New and very upset member

[Guest guest]

I am so glad to find this group. Please pardon me as I jump in and vent. We just had an appointment with a plastic surgeon (actually the Nurse Practitioner, NP). My son is nearly 14 months old and I am beyond angry. I have brought up the issue of my son's flat head at every one of his well baby visits since he was 3 months old. I was told over and over that "all babies these days have flat heads" and "prop him on his side" and "this is not a big deal". I am so upset that I listened as long as I did. After being referred to early intervention services for my son's gross motor delay --he is a big boy!-- the service coordinators and PT's all mentioned his flat head and asked if we've done anything about it. But of course at this point the correction he may get from a helmet is not as good as it would have been if he was referred when he should have been referred. We were never given the option, nothing was explained to us, our questions hardly answered. We have since fired our pediatrician and are trying to get another one. Our pediatrician went above and beyond for our son with an issue we had a week after birth so he made a great impression and seemed he would be a good practitioner for our son. Since it seems that nothing "is a big deal". So we see the Plastic Surgery NP and she had the bed side manner of a badger. She kept asking us what the PT's wanted us to do about his head. I kept telling her that we were referred to them so that they could tell us what to do. I mentioned helmet therapy. She launched into a song and dance about how she wasn't going to tell us not to do the therapy, he may not get much correction but she would write the script and we could decide. That is basically the long and short of the appointment. We walked out of there with no more information then we walked in with. Turns out our insurance doesn't cover the therapy without a letter of medical necessity, which we will hopefully be able to get but all the while the clock is ticking and we have no time to waste if we are to do this.There are so many more details that have thrown my blood pressure through the roof that I wont share as I have already written too much.Has anyone in the group ever done helmet therapy after 1 year of age? Any guidance? I am beyond choosing between brands of helmets and bands I am just trying to get anything now!!!Karin

[Guest guest]

unfortunately your story is all too common here.  And many have had good correction aftera year.  Actually if you look on cranialtech.com there is a boy on there in the before and after pics that I think started at like 19 mo old.  the other thing people here strugle with is many experts believe it is all purely cosmetic but noone can prove that so in the hopes of avoiding jaw, eye and ear problems later we do something everyone else thinks we are doing for purely cosmetic reasons (and isnt that similair to braces, people go through a lot more for braces when mostly it just helps their chewing and maybe speech if severe and costs about the same but noone would question ever doing that_)

On Wed, Apr 7, 2010 at 2:47 PM, Karin <k.marlett.c@...> wrote:

 

I am so glad to find this group. Please pardon me as I jump in and vent. We just had an appointment with a plastic surgeon (actually the Nurse Practitioner, NP). My son is nearly 14 months old and I am beyond angry. I have brought up the issue of my son's flat head at every one of his well baby visits since he was 3 months old. I was told over and over that " all babies these days have flat heads " and " prop him on his side "   and " this is not a big deal " . I am so upset that I listened as long as I did.  After being referred to early intervention services for my son's gross motor delay --he is a big boy!-- the service coordinators and PT's all mentioned his flat head and asked if we've done anything about it. But of course at this point the correction he may get from a helmet is not as good as it would have been if he was referred when he should have been referred. We were never given the option, nothing was explained to us, our questions hardly answered. We have since fired our pediatrician and are trying to get another one. Our pediatrician went above and beyond for our son with an issue we had a week after birth so he made a great impression and seemed he would be a good practitioner for our son. Since it seems that nothing " is a big deal " .

So we see the Plastic Surgery NP and she had the bed side manner of a badger. She kept asking us what the PT's wanted us to do about his head. I kept telling her that we were referred to them so that they could tell us what to do. I mentioned helmet therapy. She launched into a song and dance about how she wasn't going to tell us not to do the therapy, he may not get much correction but she would write the script and we could decide. That is basically the long and short of the appointment. We walked out of there with no more information then we walked in with. Turns out our insurance doesn't cover the therapy without a letter of medical necessity, which we will hopefully be able to get but all the while the clock is ticking and we have no time to waste if we are to do this.

There are so many more details that have thrown my blood pressure through the roof that I wont share as I have already written too much.Has anyone in the group ever done helmet therapy after 1 year of age? Any guidance? I am beyond choosing between brands of helmets and bands I am just trying to get anything now!!!

Karin

-- -mommy to Emma, Becca, , and Girl Scout cookies are coming!

[Guest guest]

Welcome Karin! You have found the right place to vent! Too many of us have found drs to less than helpful and even were a roadblock in getting help for our kids.

Vent away!

That said, you should feel blessed that you got the script! Battle half won!!! Now to deal with the insurance.

Do you have a CranialTech or other band provider in your area? Make an appt asap to get that started. Your son is still within the timeframe, but a bit on the older side so the sooner the better.

Keep us posted!

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

New and very upset member

I am so glad to find this group. Please pardon me as I jump in and vent.

We just had an appointment with a plastic surgeon (actually the Nurse Practitioner, NP). My son is nearly 14 months old and I am beyond angry. I have brought up the issue of my son's flat head at every one of his well baby visits since he was 3 months old. I was told over and over that "all babies these days have flat heads" and "prop him on his side" and "this is not a big deal". I am so upset that I listened as long as I did. After being referred to early intervention services for my son's gross motor delay --he is a big boy!-- the service coordinators and PT's all mentioned his flat head and asked if we've done anything about it. But of course at this point the correction he may get from a helmet is not as good as it would have been if he was referred when he should have been referred. We were never given the option, nothing was explained to us, our questions hardly answered. We have since fired our pediatrician and are trying to get another one. Our pediatrician went above and beyond for our son with an issue we had a week after birth so he made a great impression and seemed he would be a good practitioner for our son. Since it seems that nothing "is a big deal".

So we see the Plastic Surgery NP and she had the bed side manner of a badger. She kept asking us what the PT's wanted us to do about his head. I kept telling her that we were referred to them so that they could tell us what to do. I mentioned helmet therapy. She launched into a song and dance about how she wasn't going to tell us not to do the therapy, he may not get much correction but she would write the script and we could decide. That is basically the long and short of the appointment. We walked out of there with no more information then we walked in with. Turns out our insurance doesn't cover the therapy without a letter of medical necessity, which we will hopeful

ly be able to get but all the while the clock is ticking and we have no time to waste if we are to do this.

There are so many more details that have thrown my blood pressure through the roof that I wont share as I have already written too much.

Has anyone in the group ever done helmet therapy after 1 year of age? Any guidance? I am beyond choosing between brands of helmets and bands I am just trying to get anything now!!!

Karin

[Guest guest]

Hi Karin,

I'm so sorry. I understand how you feel. Our pediatrician ignored

plagio in both our boys. The first was borderline, and probably wasn't

a helmet candidate. Our second son's head was worse, but we still

didn't know about helmets. We didn't find out until he was almost 12

months and that was only because a nice dad at my older son's gym class

gave me all the information. We've gotten a lot, but not complete,

correction from the helmet in the second year.

I would act as quickly as possible. At the same time, you want to

research and make the best decision on helmet brands. Ask this group

for recommendations in your area. Do not wait for insurance approval

and worry about that afterwards. There are also alternative treatments

such as chiro, CST, osteopathy, and NCR that help in some cases. We've

successfully tried chiro/CST and osteopathy.

You may want to join the group for older babies at

OlderPlag

If you start treating now, most likely, your son's head will improve,

and it may do so significantly. My son's head has improved quite a bit

since 15 months.

Best,

Kathy, mom to 22 months and 5.5 years

Karin wrote:

I am so glad to find this group. Please pardon me as I jump in and

vent.

We just had an appointment with a plastic surgeon (actually the Nurse

Practitioner, NP). My son is nearly 14 months old and I am beyond

angry. I have brought up the issue of my son's flat head at every one

of his well baby visits since he was 3 months old. I was told over and

over that "all babies these days have flat heads" and "prop him on his

side" and "this is not a big deal". I am so upset that I listened as

long as I did. After being referred to early intervention services for

my son's gross motor delay --he is a big boy!-- the service

coordinators and PT's all mentioned his flat head and asked if we've

done anything about it. But of course at this point the correction he

may get from a helmet is not as good as it would have been if he was

referred when he should have been referred. We were never given the

option, nothing was explained to us, our questions hardly answered. We

have since fired our pediatrician and are trying to get another one.

Our pediatrician went above and beyond for our son with an issue we had

a week after birth so he made a great impression and seemed he would be

a good practitioner for our son. Since it seems that nothing "is a big

deal".

So we see the Plastic Surgery NP and she had the bed side manner of a

badger. She kept asking us what the PT's wanted us to do about his

head. I kept telling her that we were referred to them so that they

could tell us what to do. I mentioned helmet therapy. She

launched into a song and dance about how she wasn't going to tell us

not to do the therapy, he may not get much correction but she would

write the script and we could decide. That is basically the long and

short of the appointment. We walked out of there with no more

information then we walked in with. Turns out our insurance doesn't

cover the therapy without a letter of medical necessity, which we will

hopefully be able to get but all the while the clock is ticking and we

have no time to waste if we are to do this.

There are so many more details that have thrown my blood pressure

through the roof that I wont share as I have already written too much.

Has anyone in the group ever done helmet therapy after 1 year of age?

Any guidance? I am beyond choosing between brands of helmets and bands

I am just trying to get anything now!!!

Karin

[Guest guest]

Welcome -

I was you more than 2 years ago. My son was 17 months old when he was finally

banded. Do you have a Cranial Tech near you? They have a lot of experience with

older babies, more so than most other orthos. My son wore 2 DOCBands for almost

8 months and got really good correction considering his age. His before and

after photos are in the Older Plagio Kids folder under Jake W.

I know how stressed you feel right now. It was a HUGE relief to me the moment

that band was placed on my son's head, and I hope you feel that same way. The

good news is you have the script, which really more than half the battle. Take

it to your nearest provider for an evaluation right away. He is still young

enough that you can hit a good growth spurt or 2 and get the most benefits from

a band.

Good luck! Keep us posted!

Jake-3.5 (DOCBand Grad 9/08)

>

> I am so glad to find this group. Please pardon me as I jump in and vent.

> We just had an appointment with a plastic surgeon (actually the Nurse

> Practitioner, NP). My son is nearly 14 months old and I am beyond angry.

> I have brought up the issue of my son's flat head at every one of his

> well baby visits since he was 3 months old. I was told over and over

> that " all babies these days have flat heads " and " prop him on his side "

> and " this is not a big deal " . I am so upset that I listened as long as I

> did. After being referred to early intervention services for my son's

> gross motor delay --he is a big boy!-- the service coordinators and PT's

> all mentioned his flat head and asked if we've done anything about it.

> But of course at this point the correction he may get from a helmet is

> not as good as it would have been if he was referred when he should have

> been referred. We were never given the option, nothing was explained to

> us, our questions hardly answered. We have since fired our pediatrician

> and are trying to get another one. Our pediatrician went above and

> beyond for our son with an issue we had a week after birth so he made a

> great impression and seemed he would be a good practitioner for our son.

> Since it seems that nothing " is a big deal " .

> So we see the Plastic Surgery NP and she had the bed side manner of a

> badger. She kept asking us what the PT's wanted us to do about his head.

> I kept telling her that we were referred to them so that they could tell

> us what to do. I mentioned helmet therapy. She launched into a song and

> dance about how she wasn't going to tell us not to do the therapy, he

> may not get much correction but she would write the script and we could

> decide. That is basically the long and short of the appointment. We

> walked out of there with no more information then we walked in with.

> Turns out our insurance doesn't cover the therapy without a letter of

> medical necessity, which we will hopefully be able to get but all the

> while the clock is ticking and we have no time to waste if we are to do

> this.

>

> There are so many more details that have thrown my blood pressure

> through the roof that I wont share as I have already written too much.

> Has anyone in the group ever done helmet therapy after 1 year of age?

> Any guidance? I am beyond choosing between brands of helmets and bands I

> am just trying to get anything now!!!

>

> Karin

>

[Guest guest]

Your anger is totally understandable, and something many of us have experienced.

The trick now will be to channel all that anger and turn it into activism on you

son's part! As others have suggested, I would try ASAP to get into a Cranial

Technologies or other banding office (STARband, Hanger, etc.) for an evaluation.

They will be able to talk about helmet therapy much better than the neurosurgeon

(our neurologist didn't even know the brand names of any bands...clueless) and

should give you an honest evaluation. Be kindly tenacious with all the

providers in getting what you need and in asking for appointments ASAP. I

wouldn't wait on insurance approval if it appears it's going to take a long

time--correction depends almost totally upon growth while in the band, so time

is of the essense, but you're not too late! At CT they have plenty before and

after photos of children who banded over a year old and they get good correction

too.

Good luck to you!

Mom to , DOCband 12/29-3/29

>

> I am so glad to find this group. Please pardon me as I jump in and vent.

> We just had an appointment with a plastic surgeon (actually the Nurse

> Practitioner, NP). My son is nearly 14 months old and I am beyond angry.

> I have brought up the issue of my son's flat head at every one of his

> well baby visits since he was 3 months old. I was told over and over

> that " all babies these days have flat heads " and " prop him on his side "

> and " this is not a big deal " . I am so upset that I listened as long as I

> did. After being referred to early intervention services for my son's

> gross motor delay --he is a big boy!-- the service coordinators and PT's

> all mentioned his flat head and asked if we've done anything about it.

> But of course at this point the correction he may get from a helmet is

> not as good as it would have been if he was referred when he should have

> been referred. We were never given the option, nothing was explained to

> us, our questions hardly answered. We have since fired our pediatrician

> and are trying to get another one. Our pediatrician went above and

> beyond for our son with an issue we had a week after birth so he made a

> great impression and seemed he would be a good practitioner for our son.

> Since it seems that nothing " is a big deal " .

> So we see the Plastic Surgery NP and she had the bed side manner of a

> badger. She kept asking us what the PT's wanted us to do about his head.

> I kept telling her that we were referred to them so that they could tell

> us what to do. I mentioned helmet therapy. She launched into a song and

> dance about how she wasn't going to tell us not to do the therapy, he

> may not get much correction but she would write the script and we could

> decide. That is basically the long and short of the appointment. We

> walked out of there with no more information then we walked in with.

> Turns out our insurance doesn't cover the therapy without a letter of

> medical necessity, which we will hopefully be able to get but all the

> while the clock is ticking and we have no time to waste if we are to do

> this.

>

> There are so many more details that have thrown my blood pressure

> through the roof that I wont share as I have already written too much.

> Has anyone in the group ever done helmet therapy after 1 year of age?

> Any guidance? I am beyond choosing between brands of helmets and bands I

> am just trying to get anything now!!!

>

> Karin

>

[Guest guest]

Karin,

You said, 'I am beyond choosing between brands of helmets and bands I am just

trying to get anything now!!!'

I understand your frustration. It really hurts to be in this situations. Please,

take your time choosing a band though. This is a very important decision! The

type of band/helmet and the orthotist you opt for do matter in how successful

the outcome will be.

Tatiana

>

> I am so glad to find this group. Please pardon me as I jump in and vent.

> We just had an appointment with a plastic surgeon (actually the Nurse

> Practitioner, NP). My son is nearly 14 months old and I am beyond angry.

> I have brought up the issue of my son's flat head at every one of his

> well baby visits since he was 3 months old. I was told over and over

> that " all babies these days have flat heads " and " prop him on his side "

> and " this is not a big deal " . I am so upset that I listened as long as I

> did. After being referred to early intervention services for my son's

> gross motor delay --he is a big boy!-- the service coordinators and PT's

> all mentioned his flat head and asked if we've done anything about it.

> But of course at this point the correction he may get from a helmet is

> not as good as it would have been if he was referred when he should have

> been referred. We were never given the option, nothing was explained to

> us, our questions hardly answered. We have since fired our pediatrician

> and are trying to get another one. Our pediatrician went above and

> beyond for our son with an issue we had a week after birth so he made a

> great impression and seemed he would be a good practitioner for our son.

> Since it seems that nothing " is a big deal " .

> So we see the Plastic Surgery NP and she had the bed side manner of a

> badger. She kept asking us what the PT's wanted us to do about his head.

> I kept telling her that we were referred to them so that they could tell

> us what to do. I mentioned helmet therapy. She launched into a song and

> dance about how she wasn't going to tell us not to do the therapy, he

> may not get much correction but she would write the script and we could

> decide. That is basically the long and short of the appointment. We

> walked out of there with no more information then we walked in with.

> Turns out our insurance doesn't cover the therapy without a letter of

> medical necessity, which we will hopefully be able to get but all the

> while the clock is ticking and we have no time to waste if we are to do

> this.

>

> There are so many more details that have thrown my blood pressure

> through the roof that I wont share as I have already written too much.

> Has anyone in the group ever done helmet therapy after 1 year of age?

> Any guidance? I am beyond choosing between brands of helmets and bands I

> am just trying to get anything now!!!

>

> Karin

>

[Guest guest]

I agree with what everyone else has said.

After bringing it to the attention of the pediatrician at 2.5 months, we were told it would round out. At her 12 month appointment, we were told that it wouldn't and asked if we wanted to consider a helmet. The neurosurgeon told us not to band because it would round out on it's own and that she was too old at 13 months anyway. Luckily, the pediatirican disagreed with him when I called her back and sent me to another cranial specialist who would give a second opinion and wrote me a script at 13.5 months.

So, we were pretty much in your boat. What I did wrong was wait for insurance approval. If you have the script, then just go forward. Yes, CT has done more older babies, but this is not true of all offices. There are a few older babies on this board that have done Star bands, but I haven't seen any older ones in Hanger bands. That doesn't mean that Hanger won't do it - I just can't speak for it.

Some orthos are against banding older babies, but that really varies. Most of them will discourage you so that you won't be disappointed. I found that true of all three companies that I contacted. They all warned me that I may not see any progress and even suggested that I may not want to waste the money. Luckily, I had aleady contacted this list and knew of other toddlers that had progress so I knew better than to listen to them. To me, any amount of progress was worth spending the money and I let them know that.

The trick is to get banded as quick as possible. My daughter was one week away from 15 months when she got her STARband. She wore it for 6 months and her head improved greatly during that time period. No, the numbers aren't in the normal range, but most people don't notice anything. Even when I point it out to them, they think I'm making a big deal out of nothing.

If you have the script, then get on the phone tomorrow and start making appointments. Ask the PT where he/she knows of that does bands. Many of them work with a lot of tort cases that end up in bands and have a good sense of which places are good and produce results.

The three main bands are doc bands, star bands, and hanger bands. Here are some links for you to find locations:

http://www.cranialtech.com/index.php?option=com_content & view=category & layout=blog & id=69 & Itemid=53

http://www.orthomerica.com/technology/scan_locations.htm

http://www.hanger.com/locations/Pages/default.aspx

More than likely, one or more of these will be close to you. If not, there are some local bands that are also made. I would suggest that you post a message to see if anyone here has any experience with them, if this is the case.

CT (doc band) does free evals. I believe that Hanger does as well. Some star band locations also do, but this varies more because starbands are managed by several different companies rather than just one company like CT and Hanger.

Also, check out past posts about CST, osteopathy, and chiro. These are alternative treatments, but I believe that they are worth trying. You can read up on them and decide for yourself.

But, you number one task is to get one or more appointments. It would be good if you could be comfortable with a choice before the initial appointment so that you could just order the band at that time.

If you'd like to see current pictures and before pictures of my daughter, they are available at this link: Remember, she didn't even start until almost 15 months. We also did CST and chiro. So, it's not to late, but you need to act now.

http://www.flickr.com/photos/11835424@N06/

, mom to , 2.5 years

STARband grad May 2009

Chiro and CST

land Re: New and very upset member

Your anger is totally understandable, and something many of us have experienced. The trick now will be to channel all that anger and turn it into activism on you son's part! As others have suggested, I would try ASAP to get into a Cranial Technologies or other banding office (STARband, Hanger, etc.) for an evaluation. They will be able to talk about helmet therapy much better than the neurosurgeon (our neurologist didn't even know the brand names of any bands...clueless) and should give you an honest evaluation. Be kindly tenacious with all the providers in getting what you need and in asking for appointments ASAP. I wouldn't wait on insurance approval if it appears it's going to take a long time--correction depends almost totally upon growth while in the band, so time is of the essense, but you're not too late! At CT they have plenty before and after photos of children who banded over a year old and they get good correction too. Good luck to you! Mom to , DOCband 12/29-3/29>> I am so glad to find this group. Please pardon me as I jump in and vent.> We just had an appointment with a plastic surgeon (actually the Nurse> Practitioner, NP). My son is nearly 14 months old and I am beyond angry.> I have brought up the issue of my son's flat head at every one of his> well baby visits since he was 3 months old. I was told over and over> that "all babies these days have flat heads" and "prop him on his side" > and "this is not a big deal". I am so upset that I listened as long as I> did. After being referred to early intervention services for my son's> gross motor delay --he is a big boy!-- the service coordinators and PT's> all mentioned his flat head and asked if we've done anything about it.> But of course at this point the correction he may get from a helmet is> not as good as it would have been if he was referred when he should have> been referred. We were never given the option, nothing was explained to> us, our questions hardly answered. We have since fired our pediatrician> and are trying to get another one. Our pediatrician went above and> beyond for our son with an issue we had a week after birth so he made a> great impression and seemed he would be a good practitioner for our son.> Since it seems that nothing "is a big deal".> So we see the Plastic Surgery NP and she had the bed side manner of a> badger. She kept asking us what the PT's wanted us to do about his head.> I kept telling her that we were referred to them so that they could tell> us what to do. I mentioned helmet therapy. She launched into a song and> dance about how she wasn't going to tell us not to do the therapy, he> may not get much correction but she would write the script and we could> decide. That is basically the long and short of the appointment. We> walked out of there with no more information then we walked in with.> Turns out our insurance doesn't cover the therapy without a letter of> medical necessity, which we will hopefully be able to get but all the> while the clock is ticking and we have no time to waste if we are to do> this.> > There are so many more details that have thrown my blood pressure> through the roof that I wont share as I have already written too much.> Has anyone in the group ever done helmet therapy after 1 year of age?> Any guidance? I am beyond choosing between brands of helmets and bands I> am just trying to get anything now!!!> > Karin>

[Guest guest]

Hello and welcome . . .

 

Very sorry to hear about your ordeal.  I really can't comprehend the lackadasical attitude of Ped's!  I experienced it first-hand as well. I skipped over my Ped, went straight to the neurosurgeon to get the script and when I came back in for my next well visit, she STILL had words of discouragement about getting the helmet.  Anyway, I think there is still time for you--when I went to Cranial Tech they showed me a book with cases with older kids and I think I saw an 18 month old child. Obviously, it may mean wearing it for a longer amount of time, but I can tell from the temperature of your email that that is a non-issue for you.  Good for you to keep on the case--now that you have the script you can begin the process. I didn't even wait for the insurance to go through--I'm getting my daughter banded first, then we'll sort that (nightmare mess) out later.

Good luck!

, mom to Sahana, 5 mos,

Brachy w/plagio, starts Starband on 04/12

[Guest guest]

It is so nice to get some validation and actual feedback. The closest CT clinic

is over 6 hours away. I started to make plans for the journey when I realized

that the orthotics specialist I was referred to does the STARband here where we

live. They are the ones who will be in communication with our insurance company

and I am told that it should just take a few days to get an answer. I haven't

decided if we'll go ahead and check out CT it is quite far and every trip will

involve a hotel stay as well. We have had a challenging year financially (my

hubby has a job so I am thankful so I am trying not to complain, too much).

I really appreciate what said about braces, it puts things into

perspective and i think will help explaining it to others as well.

, your daughter looks perfect to me, thank you for sharing photos.

The information I found through the databases and files here have been so

helpful. In one day i feel like I went from ignorance to feeling mush more

informed and educated. Thank you so much.

I'll stay in touch.

Karin

[Guest guest]

We had just about the same experience and it made me feel very annoyed at myself

for not doing more of my own research sooner. No one was concerned about it and

kept saying it would get better on it's own. Recently our Physical Therapist

told us that what our Doctor had suggested was actually making her Torticollis

worse. He told us to lay her on her larger side to keep pressure on it which

just kept her neck muscles tight on that side and encouraged growth on that side

due to gravity. CT and our therapist recommended completely different ways to

deal with it at home. You HAVE to find someplace close with people that know

and care about what your baby is going through. Doing so for us made us feel

empowered and not over-anxious like our other doctors did.

More than anything, early on, I felt ashamed of myself for appearing to not

accept my little girl as she was. I didn't get a lot of info from doctors until

I started asking the right questions because I had done research. Cranial Tech

helped us out a lot at the free evaluation but we weren't able to stick with

them because for us it was a 3 hour drive one way and no insurance help to cover

services. We are putting our 11 month old in a helmet this week from Hangar

which is only 20 minutes away and $2,100 cheaper ($1700 compared to $3800)! I

did feel that CT had a lot more expertise but at the same time I feel very

empowered to hold our new Doctor accountable. And you can see on the web group

that a lot of people have had success with all bands. It will be worth your

effort and money to help your baby in this. I keep seeing it from my little

girl's perspective...if I were her I would hope for my parents to do this for

me...and there IS a time limit on doing something about it. CT made an

appointment for us the day after I sent an email request to be contacted and

even Hangar got us in within 2 days. It is not too late and when this is all

over, help other moms to do be informed for their new babies. Helmets aren't

the right decision for everyone but we all deserve to be informed, taken

seriously and cared for.

Good Luck and God Bless your little one with lots of support and love!

>

> I am so glad to find this group. Please pardon me as I jump in and vent.

> We just had an appointment with a plastic surgeon (actually the Nurse

> Practitioner, NP). My son is nearly 14 months old and I am beyond angry.

> I have brought up the issue of my son's flat head at every one of his

> well baby visits since he was 3 months old. I was told over and over

> that " all babies these days have flat heads " and " prop him on his side "

> and " this is not a big deal " . I am so upset that I listened as long as I

> did. After being referred to early intervention services for my son's

> gross motor delay --he is a big boy!-- the service coordinators and PT's

> all mentioned his flat head and asked if we've done anything about it.

> But of course at this point the correction he may get from a helmet is

> not as good as it would have been if he was referred when he should have

> been referred. We were never given the option, nothing was explained to

> us, our questions hardly answered. We have since fired our pediatrician

> and are trying to get another one. Our pediatrician went above and

> beyond for our son with an issue we had a week after birth so he made a

> great impression and seemed he would be a good practitioner for our son.

> Since it seems that nothing " is a big deal " .

> So we see the Plastic Surgery NP and she had the bed side manner of a

> badger. She kept asking us what the PT's wanted us to do about his head.

> I kept telling her that we were referred to them so that they could tell

> us what to do. I mentioned helmet therapy. She launched into a song and

> dance about how she wasn't going to tell us not to do the therapy, he

> may not get much correction but she would write the script and we could

> decide. That is basically the long and short of the appointment. We

> walked out of there with no more information then we walked in with.

> Turns out our insurance doesn't cover the therapy without a letter of

> medical necessity, which we will hopefully be able to get but all the

> while the clock is ticking and we have no time to waste if we are to do

> this.

>

> There are so many more details that have thrown my blood pressure

> through the roof that I wont share as I have already written too much.

> Has anyone in the group ever done helmet therapy after 1 year of age?

> Any guidance? I am beyond choosing between brands of helmets and bands I

> am just trying to get anything now!!!

>

> Karin

>

[Guest guest]

CT has a lot of experience with older babies. We are really happy to

have been in the Starband though with a good ortho. This has allowed

us to stay in the band much longer than we would have been able to with

a Doc band. The Doc band only lasts 4 months. The Starband lasts at

least six months, and some orthos may agree for you to go longer. We

have gone longer and our band continues to be effective.

-Kathy, mom to 22 months

Karin wrote:

It is so nice to get some validation and actual feedback. The

closest CT clinic is over 6 hours away. I started to make plans for the

journey when I realized that the orthotics specialist I was referred to

does the STARband here where we live. They are the ones who will be in

communication with our insurance company and I am told that it should

just take a few days to get an answer. I haven't decided if we'll go

ahead and check out CT it is quite far and every trip will involve a

hotel stay as well. We have had a challenging year financially (my

hubby has a job so I am thankful so I am trying not to complain, too

much).

I really appreciate what said about braces, it puts things into

perspective and i think will help explaining it to others as well.

, your daughter looks perfect to me, thank you for sharing

photos.

The information I found through the databases and files here have been

so helpful. In one day i feel like I went from ignorance to feeling

mush more informed and educated. Thank you so much.

I'll stay in touch.

Karin

[Guest guest]

Seems like most doctors believe things will round out eventually... and then

they don't. We brought our son's odd shaped head (plagio + brachy) up his 4

month and 6 month well check.... I wasn't satisfied so looked up " my baby has a

crooked head " and found so much info! We drove 2.5 hours to CT and they are the

ones that were the first to mention torticollis!! No wonder he wasn't rolling

over at 6 months. We called Early Intervention - he has now just started PT.

He goes tomorrow to get his DOC band (he turned 8 months on 3/29). We

considered looking at places closer to us, but our insurance company apparently

can't tell me who the in network providers are - after phoning a manager,

leaving messages, etc. It's a bit crazy, but we feel like we're going with the

best.

It's shameful that doctors are still ignoring this problem since the number of

kids has increased over the past 20 years or so.

Good luck!

>

> I am so glad to find this group. Please pardon me as I jump in and vent.

> We just had an appointment with a plastic surgeon (actually the Nurse

> Practitioner, NP). My son is nearly 14 months old and I am beyond angry.

> I have brought up the issue of my son's flat head at every one of his

> well baby visits since he was 3 months old. I was told over and over

> that " all babies these days have flat heads " and " prop him on his side "

> and " this is not a big deal " . I am so upset that I listened as long as I

> did. After being referred to early intervention services for my son's

> gross motor delay --he is a big boy!-- the service coordinators and PT's

> all mentioned his flat head and asked if we've done anything about it.

> But of course at this point the correction he may get from a helmet is

> not as good as it would have been if he was referred when he should have

> been referred. We were never given the option, nothing was explained to

> us, our questions hardly answered. We have since fired our pediatrician

> and are trying to get another one. Our pediatrician went above and

> beyond for our son with an issue we had a week after birth so he made a

> great impression and seemed he would be a good practitioner for our son.

> Since it seems that nothing " is a big deal " .

> So we see the Plastic Surgery NP and she had the bed side manner of a

> badger. She kept asking us what the PT's wanted us to do about his head.

> I kept telling her that we were referred to them so that they could tell

> us what to do. I mentioned helmet therapy. She launched into a song and

> dance about how she wasn't going to tell us not to do the therapy, he

> may not get much correction but she would write the script and we could

> decide. That is basically the long and short of the appointment. We

> walked out of there with no more information then we walked in with.

> Turns out our insurance doesn't cover the therapy without a letter of

> medical necessity, which we will hopefully be able to get but all the

> while the clock is ticking and we have no time to waste if we are to do

> this.

>

> There are so many more details that have thrown my blood pressure

> through the roof that I wont share as I have already written too much.

> Has anyone in the group ever done helmet therapy after 1 year of age?

> Any guidance? I am beyond choosing between brands of helmets and bands I

> am just trying to get anything now!!!

>

> Karin

>