No helmet for Frazier after all....

[Guest guest]

Eileen,

I think that if thats how you and your husband feel, then that is definately what

is best for Frazier. Best of Luck to you, you are doing a good job. I am glad

to see that you will be sticking around because there are alot of people out there

who will not want to band for whatever reasons and you will be there to put them at

ease about thier decision. Again, Best of Luck!

Cheryl...s Mom-Mom

Banded 5/22/01

[Guest guest]

Hello everyone! Sunday night and I just want to give a quick run down

on our new status. After our casting on Friday I thought I felt

great. We thought we made the right decision for us, despite the fact

that our neuro didn't request that we do it. But as Friday night set

in, my stomach felt ill and the lump in my throat wouldn't disappear.

My husband and I talked for hours, cried, laughed, etc. We couldn't

help but think of our dog; when she came home from the vet with a

cone over her head after she got fixed. We were supposed to keep it

on for 2 weeks, and I couldn't do it. I cried for her and felt so

awful that I couldn't explain to her why she had to wear it. Then in

a similiar manner, we live near Valley Forge Park, a place full of

deer, too many of them. Many have been captured and tagged. Those

wear large collars around their necks with antennas sticking out of

them. I feel so sad for them. I am not ready to commit to the helmet.

We are lucky enough to live near 2 of the best childrens hospitals,

DuPont and CHOP, at both hospitals the neurosurgeons seem to be

against banding for cosmetic purposes. These are the best doctors in

their field, they must know something. I am also lucky enough to be a

stay at home mom, I have the opportunity to do my best to keep

Frazier off his flat side and reposition him as best I can. At a

family picnic this weekend everyone was waiting to see Frazier

interested in what this head of his would look like, yet they all

thought we were crazy, noone could see it unless we specifically

pointed it out, and he's even bald! Also met a family friend there

whose baby had Plagio years ago, before anyone knew what it was, they

never saw a neuro, no talk of helmets or bands, never gave it a

second thought, today it is unnoticable. We saw him, he looks

perfect! I feel whole again, ready to stay with this group and be

here for anyone who wants advice on not banding. It was a week ago

that I joined the group and I spent the whole week just frazzled

reading all the messages, I got so scared. I am not scared tonight. I

am at peace. We shall see how his head evolves, my neuro will think

I'm nuts since I practically demanded him to give us the helmet! I

will hear back from him tomorrow. Thank you all for the support you

have given me, I am glad I joined this group and hope to be here to

help any new members who decide not to band!!!

Eileen, Frazier's mommy

[Guest guest]

Hi Eileen,

I totally understand exactly how you feel. I went through

everything you mentioned before and I was worse than you. I refused

to even see a specialist until she was 12 mths so we had given her

enough chance to correct on her own. I was not putting my little

cutie pie in a helmet to look like a handicapped kid(sorry if I

insulted anyone) but thats how I felt then.

Mackenzie was probably as bad as Frazier from the back,she had a

puffier cheek. I dident notice it was that bad till I saw the head

mould(headsickle). Go back when the mould comes in and have a second

look and if the mould looks ok to you forget about it. We dont want

you to go through hell for this.

The only thing about waiting like us is the heads grows 80% in

the first year so you will get the best correction.

I wish for you this will round out for you and Frazers sake,

thats all I wanted for us too. Unfortunatly it got no better at all.

Dont beat yourself up. Check out the Doc site at cranial

technologies I think there helmets work the beast and look the cutest

(open top). also see if Ins will pre approve and if you do change

your mind you will have done the research.

from someone who knows how you feel I want to seng you a big

(((hug))) and one to Frazier too.

Lorraine Sonntag,

Boca Raton FL.

> Hello everyone! Sunday night and I just want to give a quick run

down

> on our new status. After our casting on Friday I thought I felt

> great. We thought we made the right decision for us, despite the

fact

> that our neuro didn't request that we do it. But as Friday night

set

> in, my stomach felt ill and the lump in my throat wouldn't

disappear.

> My husband and I talked for hours, cried, laughed, etc. We couldn't

> help but think of our dog; when she came home from the vet with a

> cone over her head after she got fixed. We were supposed to keep it

> on for 2 weeks, and I couldn't do it. I cried for her and felt so

> awful that I couldn't explain to her why she had to wear it. Then

in

> a similiar manner, we live near Valley Forge Park, a place full of

> deer, too many of them. Many have been captured and tagged. Those

> wear large collars around their necks with antennas sticking out of

> them. I feel so sad for them. I am not ready to commit to the

helmet.

> We are lucky enough to live near 2 of the best childrens hospitals,

> DuPont and CHOP, at both hospitals the neurosurgeons seem to be

> against banding for cosmetic purposes. These are the best doctors

in

> their field, they must know something. I am also lucky enough to be

a

> stay at home mom, I have the opportunity to do my best to keep

> Frazier off his flat side and reposition him as best I can. At a

> family picnic this weekend everyone was waiting to see Frazier

> interested in what this head of his would look like, yet they all

> thought we were crazy, noone could see it unless we specifically

> pointed it out, and he's even bald! Also met a family friend there

> whose baby had Plagio years ago, before anyone knew what it was,

they

> never saw a neuro, no talk of helmets or bands, never gave it a

> second thought, today it is unnoticable. We saw him, he looks

> perfect! I feel whole again, ready to stay with this group and be

> here for anyone who wants advice on not banding. It was a week ago

> that I joined the group and I spent the whole week just frazzled

> reading all the messages, I got so scared. I am not scared tonight.

I

> am at peace. We shall see how his head evolves, my neuro will think

> I'm nuts since I practically demanded him to give us the helmet! I

> will hear back from him tomorrow. Thank you all for the support you

> have given me, I am glad I joined this group and hope to be here to

> help any new members who decide not to band!!!

> Eileen, Frazier's mommy

[Guest guest]

Hi Eileen,

I totally understand exactly how you feel. I went through

everything you mentioned before and I was worse than you. I refused

to even see a specialist until she was 12 mths so we had given her

enough chance to correct on her own. I was not putting my little

cutie pie in a helmet to look like a handicapped kid(sorry if I

insulted anyone) but thats how I felt then.

Mackenzie was probably as bad as Frazier from the back,she had a

puffier cheek. I dident notice it was that bad till I saw the head

mould(headsickle). Go back when the mould comes in and have a second

look and if the mould looks ok to you forget about it. We dont want

you to go through hell for this.

The only thing about waiting like us is the heads grows 80% in

the first year so you will get the best correction.

I wish for you this will round out for you and Frazers sake,

thats all I wanted for us too. Unfortunatly it got no better at all.

Dont beat yourself up. Check out the Doc site at cranial

technologies I think there helmets work the beast and look the cutest

(open top). also see if Ins will pre approve and if you do change

your mind you will have done the research.

from someone who knows how you feel I want to seng you a big

(((hug))) and one to Frazier too.

Lorraine Sonntag,

Boca Raton FL.

> Hello everyone! Sunday night and I just want to give a quick run

down

> on our new status. After our casting on Friday I thought I felt

> great. We thought we made the right decision for us, despite the

fact

> that our neuro didn't request that we do it. But as Friday night

set

> in, my stomach felt ill and the lump in my throat wouldn't

disappear.

> My husband and I talked for hours, cried, laughed, etc. We couldn't

> help but think of our dog; when she came home from the vet with a

> cone over her head after she got fixed. We were supposed to keep it

> on for 2 weeks, and I couldn't do it. I cried for her and felt so

> awful that I couldn't explain to her why she had to wear it. Then

in

> a similiar manner, we live near Valley Forge Park, a place full of

> deer, too many of them. Many have been captured and tagged. Those

> wear large collars around their necks with antennas sticking out of

> them. I feel so sad for them. I am not ready to commit to the

helmet.

> We are lucky enough to live near 2 of the best childrens hospitals,

> DuPont and CHOP, at both hospitals the neurosurgeons seem to be

> against banding for cosmetic purposes. These are the best doctors

in

> their field, they must know something. I am also lucky enough to be

a

> stay at home mom, I have the opportunity to do my best to keep

> Frazier off his flat side and reposition him as best I can. At a

> family picnic this weekend everyone was waiting to see Frazier

> interested in what this head of his would look like, yet they all

> thought we were crazy, noone could see it unless we specifically

> pointed it out, and he's even bald! Also met a family friend there

> whose baby had Plagio years ago, before anyone knew what it was,

they

> never saw a neuro, no talk of helmets or bands, never gave it a

> second thought, today it is unnoticable. We saw him, he looks

> perfect! I feel whole again, ready to stay with this group and be

> here for anyone who wants advice on not banding. It was a week ago

> that I joined the group and I spent the whole week just frazzled

> reading all the messages, I got so scared. I am not scared tonight.

I

> am at peace. We shall see how his head evolves, my neuro will think

> I'm nuts since I practically demanded him to give us the helmet! I

> will hear back from him tomorrow. Thank you all for the support you

> have given me, I am glad I joined this group and hope to be here to

> help any new members who decide not to band!!!

> Eileen, Frazier's mommy

[Guest guest]

Eileen,

Thanks for having the COURAGE to share your thoughts and experiences

with the group. I am sure there are many other parents out there who

will benefit from your knowledge and experiences with Frazier! Stay

proactive with his condition and be diligent with the repositioning.

Trust in the wisdom of your Dr who has years of training with cranial

problems. If at anytime you are unhappy with Frazier's progress or

your neuro....seek a second opinion from another neuro. In two

months you might not be happy with the improvement and might revisit

the idea of banding. But, right now Frazier is still young enough to

give AGGRESSIVE repositioning a try. His little head has years of

growth ahead! Best of luck to you and your family. Look forward to

hearing about Frazier's nice ROUND noggin!

-- In Plagiocephaly@y..., frazleen@a... wrote:

> Hello everyone! Sunday night and I just want to give a quick run

down

> on our new status. After our casting on Friday I thought I felt

> great. We thought we made the right decision for us, despite the

fact

> that our neuro didn't request that we do it. But as Friday night

set

> in, my stomach felt ill and the lump in my throat wouldn't

disappear.

> My husband and I talked for hours, cried, laughed, etc. We couldn't

> help but think of our dog; when she came home from the vet with a

> cone over her head after she got fixed. We were supposed to keep it

> on for 2 weeks, and I couldn't do it. I cried for her and felt so

> awful that I couldn't explain to her why she had to wear it. Then

in

> a similiar manner, we live near Valley Forge Park, a place full of

> deer, too many of them. Many have been captured and tagged. Those

> wear large collars around their necks with antennas sticking out of

> them. I feel so sad for them. I am not ready to commit to the

helmet.

> We are lucky enough to live near 2 of the best childrens hospitals,

> DuPont and CHOP, at both hospitals the neurosurgeons seem to be

> against banding for cosmetic purposes. These are the best doctors

in

> their field, they must know something. I am also lucky enough to be

a

> stay at home mom, I have the opportunity to do my best to keep

> Frazier off his flat side and reposition him as best I can. At a

> family picnic this weekend everyone was waiting to see Frazier

> interested in what this head of his would look like, yet they all

> thought we were crazy, noone could see it unless we specifically

> pointed it out, and he's even bald! Also met a family friend there

> whose baby had Plagio years ago, before anyone knew what it was,

they

> never saw a neuro, no talk of helmets or bands, never gave it a

> second thought, today it is unnoticable. We saw him, he looks

> perfect! I feel whole again, ready to stay with this group and be

> here for anyone who wants advice on not banding. It was a week ago

> that I joined the group and I spent the whole week just frazzled

> reading all the messages, I got so scared. I am not scared tonight.

I

> am at peace. We shall see how his head evolves, my neuro will think

> I'm nuts since I practically demanded him to give us the helmet! I

> will hear back from him tomorrow. Thank you all for the support you

> have given me, I am glad I joined this group and hope to be here to

> help any new members who decide not to band!!!

> Eileen, Frazier's mommy

[Guest guest]

Oh Eileen what an emotional roller coaster you have been on in the last 10 days. I am glad (again) that you have come to a decision that you feel at peace with. You are the one who has to live with the decision that you make for Frazier and only you (with the hubby support) know what is best. I am glad you have found us and have shared your experience and I am thankful you will stay around to help other mommies. It is hard when you come to this board not to want to band since most mommies here have done it-but you will be a WONDERFUL testimony and resource to the 100's of other mommies who come to our board looking for the same option-not to band. I hope you will continue to take regular pictures and please update us on how the progress of Friazier's noggin is doing. We want nothing more than to hear he has rounded perfectly and that things are going great. I am glad you found us and glad you will stick around. Good luck and here is to a round noggin with Frazier.

Fondly, Beck Mom to Memphis, TN

[Guest guest]

Thank you for your message, that is encouraging. Today is the first day since

May that I have not been going back and forth in my head. I can look at

Frazier and smile at him and not be worrying behind that smile. I know for a

fact that I didn't want the Starband after reading up on it and reading all

the posts. If ever I need to rethink the decision I would definitely go with

the DOC, just from all I have learned. Maybe if there was a DOC clinic nearer

to me I'd have been more likely to try it. But I know myself, once we pay all

the money and go through all the fittings, guaranteed I'd have taken it off

and left it off within a matter of days. We will make progress without it, I

am sure of it! Eileen

[Guest guest]

Eileen,

I think you know that I, for what its worth, and I think the group as well, supports your decision, either way. We all know how hard it is to make the decision and like we discussed, only you can know what is best for you. I too have seen kids with flat heads and even yesterday found out that my cousin's daughter has to have special bike helmets made for riding her bike, because she has a "shelf" in the back, but no one made a big deal out of it for her. The fact that you are home and able to reposition is key..you might be able to make a big difference especially once he is off of his head and sitting on his own..I do not have that luxury as I work and is in daycare, that is mostly why we went this route. I couldn't be sure what was happening for most of his day, so the stress of it was killing me! Whatever you decide, this group is a great abundance of information, support and stress relief! Wishing you all the best and this message is for all moms that have opted to non-band. I don't judge you, because I almost was you, and I know that it is and has been for me, the hardest decision to make, because it is not black and white but verrrrry gray because we do not ultimately know what each child will do on its own, round or not. How can us banding moms be critical of those that don't band? This was a toughie and every one of us is dealing with different factors (i.e., severity, money, travel, etc.). Keep in touch and all the best!

' mom