Re: Introduction and ready for battle (long)

[Guest guest]

Hi Kris,

My name is Johanna and my daughter Tatijana is 20 months old and started DOC

band at 19 months. We are military located at Fort Bragg, NC. We started

noticing that her head was flat on the left side when she was about 2 months

and brought our concern up to our docotor and we got the same reply " just

wait and see " At her four month check we voiced the same concern and got the

same reply then at her six month check we saw a different doctor and he was

concerned. We went through Early Intervention on post and the pediatrician

that works there knew exactly what plagiocephaly was. She referred us to a

pediatric neurosurgeon who told us that with a full head of hair she will

look fine. That was not our concern. We went back to the Early Int. ped.

and she wrote us a referral to a craniofacial speicalist after I had done

some research online and chosen one. We also went in for a CT scan on

Tatijana's first birthday and after finally seeing the craniofacial

specialist we had a second CT scan done. We were then referred to Charlotte

to Cranial Technologies for the DOC band. Because of having so much going

on and having to wait for available doctor appointments we were not able to

start her on the band until 19 months of age. Being military I assume that

you have Tricare for insurance the only thing that tricare paid for so far

is the consultation appointments with the neurosurgeon and cranifacial

specialist. As far as paying for the band they we are on the 2nd level of

appeal. We are fighting Tricare as much as we can. We have been loaned the

money to be able to pay for the band so we could go ahead and start the

treatment. Tricare denies the band stating that it is cosmetic.

We have had very good success so far with the band even though she is an

older child to start the treatment. If you have any more questions about

being military and the band or get into the appeals I would be happy to help

with what I can.

Johanna Tatijana's mom 6/26/99 DOC band 01/29/01

>From: welshsspaniel@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Introduction and ready for battle

>Date: Tue, 13 Mar 2001 14:44:50 -0000

>

>Hi @ll,

>

>My name is Kris, Mom to Amara Sky 09-25-00.

>My battle has just begun. At Amara's 2 months check up I mentioned her

>head, Ped told me nothing to worry about.At the 4 months check up the

>Ped totally blew me of.Nothing to worry about it will round out.

>( I have started aggressive repositioning, without much luck,Amara is

>very mobile and will not stay on her tummy,even with towels under her

>shoulder she will still turn and rest on her left side)

>So here we are, her 6 months check up is next Tuesday. I am going in

>with my guns loaded.I did my research and I am not leaving the Ped

>without a referral to a specialist.

>Amara has a large flat spot(more like the whole side is flat) on the

>left side of her head. One ear bigger than the other and one ear also

>pushed forward more. Her cheeks and eyes are off also.

>I am hoping that there are some Military people on this list that

>could tell me how it went for them. I am still not sure what

>specialist I should ask for.

>We are in the Norfolk area that means we would have to deal with

>Portsmouth Naval Hospital.

>This has cost me a lot of grief, partially since I did not stand up

>when I should have.I know it cost us time. At this point I am feeling

>a mixture of anger and sadness.

>I am looking forward to learning from this list

>Thanks

>Kris

>

>

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[Guest guest]

I have two things to say!

Johanna, who are the doctors you saw at Ft. Bragg? The reason I ask is because I have a mom there who we think has Craniosynostosis but they are just saying it is positional and won't referr her a specialist to know for sure and if I can get someone who is more familiar maybe it will help.

Also you all that are Tricare military moms and wives need to talk to the reporters at the Military Times (meaning AF, ARMY, USMC, NAVY) and tell them your story. I had the times about to write a story on our Tricare denial when they covered it so I didn't rock the boat. But in the last year that I have been helping families I have come across like 6+ families dealing with the same thing Tricare and denial of the helmet. Let me know if I can help.

Pitchke

[Guest guest]

Hi there )

We are in the Norfolk area in Virginia. For us that means that we

have to go to the military hospital first. If there is treatment that

they can't provide they will send us to the childrens hospital.

Again, I will know more on Tuesday. I sure hope that I can stand

my ''man'' and get what I want from the Ped.When it comes to Amara I

get very emotional.(Last child, born via emergency c-sec,just the

apple of my eye).

By the way somebody ask what ''it'' was caused by.Amara's head was odd

when she was born, was told than it was caused by her beeing in the

birthcanal for so long.But the flatness got worst as she grew.Like I

said I pointed out her head at her 2 and 4 months check ups and I was

blown of.

As it comes closer to the app. I am getting more nervous.

This list is a great resource, I wish I had found it sooner.

Kris and Amara Sky

[Guest guest]

,

The doctor I saw here that knew about plagio is Dr. Sharon in the

peds clinic at Womack or she also works in Early Intervention at Womack. I

have heard of another Dr. here on post who also goes to my church who has

dealt with one child. His name is Dr. us at clinic. Dr.

is very hard to get a hold of because she is a very busy person, but

if the number is needed you can contact me and I can try to help with it.

Johanna

>From: CAPSORG@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Introduction and ready for battle (long)

>Date: Wed, 14 Mar 2001 08:00:11 EST

>

>I have two things to say!

>Johanna, who are the doctors you saw at Ft. Bragg? The reason I ask is

>because I have a mom there who we think has Craniosynostosis but they are

>just saying it is positional and won't referr her a specialist to know for

>sure and if I can get someone who is more familiar maybe it will help.

>Also you all that are Tricare military moms and wives need to talk to the

>reporters at the Military Times (meaning AF, ARMY, USMC, NAVY) and tell

>them

>your story. I had the times about to write a story on our Tricare denial

>when they covered it so I didn't rock the boat. But in the last year that

>I

>have been helping families I have come across like 6+ families dealing with

>the same thing Tricare and denial of the helmet. Let me know if I can

>help.

> Pitchke

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[Guest guest]

Thanks I will keep those names handy and call the mom today. Thanks and maybe we can get you two together some time??

Pitchke