

> Here is my intro from the other group:

>

>

>

>

>

>

> Hi everyone,

>

> I just joined this group for my son, who is now 16 months old. He is a patient

at Children's Hospital in Pittsburgh. He was born with several birth defects -

cleft lip & palate, bilateral coloboma

> of his optic nerve & retina, dandy walker variant, and a heart defect. He had

a g-tube & trach surgery when he was a month old.

>

> He spent a good bit of his first year in the hospital.

>

> In Feb. 2007, when he was 2 months old, we were told he had torticollis, plus

a flat spot on the side of his head he favored. We used positioning to work that

out. Our cleft surgeon told us we needed to work it out to prevent his face from

> changing.

>

> He spent a lot of the summer in the hospital again, and developed a flat spot

on the back of his head this time. The surgeon told us he was not worried about

a flat spot on the back of the head, because his hair would grow in over it.

>

> My son is developmentally delayed, and is just learning to sit unassisted. His

hair isn't growing in well over the flat spot, because he still sits against the

back of his head so much for support. (he's making progress though, but right

> now, when he eats, he sits in a bouncy chair - so the back of his head is

still

> against something)

>

> Has anyone had success in starting this late?

>