Re: Maysa on the News - I need your input everybody!

[Guest guest]

HI - I think it is great - I would also recommend that babies sleep on alternating sides - my pediatrician from my first child - 27 years ago - and yes I have a baby - 22 months - tort/plagio - plagio resolved - tort still stretching - the ped recommended that and I had NO PROBLEMS - also had 2 more children - 25 and 22 years old - no probs. Had I followed the 'older' advice my baby daughter would likely have NOT developed such a flat head even with tort! She was confirmed by her orthist's opinion - ie she agreed with me.

In a message dated 9/27/2008 8:12:47 A.M. Pacific Standard Time, leilarem@... writes:

Hello everyone,Maysa's ortho has asked us whether we would agree for Maysa to be featured on News Channel 9 for wearing a helmet to help correct her plagio/brachy in the next few days or so. First we were a bit surprised and after thinking about it for a minute I thought "Hey! This is our chance to get the word out and to help raise the awareness about it all". Therefore, we said that we would agree. I do not know yet when they will be coming to our house or when it will actually be aired, but I am quite excited about it all.What I need from all of you is your input on what I should say, mention, talk about, show, share. In other words, if your child was to be featured on the news, what would YOU talk about? I already have quite a few items on my list but as resourceful as this group has been, I can't wait to hear from you.For those of you who need a little history, shortly after she was born, we noticed that Maysa had her head tilted to the right all the time but didn't know that she had torticollis. She developed plagio as a result. At her 2 months check up, the doctor told us to reposition, showed us one stretching exercise, and told us not to worry too much about it that it would round out on its own. I remember asking her what if it doesn't. She said that some people eventually end up going for a helmet but never explained things the way I feel she should have. At three months, she was scanned to rule out craniosyntosis. After that we had to switch insurance because I was on extended maternity leave and starting seeing new doctors. At her fourth months check up, it seemed to us that the repositioning only led to the development of brachy as well. Again, the doctors brushes it off, tells us to keep repositioning and wait until her 6 months check up. Well by that time, I am really starting to worry. She has a sister who is 2 years older that her and when I take pictures of the two of them, I can clearly see that my youngest as a wider forehead than her older sister...I then start to look for more information on my own. I go online and find out that a "flat head" actually has a name: "plagiocephaly". I then find out about this group and subsequently providers in my area. I go and visit 4 different helmet/band makers (The DOCband, Eastern Cranial Affiliates, Orthoamerica and Hanger). We ultimately decide to go with Eastern Cranial Affiliates.Maysa starts her treatment at 5 and a half months and does pretty well the first month she is in it. During her second month, her growth slows down a little, I break one of her ear flaps while cleaning the band and I start to worry that she is not going to get the correction we are hoping for. At her two month rescan, the ortho says that she has outgrown her helmet sooner than expected and that he will make another one for her free of charge. He things that she will be in it for another 2 months or so. Maysa is now 8 and a half months old, in her second helmet and looking so much better than when she started treatment. The first helmet took care of the plagio, we are hoping that the second one will correct her bracky.Sorry if this is long, I really tried to give it to you in a nutshell.I look forward to hearing from you,Leila, mother to Maysa Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

Leila

What a great opportunity you have! I have such a similar story to

yours in terms of the tort showing itself basically at birth but the

Ped showed me 1 stretch and talked about repo.

Jake just turned 7 months old and has been in his STARband for 1

week - and he's doing great. He " grew " 3mm in the first week!

I think one of the biggest things to stress is awareness of plagio

and bracky. It seems that many Peds are slow or hesitate to refer

for helmets. If more parents knew about our experiences then maybe

fewer of them would have to go through what all of us have/are going

through.

I live in Chicago - so I doubt I will be able to see the story - but

good luck! It's funny that you mention this now, because this past

week I half thought of emailing Oprah about all of this for a

possible show - or at least a Dr. Oz segment!

Jenn

7 months

Tort & Plagio

STARband 1 week

>

> HI - I think it is great - I would also recommend that babies sleep

on

> alternating sides - my pediatrician from my first child - 27 years

ago - and yes I

> have a baby - 22 months - tort/plagio - plagio resolved - tort

still

> stretching - the ped recommended that and I had NO PROBLEMS - also

had 2 more

> children - 25 and 22 years old - no probs. Had I followed

the 'older' advice my

> baby daughter would likely have NOT developed such a flat head even

with tort!

> She was confirmed by her orthist's opinion - ie she agreed with me.

>

>

> In a message dated 9/27/2008 8:12:47 A.M. Pacific Standard Time,

> leilarem@... writes:

>

>

>

>

> Hello everyone,

>

> Maysa's ortho has asked us whether we would agree for Maysa to be

> featured on News Channel 9 for wearing a helmet to help correct

her

> plagio/brachy in the next few days or so. First we were a bit

> surprised and after thinking about it for a minute I thought " Hey!

> This is our chance to get the word out and to help raise the

> awareness about it all " . Therefore, we said that we would agree. I

> do not know yet when they will be coming to our house or when it

will

> actually be aired, but I am quite excited about it all.

>

> What I need from all of you is your input on what I should say,

> mention, talk about, show, share. In other words, if your child

was

> to be featured on the news, what would YOU talk about? I already

> have quite a few items on my list but as resourceful as this group

> has been, I can't wait to hear from you.

>

> For those of you who need a little history, shortly after she was

> born, we noticed that Maysa had her head tilted to the right all

the

> time but didn't know that she had torticollis. She developed

plagio

> as a result. At her 2 months check up, the doctor told us to

> reposition, showed us one stretching exercise, and told us not to

> worry too much about it that it would round out on its own. I

> remember asking her what if it doesn't. She said that some people

> eventually end up going for a helmet but never explained things

the

> way I feel she should have. At three months, she was scanned to

rule

> out craniosyntosis. After that we had to switch insurance because

I

> was on extended maternity leave and starting seeing new doctors.

At

> her fourth months check up, it seemed to us that the repositioning

> only led to the development of brachy as well. Again, the doctors

> brushes it off, tells us to keep repositioning and wait until her

6

> months check up. Well by that time, I am really starting to worry.

> She has a sister who is 2 years older that her and when I take

> pictures of the two of them, I can clearly see that my youngest as

a

> wider forehead than her older sister...

>

> I then start to look for more information on my own. I go online

and

> find out that a " flat head " actually has a

name: " plagiocephaly " find

> then find out about this group and subsequently providers in my

> area. I go and visit 4 different helmet/band makers (The DOCband,

> Eastern Cranial Affiliates, Orthoamerica and Hanger). We

ultimately

> decide to go with Eastern Cranial Affiliates.

>

> Maysa starts her treatment at 5 and a half months and does pretty

> well the first month she is in it. During her second month, her

> growth slows down a little, I break one of her ear flaps while

> cleaning the band and I start to worry that she is not going to

get

> the correction we are hoping for. At her two month rescan, the

ortho

> says that she has outgrown her helmet sooner than expected and

that

> he will make another one for her free of charge. He things that

she

> will be in it for another 2 months or so. Maysa is now 8 and a

half

> months old, in her second helmet and looking so much better than

when

> she started treatment. The first helmet took care of the plagio,

we

> are hoping that the second one will correct her bracky.

>

> Sorry if this is long, I really tried to give it to you in a

nutshell.

>

> I look forward to hearing from you,

> Leila, mother to Maysa

>

>

>

>

>

>

>

> **************Looking for simple solutions to your real-life

financial

> challenges? Check out WalletPop for the latest news and

information, tips and

> calculators. (http://www.walletpop.com/?

NCID=emlcntuswall00000001)

>