Re: Upset mom here - Gail

[Guest guest]

Hi Gail. My son was in an HMO who wouldn't treat my son. He was

nearly 18 mos by the time I managed to get him treatment, so he was

too old for anything BUT a DOC Band. Darcy at Children's told me

there was no way they would band him because of his age, so I didn't

even bother waiting for an appt with craniofacial.

I don't know if this Mom I met saw Darcy. I do know that that degree

of plagio would be hard to miss even for a layperson. My friend's son

Ty also has significant asymmetry and that was dismissed, too. I also

don't know whom she saw. I have talked to two other moms who got

helmets right away on young babies with plagio milder than my son's.

I don't know what is going on over there. I wonder if some docs are

poorly trained at seeing asymmetry. However, the kid I met yesterday--

there's no training needed.

Thanks for sharing your story, and I am so glad you got treatment

right away! Where are you located?

, 20 mos, tort, DOC Band 5/7

--- In Plagiocephaly , " gailee11 " <gailee11@y...>

wrote:

> Wow, that upsets and shocks me. My son has had such wonderful

> results from the Clarren, but he was diagnosed at 4 mos. and had to

> wait until 6 mos. to start. His plagio wasn't considered severe,

> but no one questioned the referral from my pediatrician when we had

> our appointment there. I never felt like I had to convince anyone

> that needed the treatment (feel free to check out his

before

> pictures under in Our Plagio Kids). They left it up to me

> to choose between repo and helmet treatment. I actually had a

> harder time getting started on PT for his toricollis in a timely

> manner. But obviously my experience hasn't been the case for

> everyone. Do you know who this mother spoke with at Children's?

> The other moms I know all spoke with Darcy, who was the same person

> who initally diagnosed .

>

> has a docband, right? Where are you located? If you are in

> Seattle, you must have had to travel pretty far. Was it because

you

> couldn't get an appointment right away at Childrens, or didn't want

> to wait until 6 mos to start? I'm just curious. Good for you for

> taking the initiative to do what's best for your baby!

>

> Gail

> 11 mos, - 5 mos. in Clarren (almost done!)

>

[Guest guest]

Hi ,

It is so frustrating that in the Seattle area there is nothing

available that can treat older babies. I felt very fortunate that

we caught 's plagio early - in fact, I was kicking myself

that we didn't figure out something was wrong until 4 months - since

2 months we had actually been joking about how he never wanted to

look at anything on his right(duh - we had never even heard of

plagio or torticollis). It helped once I started talking w/ other

parents on the boards and realized I wasn't the only mom who had

missed it. I just needed to do what I could with the time that

remained. I would have liked to have had the option of a STARband

or DOCband for , as he had facial and ear asymmetry, which

are not necessarily corrected by the Clarren. It seems like the

STARband should be available here, since the Clarren is made by the

same company and both use the STARscan. I considered taking

to CT in Phoenix, which is where my family lives, but since my

husband and I are both full-time teachers, it was very difficult to

get enough time off to take him for regular adjustments, and of

course the cost of the trips was prohibitive. But we have been

lucky in that responded very well to the Clarren treatment.

We live in Port Orchard, so we take a ferry ride downtown whenever

he needs an adjustment, which has only been once so far.

Where did you end up taking ? Was it San Diego? Do you live

in Seattle? Are you happy with his progress so far? We just got

back from a trip to visit my family in Phoenix and I was surprised

at how many people came up to me to share that their child or a

child they knew had gone through helmet therapy, and to comment on

how wonderful it was. That NEVER happens here. I don't think the

word is out about helmets here, and maybe it's because not enough

people are being referred! Surprisingly enough, my HMO (Group

Health) actually suggested it to me. I had never even heard of it

before. Which HMO do you have? I imagine that you have been

appealing...? I hope so. It looks like so many people have had

success after several appeals. BTW, is that your with the

Caesar decorated band? Too cute!

Gail

11 mos, - 5 mos. in Clarren (almost done!)

> > Wow, that upsets and shocks me. My son has had such wonderful

> > results from the Clarren, but he was diagnosed at 4 mos. and had

to

> > wait until 6 mos. to start. His plagio wasn't considered

severe,

> > but no one questioned the referral from my pediatrician when we

had

> > our appointment there. I never felt like I had to convince

anyone

> > that needed the treatment (feel free to check out his

> before

> > pictures under in Our Plagio Kids). They left it up to

me

> > to choose between repo and helmet treatment. I actually had a

> > harder time getting started on PT for his toricollis in a timely

> > manner. But obviously my experience hasn't been the case for

> > everyone. Do you know who this mother spoke with at

Children's?

> > The other moms I know all spoke with Darcy, who was the same

person

> > who initally diagnosed .

> >

> > has a docband, right? Where are you located? If you are

in

> > Seattle, you must have had to travel pretty far. Was it because

> you

> > couldn't get an appointment right away at Childrens, or didn't

want

> > to wait until 6 mos to start? I'm just curious. Good for you

for

> > taking the initiative to do what's best for your baby!

> >

> > Gail

> > 11 mos, - 5 mos. in Clarren (almost done!)

> >

[Guest guest]

WEIRD! Group Health said they wouldn't recommend a band because they

didn't want to pay for it! Now I know I'm going to win our appeal, if

they paid for your Clarren.

Yes, we go to San Diego to Cranial Tech. I am VERY happy with the

results he has gotten from his DOC Band. I only wish he could get a

second band, but really that's just fine tuning. His hairline is

still totally wonky but his face and eyes look much better and he

won't be doomed to a lifetime of special order sports helmets because

of that flat spot! He will be asymmetrical but he will look normal

and will have to find another reason to get beat up in school.

I'm so glad your child got treated. Oh, yep, that's my little emperor!

parker, 20 mos

> > > Wow, that upsets and shocks me. My son has had such wonderful

> > > results from the Clarren, but he was diagnosed at 4 mos. and

had

> to

> > > wait until 6 mos. to start. His plagio wasn't considered

> severe,

> > > but no one questioned the referral from my pediatrician when we

> had

> > > our appointment there. I never felt like I had to convince

> anyone

> > > that needed the treatment (feel free to check out his

> > before

> > > pictures under in Our Plagio Kids). They left it up to

> me

> > > to choose between repo and helmet treatment. I actually had a

> > > harder time getting started on PT for his toricollis in a

timely

> > > manner. But obviously my experience hasn't been the case for

> > > everyone. Do you know who this mother spoke with at

> Children's?

> > > The other moms I know all spoke with Darcy, who was the same

> person

> > > who initally diagnosed .

> > >

> > > has a docband, right? Where are you located? If you

are

> in

> > > Seattle, you must have had to travel pretty far. Was it

because

> > you

> > > couldn't get an appointment right away at Childrens, or didn't

> want

> > > to wait until 6 mos to start? I'm just curious. Good for you

> for

> > > taking the initiative to do what's best for your baby!

> > >

> > > Gail

> > > 11 mos, - 5 mos. in Clarren (almost done!)

> > >

[Guest guest]

How strange that you had a different experience with GHC. Maybe

because of his age, and the fact that there are no local band

providers? Not sure. But either way, I think the fact that they

cover a Clarren should help in your appeal. Let me know if I can

provide any other info on our coverage if it will help in your

appeal.

I can't see any facial assymetry from 's photos, but it's hard

to tell. He's adorable! Let me know if you upload any pictures of

him w/out his band on.

Gotta run - 2 needy children climbing on me!

Gail

- 11 mos

> > > > Wow, that upsets and shocks me. My son has had such

wonderful

> > > > results from the Clarren, but he was diagnosed at 4 mos. and

> had

> > to

> > > > wait until 6 mos. to start. His plagio wasn't considered

> > severe,

> > > > but no one questioned the referral from my pediatrician when

we

> > had

> > > > our appointment there. I never felt like I had to convince

> > anyone

> > > > that needed the treatment (feel free to check out

his

> > > before

> > > > pictures under in Our Plagio Kids). They left it up

to

> > me

> > > > to choose between repo and helmet treatment. I actually had

a

> > > > harder time getting started on PT for his toricollis in a

> timely

> > > > manner. But obviously my experience hasn't been the case

for

> > > > everyone. Do you know who this mother spoke with at

> > Children's?

> > > > The other moms I know all spoke with Darcy, who was the same

> > person

> > > > who initally diagnosed .

> > > >

> > > > has a docband, right? Where are you located? If you

> are

> > in

> > > > Seattle, you must have had to travel pretty far. Was it

> because

> > > you

> > > > couldn't get an appointment right away at Childrens, or

didn't

> > want

> > > > to wait until 6 mos to start? I'm just curious. Good for

you

> > for

> > > > taking the initiative to do what's best for your baby!

> > > >

> > > > Gail

> > > > 11 mos, - 5 mos. in Clarren (almost done!)

> > > >