RE: Re: Update on Alyssa/AZ to DIANE

[Guest guest]

HI Diane! i just wanted to send you an FYI that i have emailed Oprah about

this matter about 2 weeks ago. We were just denied by insurance yesterday

(going to appeal) and once i get my official letter of denial from them i'm

going to write her again. Maybe if we all hound her email we could end up

with a show about plagio! I've also contacted other shows (GMA, Montel, Dr.

Phil email didn't go through) a local radio show, and 1 parenting magazine.

And that's only so far. I plan on writing more, just hard finding the time!

I will make sure to post if i end up hearing from anyone.

>From: " alex00alys03 " <alex00alys03@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Update on Alyssa/AZ to

>Date: Sat, 16 Oct 2004 00:20:06 -0000

>

>

>Hi -

>Thank you so much for responding. It sounds like you are in a very

>similar situation as far as having to do so much research and then

>be the one to tell the doctor instead of the other way around. I

>had to do that too.

>We are also on single income for the same reasons, it would not be

>cost effective to pay for daycare. Plus, I have had to take Alyssa

>to so many appointments - birth to 3, physical therapy, feeding

>evaluation, etc. that there would not have been a way that I would

>have been able to work.

>Before Alyssa got the DOC band, I read that some babies do need more

>than one band but I didn't want to mention it back then because I

>was afraid he wouldn't let me get the first one if he thought that

>there would need to be a second. He told me I can get a second band

>but that he isn't paying for it.

>My mom has mentioned helping out but my dad just left her after 38

>years of marriage. He packed his stuff, closed her credit cards,

>cleaned out the savings and left just like that without warning.

>She has one credit card and offered to use that but it doesn't have

>a large credit line and I am afraid that she might need to use the

>card since she has been put in this situation. She has no money for

>attorney fees if a divorce is in the future.

>Insurance doesn't cover the cost of the band because it is an out-of-

>state provider/out of network. The biggest expense has been the

>travel. I can check into Angel Flights but Alyssa has a hard time

>during the 2.5 hour direct flight and I am worried about how she

>would do for so many hours on a small plane.

>Alyssa's dad works rotating 12 hour shifts so it would be really

>hard for me to get a job that would work around his unpredictable

>schedule. My mom has had to go back to work so she can't babysit

>for us.

>We took out a home equity loan to consolidate credit card debt and

>lower the monthly payments. We did that awhile ago and they

>wouldn't loan any more that could have been used for the second

>band. He refuses to use a credit card because he paid off the high

>interest ones and doesn't want to put the cost of the band/travel on

>a credit card.

>So, in reality, I don't think a second band will be possible. I am

>really thankful that I got to do the first one though. I am happy

>with the changes I have seen but I do see that future correction

>would be beneficial.

>I will keep trying to think of ways to make it happen though : ) I

>am not giving up yet!

>It is great that your daughter is getting fitted for the band and

>that you were able to borrow the money. I am sure you will see

>great changes. Not all children need more than one band. Alyssa's

>head growth went from the 25-100 percentile within 7 months so I

>knew that the growth would be slowing down when she got the band at

>9 months old. I don't think that age is too old, but in her case

>she should have had the helmet on at 4 months of age when we were

>told by the craniofacial dept. at Children's Hospital to " wait

>another 4 months and see. " The lady we see at Cranial Tech was

>shocked that the person we saw at Childrens didn't put Alyssa in a

>helmet back then, especially because the plagio happened in utero.

>I wish Oprah would do a show on it. There are so many people that

>are going through this and even more who have never even heard of it

>before. And then there are the children who don't get any help from

>the doctors and will have to deal with the flat spot and facial

>asymmetry. It is definitely something that needs to be talked about

>and I think Oprah would be the perfect person to reach so many

>people.

>Thanks again for your support and I wish the best for you and your

>family.

>

>Diane

>Alyssa DOC band 7/20/04

>WA state

>

>

>

> > >

> > > Alyssa has been in her DOC band for 3 months now. I have been

>on

> > 9

> > > round trip flights with her so far.

> > > When she first got the DOC band she showed improvement after 12

> > > days. Unfortunately, her growth really slowed down and she

> > dropped

> > > from the 100th percentile to the 95th percentile for head

>growth.

> > > I am really glad that I got the DOC band. I would definitely do

> > it

> > > over again and am happy with the improvement we have seen. The

> > > front of her forehead filled in and I can see major improvement

> > with

> > > the lumps/bumps and some improvement with the rounding in the

> > back.

> > > Her left eye looks much better now, it matches the size of her

> > right

> > > eye more.

> > > Her right cheek is still bigger than the left and it still

>really

> > > shows in the mirror and in photos. The back did not fill in as

> > well

> > > as I had hoped that it would but that is because of the slow

> > > growth. The left side of her face is still " C " shaped but it

>has

> > > improved.

> > > The plan is for my next visit to either do the exit cast and

>then

> > > remove the band in 2-3 weeks or to make another trip after the

> > next

> > > one and do the exit cast then. I really want to keep her in the

> > > band as long as possible but they want to wait and see how her

> > > growth is.

> > > The situation is a little bit bittersweet. I am happy that

>there

> > > has been improvement but sad because I missed the best

>opportunity

> > > because I missed the growth spurt. Alyssa was 9 months old when

> > the

> > > band was put on and now she is almost a year old. There were

> > times

> > > when I didn't even think I needed to fly down for the appt.

> > because

> > > there was no noticeable growth.

> > > I asked about a second band and was told that Alyssa could

>benefit

> > > from one. The " C " shape would fill in more as would the back of

> > her

> > > head hopefully.

> > > Alyssa's dad refuses to get a second band. You should have seen

> > the

> > > look on his face when I brought up the issue of a second band.

> > > It has been a financial struggle to pay for the first

>band/travel

> > > expense. I have been dreading every flight because it has been

> > very

> > > difficult travelling with an infant alone down and back in the

> > same

> > > day, but I would be willing to make another 10 flights down and

>go

> > > bankrupt if that is what it took.

> > > I don't know what to do about the facial asymmetry. That was

>the

> > > most important thing to me that I hoped the band would fix. It

> > has

> > > improved, but the difference in cheek size really bothers me.

>How

> > > does that get resolved?

> > > Are there any alternative treatments - cranial sachral (haven't

> > > checked into this and I don't know much about it) or ??

> > > I know that I have done the best that I can so far but it feels

> > like

> > > I am at the half way point and seems sad not to go for another

> > band

> > > and try to fix the issues entirely if possible.

> > > I am thinking extreme here, like moving to AZ temporarily. I

>have

> > > no idea how I could pull that one off, lol. If I did that, I

> > would

> > > probably end up as a single parent!

> > > It is so hard to know how things will change as the child ages,

>if

> > > facial asymmetry will improve or stay the same. I started out

> > > getting the band because I never wanted to have any

> > > regrets. I don't. The band has been a positive experience and

>I

> > am

> > > so happy that I did it. But, now I am concerned that I will

> > always

> > > wonder " what if " I had gotten the second band and I am pretty

>sure

> > > that I will.

> > > I am not sure what to do from here.

> > > I will try to post pictures later today.

> > > I am sorry that I haven't participated more on this board. We

>had

> > a

> > > family crisis that was difficult to go through.

> > > Thanks,

> > > Diane

> > > Alyssa

> > > DOC band 7/20/04

> > > WA state

>

>

>

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