Update on

[Guest guest]

Hi :

Thanks for such a great update on ! WOW Hope you're settling

in nicely.

Let us know when is an official grad.

Debbie Abby's mom

MI

--- In Plagiocephaly , " cathynugz " <cathynugz@y...>

wrote:

> Hi all. I am sorry that I have not been here in a while, been so

> busy with the move to Chicago. We had an appointment today and

> there is good news! 's head is almo0st normal!!! Only one

> more week in the DoC band and he is done!!!!!! I never thought

that

> the band would impove his head as much as it did. That was 3000

> dollars very well spent. Thank you all for your support in this

> very frustrating time.

>

> momma of

[Guest guest]

You must be so excited ! Only one week to go! I know what you mean about money well spent, if it works, you truly cannot put a price on a sweet baby's round head! Cannot wait to see 's official grad post!

Jen- TXTrentyn- 15 mo. DocBand 06/12/03

Update on

Hi all. I am sorry that I have not been here in a while, been so busy with the move to Chicago. We had an appointment today and there is good news! 's head is almo0st normal!!! Only one more week in the DoC band and he is done!!!!!! I never thought that the band would impove his head as much as it did. That was 3000 dollars very well spent. Thank you all for your support in this very frustrating time. momma of For more plagio info

[Guest guest]

- I am so glad to hear that! Way to grow and round !

Donna and Xavier DOCband 7/25

--- In Plagiocephaly , " cathynugz " <cathynugz@y...>

wrote:

> Hi all. I am sorry that I have not been here in a while, been so

> busy with the move to Chicago. We had an appointment today and

> there is good news! 's head is almo0st normal!!! Only one

> more week in the DoC band and he is done!!!!!! I never thought

that

> the band would impove his head as much as it did. That was 3000

> dollars very well spent. Thank you all for your support in this

> very frustrating time.

>

> momma of

[Guest guest]

,

Wow, this chapter has almost been written! Let us know when its time to close the book on this! Woo hoo !

'mom

[Guest guest]

Hi ,

Thanks for the update! Are you seeing correct from the repoing? I'd

love to see pictures. So happy to hear that your ins is covering.

Keep us posted.

> Hello all. I just wanted to tell you all what we have been up to.

I

> am still repoing aggressively and continue to see improvement

slowly

> but surely. In the meantime, I have found a craniofacial pediatric

> specialist in the Bronx NY area and will be making appt. It's a

> small world b/c I found out that a colleague of mine banded his son

> so he is lending support. Also, my coverage pays for all aspects

of

> banding which is wonderful. Any teachers or other NYC employees

will

> be happy to know that GHI/Empire for NYC employees pays for

> everything. Anyone who needs further info and lives in NYC please

> feel free to contact me. As for the rest of you, good luck and God

> bless. Our children are all beautiful and, in comparison to some

of

> the health issues that other parents are confronted with, we should

> be grateful that our children are healthy and that there are

> resources available to us to address this issue which plagues us so.

> lots of hugs for all the

> parents and babies,

> and Baby

[Guest guest]

Hi ,

Thanks for your update. Sounds like good news all around for you guys! I hope you continue seeing improvement w/your great repositioning efforts. Please keep us posted on his progress as well as your appt w/the specialist.

Debbie Abby's mom

[Guest guest]

,

That is wonderful that you are seeing continued improvement through

repositioning. Great work! That will mean less work for the band

when finally gets it. I am so happy to hear about your

insurance coverage and that you have the support of a colleague.

Both will go a long way to reduce the stress of the situation.

Please keep us posted on how the repositioning is coming along!

Christie (Mom to Remy)

> Hello all. I just wanted to tell you all what we have been up

to. I

> am still repoing aggressively and continue to see improvement

slowly

> but surely. In the meantime, I have found a craniofacial

pediatric

> specialist in the Bronx NY area and will be making appt. It's a

> small world b/c I found out that a colleague of mine banded his

son

> so he is lending support. Also, my coverage pays for all aspects

of

> banding which is wonderful. Any teachers or other NYC employees

will

> be happy to know that GHI/Empire for NYC employees pays for

> everything. Anyone who needs further info and lives in NYC please

> feel free to contact me. As for the rest of you, good luck and

God

> bless. Our children are all beautiful and, in comparison to some

of

> the health issues that other parents are confronted with, we

should

> be grateful that our children are healthy and that there are

> resources available to us to address this issue which plagues us

so.

> lots of hugs for all the

> parents and babies,

> and Baby

[Guest guest]

,

Thanks for the great update on ! Wishing you continued success and please share your updates- we would love to hear of another repo success story!

'mom

[Guest guest]

I just want to thank you so much for calling to tell me this

good news yesterday.

I was so upset after you called me about the possible fatal prognosis for

that I found myself crying just thinking about it and just

kept praying he'd be OK. I was so upset that as I told you

yesterday -I developed a headache that wouldn't go away (and I never

get headaches)

And since your call -headache's gone and I feel back to myself. I can't

tell you how incredibly happy I was to have heard this great news

from you yesterday, it was like the cloud lifted. , remember

how I joked that perhaps this is the way they get you to not feel

bad about the pseudo obstruction syndrome? Worked like that for me!

Pseudo obstruction syndrome no longer sounded like such a bad thing

in comparison.

As I told you -I also believe that together we will help you look

for some out of the box explanations and help for the diagnosed

pseudo obstruction syndrome.

Because of his apraxia/motor planning disorder history, and because

of the " unexplained " surges from the EFAs in our kids -perhaps we can find ways

to help this too.

I can't tell you how happy I am once again that sweet little

wasn't given the worst of the two diagnosis. Go give a huge

hug from all of us!!

Happy Holidays to all!

=====

[Guest guest]

That's a great idea. They have an excellent pediatric gastroenterology

department, I almost took my youngest son there when he was a baby.

Peace,

Kathy E.

On Dec 19, 2003, at 8:31 AM, D. Rothweiler wrote:

> I am going for the second opinion at Children's Hospital in Boston on

> Tuesday so I'll let you know how it went.

[Guest guest]

And also, thank God it is not the mitochondrial thing.

Peace,

Kathy E.

[Guest guest]

Hi -- so relieved to know that it is not a progressive disease!

What a weight off your shoulders!

May I ask-- how were they testing for the mitochondrial abnormality?

Was it blood testing? I ask because I know mito disorders can

manifest differently and I've always wondered if Ethan had mito

issues and was curious to know a little bit about the testing.

If you have that information, please post, otherwise, don't worry

about it-- I know you have enough on your plate right now with the

psuedo-obstruction issue! Hugs to ! Very relieved for both of

you!

W

[Guest guest]

I'm so glad to hear it, you can handle anything now!

Jennie

mom to Lindsey - age 7

[Guest guest]

> Hi everyone

> First of all, thank you to everyone for your kind words, prayers &

thoughts.

> It really means a lot to me.

>

> I do have good news for once. The doctors were testing for a

> mytochondrial abnormality which is a progressive disease that would

have

> ultimately destroyed his whole digestive system. I got the test

results

> back yesterday and it came back fine!!!! So we can rule out that

horrible

> thing now and " only " focus on the pseudo obstruction syndrome.

That, in

> itself, is no walk in the park but at least there are things we can

do.

> Compared to the other things they were telling me, that seems easy

now.

> Well, maybe not easy but you know what I mean. Now I can enjoy my

> Christmas.

>

> I am going for the second opinion at Children's Hospital in Boston

on

> Tuesday so I'll let you know how it went.

>

> in NJ

> kdr2@c...

,

I am sorry that you had to go thru all this anyway. Thank you for

letting us all know about the diagnosis for . Try to enjoy xmas

aand New Years.If you get a chance, do something for yourself,you

deserve it! Jeanne

[Guest guest]

As an ex Novartis rep, I know that Zelnorm is a WONDER drug. I detailed tummy

meds as well, and at one time there was rumor that we were to partner with the

Zelnorm sales force, but that never happened.

Best of luck to you, I'll keep you and in my prayers.

~K

[ ] update on

Hi everyone

The holidays have been crazy with family visiting us and us visiting them.

I was just catching up on my posts and wanted to thank everyone again for

your concern and well wishes regarding . This holiday is one that I

will definitely remember.

We went for 's second opinion last Tuesday and the dr. suggested a few

more tests before we do a cecostomy. He did feel that if all the tests come

back normal, the cecostomy would be the correct next step. There is one

medication that he suggested we may want to try (Zelnorm) but he wasn't sure

it would help because it's generally for people with low motility in their

intestines where has no motility at all. I have a call in to his

original gastro. to discuss his thoughts and will see where that takes us.

Thanks again for all the prayers and kind words.

in MA

kdr2@...

[Guest guest]

Cory,

's head is looking great! And woo hoo insurance paid!! Glad to hear everything is going well.

Let us know if the every other day works for his dry scalp. Then you'll be 3 for 3!!

Update on

Well, somebody asked a couple of days ago how we're doing so I thought I'dsend an update today since we saw Bill this morning. His head is showing*major* improvement! One more good growth spurt and we should be done!!:-))))Plus, more good news was that my insurance, Anthem BC/BS of Virginia, paid80% of 's helmet! They had originally paid like it was an out ofnetwork claim. All it took was one phone call to appeal based on the factthat there is no one else within 60 miles that is in network that providesthe same service.Also on the dry scalp thing, Bill told me to try washing his hair everyother day to see if that helps. I'm going to try it, since it willdefinitely make my life a whole lot easier! LOL I will still be cleaningthe helmet every day though. Now instead of washing his hair at the sink,I'll just give him a bath every other day. That'll make it easier to usethe Aveeno oatmeal on his head, too.The pic I've attached was taken last weekend on 1/25, almost two months inthe helmet. I think he looks pretty good now! I'm also uploading it to hisfolder for those who don't get individual email.Stay warm every one!!Cory, mom to (6/5/03)STARband 11/26/03, in OKFor more plagio info

[Guest guest]

Hmmm... well is not letting me upload the photos right now so I'll try

again tomorrow. *sigh*

Cory

[Guest guest]

Cory,

Glad to hear that is rounding out so well! He'll be a grad

before you know it. YAH for your insurance coming through for you.

Please post 's pic in his folder in the photos section, I'd love

to see it. Thanks for the update.

--- In Plagiocephaly , " Cory Schwemley " <cory6@c...>

wrote:

> Well, somebody asked a couple of days ago how we're doing so I

thought I'd

> send an update today since we saw Bill this morning. His head is

showing

> *major* improvement! One more good growth spurt and we should be

done!!

> :-))))

>

> Plus, more good news was that my insurance, Anthem BC/BS of

Virginia, paid

> 80% of 's helmet! They had originally paid like it was an out

of

> network claim. All it took was one phone call to appeal based on

the fact

> that there is no one else within 60 miles that is in network that

provides

> the same service.

>

> Also on the dry scalp thing, Bill told me to try washing his hair

every

> other day to see if that helps. I'm going to try it, since it will

> definitely make my life a whole lot easier! LOL I will still be

cleaning

> the helmet every day though. Now instead of washing his hair at

the sink,

> I'll just give him a bath every other day. That'll make it easier

to use

> the Aveeno oatmeal on his head, too.

>

> The pic I've attached was taken last weekend on 1/25, almost two

months in

> the helmet. I think he looks pretty good now! I'm also uploading

it to his

> folder for those who don't get individual email.

>

> Stay warm every one!!

> Cory, mom to (6/5/03)

> STARband 11/26/03, in OK

[Guest guest]

Cory,

I am so, so happy to hear about 's improvement! I can remember

how you were seeing great improvement with repo, and with some

sadness, moved on to the band... you made an excellent decision!

It sounds like doesn't have too much longer in his band; I'm

crossing my fingers for that growth spurt!

What icing on the cake that BCBS is paying 80%... those insurance

appeals sound so stressful, I'm relieved you all didn't have to go

through that.

I hope 's scalp situation improves with your new regimen.

I have enjoyed following 's journey from since you first joined

the group; congratulations on his wonderful improvement.

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " Cory Schwemley " <cory6@c...>

wrote:

> Well, somebody asked a couple of days ago how we're doing so I

thought I'd

> send an update today since we saw Bill this morning. His head is

showing

> *major* improvement! One more good growth spurt and we should be

done!!

> :-))))

>

> Plus, more good news was that my insurance, Anthem BC/BS of

Virginia, paid

> 80% of 's helmet! They had originally paid like it was an out

of

> network claim. All it took was one phone call to appeal based on

the fact

> that there is no one else within 60 miles that is in network that

provides

> the same service.

>

> Also on the dry scalp thing, Bill told me to try washing his hair

every

> other day to see if that helps. I'm going to try it, since it will

> definitely make my life a whole lot easier! LOL I will still be

cleaning

> the helmet every day though. Now instead of washing his hair at

the sink,

> I'll just give him a bath every other day. That'll make it easier

to use

> the Aveeno oatmeal on his head, too.

>

> The pic I've attached was taken last weekend on 1/25, almost two

months in

> the helmet. I think he looks pretty good now! I'm also uploading

it to his

> folder for those who don't get individual email.

>

> Stay warm every one!!

> Cory, mom to (6/5/03)

> STARband 11/26/03, in OK

[Guest guest]

Cory,

He looks great!!! I am so happy insurance is coming through too. We will be reading about being an official graduate in no time at all. Please keep us posted.

Angie and Jenna

Update on

Well, somebody asked a couple of days ago how we're doing so I thought I'dsend an update today since we saw Bill this morning. His head is showing*major* improvement! One more good growth spurt and we should be done!!:-))))Plus, more good news was that my insurance, Anthem BC/BS of Virginia, paid80% of 's helmet! They had originally paid like it was an out ofnetwork claim. All it took was one phone call to appeal based on the factthat there is no one else within 60 miles that is in network that providesthe same service.Also on the dry scalp thing, Bill told me to try washing his hair everyother day to see if that helps. I'm going to try it, since it willdefinitely make my life a whole lot easier! LOL I will still be cleaningthe helmet every day though. Now instead of washing his hair at the sink,I'll just give him a bath every other day. That'll make it easier to usethe Aveeno oatmeal on his head, too.The pic I've attached was taken last weekend on 1/25, almost two months inthe helmet. I think he looks pretty good now! I'm also uploading it to hisfolder for those who don't get individual email.Stay warm every one!!Cory, mom to (6/5/03)STARband 11/26/03, in OKFor more plagio info

[Guest guest]

,

If the red spot that is getting isn't fading within the hour you

need to call CT b/c that means his band needs to be adjusted. I hope

starts sleeping better for you.

> Congratulations, on getting reimbursed!!!! We received our

denial letter from BCBS in the mail on Friday. They said it

was " cosmetic " . I was so disappointed. Of course, deep down, I knew

they would deny it, but I was so hoping that they would offer a

pleasant surprise. Well, the battle begins.

>

> As for , he is doing ok in the band. He does not sleep as well

as he normally does, but I figure that will come in time and then, we

have this persistent little red spot that just will not quite fade

like I think it should. We're keeping our eye on that one.

>

> We went out this morning with in the band. I was really

nervous and not really sure what to expect, but everything was fine.

We even had 3 or 4 people come up to us and tell us about their

children or grandchildren's experiences in the band. I'm definetly

feeling more at ease.

>

> More later,

> , Mom to (5 months) in Texas

> DocBand 1/29/04

[Guest guest]

Cory,

I am so glad to hear that is doing well. It certainly sounds

like things are moving in the right direction for you.

Hope to hear graduation news from you, in the relatively near future.

- mom to Aidan

STARband 08/26/03 12/19/03

GR Mi

--- In Plagiocephaly , " Cory Schwemley " <cory6@c...>

wrote:

> Well, somebody asked a couple of days ago how we're doing so I

thought I'd

> send an update today since we saw Bill this morning. His head is

showing

> *major* improvement! One more good growth spurt and we should be

done!!

> :-))))

>

> Plus, more good news was that my insurance, Anthem BC/BS of

Virginia, paid

> 80% of 's helmet! They had originally paid like it was an out

of

> network claim. All it took was one phone call to appeal based on

the fact

> that there is no one else within 60 miles that is in network that

provides

> the same service.

>

> Also on the dry scalp thing, Bill told me to try washing his hair

every

> other day to see if that helps. I'm going to try it, since it will

> definitely make my life a whole lot easier! LOL I will still be

cleaning

> the helmet every day though. Now instead of washing his hair at

the sink,

> I'll just give him a bath every other day. That'll make it easier

to use

> the Aveeno oatmeal on his head, too.

>

> The pic I've attached was taken last weekend on 1/25, almost two

months in

> the helmet. I think he looks pretty good now! I'm also uploading

it to his

> folder for those who don't get individual email.

>

> Stay warm every one!!

> Cory, mom to (6/5/03)

> STARband 11/26/03, in OK

[Guest guest]

Hi ,

Thats too bad about your insurance. Good luck with your fight!

Hannah had trouble sleeping in her band at first, but she was back

to her usual within a week or so. If he has a red spot that isn't

fading within an hour I'd definitely call for an adjustment though.

Maybe it's bothering him and contributing to his trouble sleeping.

, mom to Hannah, DOCgrad

Cape Cod, Ma

> Congratulations, on getting reimbursed!!!! We received our

denial letter from BCBS in the mail on Friday. They said it

was " cosmetic " . I was so disappointed. Of course, deep down, I

knew they would deny it, but I was so hoping that they would offer a

pleasant surprise. Well, the battle begins.

>

> As for , he is doing ok in the band. He does not sleep as

well as he normally does, but I figure that will come in time and

then, we have this persistent little red spot that just will not

quite fade like I think it should. We're keeping our eye on that

one.

>

> We went out this morning with in the band. I was really

nervous and not really sure what to expect, but everything was

fine. We even had 3 or 4 people come up to us and tell us about

their children or grandchildren's experiences in the band. I'm

definetly feeling more at ease.

>

> More later,

> , Mom to (5 months) in Texas

> DocBand 1/29/04

[Guest guest]

Hello all,

I am kinda new here. I've read a lot over the last few weeks and have asked a few questions and received some great help so far. has been in his STARband for almost 3 weeks -- he started at 14mm. He had a rough start getting used to it, but now it has become part of life. I can't believe how easily it has become part of him -- he looks strange when he doesn't have it on for his hour at nite! I have already noticed some change to his head -- he had a bulge in the back that is almost flat now.

Just wanted to keep you all updated and thank you again for the help you have given me so far.

, 7mos., STARband 1/29/04

[Guest guest]

HI ,

That's great news that is doing so well....I know what you mean about them looking strange without it after a while! It's funny how much the bands becomes a part of them and how cute they look in them!

and /DOCgrad 10-7-03 to 2-13-04/PAcprete26@... wrote:

Hello all,I am kinda new here. I've read a lot over the last few weeks and have asked a few questions and received some great help so far. has been in his STARband for almost 3 weeks -- he started at 14mm. He had a rough start getting used to it, but now it has become part of life. I can't believe how easily it has become part of him -- he looks strange when he doesn't have it on for his hour at nite! I have already noticed some change to his head -- he had a bulge in the back that is almost flat now. Just wanted to keep you all updated and thank you again for the help you have given me so far., 7mos., STARband 1/29/04 For more plagio info