Will update-(insurance, x-rays, CT in Paramus NJ)

[Guest guest]

I called CT this morning to let them know that Will had a small skin

breakdown on his forehead and that for the first time in 5 weeks, he

was without the band for more than an hour. He didn't sleep in it,

and it's a bit scabby today.

At any rate, after talking with Sherri, our Orthotist about Will's

forehead (posted on this previously) not " popping " , etc., we came to

the determination that my little man has outgrown his helmet. Five

short weeks later, and it was almost completely shaven in certain

areas. I had just put new stickers on it and it's making me cry

seeing it sitting there. I think, mainly, because even though we had

decided to go with a 2nd band already, she is now saying that his

forehead may never " pop " . He has serious torticollis (which is much

better, actually) and it seems as if she said that torticollis can

cause this to happen. It also seems that sometimes insurance

companies (ours finally paid 80%) don't cover 2nd bands b/c a

certain time limit is involved-we'll have to wait and see (again).

So far we've seen a lot of progress on his flat spot, but I would

almost have rather had it be in the front since his left eye is a

bit smaller, left cheek not as chubby, etc. We have to have more x-

rays done of his skull to see if his plates are prematurely fusing

(although I thought we'd covered this already). Is this called

Stenosis?

Unfortunately, it turns out that Sherri is also leaving CT.

Kellianne, who cast Will (took two times) and who I didn't think was

very good, is no longer working there, which is a good thing, I'm

thinking.

I used to have so much hope for his progress, and now I'm worried

about regression (it will be at least two weeks before he's in a new

band) and with the tort it's hard to keep him sleeping in

the " contraptions " i've configured. Of course there is constant

repo'ing.

Thanks for listening!

leigh

Will 4/11/04

[Guest guest]

Leigh,

Hang in there! It's miserable to think that poor Will has to go

through a third casting, but if there is a chance that the second

band will help pop that forehead, it's worth it. You are doing every

thing that you can for your son and that's what matters most!

Keep on smiling and know that we are thinking about you!

Jodie

Jack's mom - 10/14/03

> I called CT this morning to let them know that Will had a small

skin

> breakdown on his forehead and that for the first time in 5 weeks,

he

> was without the band for more than an hour. He didn't sleep in it,

> and it's a bit scabby today.

>

> At any rate, after talking with Sherri, our Orthotist about Will's

> forehead (posted on this previously) not " popping " , etc., we came

to

> the determination that my little man has outgrown his helmet. Five

> short weeks later, and it was almost completely shaven in certain

> areas. I had just put new stickers on it and it's making me cry

> seeing it sitting there. I think, mainly, because even though we

had

> decided to go with a 2nd band already, she is now saying that his

> forehead may never " pop " . He has serious torticollis (which is much

> better, actually) and it seems as if she said that torticollis can

> cause this to happen. It also seems that sometimes insurance

> companies (ours finally paid 80%) don't cover 2nd bands b/c a

> certain time limit is involved-we'll have to wait and see (again).

>

> So far we've seen a lot of progress on his flat spot, but I would

> almost have rather had it be in the front since his left eye is a

> bit smaller, left cheek not as chubby, etc. We have to have more x-

> rays done of his skull to see if his plates are prematurely fusing

> (although I thought we'd covered this already). Is this called

> Stenosis?

>

> Unfortunately, it turns out that Sherri is also leaving CT.

> Kellianne, who cast Will (took two times) and who I didn't think

was

> very good, is no longer working there, which is a good thing, I'm

> thinking.

>

> I used to have so much hope for his progress, and now I'm worried

> about regression (it will be at least two weeks before he's in a

new

> band) and with the tort it's hard to keep him sleeping in

> the " contraptions " i've configured. Of course there is constant

> repo'ing.

>

> Thanks for listening!

>

> leigh

> Will 4/11/04

[Guest guest]

Hi Leigh

I am fairly new to all of this but I can hardly believe that a band

could only last 5 weeks! I know it depends on the age of the child

but jeesh, can't they make them a little bigger and the " innards " a

little thicker? I mean for $3000 come on peple. OK, I'm not really

helping. I'm so sorry you are going thru this. I'm glad ins. pd but

I think they should get you a 2nd band for the price of 1! I think

regression is really really rare but I understand your concern. You

most likely have nothing to worry about and you sound like you will

take great care to prevent it. GL and please keep us posted.

Sue

Colin F. 11 mos., brachy

STARband 6/29

Buffalo, NY

> I called CT this morning to let them know that Will had a small

skin

> breakdown on his forehead and that for the first time in 5 weeks,

he

> was without the band for more than an hour. He didn't sleep in it,

> and it's a bit scabby today.

>

> At any rate, after talking with Sherri, our Orthotist about Will's

> forehead (posted on this previously) not " popping " , etc., we came

to

> the determination that my little man has outgrown his helmet. Five

> short weeks later, and it was almost completely shaven in certain

> areas. I had just put new stickers on it and it's making me cry

> seeing it sitting there. I think, mainly, because even though we

had

> decided to go with a 2nd band already, she is now saying that his

> forehead may never " pop " . He has serious torticollis (which is much

> better, actually) and it seems as if she said that torticollis can

> cause this to happen. It also seems that sometimes insurance

> companies (ours finally paid 80%) don't cover 2nd bands b/c a

> certain time limit is involved-we'll have to wait and see (again).

>

> So far we've seen a lot of progress on his flat spot, but I would

> almost have rather had it be in the front since his left eye is a

> bit smaller, left cheek not as chubby, etc. We have to have more x-

> rays done of his skull to see if his plates are prematurely fusing

> (although I thought we'd covered this already). Is this called

> Stenosis?

>

> Unfortunately, it turns out that Sherri is also leaving CT.

> Kellianne, who cast Will (took two times) and who I didn't think

was

> very good, is no longer working there, which is a good thing, I'm

> thinking.

>

> I used to have so much hope for his progress, and now I'm worried

> about regression (it will be at least two weeks before he's in a

new

> band) and with the tort it's hard to keep him sleeping in

> the " contraptions " i've configured. Of course there is constant

> repo'ing.

>

> Thanks for listening!

>

> leigh

> Will 4/11/04

[Guest guest]

Leigh,

Don't give up hope! I didn't think my dd ears would ever realign, but

they did. She also had facial asymmetry and that too was corrected.

She wasn't banded until she was almost 11.5 months old. I was told to

only expect around 50% correction if even that. She ended up with

over 90% correction. You never know his forehead may round out. Enjoy

his naked little head for the time being.

Yes, premature fusion of one or more sutures is called

craniosynostosis. Please let us know how you make out with his x-rays.

> I called CT this morning to let them know that Will had a small

skin

> breakdown on his forehead and that for the first time in 5 weeks,

he

> was without the band for more than an hour. He didn't sleep in it,

> and it's a bit scabby today.

>

> At any rate, after talking with Sherri, our Orthotist about Will's

> forehead (posted on this previously) not " popping " , etc., we came

to

> the determination that my little man has outgrown his helmet. Five

> short weeks later, and it was almost completely shaven in certain

> areas. I had just put new stickers on it and it's making me cry

> seeing it sitting there. I think, mainly, because even though we

had

> decided to go with a 2nd band already, she is now saying that his

> forehead may never " pop " . He has serious torticollis (which is much

> better, actually) and it seems as if she said that torticollis can

> cause this to happen. It also seems that sometimes insurance

> companies (ours finally paid 80%) don't cover 2nd bands b/c a

> certain time limit is involved-we'll have to wait and see (again).

>

> So far we've seen a lot of progress on his flat spot, but I would

> almost have rather had it be in the front since his left eye is a

> bit smaller, left cheek not as chubby, etc. We have to have more x-

> rays done of his skull to see if his plates are prematurely fusing

> (although I thought we'd covered this already). Is this called

> Stenosis?

>

> Unfortunately, it turns out that Sherri is also leaving CT.

> Kellianne, who cast Will (took two times) and who I didn't think

was

> very good, is no longer working there, which is a good thing, I'm

> thinking.

>

> I used to have so much hope for his progress, and now I'm worried

> about regression (it will be at least two weeks before he's in a

new

> band) and with the tort it's hard to keep him sleeping in

> the " contraptions " i've configured. Of course there is constant

> repo'ing.

>

> Thanks for listening!

>

> leigh

> Will 4/11/04

[Guest guest]

Leigh,

Sorry to hear about the skin breakdown. The 2 week open window between bands will help that. na grew out of her first band in 29 days!! It sucks - I know exactly how you feel. We were out of her band for a little over 2 weeks (there was a problem at the plant and the Thanksgiving holiday). Now if insurance covered the first then they should cover the second band as continuation of treatment. You will need to get a new RX and letter of medical necessity. My ped did these for us with no problems. In fact his second letter was a ton better than the first (practice makes perfect). Does Will still meet the assymetry measurment requirements of your insurance?

Tort can cause lots of facial issues. The closer you are to resolving his tort the better the banding results (my own opinion besed on conversations with our ortho). na had tort too, I'm sure that's why her ears were so stubborn.

We did go back to repo for the 2 weeks she was bandless. Thankfully she was much more mobile and sitting up.

mom to na

DOC Grad

SC leighmommy <leighstulack@...> wrote:

I called CT this morning to let them know that Will had a small skin breakdown on his forehead and that for the first time in 5 weeks, he was without the band for more than an hour. He didn't sleep in it, and it's a bit scabby today. At any rate, after talking with Sherri, our Orthotist about Will's forehead (posted on this previously) not "popping", etc., we came to the determination that my little man has outgrown his helmet. Five short weeks later, and it was almost completely shaven in certain areas. I had just put new stickers on it and it's making me cry seeing it sitting there. I think, mainly, because even though we had decided to go with a 2nd band already, she is now saying that his forehead may never "pop". He has serious torticollis (which is much better, actually) and it seems as if she said that torticollis can

cause this to happen. It also seems that sometimes insurance companies (ours finally paid 80%) don't cover 2nd bands b/c a certain time limit is involved-we'll have to wait and see (again).So far we've seen a lot of progress on his flat spot, but I would almost have rather had it be in the front since his left eye is a bit smaller, left cheek not as chubby, etc. We have to have more x-rays done of his skull to see if his plates are prematurely fusing (although I thought we'd covered this already). Is this called Stenosis?Unfortunately, it turns out that Sherri is also leaving CT. Kellianne, who cast Will (took two times) and who I didn't think was very good, is no longer working there, which is a good thing, I'm thinking. I used to have so much hope for his progress, and now I'm worried about regression (it will be at least two weeks before he's in a new band) and with the tort it's hard to keep him sleeping

in the "contraptions" i've configured. Of course there is constant repo'ing.Thanks for listening!leighWill 4/11/04For more plagio info