affording a band or helmet

[Guest guest]

What do parents do that can not afford the bands? Insurance does not cover them

in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How

do I know the medical company making the band or helmet knows what they are

doing. They don't all take digital scans or images and i have read some horrific

stories about deforming the head even further. Not sure what families are

suppose to do when they can not afford the device. I don't want to be

mis-understood because I have tried Childrens Hospital and Shirners. Shirners

won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

wants 300 for scan and god only knows what for the helmet...Just wondering if

anyone else has had this problem and if there is a way to get help? I don't

expect it for free.. I KNOW our family can not afford much for the cost of

treatment however though... I am scared for my daughter. I am kind of lost all

together. I have read a lot of contradictory statements regarding the

combination of the CMT and the Plagio. My daughters doctor does not believe in

helmets. My daughter just turned 3 months she was diagnosed during a visit to

Childrens for what we found out to be a X gene mutation. Her doctor did not

catch any of the three conditions:( I might add he has not been very helpful

with any of it either. We are going to PT right now and are struggling with some

issues. That's probably a topic for another post.. any info on aide is

appreciated for the helmets and bands! How do we know if she needs it? Her

doctor won't do what the therapist suggested and won't give me the proper

referral... I am thinking it's time to change Pediatricians again! UGGGHHH

TOTALLY LOST MOTHER OF TWO IN CHICAGO!

[Guest guest]

Aww momma *hugs*I wouldn't pay for a scan. Too many places do it for free. I maxed out my credit card tbh Yes, it hurt a lot. But I made that choice, not saying you should. She's young so you have a few months to save up or try repositioning. You can ask your doctor for a referral to a cranial center if their insurance covers it. That's the route we went and they gave us the script. At Hanger they offer a payment plan and discount for people paying out of pocket. There are a few facebook groups that are trying to start up programs to help pay for these things but I don't think any have really gotten off the ground yet :/May I ask what led to the fragile x dx? My baby is getting tested for it in a few months and I am very nervous about it. Do both of your babies have

it?Deep breaths. She's young. I would definately look up all the brands DOC, Starband, Hanger in your area and get quotes from them and ask about discounts and paayment plans if insurance doesn't pay for it. I was reading some insurance companies make you appeal three times before actually reading the paperwork. :/ There are also special pillows you can buy to help reshape the head that I remember seeing searching one day and as young as she is that might help and maybe keep it down to only one helmet? I'm really sorry for what you are going through right now but forge through like the momma bear I know you are. It'll be ok.From: <amanda_amburgey@...>Plagiocephaly Sent: Thu, January 6, 2011 7:56:24 AMSubject: affording a band or helmet

What do parents do that can not afford the bands? Insurance does not cover them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How do I know the medical company making the band or helmet knows what they are doing. They don't all take digital scans or images and i have read some horrific stories about deforming the head even further. Not sure what families are suppose to do when they can not afford the device. I don't want to be mis-understood because I have tried Childrens Hospital and Shirners. Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens wants 300 for scan and god only knows what for the helmet...Just wondering if anyone else has had this problem and if there is a way to get help? I don't expect it for free.. I KNOW our family can not afford much for the cost of treatment however though... I am scared for my daughter. I am kind of lost all together. I have read a lot of

contradictory statements regarding the combination of the CMT and the Plagio. My daughters doctor does not believe in helmets. My daughter just turned 3 months she was diagnosed during a visit to Childrens for what we found out to be a X gene mutation. Her doctor did not catch any of the three conditions:( I might add he has not been very helpful with any of it either. We are going to PT right now and are struggling with some issues. That's probably a topic for another post.. any info on aide is appreciated for the helmets and bands! How do we know if she needs it? Her doctor won't do what the therapist suggested and won't give me the proper referral... I am thinking it's time to change Pediatricians again! UGGGHHH

TOTALLY LOST MOTHER OF TWO IN CHICAGO!

[Guest guest]

at 3 months old i would try very agressive repositioning while looking into my options.  there have been posts before as to places that may be able to help.  the other option is getting a care payment plan

On Thu, Jan 6, 2011 at 10:56 AM, <amanda_amburgey@...> wrote:

 

What do parents do that can not afford the bands? Insurance does not cover them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How do I know the medical company making the band or helmet knows what they are doing. They don't all take digital scans or images and i have read some horrific stories about deforming the head even further. Not sure what families are suppose to do when they can not afford the device. I don't want to be mis-understood because I have tried Childrens Hospital and Shirners. Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens wants 300 for scan and god only knows what for the helmet...Just wondering if anyone else has had this problem and if there is a way to get help? I don't expect it for free.. I KNOW our family can not afford much for the cost of treatment however though... I am scared for my daughter. I am kind of lost all together. I have read a lot of contradictory statements regarding the combination of the CMT and the Plagio. My daughters doctor does not believe in helmets. My daughter just turned 3 months she was diagnosed during a visit to Childrens for what we found out to be a X gene mutation. Her doctor did not catch any of the three conditions:( I might add he has not been very helpful with any of it either. We are going to PT right now and are struggling with some issues. That's probably a topic for another post.. any info on aide is appreciated for the helmets and bands! How do we know if she needs it? Her doctor won't do what the therapist suggested and won't give me the proper referral... I am thinking it's time to change Pediatricians again! UGGGHHH

TOTALLY LOST MOTHER OF TWO IN CHICAGO!

--

-mommy to Emma, Becca, , , , and Leah

[Guest guest]

I went through something very similar with my son. He is now 7 months old and

has been in his starband for a month. Our insurance would not cover cranial

remolding either and I had no idea how we were going to afford it. We were

already trying to cut back on expenses, since I did not return to work in order

to stay home full time with our son. There were many nights I laid awake at

night crying over it. We ended up opening another credit card just to pay for

it. I am very happy with our decision to band though. My son's pedi did not

believe in helmets either. She ordered x-rays to make sure there was no

premature fusion of the sutures(wich there was not) but would not go any furthur

treating his misshapen head. We changed pediatricians and the new one gave us a

refferal to a specialist, who gave us a perscription. It has been a long road

but all totally worth it. Best of luck to you!

Brittany

Sothern California

>

> What do parents do that can not afford the bands? Insurance does not cover

them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or

IPA...How do I know the medical company making the band or helmet knows what

they are doing. They don't all take digital scans or images and i have read some

horrific stories about deforming the head even further. Not sure what families

are suppose to do when they can not afford the device. I don't want to be

mis-understood because I have tried Childrens Hospital and Shirners. Shirners

won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

wants 300 for scan and god only knows what for the helmet...Just wondering if

anyone else has had this problem and if there is a way to get help? I don't

expect it for free.. I KNOW our family can not afford much for the cost of

treatment however though... I am scared for my daughter. I am kind of lost all

together. I have read a lot of contradictory statements regarding the

combination of the CMT and the Plagio. My daughters doctor does not believe in

helmets. My daughter just turned 3 months she was diagnosed during a visit to

Childrens for what we found out to be a X gene mutation. Her doctor did not

catch any of the three conditions:( I might add he has not been very helpful

with any of it either. We are going to PT right now and are struggling with some

issues. That's probably a topic for another post.. any info on aide is

appreciated for the helmets and bands! How do we know if she needs it? Her

doctor won't do what the therapist suggested and won't give me the proper

referral... I am thinking it's time to change Pediatricians again! UGGGHHH

>

> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

>

[Guest guest]

AllKids Illinois is contracted with Hanger. Give them a call. Hanger helmet

should be covered 100% by AllKids.

>

> What do parents do that can not afford the bands? Insurance does not cover

them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or

IPA...How do I know the medical company making the band or helmet knows what

they are doing. They don't all take digital scans or images and i have read some

horrific stories about deforming the head even further. Not sure what families

are suppose to do when they can not afford the device. I don't want to be

mis-understood because I have tried Childrens Hospital and Shirners. Shirners

won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

wants 300 for scan and god only knows what for the helmet...Just wondering if

anyone else has had this problem and if there is a way to get help? I don't

expect it for free.. I KNOW our family can not afford much for the cost of

treatment however though... I am scared for my daughter. I am kind of lost all

together. I have read a lot of contradictory statements regarding the

combination of the CMT and the Plagio. My daughters doctor does not believe in

helmets. My daughter just turned 3 months she was diagnosed during a visit to

Childrens for what we found out to be a X gene mutation. Her doctor did not

catch any of the three conditions:( I might add he has not been very helpful

with any of it either. We are going to PT right now and are struggling with some

issues. That's probably a topic for another post.. any info on aide is

appreciated for the helmets and bands! How do we know if she needs it? Her

doctor won't do what the therapist suggested and won't give me the proper

referral... I am thinking it's time to change Pediatricians again! UGGGHHH

>

> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

>

[Guest guest]

Do you know much about Hanger? Where are they located. Do they have a doctor on

staff??? or a board certified orthasist? I am alittle afraid of these

orthasist's...How do they take their molds? I guess my real question should be

whats the most common practice for fitting a child for a mold? I know some do

scans and digital images.. Thanks so much for the INFORMATION... I totally

appreciate it.

> >

> > What do parents do that can not afford the bands? Insurance does not cover

them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or

IPA...How do I know the medical company making the band or helmet knows what

they are doing. They don't all take digital scans or images and i have read some

horrific stories about deforming the head even further. Not sure what families

are suppose to do when they can not afford the device. I don't want to be

mis-understood because I have tried Childrens Hospital and Shirners. Shirners

won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

wants 300 for scan and god only knows what for the helmet...Just wondering if

anyone else has had this problem and if there is a way to get help? I don't

expect it for free.. I KNOW our family can not afford much for the cost of

treatment however though... I am scared for my daughter. I am kind of lost all

together. I have read a lot of contradictory statements regarding the

combination of the CMT and the Plagio. My daughters doctor does not believe in

helmets. My daughter just turned 3 months she was diagnosed during a visit to

Childrens for what we found out to be a X gene mutation. Her doctor did not

catch any of the three conditions:( I might add he has not been very helpful

with any of it either. We are going to PT right now and are struggling with some

issues. That's probably a topic for another post.. any info on aide is

appreciated for the helmets and bands! How do we know if she needs it? Her

doctor won't do what the therapist suggested and won't give me the proper

referral... I am thinking it's time to change Pediatricians again! UGGGHHH

> >

> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!

> >

>

[Guest guest]

Are you asking about her X gene mutation?

http://en.wikipedia.org/wiki/Incontinentia_pigmenti

She was born with blisters on her wrists and the several strange body rashes

appeared. Instead of the doctors and the hospital my OB included sending her to

Childrens ASAP they took a conservative approach and let it manifest till they

did a biopsy and still had no answers. Local dermatologist handled it the first

two months with no results..She referred us along with the pediatrician to

Childrens in Chicago. They had a solid diagnoses with in MINUTES! Then the head

professor out of NORTHWESTERN came in with a team of pediatricians and said BTW

your Daughter has PLAGIO and CMT(congentail tortacolis... GREAT!!!! AWESOME!

just what i wanted to hear yeah know!They gave me no info on the IP or the

PLAGIO or CMT just sent me with a note to the pediatrician. I looked it up on my

own and was horrified! about the IP TRUST ME THOSE DOCTORS got to know me well

over the last month... I immediately took Sophia to see a Genetics doctor her

DNA is at MAYO Clinic we are waiting for the results. The FDA does not allow DNA

sequencing in the USA, however there are tests to see which stands are missing

from the X gene with this particular condition is typically 4 threw 10. It

affects the Hair, nails, skin and can affect the central Nervous system. They

have assured me at childrens my daughters case is mild but we are keeping a

close eye on it. Her symptoms have disappeared pretty much for the most part.

Her retinal and optic nerves are fine indicating no problems with the central

nervous system PRASIE GOD! I am truly blessed this was not Auto immune issue.

Second question My first Child is a MALE they do not survive with this x gene

mutation.. Safe to say HE DOES NOT have IT! I never had any miscarriages either

which impressed this professor at Northwestern, HOWEVER my sibling had MANY they

believe all three of my sisters are carriers of this mutation we got it from our

mother! Both sisters have daughter unaffected. My Sophia was not so

lucky:((((((( I am hear if you need support I did not sleep for the last month

spent many nights crying uncertain of what Sophia future held! I am armed with

knowledge.. xoxoxox This particular mutation is most common in females not

males...

>

> Aww momma *hugs*

>

> I wouldn't pay for a scan. Too many places do it for free. I maxed out my

credit

> card tbh Yes, it hurt a lot. But I made that choice, not saying you

should.

> She's young so you have a few months to save up or try repositioning. You can

> ask your doctor for a referral to a cranial center if their insurance covers

it.

> That's the route we went and they gave us the script. At Hanger they offer a

> payment plan and discount for people paying out of pocket. There are a few

> facebook groups that are trying to start up programs to help pay for these

> things but I don't think any have really gotten off the ground yet :/

>

> May I ask what led to the fragile x dx? My baby is getting tested for it in a

> few months and I am very nervous about it. Do both of your babies have it?

>

> Deep breaths. She's young. I would definately look up all the brands DOC,

> Starband, Hanger in your area and get quotes from them and ask about discounts

> and paayment plans if insurance doesn't pay for it. I was reading some

insurance

> companies make you appeal three times before actually reading the paperwork.

:/

>

>

> There are also special pillows you can buy to help reshape the head that I

> remember seeing searching one day and as young as she is that might help and

> maybe keep it down to only one helmet?

>

>

> I'm really sorry for what you are going through right now but forge through

like

> the momma bear I know you are. It'll be ok.

>

>

>

>

>

>

>

> ________________________________

> From: <amanda_amburgey@...>

> Plagiocephaly

> Sent: Thu, January 6, 2011 7:56:24 AM

> Subject: affording a band or helmet

>

>

> What do parents do that can not afford the bands? Insurance does not cover

them

> in every case and DocBand Cranial Tech does not accept IL ALL KIDS or

IPA...How

> do I know the medical company making the band or helmet knows what they are

> doing. They don't all take digital scans or images and i have read some

horrific

> stories about deforming the head even further. Not sure what families are

> suppose to do when they can not afford the device. I don't want to be

> mis-understood because I have tried Childrens Hospital and Shirners. Shirners

> won't treat PLAGIO. It's too costly according to Shirners Hospital and

Childrens

> wants 300 for scan and god only knows what for the helmet...Just wondering if

> anyone else has had this problem and if there is a way to get help? I don't

> expect it for free.. I KNOW our family can not afford much for the cost of

> treatment however though... I am scared for my daughter. I am kind of lost all

> together. I have read a lot of contradictory statements regarding the

> combination of the CMT and the Plagio. My daughters doctor does not believe in

> helmets. My daughter just turned 3 months she was diagnosed during a visit to

> Childrens for what we found out to be a X gene mutation. Her doctor did not

> catch any of the three conditions:( I might add he has not been very helpful

> with any of it either. We are going to PT right now and are struggling with

some

> issues. That's probably a topic for another post.. any info on aide is

> appreciated for the helmets and bands! How do we know if she needs it? Her

> doctor won't do what the therapist suggested and won't give me the proper

> referral... I am thinking it's time to change Pediatricians again! UGGGHHH

>

> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

>

[Guest guest]

Wednesdays therapy appt reveled I over corrected her in two weeks time CAN U

BELIEVE THAT! She now has issues on both sides with the CMT.. I am aggressively

positioning her. equal time on each side.. its rough with the CMT on both sides

now:( thanks for the post:)))There is no way I can afford care credit or the

interest. My insurance will cover some places... I am looking into it and she

has appt with new doctor next week! I also forgot to add my Daughter is seeing a

Ortho out of Shriners in the coming month we hope to hear on the 19th from the

Chief of staff of the hospital on appt date however they don't treat the plagio

in their plastics dept. THEY SAID ITS TOO COSTLY! She has the plagio because of

her tortacolis issue:( It very difficult to correct when they actually have a

muscle problem in their neck. She is going to therapy and I spend 6 hours a day

with her doing the recommendations exercises stretches etc. ITS A LOT OF WORK

but she is worth it:)I was able to get the appt at Shirners with out the help of

her Pedi!

>

> >

> >

> > What do parents do that can not afford the bands? Insurance does not cover

> > them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or

> > IPA...How do I know the medical company making the band or helmet knows what

> > they are doing. They don't all take digital scans or images and i have read

> > some horrific stories about deforming the head even further. Not sure what

> > families are suppose to do when they can not afford the device. I don't want

> > to be mis-understood because I have tried Childrens Hospital and Shirners.

> > Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital

> > and Childrens wants 300 for scan and god only knows what for the

> > helmet...Just wondering if anyone else has had this problem and if there is

> > a way to get help? I don't expect it for free.. I KNOW our family can not

> > afford much for the cost of treatment however though... I am scared for my

> > daughter. I am kind of lost all together. I have read a lot of contradictory

> > statements regarding the combination of the CMT and the Plagio. My daughters

> > doctor does not believe in helmets. My daughter just turned 3 months she was

> > diagnosed during a visit to Childrens for what we found out to be a X gene

> > mutation. Her doctor did not catch any of the three conditions:( I might add

> > he has not been very helpful with any of it either. We are going to PT right

> > now and are struggling with some issues. That's probably a topic for another

> > post.. any info on aide is appreciated for the helmets and bands! How do we

> > know if she needs it? Her doctor won't do what the therapist suggested and

> > won't give me the proper referral... I am thinking it's time to change

> > Pediatricians again! UGGGHHH

> >

> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!

> >

> >

> >

>

>

>

> --

> -mommy to Emma, Becca, ,

> , , and Leah

>

[Guest guest]

FOUND HANGER HELMETS LESS THEN 30 MILES FROM MY HOME THANK YOU THANK YOU THANK

YOU..( I CRIED)!!! I just hope they are good!!!!and have a good fitter at this

location! I will be calling to see what the process it today!

> >

> > What do parents do that can not afford the bands? Insurance does not cover

them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or

IPA...How do I know the medical company making the band or helmet knows what

they are doing. They don't all take digital scans or images and i have read some

horrific stories about deforming the head even further. Not sure what families

are suppose to do when they can not afford the device. I don't want to be

mis-understood because I have tried Childrens Hospital and Shirners. Shirners

won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

wants 300 for scan and god only knows what for the helmet...Just wondering if

anyone else has had this problem and if there is a way to get help? I don't

expect it for free.. I KNOW our family can not afford much for the cost of

treatment however though... I am scared for my daughter. I am kind of lost all

together. I have read a lot of contradictory statements regarding the

combination of the CMT and the Plagio. My daughters doctor does not believe in

helmets. My daughter just turned 3 months she was diagnosed during a visit to

Childrens for what we found out to be a X gene mutation. Her doctor did not

catch any of the three conditions:( I might add he has not been very helpful

with any of it either. We are going to PT right now and are struggling with some

issues. That's probably a topic for another post.. any info on aide is

appreciated for the helmets and bands! How do we know if she needs it? Her

doctor won't do what the therapist suggested and won't give me the proper

referral... I am thinking it's time to change Pediatricians again! UGGGHHH

> >

> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!

> >

>

[Guest guest]

many do not agree, but I can tell you that Chiropractic care did more for my Daughter's Tort in one month than 7 months of therapy did with all the awful stretching!!

I would caution you to seek one that does Pediatric Chiropractic and to interview them first!

Re: affording a band or helmet

Wednesdays therapy appt reveled I over corrected her in two weeks time CAN U BELIEVE THAT! She now has issues on both sides with the CMT.. I am aggressively positioning her. equal time on each side.. its rough with the CMT on both sides now:( thanks for the post:)))There is no way I can afford care credit or the interest. My insurance will cover some places... I am looking into it and she has appt with new doctor next week! I also forgot to add my Daughter is seeing a Ortho out of Shriners in the coming month we hope to hear on the 19th from the Chief of staff of the hospital on appt date however they don't treat the plagio in their plastics dept. THEY SAID ITS TOO COSTLY! She has the plagio because of her tortacolis issue:( It very difficult to correct when they actually have a muscle problem in their neck. She is going to therapy and I spend 6 hours a day with her doing the recommendations exercises stretches etc. ITS A LOT OF WORK but she is worth it:)I was able to get the appt at Shirners with out the help of her Pedi!> > >> >> > What do parents do that can not afford the bands? Insurance does not cover> > them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or> > IPA...How do I know the medical company making the band or helmet knows what> > they are doing. They don't all take digital scans or images and i have read> > some horrific stories about deforming the head even further. Not sure what> > families are suppose to do when they can not afford the device. I don't want> > to be mis-understood because I have tried Childrens Hospital and Shirners.> > Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital> > and Childrens wants 300 for scan and god only knows what for the> > helmet...Just wondering if anyone else has had this problem and if there is> > a way to get help? I don't expect it for free.. I KNOW our family can not> > afford much for the cost of treatment however though... I am scared for my> > daughter. I am kind of lost all together. I have read a lot of contradictory> > statements regarding the combination of the CMT and the Plagio. My daughters> > doctor does not believe in helmets. My daughter just turned 3 months she was> > diagnosed during a visit to Childrens for what we found out to be a X gene> > mutation. Her doctor did not catch any of the three conditions:( I might add> > he has not been very helpful with any of it either. We are going to PT right> > now and are struggling with some issues. That's probably a topic for another> > post.. any info on aide is appreciated for the helmets and bands! How do we> > know if she needs it? Her doctor won't do what the therapist suggested and> > won't give me the proper referral... I am thinking it's time to change> > Pediatricians again! UGGGHHH> >> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!> >> > > >> > > > -- > -mommy to Emma, Becca, ,> , , and Leah>

[Guest guest]

Thank you very much. I'm not sure if that is what they are testing her for or if it's something else. She does have rashes all over her body and is always covered in steroid cream ugh. I do remember them saying most likely it's inherited on the female side. So I was worried about you know.. our future kids and if that's no longer possible. I have a LOT of researching to do on this. 2 more months to worry about it :/ Come to think of it there are mostly females in my families and a few sterile. Her eyes appear to be fine but she has a little hearing loss and global delays. So I might be asking questions later. One problem at a time. :/kimFrom: <amanda_amburgey@...>Plagiocephaly Sent: Fri, January 7, 2011 5:31:41 AMSubject: Re: affording a band or helmet

Are you asking about her X gene mutation?

http://en.wikipedia.org/wiki/Incontinentia_pigmenti

She was born with blisters on her wrists and the several strange body rashes appeared. Instead of the doctors and the hospital my OB included sending her to Childrens ASAP they took a conservative approach and let it manifest till they did a biopsy and still had no answers. Local dermatologist handled it the first two months with no results..She referred us along with the pediatrician to Childrens in Chicago. They had a solid diagnoses with in MINUTES! Then the head professor out of NORTHWESTERN came in with a team of pediatricians and said BTW your Daughter has PLAGIO and CMT(congentail tortacolis... GREAT!!!! AWESOME! just what i wanted to hear yeah know!They gave me no info on the IP or the PLAGIO or CMT just sent me with a note to the pediatrician. I looked it up on my own and was horrified! about the IP TRUST ME THOSE DOCTORS got to know me well over the last month... I immediately took Sophia to see a Genetics doctor her DNA is at MAYO Clinic we

are waiting for the results. The FDA does not allow DNA sequencing in the USA, however there are tests to see which stands are missing from the X gene with this particular condition is typically 4 threw 10. It affects the Hair, nails, skin and can affect the central Nervous system. They have assured me at childrens my daughters case is mild but we are keeping a close eye on it. Her symptoms have disappeared pretty much for the most part. Her retinal and optic nerves are fine indicating no problems with the central nervous system PRASIE GOD! I am truly blessed this was not Auto immune issue. Second question My first Child is a MALE they do not survive with this x gene mutation.. Safe to say HE DOES NOT have IT! I never had any miscarriages either which impressed this professor at Northwestern, HOWEVER my sibling had MANY they believe all three of my sisters are carriers of this mutation we got it from our mother! Both sisters have daughter unaffected. My

Sophia was not so lucky:((((((( I am hear if you need support I did not sleep for the last month spent many nights crying uncertain of what Sophia future held! I am armed with knowledge.. xoxoxox This particular mutation is most common in females not males...

>

> Aww momma *hugs*

>

> I wouldn't pay for a scan. Too many places do it for free. I maxed out my credit

> card tbh Yes, it hurt a lot. But I made that choice, not saying you should.

> She's young so you have a few months to save up or try repositioning. You can

> ask your doctor for a referral to a cranial center if their insurance covers it.

> That's the route we went and they gave us the script. At Hanger they offer a

> payment plan and discount for people paying out of pocket. There are a few

> facebook groups that are trying to start up programs to help pay for these

> things but I don't think any have really gotten off the ground yet :/

>

> May I ask what led to the fragile x dx? My baby is getting tested for it in a

> few months and I am very nervous about it. Do both of your babies have it?

>

> Deep breaths. She's young. I would definately look up all the brands DOC,

> Starband, Hanger in your area and get quotes from them and ask about discounts

> and paayment plans if insurance doesn't pay for it. I was reading some insurance

> companies make you appeal three times before actually reading the paperwork. :/

>

>

> There are also special pillows you can buy to help reshape the head that I

> remember seeing searching one day and as young as she is that might help and

> maybe keep it down to only one helmet?

>

>

> I'm really sorry for what you are going through right now but forge through like

> the momma bear I know you are. It'll be ok.

>

>

>

>

>

>

>

> ________________________________

> From: <amanda_amburgey@...>

> Plagiocephaly

> Sent: Thu, January 6, 2011 7:56:24 AM

> Subject: affording a band or helmet

>

>

> What do parents do that can not afford the bands? Insurance does not cover them

> in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How

> do I know the medical company making the band or helmet knows what they are

> doing. They don't all take digital scans or images and i have read some horrific

> stories about deforming the head even further. Not sure what families are

> suppose to do when they can not afford the device. I don't want to be

> mis-understood because I have tried Childrens Hospital and Shirners. Shirners

> won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

> wants 300 for scan and god only knows what for the helmet...Just wondering if

> anyone else has had this problem and if there is a way to get help? I don't

> expect it for free.. I KNOW our family can not afford much for the cost of

> treatment however though... I am scared for my daughter. I am kind of lost all

> together. I have read a lot of contradictory statements regarding the

> combination of the CMT and the Plagio. My daughters doctor does not believe in

> helmets. My daughter just turned 3 months she was diagnosed during a visit to

> Childrens for what we found out to be a X gene mutation. Her doctor did not

> catch any of the three conditions:( I might add he has not been very helpful

> with any of it either. We are going to PT right now and are struggling with some

> issues. That's probably a topic for another post.. any info on aide is

> appreciated for the helmets and bands! How do we know if she needs it? Her

> doctor won't do what the therapist suggested and won't give me the proper

> referral... I am thinking it's time to change Pediatricians again! UGGGHHH

>

> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

>

[Guest guest]

My Hanger did a digital picture. they put a stocking cap on her head and used a supermarket scanner looking device and went up and down her head. Not painful and a little difficult if you're kid is a wriggler but no big deal. I think they then send the email out to the company who actually makes them and it was ready in maybe 2 weeks. the hat appears to be made of styrofoam and is light weight. And we got to pick out a design for free. Our hat is purple with large butterflies on it but I guess the others come in plain white so you can put your own design on them. I could have chose white but the purple was pretty.Thank goodness for the times and scanning. paper macheting a baby's head looks not so fun.From: <amanda_amburgey@...>Plagiocephaly Sent: Fri, January 7, 2011 4:38:29 AMSubject: Re: affording a band or helmet

Do you know much about Hanger? Where are they located. Do they have a doctor on staff??? or a board certified orthasist? I am alittle afraid of these orthasist's...How do they take their molds? I guess my real question should be whats the most common practice for fitting a child for a mold? I know some do scans and digital images.. Thanks so much for the INFORMATION... I totally appreciate it.

> >

> > What do parents do that can not afford the bands? Insurance does not cover them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How do I know the medical company making the band or helmet knows what they are doing. They don't all take digital scans or images and i have read some horrific stories about deforming the head even further. Not sure what families are suppose to do when they can not afford the device. I don't want to be mis-understood because I have tried Childrens Hospital and Shirners. Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens wants 300 for scan and god only knows what for the helmet...Just wondering if anyone else has had this problem and if there is a way to get help? I don't expect it for free.. I KNOW our family can not afford much for the cost of treatment however though... I am scared for my daughter. I am kind of lost all together. I have read a lot of

contradictory statements regarding the combination of the CMT and the Plagio. My daughters doctor does not believe in helmets. My daughter just turned 3 months she was diagnosed during a visit to Childrens for what we found out to be a X gene mutation. Her doctor did not catch any of the three conditions:( I might add he has not been very helpful with any of it either. We are going to PT right now and are struggling with some issues. That's probably a topic for another post.. any info on aide is appreciated for the helmets and bands! How do we know if she needs it? Her doctor won't do what the therapist suggested and won't give me the proper referral... I am thinking it's time to change Pediatricians again! UGGGHHH

> >

> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!

> >

>

[Guest guest]

Aggressive/obsessive repositioning until she is 6 months old then you pretty much have to get the helmet if you want to fix it fast.

That gives you 3 months to save up/research brands/and fight to get your helmet covered. Estrella Moeller

From: critter lover <tinsel2003@...>Plagiocephaly Sent: Thu, January 6, 2011 9:30:07 AMSubject: Re: affording a band or helmet

Aww momma *hugs*I wouldn't pay for a scan. Too many places do it for free. I maxed out my credit card tbh Yes, it hurt a lot. But I made that choice, not saying you should. She's young so you have a few months to save up or try repositioning. You can ask your doctor for a referral to a cranial center if their insurance covers it. That's the route we went and they gave us the script. At Hanger they offer a payment plan and discount for people paying out of pocket. There are a few facebook groups that are trying to start up programs to help pay for these things but I don't think any have really gotten off the ground yet :/May I ask what led to the fragile x dx? My baby is getting tested for it in a few months and I am very nervous about it. Do both of your babies have it?Deep breaths. She's young. I would definately look up all the brands

DOC, Starband, Hanger in your area and get quotes from them and ask about discounts and paayment plans if insurance doesn't pay for it. I was reading some insurance companies make you appeal three times before actually reading the paperwork. :/ There are also special pillows you can buy to help reshape the head that I remember seeing searching one day and as young as she is that might help and maybe keep it down to only one helmet? I'm really sorry for what you are going through right now but forge through like the momma bear I know you are. It'll be ok.

From: <amanda_amburgey@...>Plagiocephaly Sent: Thu, January 6, 2011 7:56:24 AMSubject: affording a band or helmet

What do parents do that can not afford the bands? Insurance does not cover them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How do I know the medical company making the band or helmet knows what they are doing. They don't all take digital scans or images and i have read some horrific stories about deforming the head even further. Not sure what families are suppose to do when they can not afford the device. I don't want to be mis-understood because I have tried Childrens Hospital and Shirners. Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens wants 300 for scan and god only knows what for the helmet...Just wondering if anyone else has had this problem and if there is a way to get help? I don't expect it for free.. I KNOW our family can not afford much for the cost of treatment however though... I am scared for my daughter. I am kind of lost all together. I have read a lot of

contradictory statements regarding the combination of the CMT and the Plagio. My daughters doctor does not believe in helmets. My daughter just turned 3 months she was diagnosed during a visit to Childrens for what we found out to be a X gene mutation. Her doctor did not catch any of the three conditions:( I might add he has not been very helpful with any of it either. We are going to PT right now and are struggling with some issues. That's probably a topic for another post.. any info on aide is appreciated for the helmets and bands! How do we know if she needs it? Her doctor won't do what the therapist suggested and won't give me the proper referral... I am thinking it's time to change Pediatricians again! UGGGHHHTOTALLY LOST MOTHER OF TWO IN CHICAGO!

[Guest guest]

Kim,We too where given a host of steroid creams and anti fungal's NONE OF IT WORKED!!! In fact it made the problem worse..I noticed it cleared up and did best when I washed it... WEIRD I know but that was our experience... I have pictures if you would like to see I would be happy to SHARE....HOW old is your daughter? My experience with the Steriod creams were not good it burned her skin she peeled like she had sunburn and the rash spread like wild fire... outside of the blisters and warty like lesions she had what appeared to be pricky heat that later turned into a dark like marbling swirl light tan.. this is the pigmentation and the third stage of the rash. Different parts of her body all had their own time frames for each stage...Why two months? Is that how long out they are in appointments... I have friend dealing with a son with GLOBAL delays I

don't even know what that means? I am so sorry to hear of your situation but KNOW THIS.... YOU ARE NOT ALONE!)))From: critter lover <tinsel2003@...>Subject: Re: affording a band or helmetPlagiocephaly Date: Friday, January 7, 2011, 6:51 PM

Thank you very much. I'm not sure if that is what they are testing her for or if it's something else. She does have rashes all over her body and is always covered in steroid cream ugh. I do remember them saying most likely it's inherited on the female side. So I was worried about you know.. our future kids and if that's no longer possible. I have a LOT of researching to do on this. 2 more months to worry about it :/ Come to think of it there are mostly females in my families and a few sterile. Her eyes appear to be fine but she has a little hearing loss and global delays. So I might be asking questions later. One problem at a time. :/kimFrom: <amanda_amburgey@...>Plagiocephaly Sent: Fri, January 7, 2011 5:31:41 AMSubject: Re: affording a band or helmet

Are you asking about her X gene mutation?

http://en.wikipedia.org/wiki/Incontinentia_pigmenti

She was born with blisters on her wrists and the several strange body rashes appeared. Instead of the doctors and the hospital my OB included sending her to Childrens ASAP they took a conservative approach and let it manifest till they did a biopsy and still had no answers. Local dermatologist handled it the first two months with no results..She referred us along with the pediatrician to Childrens in Chicago. They had a solid diagnoses with in MINUTES! Then the head professor out of NORTHWESTERN came in with a team of pediatricians and said BTW your Daughter has PLAGIO and CMT(congentail tortacolis... GREAT!!!! AWESOME! just what i wanted to hear yeah know!They gave me no info on the IP or the PLAGIO or CMT just sent me with a note to the pediatrician. I looked it up on my own and was horrified! about the IP TRUST ME THOSE DOCTORS got to know me well over the last month... I immediately took Sophia to see a Genetics doctor her DNA is at MAYO Clinic we

are waiting for the results. The FDA does not allow DNA sequencing in the USA, however there are tests to see which stands are missing from the X gene with this particular condition is typically 4 threw 10. It affects the Hair, nails, skin and can affect the central Nervous system. They have assured me at childrens my daughters case is mild but we are keeping a close eye on it. Her symptoms have disappeared pretty much for the most part. Her retinal and optic nerves are fine indicating no problems with the central nervous system PRASIE GOD! I am truly blessed this was not Auto immune issue. Second question My first Child is a MALE they do not survive with this x gene mutation.. Safe to say HE DOES NOT have IT! I never had any miscarriages either which impressed this professor at Northwestern, HOWEVER my sibling had MANY they believe all three of my sisters are carriers of this mutation we got it from our mother! Both sisters have daughter unaffected. My

Sophia was not so lucky:((((((( I am hear if you need support I did not sleep for the last month spent many nights crying uncertain of what Sophia future held! I am armed with knowledge.. xoxoxox This particular mutation is most common in females not males...

>

> Aww momma *hugs*

>

> I wouldn't pay for a scan. Too many places do it for free. I maxed out my credit

> card tbh Yes, it hurt a lot. But I made that choice, not saying you should.

> She's young so you have a few months to save up or try repositioning. You can

> ask your doctor for a referral to a cranial center if their insurance covers it.

> That's the route we went and they gave us the script. At Hanger they offer a

> payment plan and discount for people paying out of pocket. There are a few

> facebook groups that are trying to start up programs to help pay for these

> things but I don't think any have really gotten off the ground yet :/

>

> May I ask what led to the fragile x dx? My baby is getting tested for it in a

> few months and I am very nervous about it. Do both of your babies have it?

>

> Deep breaths. She's young. I would definately look up all the brands DOC,

> Starband, Hanger in your area and get quotes from them and ask about discounts

> and paayment plans if insurance doesn't pay for it. I was reading some insurance

> companies make you appeal three times before actually reading the paperwork. :/

>

>

> There are also special pillows you can buy to help reshape the head that I

> remember seeing searching one day and as young as she is that might help and

> maybe keep it down to only one helmet?

>

>

> I'm really sorry for what you are going through right now but forge through like

> the momma bear I know you are. It'll be ok.

>

>

>

>

>

>

>

> ________________________________

> From: <amanda_amburgey@...>

> Plagiocephaly

> Sent: Thu, January 6, 2011 7:56:24 AM

> Subject: affording a band or helmet

>

>

> What do parents do that can not afford the bands? Insurance does not cover them

> in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How

> do I know the medical company making the band or helmet knows what they are

> doing. They don't all take digital scans or images and i have read some horrific

> stories about deforming the head even further. Not sure what families are

> suppose to do when they can not afford the device. I don't want to be

> mis-understood because I have tried Childrens Hospital and Shirners. Shirners

> won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

> wants 300 for scan and god only knows what for the helmet...Just wondering if

> anyone else has had this problem and if there is a way to get help? I don't

> expect it for free.. I KNOW our family can not afford much for the cost of

> treatment however though... I am scared for my daughter. I am kind of lost all

> together. I have read a lot of contradictory statements regarding the

> combination of the CMT and the Plagio. My daughters doctor does not believe in

> helmets. My daughter just turned 3 months she was diagnosed during a visit to

> Childrens for what we found out to be a X gene mutation. Her doctor did not

> catch any of the three conditions:( I might add he has not been very helpful

> with any of it either. We are going to PT right now and are struggling with some

> issues. That's probably a topic for another post.. any info on aide is

> appreciated for the helmets and bands! How do we know if she needs it? Her

> doctor won't do what the therapist suggested and won't give me the proper

> referral... I am thinking it's time to change Pediatricians again! UGGGHHH

>

> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

>

[Guest guest]

Seriously? I been considering this! Insurance wont cover it but I have excellent working relationship with a very accredited Chiro in my area!From: mrshooper05@... <mrshooper05@...>Subject: Re: affording a band or helmetPlagiocephaly Date: Friday, January 7, 2011, 4:37 PM

many do not agree, but I can tell you that Chiropractic care did more for my Daughter's Tort in one month than 7 months of therapy did with all the awful stretching!!

I would caution you to seek one that does Pediatric Chiropractic and to interview them first!

Re: affording a band or helmet

Wednesdays therapy appt reveled I over corrected her in two weeks time CAN U BELIEVE THAT! She now has issues on both sides with the CMT.. I am aggressively positioning her. equal time on each side.. its rough with the CMT on both sides now:( thanks for the post:)))There is no way I can afford care credit or the interest. My insurance will cover some places... I am looking into it and she has appt with new doctor next week! I also forgot to add my Daughter is seeing a Ortho out of Shriners in the coming month we hope to hear on the 19th from the Chief of staff of the hospital on appt date however they don't treat the plagio in their plastics dept. THEY SAID ITS TOO COSTLY! She has the plagio because of her tortacolis issue:( It very difficult to correct when they actually have a muscle problem in their neck. She is going to therapy and I spend 6 hours a day with her doing the recommendations exercises stretches etc. ITS A LOT OF WORK but she is worth

it:)I was able to get the appt at Shirners with out the help of her Pedi!> > >> >> > What do parents do that can not afford the bands? Insurance does not cover> > them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or> > IPA...How do I know the medical company making the band or helmet knows what> > they are doing. They

don't all take digital scans or images and i have read> > some horrific stories about deforming the head even further. Not sure what> > families are suppose to do when they can not afford the device. I don't want> > to be mis-understood because I have tried Childrens Hospital and Shirners.> > Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital> > and Childrens wants 300 for scan and god only knows what for the> > helmet...Just wondering if anyone else has had this problem and if there is> > a way to get help? I don't expect it for free.. I KNOW our family can not> > afford much for the cost of treatment however though... I am scared for my> > daughter. I am kind of lost all together. I have read a lot of contradictory> > statements regarding the combination of the CMT and the Plagio. My daughters> > doctor does not

believe in helmets. My daughter just turned 3 months she was> > diagnosed during a visit to Childrens for what we found out to be a X gene> > mutation. Her doctor did not catch any of the three conditions:( I might add> > he has not been very helpful with any of it either. We are going to PT right> > now and are struggling with some issues. That's probably a topic for another> > post.. any info on aide is appreciated for the helmets and bands! How do we> > know if she needs it? Her doctor won't do what the therapist suggested and> > won't give me the proper referral... I am thinking it's time to change> > Pediatricians again! UGGGHHH> >> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!> >> > > >> > > > -- > -mommy to Emma, Becca, ,> , , and Leah>

[Guest guest]

a friend of mine dealt with pt for a year (the whole time in a docband) before they started with a chiro and they saw much better results with tort and plagio once they started chiro too

On Fri, Jan 7, 2011 at 11:37 AM, <mrshooper05@...> wrote:

 

many do not agree, but I can tell you that Chiropractic care did more for my Daughter's Tort in one month than 7 months of therapy did with all the awful stretching!!

I would caution you to seek one that does Pediatric Chiropractic and to interview them first!

 

Re: affording a band or helmet 

Wednesdays therapy appt reveled I over corrected her in two weeks time CAN U BELIEVE THAT! She now has issues on both sides with the CMT.. I am aggressively positioning her. equal time on each side.. its rough with the CMT on both sides now:( thanks for the post:)))There is no way I can afford care credit or the interest. My insurance will cover some places... I am looking into it and she has appt with new doctor next week! I also forgot to add my Daughter is seeing a Ortho out of Shriners in the coming month we hope to hear on the 19th from the Chief of staff of the hospital on appt date however they don't treat the plagio in their plastics dept. THEY SAID ITS TOO COSTLY! She has the plagio because of her tortacolis issue:( It very difficult to correct when they actually have a muscle problem in their neck. She is going to therapy and I spend 6 hours a day with her doing the recommendations exercises stretches etc. ITS A LOT OF WORK but she is worth it:)I was able to get the appt at Shirners with out the help of her Pedi!

> > >> >> > What do parents do that can not afford the bands? Insurance does not cover> > them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or> > IPA...How do I know the medical company making the band or helmet knows what

> > they are doing. They don't all take digital scans or images and i have read> > some horrific stories about deforming the head even further. Not sure what> > families are suppose to do when they can not afford the device. I don't want

> > to be mis-understood because I have tried Childrens Hospital and Shirners.> > Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital> > and Childrens wants 300 for scan and god only knows what for the

> > helmet...Just wondering if anyone else has had this problem and if there is> > a way to get help? I don't expect it for free.. I KNOW our family can not> > afford much for the cost of treatment however though... I am scared for my

> > daughter. I am kind of lost all together. I have read a lot of contradictory> > statements regarding the combination of the CMT and the Plagio. My daughters> > doctor does not believe in helmets. My daughter just turned 3 months she was

> > diagnosed during a visit to Childrens for what we found out to be a X gene> > mutation. Her doctor did not catch any of the three conditions:( I might add> > he has not been very helpful with any of it either. We are going to PT right

> > now and are struggling with some issues. That's probably a topic for another> > post.. any info on aide is appreciated for the helmets and bands! How do we> > know if she needs it? Her doctor won't do what the therapist suggested and

> > won't give me the proper referral... I am thinking it's time to change> > Pediatricians again! UGGGHHH> >> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!> >> >

> >> > > > -- > -mommy to Emma, Becca, ,> , , and Leah>

--

-mommy to Emma, Becca, , , , and Leah

[Guest guest]

here is what the genetics doctor gave us...might be helpful in answering your questions regarding what roles genes play in x gene disorders. I forgot to mention I had a positive QUAD screen... But I waived Amnio I was 20 week already... 50/50 chance of my daughter passing this on to hers and so on and so fourth. I anticipate her to lead a very normal life.. I will encourage her to have children also... Sophia is the only one affected on my side of the family we have many females and female children.....From: critter lover <tinsel2003@...>Subject: Re: affording a band or helmetPlagiocephaly Date: Friday, January 7,

2011, 6:51 PM

Thank you very much. I'm not sure if that is what they are testing her for or if it's something else. She does have rashes all over her body and is always covered in steroid cream ugh. I do remember them saying most likely it's inherited on the female side. So I was worried about you know.. our future kids and if that's no longer possible. I have a LOT of researching to do on this. 2 more months to worry about it :/ Come to think of it there are mostly females in my families and a few sterile. Her eyes appear to be fine but she has a little hearing loss and global delays. So I might be asking questions later. One problem at a time. :/kimFrom: <amanda_amburgey@...>Plagiocephaly Sent: Fri, January 7, 2011 5:31:41 AMSubject: Re: affording a band or helmet

Are you asking about her X gene mutation?

http://en.wikipedia.org/wiki/Incontinentia_pigmenti

She was born with blisters on her wrists and the several strange body rashes appeared. Instead of the doctors and the hospital my OB included sending her to Childrens ASAP they took a conservative approach and let it manifest till they did a biopsy and still had no answers. Local dermatologist handled it the first two months with no results..She referred us along with the pediatrician to Childrens in Chicago. They had a solid diagnoses with in MINUTES! Then the head professor out of NORTHWESTERN came in with a team of pediatricians and said BTW your Daughter has PLAGIO and CMT(congentail tortacolis... GREAT!!!! AWESOME! just what i wanted to hear yeah know!They gave me no info on the IP or the PLAGIO or CMT just sent me with a note to the pediatrician. I looked it up on my own and was horrified! about the IP TRUST ME THOSE DOCTORS got to know me well over the last month... I immediately took Sophia to see a Genetics doctor her DNA is at MAYO Clinic we

are waiting for the results. The FDA does not allow DNA sequencing in the USA, however there are tests to see which stands are missing from the X gene with this particular condition is typically 4 threw 10. It affects the Hair, nails, skin and can affect the central Nervous system. They have assured me at childrens my daughters case is mild but we are keeping a close eye on it. Her symptoms have disappeared pretty much for the most part. Her retinal and optic nerves are fine indicating no problems with the central nervous system PRASIE GOD! I am truly blessed this was not Auto immune issue. Second question My first Child is a MALE they do not survive with this x gene mutation.. Safe to say HE DOES NOT have IT! I never had any miscarriages either which impressed this professor at Northwestern, HOWEVER my sibling had MANY they believe all three of my sisters are carriers of this mutation we got it from our mother! Both sisters have daughter unaffected. My

Sophia was not so lucky:((((((( I am hear if you need support I did not sleep for the last month spent many nights crying uncertain of what Sophia future held! I am armed with knowledge.. xoxoxox This particular mutation is most common in females not males...

>

> Aww momma *hugs*

>

> I wouldn't pay for a scan. Too many places do it for free. I maxed out my credit

> card tbh Yes, it hurt a lot. But I made that choice, not saying you should.

> She's young so you have a few months to save up or try repositioning. You can

> ask your doctor for a referral to a cranial center if their insurance covers it.

> That's the route we went and they gave us the script. At Hanger they offer a

> payment plan and discount for people paying out of pocket. There are a few

> facebook groups that are trying to start up programs to help pay for these

> things but I don't think any have really gotten off the ground yet :/

>

> May I ask what led to the fragile x dx? My baby is getting tested for it in a

> few months and I am very nervous about it. Do both of your babies have it?

>

> Deep breaths. She's young. I would definately look up all the brands DOC,

> Starband, Hanger in your area and get quotes from them and ask about discounts

> and paayment plans if insurance doesn't pay for it. I was reading some insurance

> companies make you appeal three times before actually reading the paperwork. :/

>

>

> There are also special pillows you can buy to help reshape the head that I

> remember seeing searching one day and as young as she is that might help and

> maybe keep it down to only one helmet?

>

>

> I'm really sorry for what you are going through right now but forge through like

> the momma bear I know you are. It'll be ok.

>

>

>

>

>

>

>

> ________________________________

> From: <amanda_amburgey@...>

> Plagiocephaly

> Sent: Thu, January 6, 2011 7:56:24 AM

> Subject: affording a band or helmet

>

>

> What do parents do that can not afford the bands? Insurance does not cover them

> in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How

> do I know the medical company making the band or helmet knows what they are

> doing. They don't all take digital scans or images and i have read some horrific

> stories about deforming the head even further. Not sure what families are

> suppose to do when they can not afford the device. I don't want to be

> mis-understood because I have tried Childrens Hospital and Shirners. Shirners

> won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens

> wants 300 for scan and god only knows what for the helmet...Just wondering if

> anyone else has had this problem and if there is a way to get help? I don't

> expect it for free.. I KNOW our family can not afford much for the cost of

> treatment however though... I am scared for my daughter. I am kind of lost all

> together. I have read a lot of contradictory statements regarding the

> combination of the CMT and the Plagio. My daughters doctor does not believe in

> helmets. My daughter just turned 3 months she was diagnosed during a visit to

> Childrens for what we found out to be a X gene mutation. Her doctor did not

> catch any of the three conditions:( I might add he has not been very helpful

> with any of it either. We are going to PT right now and are struggling with some

> issues. That's probably a topic for another post.. any info on aide is

> appreciated for the helmets and bands! How do we know if she needs it? Her

> doctor won't do what the therapist suggested and won't give me the proper

> referral... I am thinking it's time to change Pediatricians again! UGGGHHH

>

> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

>

[Guest guest]

Do you happen to know if IPA would cover a Chiropractor for the Congenital Muscular Tortacolis? I have not had much luck finding a Chiropractor in Network.. IL Health Connect is not very helpful:( I will pay out of pocket and submit on my own if I have a chance of it being covered. ANY INFO is appreciated! It could be a month or two before we get an appt with the pediatric orthopedic. She is 3 months old.. If we can fix it I wanna get started.. Therapy is dreadful! From: qqrykoo <qqrykoo@...>Subject: Re: affording a band or helmetPlagiocephaly Date: Friday,

January 7, 2011, 2:59 AM

AllKids Illinois is contracted with Hanger. Give them a call. Hanger helmet should be covered 100% by AllKids.

>

> What do parents do that can not afford the bands? Insurance does not cover them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or IPA...How do I know the medical company making the band or helmet knows what they are doing. They don't all take digital scans or images and i have read some horrific stories about deforming the head even further. Not sure what families are suppose to do when they can not afford the device. I don't want to be mis-understood because I have tried Childrens Hospital and Shirners. Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital and Childrens wants 300 for scan and god only knows what for the helmet...Just wondering if anyone else has had this problem and if there is a way to get help? I don't expect it for free.. I KNOW our family can not afford much for the cost of treatment however though... I am scared for my daughter. I am kind of lost all together. I have read a lot of

contradictory statements regarding the combination of the CMT and the Plagio. My daughters doctor does not believe in helmets. My daughter just turned 3 months she was diagnosed during a visit to Childrens for what we found out to be a X gene mutation. Her doctor did not catch any of the three conditions:( I might add he has not been very helpful with any of it either. We are going to PT right now and are struggling with some issues. That's probably a topic for another post.. any info on aide is appreciated for the helmets and bands! How do we know if she needs it? Her doctor won't do what the therapist suggested and won't give me the proper referral... I am thinking it's time to change Pediatricians again! UGGGHHH

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> TOTALLY LOST MOTHER OF TWO IN CHICAGO!

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[Guest guest]

In the last week of October of 2010 we were released from therapy for the 2nd time with a 5 to 8 degree tilt. That is when I started looking for another form of treatment. Now Camille has 0 tilt and we took the week of Thanksgiving and Christmas off of treatment.

We ony went once a week and like I said before there is no crying or streching involved. It is way easier. Had I known I would have went the chiropractic route first. It is less trauma for my child not to mention it was way cheaper.

Please let me know if you decide to go and what you results are.

Re: affording a band or helmet

Wednesdays therapy appt reveled I over corrected her in two weeks time CAN U BELIEVE THAT! She now has issues on both sides with the CMT.. I am aggressively positioning her. equal time on each side.. its rough with the CMT on both sides now:( thanks for the post:)))There is no way I can afford care credit or the interest. My insurance will cover some places... I am looking into it and she has appt with new doctor next week! I also forgot to add my Daughter is seeing a Ortho out of Shriners in the coming month we hope to hear on the 19th from the Chief of staff of the hospital on appt date however they don't treat the plagio in their plastics dept. THEY SAID ITS TOO COSTLY! She has the plagio because of her tortacolis issue:( It very difficult to correct when they actually have a muscle problem in their neck. She is going to therapy and I spend 6 hours a day with her doing the recommendations exercises stretches etc. ITS A LOT OF WORK but she is worth it:)I was able to get the appt at Shirners with out the help of her Pedi!> > >> >> > What do parents do that can not afford the bands? Insurance does not cover> > them in every case and DocBand Cranial Tech does not accept IL ALL KIDS or> > IPA...How do I know the medical company making the band or helmet knows what> > they are doing. They don't all take digital scans or images and i have read> > some horrific stories about deforming the head even further. Not sure what> > families are suppose to do when they can not afford the device. I don't want> > to be mis-understood because I have tried Childrens Hospital and Shirners.> > Shirners won't treat PLAGIO. It's too costly according to Shirners Hospital> > and Childrens wants 300 for scan and god only knows what for the> > helmet...Just wondering if anyone else has had this problem and if there is> > a way to get help? I don't expect it for free.. I KNOW our family can not> > afford much for the cost of treatment however though... I am scared for my> > daughter. I am kind of lost all together. I have read a lot of contradictory> > statements regarding the combination of the CMT and the Plagio. My daughters> > doctor does not believe in helmets. My daughter just turned 3 months she was> > diagnosed during a visit to Childrens for what we found out to be a X gene> > mutation. Her doctor did not catch any of the three conditions:( I might add> > he has not been very helpful with any of it either. We are going to PT right> > now and are struggling with some issues. That's probably a topic for another> > post.. any info on aide is appreciated for the helmets and bands! How do we> > know if she needs it? Her doctor won't do what the therapist suggested and> > won't give me the proper referral... I am thinking it's time to change> > Pediatricians again! UGGGHHH> >> > TOTALLY LOST MOTHER OF TWO IN CHICAGO!> >> > > >> > > > -- > -mommy to Emma, Becca, ,> , , and Leah>