Just diagnosed

[Guest guest]

Yes, we went through the appeal process and even made it a point to include more information for them so that they could see that it most definately it was medically necessary but they still denied her. I wish there was a way we could bring all these babies together and have them look at them and give them the ultimate question "What would you do if this was your child?". I know for a fact they wouldnt let them remain in the conditions that they are in. Thats the problem with america these days though they are too wrapped up in money and cost to worry about the children we are all trying to raise.

From: christineashok <christineashok@...>Subject: Re: Just DiagnosedPlagiocephaly Date: Friday, August 8, 2008, 5:54 PM

Hi, sorry you were denied. Have you looked into your insurancecompany's appeal process? It may take a while, but it is possible theywill cover a band. Many people have to appeal in order to get the bandcovered. Unfortunately not all companies pay, even on appeal. It isreally not right that they don't cover it, but what can we do? -christinesydney 2.5 yrs starband grad> > From: <lovingoz@.. .>> Subject: Re: Just

Diagnosed> Plagiocephaly> Date: Thursday, August 7, 2008, 5:39 PM> > > > > > > We are using Care Credit while we are in the second appeal process with > our insurance company. Go to www.carecredit. com and it will give you a > detailed version of all the payment plans. Much luck.>

[Guest guest]

,

This might be off in left field but have you tried social services /

medicaid? It's worth a shot! I know someone who went that route after

her insurance company failed them- she was given medicaid for her

baby which paid for the scans, helmet, everything! It was such a

relief. You do what you have to do when it comes to your children-

for me, there is no such thing as pride when it comes to them. If I

were in that situation I'd do it in a heartbeat.

- Mom to:

Jadyn 8 Months - Gets helmet this Friday! Yay! Finally!

Ava 23 Months

> >

> > From: <lovingoz@ .>

> > Subject: Re: Just Diagnosed

> > Plagiocephaly

> > Date: Thursday, August 7, 2008, 5:39 PM

> >

> >

> >

> >

> >

> >

> > We are using Care Credit while we are in the second appeal

process with

> > our insurance company. Go to www.carecredit. com and it will give

you a

> > detailed version of all the payment plans. Much luck.

> >

>

[Guest guest]

Along with appealing your insurance company, something I didn't know you could do was to send in a request for an external review to be done through your state department of insurance. My insurance denied my first appeal and now I am in the process of sending in a request to Arizona department of Insurance to have them do a review of my appeal. The nice thing is you don't have do go through your insurance company to submit it.

Best of Luck

Lorie

Mom to Spencer and Alizabeth 15 months

Spencer- Left Plagio- DOC Band GRAD 9/07-12/07

Glendale, AZ

Re: Just Diagnosed> > Plagiocephaly> > Date: Thursday, August 7, 2008, 5:39 PM> > > > > > > > > > > > > > We are using Care Credit while we are in the second appeal process with > > our insurance company. Go to www.carecredit. com and it will give you a > > detailed version of all the payment plans. Much luck.> >>

[Guest guest]

Thank you so much for replying . I do have medicaid for her and that is who denied her. I also looked into insurance through my work to add her to my policy and they will not cover it either. I tried the united healtcare help website thing and because she is on medicaid they will not help. I dont know what else to do.

From: seattlesnowflake <seattlesnowflake@...>Subject: Re: Just DiagnosedPlagiocephaly Date: Monday, August 11, 2008, 11:27 PM

,This might be off in left field but have you tried social services / medicaid? It's worth a shot! I know someone who went that route after her insurance company failed them- she was given medicaid for her baby which paid for the scans, helmet, everything! It was such a relief. You do what you have to do when it comes to your children- for me, there is no such thing as pride when it comes to them. If I were in that situation I'd do it in a heartbeat. - Mom to:Jadyn 8 Months - Gets helmet this Friday! Yay! Finally!Ava 23 Months> > > > From: <lovingoz@ .>> > Subject: Re:

Just Diagnosed> > Plagiocephaly> > Date: Thursday, August 7, 2008, 5:39 PM> > > > > > > > > > > > > > We are using Care Credit while we are in the second appeal process with > > our insurance company. Go to www.carecredit. com and it will give you a > > detailed version of all the payment plans. Much luck.> >>

[Guest guest]

The short answer is very effective. There are various factors that can determine how effective it will be, the biggest being the ortho you see. Go and get an evaluation to see how bad or not the measurements are. I've heard most CT offices will do this for free. Talk to you pedi and see where they recommend. We were referred to a craniofacial plastic surgeon after her two month check up. Went back for a follow up with the surgeon at ~4months and were given a script for a helmet then.

Elaine (twin A) plagio & tort, 7 1/2 months, 1 week in helmet #2

On Wed, Jan 14, 2009 at 9:56 AM, stacey728 <stacey728@...> wrote:

My 15 week old son was diagnosed with Torticollis and Plagiocephaly. We were told by the PT that he would need the helmet. I am a first time mother and wondering how effective the helmet is?

[Guest guest]

in my opinion, the helmet is VERY effective! My daughter was diagnosed at about

8 weeks

- we did the stretches and repositioning and the tort improved but the plagio

did not - at

5 months we banded her and she wore the band for only 6 weeks and her diagonal

difference went from 11mm to 0mm You can check out her before and after under

L for

Lucy. I DO NOT regret the band for one instant - yes, its a pain, but it is for

just a glimpse

of their life and, thankfully, nothing they will ever remember. I would venture

to guess

that 99.99% of parents on this board are very happy they banded and have no

regrets

about it - however, if you check out the board for older kids with plagio - many

of those

parents wish they could go back and band if they could do it al over again.

Let us know what your concerns or fears are and we will all be honest in helping

to guide

you in a decision that is right for you and your child.

- Meg, mom to Lucy, 6.5m, STARband grad 1/12/09

Milwaukee, WI

>

> My 15 week old son was diagnosed with Torticollis and Plagiocephaly.

> We were told by the PT that he would need the helmet. I am a first

> time mother and wondering how effective the helmet is?

>

[Guest guest]

Hi Stacey,

It is great that the tort and plagio were caught so early! My daughter got

great correction and if you take a look at any of the pictures in the photo

files, they really speak for themselves!! It definitely helps if you are able

to resolve the tort. But banding does really change the head shape in a

relatively short period of time. If you go for a consultation for a helmet they

would tell you the best time to start, it may depend on how fast the tort is

improved. Good luck with the process, your baby is young, you should get awesome

results if you decide to band.

Mom to McKenna - 9 months old

band 10/20-1/09

> From: stacey728 <stacey728@...>

> Subject: Just Diagnosed

> Plagiocephaly

> Date: Wednesday, January 14, 2009, 2:56 PM

> My 15 week old son was diagnosed with Torticollis and

> Plagiocephaly.

> We were told by the PT that he would need the helmet. I am

> a first

> time mother and wondering how effective the helmet is?

[Guest guest]

Thanks for the advice, !We are going ahead with the helmet for our son. When they took the pictures, you can clearly see where there are differences in his face and ears. I saw your pictures and she is adorable! We are a bit nervous about it and hope it is not uncomfortable for him. Do you have any advice for us when he gets it? Cleaning? How to keep it from irritating him? Etc.

Thanks,

Stacey> From: stacey728 <stacey728 (DOT) com>> Subject: Just

Diagnosed> Plagiocephaly> Date: Wednesday, January 14, 2009, 2:56 PM> My 15 week old son was diagnosed with Torticollis and> Plagiocephaly. > We were told by the PT that he would need the helmet. I am> a first > time mother and wondering how effective the helmet is?

[Guest guest]

If your baby has a very stiff neck, it probably is torticullis and there are

stretching exercises with pictures on the internet. (I found them after the PT

showed me how to do them, but could not leave me pictures.) You should start

doing the gentle stretches as soon as you can at each diaper change (although I

did after each feeding too.) Then there is a fabulous stretch that a PT can

show you where you hold your child in your arms like a cradle hold with the

baby's head between your forearm and biceps (elbow out so that they can get

plenty of air) and gently stretch the neck up. I used this as my son was going

to sleep and as he slept for naps. It both stretched his neck and put pressure

on his forehead so that after 1 month I could see that his eye had moved up and

his forehead had moved back. I also had him nap on a memory foam pillow

stretching his neck and putting pressure on his forehead (BUT I COULD SEE HIM

THE WHOLE TIME HE NAPPED.) I started this about your baby's age. We still have

a helmet, but he did not look so terrible as before I started the stretching and

pressure. (Be warned it took me 3-5 hours each day for about a month to see the

big difference.)

Hope that helps, I sure have been there.

Annie

>

> hello all- i live in huntington (long island) ny and my 9 week old was just

diagnosed with plagiocephaly and torticollis. i am off to a neurologist this

week to make sure diagnosis is accurate and have already looked into pt. does

anyone have any info on services or great doctors etc... in my area. also-my

son has a different size eye and slightly protruding forehead - do you all think

that with appropriate treatment i can change these things. i am beyond upset -

cant sleep or eat and so glad i found this site. very concerned about reading

about the delays in school etc???

>

> any help would be most appreciated. i am sleeping in on the opposite size now

but he keeps sliding down in the wedge and eventually finds a way to roll onto

his back-even with the wedge-and i am up all night turning him??

>

> thank you.

> kimberley

>

[Guest guest]

Welcome!

The good news is your baby is only 9 weeks old, so for it to be diagnosed that

early by a doctor is a great thing. The first thing you should focus on is the

tort and PT. The stretches are so important in improving his range of motion and

helping with the plagio. Some natural rounding can happen if you try aggressive

reposition because he is so young right now. If in a couple of months, a band is

the answer, it will definitely help with his forehead protrusion (assuming you

seek treatment from a qualified and experienced ortho, I'm not from NY however

so I can't help you there), and that in turn should help with the appearance of

his eye, making it appear more even with the other. My son had the same issue,

and although he wasn't band until 17 months old, we saw significant improvement

in his forehead, and his eyes look much better now as well. So starting at 4 or

5 months (if you waited that long), should see really great results.

Good luck! And please keep us posted and ask any questions you have!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> hello all- i live in huntington (long island) ny and my 9 week old was just

diagnosed with plagiocephaly and torticollis. i am off to a neurologist this

week to make sure diagnosis is accurate and have already looked into pt. does

anyone have any info on services or great doctors etc... in my area. also-my

son has a different size eye and slightly protruding forehead - do you all think

that with appropriate treatment i can change these things. i am beyond upset -

cant sleep or eat and so glad i found this site. very concerned about reading

about the delays in school etc???

>

> any help would be most appreciated. i am sleeping in on the opposite size now

but he keeps sliding down in the wedge and eventually finds a way to roll onto

his back-even with the wedge-and i am up all night turning him??

>

> thank you.

> kimberley

>

[Guest guest]

I was diagnosed today with RA and am trying to find out all I can aobut this. I

was initially diagnosed with Fibromyalgia and kept saying I didn't think I had

it as my symptoms didn't sound like everyone elses and I guess I was right.

WOuld love hearing how others cope and what meds are useful.

Lou

[Guest guest]

Hi Lou,

The meds I take are just 3 methotrexates a week with folic acid 2x a day. It

works perfectly for me RIGHT NOW, it's been 10 years and that could change at

any time. If it does, I'll go on a biologic.

How I personally cope is the fact that although my RA came on overnight and

STRONG, I function VERY well right now and I'm just thankful that if I have to

have an autoimmune disease that it's this one. I feel that there are much more

nastier ones out there and if I have to have this cross, it's doable.

Good Luck. Find a good rheumy that you like and respect.

in PA

[ ] Just diagnosed

I was diagnosed today with RA and am trying to find out all I can aobut this.

I was initially diagnosed with Fibromyalgia and kept saying I didn't think I had

it as my symptoms didn't sound like everyone elses and I guess I was right.

WOuld love hearing how others cope and what meds are useful.

Lou

[Guest guest]

Hi Lou and welcome to the group. I'm sorry to hear you have been diagnosed

with RA. I have both RA and FM - as do many others - so it is possible you have

both - although I pray not - one is bad enough as it is. The new trend in RA

treatment is early aggressive therapy. I was diagnosed 3+ years ago and

currently take Sulfasalazine, Methotrexate injection, Folic Acid, Prednisone,

Enbrel and Percocet. I take Neurontin for the Fibromyalgia (FM).

As for coping - its all a one day at a time, one hour at a time, one minute at a

time type of thing. How we feel can change from day to day (or more often)

depending on the weather, our stress levels and why our neighbors have painted

their mailbox pink (sarcasm). I've learned to try to be creative in finding new

ways to do the things I can no longer do and accepting the things I just can't

do at all. The Serenity Prayer has been my mainstay. The Spoon Theory has helped

me in planning out my days and helping others to maybe understand what I am

going through - check it out:

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

You have come to the right place for information and support. We all have

learned from and taught each other along the way. Please keep us posted on how

you're doing and the plan of action your Rheumy has for you. We care - you are

not alone.

Doreen

I was diagnosed today with RA and am trying to find out all I can about this. I

was initially diagnosed with Fibromyalgia and kept saying I didn't think I had

it as my symptoms didn't sound like everyone elses and I guess I was right.

Would love hearing how others cope and what meds are useful.

Lou

[Guest guest]

i know this may seem cruel to some , but i would consider this a safe option here i have seen people with small children with animal backpacks but the have like a leash attached to it so you can keep up with your child, it gives them some leeway but they cant go to far away from you. I know alot of parents dont want to do this but it is an idea, i thought they were a really cute idea. sherryFrom: lorrainedavidson12

<lorrainedavidson12@...> Sent: Monday, July 20, 2009 7:05:16 AMSubject: ( ) Just diagnosed My 6 yr old son has just been diagnosed with Aspergers, but the Dr also said in her next breath absolutely nothing will change because there is no support in Scotland, so other than going to a NAS group every eight weeks we have no help or guidance. Going through the usual frustrations and joys of a parent of an aspergers child.

The biggest problem we have when we are out is our son "disappearing" we have done the explaining he could get lost, offered him rewards if he stays beside us, but none of these seem to work, any ideas would be much appreciated.