Re: New here - intro and ????s

[Guest guest]

Just want to comment on keeping the band on full time versus part time. In

's case, he has outgrown his band in 6 weeks. He would have outgrown

that band in 6 weeks whether or not he had worn it all the time, so the

difference is in the quality and amount of correction we saw rather than the

time he wore it.

Good luck!

Christi in TX

Mommy to , 6/2/01 at 34 weeks

http://www.exracers.com/nathan.htm

[Guest guest]

Hello and welcome. I am a little late in getting this posted and I'm certain

that you have already received lots of answers to your questions. All of your

questions are good ones and ones that most people here have asked at one

point or another.

It is great that you have already seen improvement with the tort - that will

help in the treatment of the plagio. Here are some answers to your questions.

1. Every insurance covers differently, however, durable medical equipment is

often not covered at 100%. We had the same situation as you do - we paid 20%

they paid 80%. If they actually carry through and pay something you will be

WORLDS ahead of lots of people here who have been denied coverage over and

over again.

2. Locally made helmets and the STARband are less expensive then the DOCband

(which is what Cranial Technologies makes). However, the DOCband people do

nothing but make bands and their people are highly specialized in the

treatment of infants and plagio. STARbands and helmets are made by orthotists

who do not necessarily specialize solely in the treatment of plagio like the

DOC people do. I have heard lots of good things about the CT clinic in

Burbank and I think most who have been there will give it a glowing

reccommendation.

3. If you get the x-ray results back and they conclusively show that there is

no craniosynostosis then it may not be necessary to see a specialist. I am

impressed that your ped has been so on top of things. Many people here see a

specialist simply because their ped knows NOTHING about plagio and nothing

about helmet/band therapy. Unless you have serious doubts about whether or

not craniosynostosis is present then a specialist may not be necessary.

4. The choice to band or not is definitely yours. True, as your baby becomes

more active and spends less time on her back the flatness should not worsen.

It is really a personal choice. With PT, aggressive repositioning and lots of

supervised tummy time it is possible that much of the flatness will correct.

We have some people here who have had great luck with those things alone and

did not use a band. We have also had people here who tried those things and

still did not get the correction they desired and therefore chose to use a

band as well. It is such a personal decision and probably the toughest part

of this condition. The decision to band or not!

5. Aggressive repositioning at night would be necessary to help correct the

flatness. Without it you may not get the results you desire. It is good that

you are working on alternate positions during the day, but the bulk of the

time spent on the back occurs at night and hence repositioning becomes pretty

important. This is one big reason why some people choose to band. They simply

cannot reposition effectively for one reason or another.

6. If you choose to get the band they would tell you that it is to be worn 23

hours a day. I do not think they would recommend partial day wear. The band

applies very gentle pressure to the non-flat parts thereby allowing the flat

part to grow outward. This needs to be an ongoing thing with as little

interuption as possible.

I hope this information helps. I'm glad you have joined the group and I hope

you will stick with us. I look forward to hearing what you decide to do - no

matter which way you go you will have the support of this group.

Marci (Mom to )

Oklahoma

[Guest guest]

Hi and welcome to the group. Just wanted to share that my son was dx with tort also, and if you haven't already, you can join the group for tort, torticolliskids , or www.torticolliskids.org to get more info and support on the tort. I found them to be invaluable resources for tips on all sorts of things related. Keep up with the stretches both at home and at pt and you'll find Emilie will do great! Email me direct if you should have any tort questions I may be able to help you with or if you just want to vent- been there and done that! Good luck to you and please keep us updated on your little girl!

' Mom (DOC grad, tort semi-grad)