3rd opinion

October 2, 2001

Alison,

It sounds like the 3rd time was a charm for you!! I'm so glad that you went

for the 3rd opinion. I really think you may be on the right track here. You

feel good about the 3rd specialist (and that means alot!!!), you've heard the

radiologist's opinion, you've double checked with your ped and you've seen

the opthomologist (sp??). It seems you've seen and/or talked to all the

appropriate people and the concensus is that the helmet is the right way to

go at this time. I think you are making the right decision - more

importantly, your gut instinct seems to be telling you that this is the right

thing to do! That mommy instinct is very rarely wrong.

It sounds like you will be able to get in for the casting quickly (Wednesday

- right??). Make sure to take an extra pair of hands with you for that and

take as many comfort items as you can to sooth baby. Pacifier, bottle,

favorite toys, blankie, things that make noise or music, etc. All of these

things will help make the casting process much easier.

Best wishes to you and I hope you will stick with this group. I think you

will find all the support, answers and friendship you need to get through

this ordeal. I'm happy for you and your family and I think you are on the

right track.

Marci (Mom to )

Oklahoma

October 2, 2001

Wow..it sounds like you have gone thru alot - and the tears in my eyes are for you. I know the love you have for your child...it is showing in the deep care and concern that you and your husband are taking in making the correct decision.

Life is precious...and a child is the truest example of life...so hold tight and love your little one and trust in your mother's instinct ! Please keep us updated and our family is praying for you !

Karla

Mommie to

(Helmet on 9/01)

and

Kirsten Grace

born 2/20/01

California

October 2, 2001

Alison,

What a great mommy you are! You are so on top of this and working hard for Tyler's best interest, if you haven't had one yet, I'm giving you a round of applause! You deserve it! You have every right to break down, this gets so overwhelming when Doctors are steering you in every direction! I think you are making a wise decision (given you've had 3 different opinions!!!). You and your husband will do absolutely what is right for Tyler and kudos to you for pushing this until it felt right. Please keep us informed of Tyler's progress, I think you will be delighted at the end of the 3 months and you will see dramatic improvement. Kiss Tyler for all of us and give him a big squeeze!

All the best,

' Mom (DOC grad)

October 2, 2001

Hi Everyone,

I want to thank you all for welcoming me to the club and making me

feel comfortable. I had so many responses to my first post, so i

figured i would thank you all in one. I have checked out the CAPPS

website and it has given me some useful info. Thank you for

recommending it.

My husband and i did go to NYU yesterday and had a 3rd opinion.

We went to see Dr. Wisoff. He was a wondefull Dr. We believe

he was the most thourough (sp) Dr. that we have seen. He was also

very friendly and comforting. We believe his opinion is probaly the

most reasonable. He has suggested that Tyler wear a helmet to correct

his plagio and he believes the extent of his cranio is very mild and

at this time surgical interventiion is unneccesary. We were very

happy to hear that took the RX for the helmet and stopped and made an

appt. for this wednesday at 1pm. We were very confused so we stopped

at our peds office on our way home to see if he could help us sort

thing sout.

He told us to relax ( i had finaaly broke down and started to

cry) and we would look at all 3 Dr.'s reports logically. The office

even recieved the radiolgy report yesterday for the 1st time which

was actually the key factor in our decision. The 1st Dr. said all

surgery right away and there waas extreme pressure on thebrain. The

2nd Dr. said possibly for surgery soon for the cranio, a little

pressure maybe, and a helmut for the plagio. The 3rd dr. said no

surgery no pressure (but to make sure see what an optomaligist says

about his optic nerves) and a helmut will fix everything, even the

cranio because it was so mild and its only partially closed. The

radioligist said there was only a 1/4 of the suture fused and the

rest was all plagio and he recommended orthodic therapy. we also

went to the opto yesterday and he said there is no swelling of

tyler's optic nerve and his vision is great and he'll see us back in

2 mos. to further asses him.

So with the help of our ped and the reports amd most importantly

our instincts we are taking the conservative approach and we are not

going to put tyler through another surgical procedure because it

does'nt seem right. we are going to try the helmut and i pray to god

it works. They say it is most effective under a year, so we've heard,

and if after the therapy and it does'nt work than we can discuss

other options. I am confident that we have made the right decision

and i think i may be able to sleep easy again.

I would love to hear everyones thoughts about my situation and if

you don't agree with me please let me know because maybe you know

more than i do , and you can be a big help. I hace not yet cancelled

the surgery with the 1st Dr. I have'nt told him anything, i am going

to meet with him and have all my other reports and i want to see what

he has to say.

Thank you all for listening once again

Alison

October 2, 2001

Alison,

Your post gave me chills. I'm so happy for you.

See,3rd opinion. Wow.. Congrats. If the third Dr

seemed to know his stuff and explained things to your

liking, I would take his opinion. The first Dr. will

probably stick to his first decision. Sometimes, sad

though it is, it comes down to money with these Dr.s.

You have to be aware, and causious(<-spelling?) with

them. I always go with my gut instinct on these

matters. If the third Dr. doesn't think it's

necessary, then try it the band way first. You may

get awesome results!!! Good luck, and please, keep us

all posted!

Kelli 's mom (to be banded 10/5/01)

__________________________________________________

October 2, 2001

Alison:

Thank you so much for the update. I really feel for you. Having 3

pretty much completely different " expert " opinions, I can only

imagine the confusion you have been feeling over this decision. I

personally think you have made the correct decision. If the band

does not give you any results, then you should consider the surgery.

I hope the band makes Tyler's little head rounder!!!!!

Good luck with the casting. What type of band is Tyler getting? A

STAR, DOC or helmet?

Please let us know how the casting goes on Wednesday.

Debbie Abby's mom 3/1/00 DOCgrad 6/22/01

MI

> Hi Everyone,

>

> I want to thank you all for welcoming me to the club and making

me

> feel comfortable. I had so many responses to my first post, so i

> figured i would thank you all in one. I have checked out the CAPPS

> website and it has given me some useful info. Thank you for

> recommending it.

>

> My husband and i did go to NYU yesterday and had a 3rd opinion.

> We went to see Dr. Wisoff. He was a wondefull Dr. We

believe

> he was the most thourough (sp) Dr. that we have seen. He was also

> very friendly and comforting. We believe his opinion is probaly the

> most reasonable. He has suggested that Tyler wear a helmet to

correct

> his plagio and he believes the extent of his cranio is very mild

and

> at this time surgical interventiion is unneccesary. We were very

> happy to hear that took the RX for the helmet and stopped and made

an

> appt. for this wednesday at 1pm. We were very confused so we

stopped

> at our peds office on our way home to see if he could help us sort

> thing sout.

>

> He told us to relax ( i had finaaly broke down and started to

> cry) and we would look at all 3 Dr.'s reports logically. The office

> even recieved the radiolgy report yesterday for the 1st time which

> was actually the key factor in our decision. The 1st Dr. said all

> surgery right away and there waas extreme pressure on thebrain. The

> 2nd Dr. said possibly for surgery soon for the cranio, a little

> pressure maybe, and a helmut for the plagio. The 3rd dr. said no

> surgery no pressure (but to make sure see what an optomaligist says

> about his optic nerves) and a helmut will fix everything, even the

> cranio because it was so mild and its only partially closed. The

> radioligist said there was only a 1/4 of the suture fused and the

> rest was all plagio and he recommended orthodic therapy. we also

> went to the opto yesterday and he said there is no swelling of

> tyler's optic nerve and his vision is great and he'll see us back

in

> 2 mos. to further asses him.

>

> So with the help of our ped and the reports amd most

importantly

> our instincts we are taking the conservative approach and we are

not

> going to put tyler through another surgical procedure because it

> does'nt seem right. we are going to try the helmut and i pray to

god

> it works. They say it is most effective under a year, so we've

heard,

> and if after the therapy and it does'nt work than we can discuss

> other options. I am confident that we have made the right decision

> and i think i may be able to sleep easy again.

>

> I would love to hear everyones thoughts about my situation and

if

> you don't agree with me please let me know because maybe you know

> more than i do , and you can be a big help. I hace not yet

cancelled

> the surgery with the 1st Dr. I have'nt told him anything, i am

going

> to meet with him and have all my other reports and i want to see

what

> he has to say.

>

> Thank you all for listening once again

> Alison

October 2, 2001

Hi Alison

I am so glad that you have now gotten a 3rd opinion for Tyler. This Dr.

sounds like he knows what he is talking about. As for you making the right

decision I think so long as you follow your instincts that you can't go

wrong. Your instinct is what guides you in the right direction. I

personally think you are making the right decision & if some time down the

track Tyler does require surgery you will know you did all you could to

prevent that. Give him lots of hugs from all of us and don't forget to hug

yourself - us mummies and daddies need those hugs just as much (if not more)

than our babies do. After all we are the ones stressing about everything.

Take care Alison and keep us updated - I am so glad that you have been able

to make a choice that you are happy with

Regards

nna

Skye's mum

Brisbane Australia

>From: " Alison " <eve1stladie@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: 3rd opinion

>Date: Tue, 02 Oct 2001 14:58:12 -0000

>

>Hi Everyone,

>

> I want to thank you all for welcoming me to the club and making me

>feel comfortable. I had so many responses to my first post, so i

>figured i would thank you all in one. I have checked out the CAPPS

>website and it has given me some useful info. Thank you for

>recommending it.

>

> My husband and i did go to NYU yesterday and had a 3rd opinion.

>We went to see Dr. Wisoff. He was a wondefull Dr. We believe

>he was the most thourough (sp) Dr. that we have seen. He was also

>very friendly and comforting. We believe his opinion is probaly the

>most reasonable. He has suggested that Tyler wear a helmet to correct

>his plagio and he believes the extent of his cranio is very mild and

>at this time surgical interventiion is unneccesary. We were very

>happy to hear that took the RX for the helmet and stopped and made an

>appt. for this wednesday at 1pm. We were very confused so we stopped

>at our peds office on our way home to see if he could help us sort

>thing sout.

>

> He told us to relax ( i had finaaly broke down and started to

>cry) and we would look at all 3 Dr.'s reports logically. The office

>even recieved the radiolgy report yesterday for the 1st time which

>was actually the key factor in our decision. The 1st Dr. said all

>surgery right away and there waas extreme pressure on thebrain. The

>2nd Dr. said possibly for surgery soon for the cranio, a little

>pressure maybe, and a helmut for the plagio. The 3rd dr. said no

>surgery no pressure (but to make sure see what an optomaligist says

>about his optic nerves) and a helmut will fix everything, even the

>cranio because it was so mild and its only partially closed. The

>radioligist said there was only a 1/4 of the suture fused and the

>rest was all plagio and he recommended orthodic therapy. we also

>went to the opto yesterday and he said there is no swelling of

>tyler's optic nerve and his vision is great and he'll see us back in

>2 mos. to further asses him.

>

> So with the help of our ped and the reports amd most importantly

>our instincts we are taking the conservative approach and we are not

>going to put tyler through another surgical procedure because it

>does'nt seem right. we are going to try the helmut and i pray to god

>it works. They say it is most effective under a year, so we've heard,

>and if after the therapy and it does'nt work than we can discuss

>other options. I am confident that we have made the right decision

>and i think i may be able to sleep easy again.

>

> I would love to hear everyones thoughts about my situation and if

>you don't agree with me please let me know because maybe you know

>more than i do , and you can be a big help. I hace not yet cancelled

>the surgery with the 1st Dr. I have'nt told him anything, i am going

>to meet with him and have all my other reports and i want to see what

>he has to say.

>

> Thank you all for listening once again

> Alison

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

October 3, 2001

--Alison,

My friend at work used this doctor at NYU and she has her little boy

in a helmet for a few months. She talks very highly of the doctor and

how he has advised them as a family.

Our little girl got cast yesterday we have been going to Yale

Childrens hospital as our insurance did not cover the physician at

NYU.

Unfortunately the doctors, who recommended the DOC band, at Yale are

not helping us with our HMO to get payment for the band as they will

not say it is medically necessary. Our HMO would pay if they would

write a letter to this effect. So a warning for any parents going to

Yale the doctors will not assist you with the claims program. My

husband and I are lucky enough to be able to pay but we think of the

other parents who it would be a huge struggle. Are their children any

less important? Of course not. As you can tell we are a bit annoyed

so for other parents we are going to pursue this for the benefit of

other parents in the future.

Talking with my friend the casting process for the helmet is very

similar to the DOC band.

Its always a difficult decision but you have to go with the one that

is right for you and your family

I'm sure like many moms & dads we are so relieved to hear that we are

not alone going through this. I feel so thankful for the initiative

of someone in the past for setting up this group. It has helped me so

much. Looking & hearing about the casting process before going

through it was a huge help. Thank you so much everyone.

(Ynez's mom)

- In Plagiocephaly@y..., " Alison " <eve1stladie@y...> wrote: