Re: For - Dallas

[Guest guest]

-

Not sure if my experience can be of any help... but since I'm in the

Dallas area and my premature son was diagnosed with Tortocolis -

thought I'd post. Our situation: son born at 31 weeks and spent

5.5 weeks in the NICU (this was actually a thankful outcome as it

was a very bad pregnancy). We noticed quite early on that he

favored his right side - I mentioned it to the Ped, and she said to

rotate him in his sleeping position. That did not do anything, and

she said to keep trying it - then at his four month it was visible

enough to the Ped (flattening of one side) She referred me for PT

and Early Intervention and mentioned that we might need to band

him. PT (Baylor Children's House - satellite site) seemed to help,

but was not going to resolve the flattening and asymmetry, she

really encouraged to see about banding. It took quite a while for

the EI people to come out, and by that time she didn't feel that our

son exhibited tortocolis. I got our Pediatrician to prescribe the

band (she was very accomodating about it), and worked with CT to get

our son in before the end of the year last year (because of our

medical issues (my pregnancy and my son's stay in the NICU) we hit

our out of pocket maximum, so by getting it in 2005, everything was

covered (whew!)).

The PT helped a lot with the favoring side aspect, but the head

shape damage was already done, and the repositioning did not seem to

really help that for us. EI were always very nice (they've come out

several times), but it took a while to get them out here for

evaluation. As I understand it, they can provide a host of services

(nutritionist, PT, speech therapy, etc) - and your monthly fee

covers everything and is based on household income. Right now my son

is only part of their follow along program as so far he doesn't seem

to need more extensive services. Since he got the band fairly early

(at 6.5 months - but 4.5 months adjusted) he was in the band for

only 6 weeks. It did round out his head quite well.

I asked about the scanning vs. the head casting - and CT really felt

that the head casting was superior because it can get an exact mold

of the head vs. the scan.

Also, CT needed for me to provide a letter that stated we had tried

repositioning for 2 months without success for insurance purposes.

I was amazed how well CT worked with insurance (Aetna). We now have

UnitedHealth and they do not cover the band at all.

Don't feel guilty about any of this - it's just one of those

things. You're on top of it early, and that will make a world of

difference.

I was so upset about banding my baby - I just wanted to enjoy him

after everything we went through... but really the banding was a

blip of time - and when they are that young, it does not phase them.

Good luck! Hope you get speedy treatment and can work out things

with insurance.

DS, 10 months, CT grad!

Pocephaly , " joag95 " <joag95@...> wrote:

>

> We're using CT in Dallas. They seem very nice and answered all of

my

> questions even when I asked the same things over and over. In fact

my

> son is also 4.5 months and was just banded yesterday and so far we

> are doing fine. He slept on his regular schedule last night with

> just a little extra fussing right when we put him down. Same

thing

> today - a little extra fussiness but generally the same as usual.

If

> you have any questions or need any help being new in town, feel

free

> to contact me off list. I'd love to help.

>

> Joanna

>

>

> > >

> > > MessageMy daughter arrived one day after relocating to Texas.

I

> > was 34 weeks. My water broke at 2am while we were staying at a

> > hotel, we were suppose to close on our house at 10 that morning.

> > Jackalyn was in the NICU for 16 days. Being new to the area I

> didn't

> > have any information on pediatricians and chose one that was on

my

> > insurance and was on the list the hospital provided me. At my

> > daughter's first checkup I was not impressed by the doctor, but

> went

> > to the same doctor for her 2 month checkup. At the two month

> checkup

> > the doctor plotted her on the growth chart and looked in her

ears

> > and said she was growing fine and the nurse give the shots and

> > weighted her (with diaper on) and that was it. After that day I

> > decided to find a new pediatrician. Jackalyn has been healthy

and

> > didn't see a doctor until her 4 month checkup. At the four month

> > checkup the pediatrician said that she had Plagiocephaly and

> > referred her to Cranial Technologies. I was quite shocked, but

now

> > that I look at her it is so obvious - I don't know how my

husband

> > and I didn't notice it.

> > >

> > > Cranial Technologies is not covered on or health plan so I

took

> > her for the free consultation two weeks ago. The said they

thought

> > it was torticollis, but could not diagnosis it and showed us

some

> > exercises to do. I wanted an official diagnosis and wanted to

rule

> > out other things so I made an appointment at the Fologson

Plastic

> > Surgery and Cranial Center (which is a preferred provider on my

> > insurance). The first appointment I could get was May 18th. The

> > sheduler was wonderful and told me it was fine if I kept calling

to

> > see if there was any cancellations or openings that weren't

filled

> > by newborns needing ear molding. I was called Wednesday for an

> > opening on Thursday (yesterday). One thing I have learned it

pays

> to

> > be persistent to get an appointment. Jackalyn was diagnosed with

> > severe toricollis and the nurse recommended the helmet right

away

> > rather than exercises for 2 months and she recommended physical

> > therapy. X rays were taken and we should have the results on

> Monday.

> > >

> > > Questions:

> > >

> > > What have your experiences been with improvements from

> > repositioning and exercises? Jackalyn is 4.5 months old.

> > >

> > > Hanger is the only helmet provider covered on our insurance

and

> > only after 2 months of exercises and repositioning. Have any you

> > used Hanger for the helmet and if so what was your experience?

> > >

> > > We are currently trying to decide between Star Band and

Cranial

> > Technologies as we don't think we want to wait for exercise or

use

> > Hanger which doesn't specialize in the helmet. We think the 3d

scan

> > would be easier on the baby rather than the plaster mold, but is

> > there any difference in effectiveness?

> > >

> > > Does anyone have any experience with Starband or Cranial

> > Technologies in Dallas, TX?

> > >

> > > I have quite a few therapy options, but I not sure how to

> proceed.

> > Depending on how the visit is coded the copay will be 20, 30 or

40

> > per visit. There is PT clinic just down the street that has

treated

> > some babies with toricollis and then there is Cook's Children's

> > rehab center that does therapy for a lot of babies with

toricollis,

> > of course that one has the 40 copay per visit. I also have a

whole

> > list of other therapists in the metroplex, but haven't called

them

> > all for location, experience and insurance information. I also

have

> > a list of home health providers to contact regarding experience

and

> > determine if they are covered on our health plan. Which would be

> > easier on my 3 year old. Any thoughts on the PT or experiences

> would

> > be greatly appreciated.

> > >

> > > Does anyone have any experience using EIC (Early Childhood

> > Intervention) for the PT? The clinician at CT indicated that

this

> > may be a good option, but I was also told that the process may

take

> > 45 days before you are even assigned a therapist.

> > >

> > > Does anyone have any experience getting BCBS to pay for the

band

> > without doing the two months of exercises and repositioning?

> > >

> > >

> > > Parting thoughts: My husband and I were so uneducated about

> > repositioning even though it is our second child. It is now so

> > obvious that everything we did from holding her to bathing her

all

> > favors one side. It is frustrating that it was never mentioned

by

> > any of the nurses or neonatologists in the NICU or at the

newborn

> > class you attend before leaving the hospital. I also regret not

> > switching doctors for her two month checkup. As I look back at

> > pictures I think it was noticeable at 2 months.

> > >

> > > I became a stay at home mom when we moved to Texas and our

income

> > went down signicantly and am finding the costs for all this to

be

> > overwhelming.

> > >

> > > I appreciate any information and guidance that you may be able

to

> > provide to our family on this issue.

> > >

> > >

> > >

> >

>