Re: Granddaughter has Hanger helmet

[Guest guest]

I am sorry, I have no real advice for you. But if the cranofacial

specialist can't tell you anything, can you at least take her once

for a consultation to the Miami DOC office? My daughter is acutally

in a Hanger band right now and has seen some results (her plagio is

mild, but she does have facial asymetries and her ears are not

aligned), but I do believe that we might have seen better results

with another band. Our ortho was very nice, but is just now getting

into this 'business' and was therefore not as experienced as I would

have liked. My daughter started wearing her helmet when she was

almost 8 months old. She has worn the helmet for 6 months and her

flat spot is gone (her head looks great), but her ears are still off

and even though her facial asymmetries have gotten better, they are

still noticable to me. My daugher didn't have a single growth spurt

during this whole process (which is the reason this is taking so

long), but over time, her measurements have gotten better. There was

a time in between where I thought her flat spot was getting worse

or 'shifting', but all that is resolved.

How many mm did your granddaughter grow since she has worn the

helmet? If she hasn't grown any, then you won't see a lot of results.

My daughter had grown about 7mm before we saw an improvement in her

head. And only very recently have we seen improvement to her face and

ears. So, maybe you just need to hang in there for a little longer

and not give up hope yet.

My daughter also has tort, which is not resolved and might never get

resolved, and that contributes to the facial asymmetrie. I guess I do

have some advice on that - tort that has gotten better is not good

enough. My daughter stopped tilting after 2 months or so of stretches

and we thought that she was fine. However, when she was about 12

months old, she all of the sudden started tiling again and now the

tort is worse than it ever was. I found out that tort can come back

when babies or even children go thru developmental stages unless it

is completely resolved. So if I was you, keep working on the tort

issue. Since my daughter fights all exercises and stretches, I am now

at a loss as to how I can help her and have to look into alternative

medicine or surgery. You might want to join the torticollis group on

if you haven't already. I have gotten some very good

information from that in the past two weeks.

Well, sorry for the very long reply, but hopefully, it helps a little

bit.

>

> I have a granddaughter (Kendall) who has pretty severe plagio and

> tort. She was diagnosed with both at about 3 months (although we

> just found out it had been noted in her chart since 4 days

old!!!).

> We live in Tallahassee, Florida and this medical community lacks

many

> specialists. We have not been given ANY guidance and have had to

> learn on our own. We were referred to PT and Kendall was taken 1

to

> 2 times a week until insurance capped out. The tort has improved

> greatly. She was helmeted May 16th at our local Hanger. It has

been

> almost 8 weeks with no visible results (in fact I think it may be

> getting worse).

>

> She was a breech baby and was stuck in the frank breech position

> jammed up under her mother's ribs for the last 3-4 months of the

> pregnancy. She was born with a misshapened head and we were told

> that it would resolve in a week or two. Of course, that didn't

> happen and the tort just exasebated everything. Her ears are

> misaligned and she has facial assymetry.

>

> She has had a CT of her skull (only on our insistence) and it

appears

> that the sutures are not closed (although there was some movement

of

> the head during the test). We are still concerned that something

may

> have been overlooked and have just now scheduled an appointment

with

> a top notch craniofacial specialist in Tampa. I am worried that

the

> ortho at Hanger is not experienced enough to handle Kendall's case,

> he even has told us that she has a very complicated case. Miami is

> the closest location for the DOC bands and that is about a 10 hour

> drive...logistically that would be a nightmare.

>

> We would love any advice....I have certainly gained a lot of

> knowledge by reading everyones postings. Thanks for being so

vocal!!!

>

> A VERY concerned and loving Nana.

>

[Guest guest]

Hello, My name is Jackie and I live in ville,FL. My daughter has been in a Starband for 3 weeks now. We actually got a laser scan at Wolfson's Childrens Hospital in ville. The ortho we are working with is at Bremer Brace. They've been great so far. I know ville is a lot closer than Miami maybe they could help you out.

From: tina_f528 <tina_f528@...>Subject: Re: Granddaughter has Hanger helmetPlagiocephaly Date: Friday, June 13, 2008, 5:02 PM

I am sorry, I have no real advice for you. But if the cranofacial specialist can't tell you anything, can you at least take her once for a consultation to the Miami DOC office? My daughter is acutally in a Hanger band right now and has seen some results (her plagio is mild, but she does have facial asymetries and her ears are not aligned), but I do believe that we might have seen better results with another band. Our ortho was very nice, but is just now getting into this 'business' and was therefore not as experienced as I would have liked. My daughter started wearing her helmet when she was almost 8 months old. She has worn the helmet for 6 months and her flat spot is gone (her head looks great), but her ears are still off and even though her facial asymmetries have gotten better, they are still noticable to me. My daugher didn't have a single growth spurt during this whole process (which is the

reason this is taking so long), but over time, her measurements have gotten better. There was a time in between where I thought her flat spot was getting worse or 'shifting', but all that is resolved.How many mm did your granddaughter grow since she has worn the helmet? If she hasn't grown any, then you won't see a lot of results. My daughter had grown about 7mm before we saw an improvement in her head. And only very recently have we seen improvement to her face and ears. So, maybe you just need to hang in there for a little longer and not give up hope yet. My daughter also has tort, which is not resolved and might never get resolved, and that contributes to the facial asymmetrie. I guess I do have some advice on that - tort that has gotten better is not good enough. My daughter stopped tilting after 2 months or so of stretches and we thought that she was fine. However, when she was about 12

months old, she all of the sudden started tiling again and now the tort is worse than it ever was. I found out that tort can come back when babies or even children go thru developmental stages unless it is completely resolved. So if I was you, keep working on the tort issue. Since my daughter fights all exercises and stretches, I am now at a loss as to how I can help her and have to look into alternative medicine or surgery. You might want to join the torticollis group on if you haven't already. I have gotten some very good information from that in the past two weeks.Well, sorry for the very long reply, but hopefully, it helps a little bit.>> I have a granddaughter (Kendall) who has pretty severe plagio and

> tort. She was diagnosed with both at about 3 months (although we > just found out it had been noted in her chart since 4 days old!!!). > We live in Tallahassee, Florida and this medical community lacks many > specialists. We have not been given ANY guidance and have had to > learn on our own. We were referred to PT and Kendall was taken 1 to > 2 times a week until insurance capped out. The tort has improved > greatly. She was helmeted May 16th at our local Hanger. It has been > almost 8 weeks with no visible results (in fact I think it may be > getting worse).> > She was a breech baby and was stuck in the frank breech position > jammed up under her mother's ribs for the last 3-4 months of the > pregnancy. She was born with a misshapened head and we were told > that it would resolve in a week or two. Of course, that didn't > happen

and the tort just exasebated everything. Her ears are > misaligned and she has facial assymetry. > > She has had a CT of her skull (only on our insistence) and it appears > that the sutures are not closed (although there was some movement of > the head during the test). We are still concerned that something may > have been overlooked and have just now scheduled an appointment with > a top notch craniofacial specialist in Tampa. I am worried that the > ortho at Hanger is not experienced enough to handle Kendall's case, > he even has told us that she has a very complicated case. Miami is > the closest location for the DOC bands and that is about a 10 hour > drive...logisticall y that would be a nightmare.> > We would love any advice....I have certainly gained a lot of > knowledge by reading everyones postings. Thanks for being so

vocal!!!> > A VERY concerned and loving Nana.>

[Guest guest]

Hi Nana :-)

I would also be worried if the head looks the same or worse after 8

weeks. One thing I suggest is taking photos yourself to document

progress - I pretty much recommend this to everyone. I would go to the

hanger ortho and tell them your concerns and ask them to remeasure her

and explain what is going on. In the meantime I would also start a

serious search for a better option. There is an organization called

Angel Flights that provides free air transportation for people with

medical needs - you could look into this for going to CT in Miami. I

think there is a link in the files section of this group. Also see if

there is another provider (starband?) closer who has good experience.

My daughter wore a starband from a very experienced ortho and had

very good results.

How old is Kendall now? Do you know if Kendall has been growing in the

past 8 weeks? (for babies under a year the answer would nearly always

be " yes " ). I hope you are able to resolve this quickly. It really

frustrates me that some babies are wearing bands that aren't helping

them. With a good ortho the band can really make a huge difference in

the baby's headshape. Please keep us posted.

-christine

sydney 2 yrs starband grad

>

> I have a granddaughter (Kendall) who has pretty severe plagio and

> tort. She was diagnosed with both at about 3 months (although we

> just found out it had been noted in her chart since 4 days old!!!).

> We live in Tallahassee, Florida and this medical community lacks many

> specialists. We have not been given ANY guidance and have had to

> learn on our own. We were referred to PT and Kendall was taken 1 to

> 2 times a week until insurance capped out. The tort has improved

> greatly. She was helmeted May 16th at our local Hanger. It has been

> almost 8 weeks with no visible results (in fact I think it may be

> getting worse).

>

> She was a breech baby and was stuck in the frank breech position

> jammed up under her mother's ribs for the last 3-4 months of the

> pregnancy. She was born with a misshapened head and we were told

> that it would resolve in a week or two. Of course, that didn't

> happen and the tort just exasebated everything. Her ears are

> misaligned and she has facial assymetry.

>

> She has had a CT of her skull (only on our insistence) and it appears

> that the sutures are not closed (although there was some movement of

> the head during the test). We are still concerned that something may

> have been overlooked and have just now scheduled an appointment with

> a top notch craniofacial specialist in Tampa. I am worried that the

> ortho at Hanger is not experienced enough to handle Kendall's case,

> he even has told us that she has a very complicated case. Miami is

> the closest location for the DOC bands and that is about a 10 hour

> drive...logistically that would be a nightmare.

>

> We would love any advice....I have certainly gained a lot of

> knowledge by reading everyones postings. Thanks for being so vocal!!!

>

> A VERY concerned and loving Nana.

>

[Guest guest]

Hi,

Thanks for your reply.

The ortho at Hanger had her come in last week so that he could get another scan of her head. He is taking it to a "helmet convention" somewhere in the midwest next week. He said he is using Kendall as his case study and is going to get many expert opinions while he is there. Then, along with any input from the craniofacial specialist in Tampa it will be decided whether Kendall needs a different style helmet. The ortho wants to confer with the Tampa specialist when he gets back from convention. So....he is trying, but I think he feels he is over his head with Kendall's case. He says the plagio involves 3 quadrants of her head.....making it more complicated. Has anyone else been told that?

I think that ville (a 3 hour drive) is the closest place that uses the Starband. So, depending on what takes place at our appointment with the Tampa specialist we might need to go elsewhere for another helmet. Hopefully, we would be able to get our money back from Hanger if we go that route. This has been an unbelievably involved process. We have been fumbling around out there with absolutely NO guidance. Kendall is now 8 months old and has yet to be seen by an expert in the field. That is why we are making the trek to Tampa. ly, I am appauled at the way we have been treated by the pediatrician....it is now apparent that she really doesn't know anything about plagio and tort. We WILL be finding a new pediatrician once we get on track with our treatment.

This group has been more help than anything so far......THANKS!!

From: christineashok <christineashok@...>Subject: Re: Granddaughter has Hanger helmetPlagiocephaly Date: Saturday, June 14, 2008, 1:43 PM

Hi Nana :-)I would also be worried if the head looks the same or worse after 8weeks. One thing I suggest is taking photos yourself to documentprogress - I pretty much recommend this to everyone. I would go to thehanger ortho and tell them your concerns and ask them to remeasure herand explain what is going on. In the meantime I would also start aserious search for a better option. There is an organization calledAngel Flights that provides free air transportation for people withmedical needs - you could look into this for going to CT in Miami. Ithink there is a link in the files section of this group. Also see ifthere is another provider (starband?) closer who has good experience.My daughter wore a starband from a very experienced ortho and hadvery good results. How old is Kendall now? Do you know if Kendall has been growing in thepast 8 weeks? (for babies under a year the answer would nearly

alwaysbe "yes"). I hope you are able to resolve this quickly. It reallyfrustrates me that some babies are wearing bands that aren't helpingthem. With a good ortho the band can really make a huge difference inthe baby's headshape. Please keep us posted.-christinesydney 2 yrs starband grad>> I have a granddaughter (Kendall) who has pretty severe plagio and > tort. She was diagnosed with both at about 3 months (although we > just found out it had been noted in her chart since 4 days old!!!). > We live in Tallahassee, Florida and this medical community lacks many > specialists. We have not been given ANY guidance and have had to > learn on our own. We were referred to PT and Kendall was taken 1 to > 2 times a

week until insurance capped out. The tort has improved > greatly. She was helmeted May 16th at our local Hanger. It has been > almost 8 weeks with no visible results (in fact I think it may be > getting worse).> > She was a breech baby and was stuck in the frank breech position > jammed up under her mother's ribs for the last 3-4 months of the > pregnancy. She was born with a misshapened head and we were told > that it would resolve in a week or two. Of course, that didn't > happen and the tort just exasebated everything. Her ears are > misaligned and she has facial assymetry. > > She has had a CT of her skull (only on our insistence) and it appears > that the sutures are not closed (although there was some movement of > the head during the test). We are still concerned that something may > have been overlooked and have just now scheduled an

appointment with > a top notch craniofacial specialist in Tampa. I am worried that the > ortho at Hanger is not experienced enough to handle Kendall's case, > he even has told us that she has a very complicated case. Miami is > the closest location for the DOC bands and that is about a 10 hour > drive...logisticall y that would be a nightmare.> > We would love any advice....I have certainly gained a lot of > knowledge by reading everyones postings. Thanks for being so vocal!!!> > A VERY concerned and loving Nana.>

[Guest guest]

Hi ,

Thanks for all your wealth of information. I have posted some photos of Kendall...in the "K" album. A few of them I forgot to attach her name, but you will see my "romford54" under the photo. Please check them out and offer any wisdom. Unfortunately, it's hard to capture the perfect angle to demonstrate the plagio.

Thanks again.

From: christineashok <christineashok@...>Subject: Re: Granddaughter has Hanger helmetPlagiocephaly Date: Saturday, June 14, 2008, 11:35 PM

Sorry this is so tough. It does sound like the Hanger guy is out ofhis league if he is soliciting all this input at a convention. Nicethat is he trying, but... I've heard some headshapes described as"complex" - where it isn't just the textbook flattening. In thesecases there are usually several areas involved. Can you posts somepics of your little one? If the headshape is complex I would suggesttrying to go to CT, since it seems they put a bit more individualattention in designing bands for tough cases. They are more specificabout identifying where the band should hold etc (at least that is theimpression I get). I think it might be worth visiting them if you canmake arrangements with Angle Flights. Also if you do visit a starbandprovider you should discuss this with them and ask if they feel theywould be able to design a band that would be able to help all 3quadrants, and if they feel that makes her

head more complicated.Unfortunately most peds are pretty ignorant about plagio. We werelucky that we had a very good cranial facial speicalist in our HMO,but the ped was not much help. We asked about my daughters head at 2mo and were told "don't worry" then at 4 mo she said "looks prettybad". At least she quickly referred us to a specialist and we got goodcorrection.Please keep us updated.-christinesydney 2 yrs starband grad> & gt;> & gt; I have a granddaughter (Kendall) who has pretty severe plagio and > & gt; tort. She was diagnosed with both at about 3 months (although we > & gt; just found out it had been noted in her chart since 4 daysold!!!). > & gt; We live in Tallahassee, Florida and this medical communitylacks many > & gt;

specialists. We have not been given ANY guidance and have had to > & gt; learn on our own. We were referred to PT and Kendall was taken1 to > & gt; 2 times a week until insurance capped out. The tort has improved > & gt; greatly. She was helmeted May 16th at our local Hanger. It hasbeen > & gt; almost 8 weeks with no visible results (in fact I think it may be > & gt; getting worse).> & gt; > & gt; She was a breech baby and was stuck in the frank breech position > & gt; jammed up under her mother's ribs for the last 3-4 months of the > & gt; pregnancy. She was born with a misshapened head and we were told > & gt; that it would resolve in a week or two. Of course, that didn't > & gt; happen and the tort just exasebated everything. Her ears are > & gt; misaligned and she has facial assymetry. > & gt; > & gt;

She has had a CT of her skull (only on our insistence) and itappears > & gt; that the sutures are not closed (although there was somemovement of > & gt; the head during the test). We are still concerned thatsomething may > & gt; have been overlooked and have just now scheduled an appointmentwith > & gt; a top notch craniofacial specialist in Tampa. I am worried thatthe > & gt; ortho at Hanger is not experienced enough to handle Kendall'scase, > & gt; he even has told us that she has a very complicated case. Miami is > & gt; the closest location for the DOC bands and that is about a 10 hour > & gt; drive...logisticall y that would be a nightmare.> & gt; > & gt; We would love any advice....I have certainly gained a lot of > & gt; knowledge by reading everyones postings. Thanks for being sovocal!!!> & gt;

> & gt; A VERY concerned and loving Nana.> & gt;>