Amy and Kim in MN- long sorry

[Guest guest]

Hello my fellow MN friends I haven't been on the board in awhile

and have missed how things are going for both of you. How has

treatment been doing?

Do both of you see Dr Wood? Hope saw him recently and I wasn't too

happy about it. Hope will be a yr on the 29th and our Ortho has been

having a hard time getting her helmet to fit right anymore. He said

she has pretty much outgrown it and there is not a whole lot more he

can do with it.Our Ortho sent us back to Dr Wood to get approval to

have her recast with a new Cranio Cap. She has popped out ALOT and

is doing great but I am very frustrated with one major area that is

still pretty flat. Her bubble isn't even centered over the area and

what makes me notice it more is she has a " swirly " , like a cowlick,

right there where it is flat. Everyone I talk to who has seen her

and knows her agrees she is still pretty flat in that area, but Dr

Wood told us she could be done with the helmet!!! He made me feel

like I was being overly paranoid. He told me he thought she had come

along nicely and that I should just let nature work the rest out!! I

felt like saying " hey...I could have let nature do the whole

thing...but instead I got the stupid helmet " ...LOL...ahhhhh!!!

Anyways, I was feeling really shell shocked as i went in to get a

recast apporval and walked out with a helmetless girl. I went over

to cancel my apt for her helmet adjustments and the recp gal started

asking me if I was happy with the results, etc and I said " yes, but

no " . She had a diff Ortho guy come and talk to me and he was super,

super nice. He agreed that she still " did " have a pretty good flat

spot and that even though Dr Wood said she couldn't get a new recast

for a new helmet that they didn't have to stop working with her. He

said they could try and get another 2-4 wks and work with what they

have. He reassured me that continuing with the helmet won't hurt

her. I felt so much better after that. I am not striving for

perfection but I figure if we have come this far with it we should

stick it out, you know? Hope has also started to take the helmet

off...so I don't imagine we will get too much more time with it.

Have you ladies had any kind of problems like this? How are things

going for you?

Take care,

Ann in St

Hope 6/29/03-32wkr

[Guest guest]

Hi Ann,

Wow, I'm happy to hear that the ortho said they will continue

treatment when Dr Wood said Hope could be done. THATS GREAT! I wish

that had been the case with us and Jaxson. Sadly though, no. Jaxson

had grown out of his helmet, it was really tight the last time we had

seen Dr Wood. As much as I WANTED him to be round and be done, he

just wasn't but Dr Wood said for him to be out of it. He said the

same, the rest would round on it's own. HMPH to that BS.

Jaxson has been out of his helmet a little over 2 months. I tried

putting a baseball cap on him and it looks just awful, the left part

of his head pops out of it, the top you can see a bump... Someone

posted to me about it and said that if he can't wear a bball cap,

how's he gonna wear a bicycle helmet.

I asked about his head shape on Tue at PT (really OT but the ot

kinda does it all) and told her about CranialTech and how I would

like to go there, possibly, for an eval. I then ran into his ortho on

the way out and he felt Jax's head.. asked me how he/I was doing and

I told him.. he told me that they give them the starting point for

roundness. I went away thinkin.. UMMM, he's almost a year old.. it's

getting crunch time and I see it getting more flat, not better.

So, I'm going to email CT today, see what I can do. It's a long LONG

drive, but maybe it's worth it.. see what I can do.

Jaxson also has now had 2 seizures, one almost a month ago and one

last night.. very worried about that, as he has a cyst in his brain

that could be the cause of it. ARGH. Kids..eh? lol

So, 2-4 weeks and you'll get Hope a new cap? I really hadn't heard

of them recasting before and think it's great they'll be doing that

to help Hope. Keep me updated, u can also email me offline if you

would like.

Kim

> Hello my fellow MN friends I haven't been on the board in awhile

> and have missed how things are going for both of you. How has

> treatment been doing?

>

> Do both of you see Dr Wood? Hope saw him recently and I wasn't too

> happy about it. Hope will be a yr on the 29th and our Ortho has

been

> having a hard time getting her helmet to fit right anymore. He said

> she has pretty much outgrown it and there is not a whole lot more

he

> can do with it.Our Ortho sent us back to Dr Wood to get approval to

> have her recast with a new Cranio Cap. She has popped out ALOT and

> is doing great but I am very frustrated with one major area that is

> still pretty flat. Her bubble isn't even centered over the area and

> what makes me notice it more is she has a " swirly " , like a cowlick,

> right there where it is flat. Everyone I talk to who has seen her

> and knows her agrees she is still pretty flat in that area, but Dr

> Wood told us she could be done with the helmet!!! He made me feel

> like I was being overly paranoid. He told me he thought she had

come

> along nicely and that I should just let nature work the rest out!!

I

> felt like saying " hey...I could have let nature do the whole

> thing...but instead I got the stupid helmet " ...LOL...ahhhhh!!!

>

> Anyways, I was feeling really shell shocked as i went in to get a

> recast apporval and walked out with a helmetless girl. I went over

> to cancel my apt for her helmet adjustments and the recp gal

started

> asking me if I was happy with the results, etc and I said " yes, but

> no " . She had a diff Ortho guy come and talk to me and he was super,

> super nice. He agreed that she still " did " have a pretty good flat

> spot and that even though Dr Wood said she couldn't get a new

recast

> for a new helmet that they didn't have to stop working with her. He

> said they could try and get another 2-4 wks and work with what they

> have. He reassured me that continuing with the helmet won't hurt

> her. I felt so much better after that. I am not striving for

> perfection but I figure if we have come this far with it we should

> stick it out, you know? Hope has also started to take the helmet

> off...so I don't imagine we will get too much more time with it.

>

> Have you ladies had any kind of problems like this? How are things

> going for you?

> Take care,

> Ann in St

>

> Hope 6/29/03-32wkr

[Guest guest]

Howdy Ann and Kim!

Ann, I am glad your orthotist is milking out all the time he can w/

Hope's cap, even tho Dr. Wood won't recast. I went in there a few

weeks back to discuss Jaden's cap, only to be rear ended w/ this

whole scoliosis/xray crap and he didn't even brush on the issues I

was having w/ Jaden's cap, only to say " talk to your orthotist

upstairs and have him contact me since I don't make them " . Yup, I

walked out w/ the deer in the headlights look on my face. Then on

Tuesday I told Steve our orthotist what Dr. Wood said, he rolled his

eyes and I told him, yup, I am back at square one w/ you Steve, so

lets hash this out now between you and me about Jaden's cap. I had

a good talk w/ him tho. And Dr. Wood gave me the same

line, " Jaden's head is rounding out nicely, I think he'll be out of

it in another month " . WHAT?! I don't think so! He has only been

in it 6 & 1/2 weeks when I saw him, and as of today he has been in it

almost 8 weeks! You can't tell me at the end of 12 weeks he will

have outgrown it, I was told he'd be in it about 4 months, and uh,

isn't that 16 weeks? He hardly has any gaps where it velcros

closed. So yes, Dr. Wood is very quick and you always walk out not

getting in your 2cents w/ him because the conversation is always

redirected to other issues. I am learning to put my foot down and

say " wooooooooooooaaaaaaaaaah wait a minute, let's discuss the

issues I am hear for " . I am glad I did that w/ Steve.

I am like Kim, where I will consider the DOCBand after Jaden is done

w/ his CranioCap if I don't feel his is done rounding out. I am

glad CT offers free consults. But I hope it won't come to that. I

am praying Steve will be able to make the proper adjustments in

order for Jaden's head to continue rounding out well. The thing

that bothers me is that I am seeing a LOT of asymmetry in his face,

but one good thing is his ears have lined up MUCH better, you can

see it under Jaden's file in photos.

I understand your frustration completely, and am happy for you that

Hope can continue wearing the cap after Dr. Wood said she is " done "

despite you feeling she is not. Steve told me that I can let Jaden

continue wearing his when he is officially " done " also, whenever

that may be, and I was happy to hear that. But again, that depends

on how much he has grown out of it. As for Hope taking off the cap,

can you duct tape the velcro down to the cap so she can't grab a

hold of it and take it off? I know other parents on here have had

the same problem, you might want to research the archives for that

very same question, I know solutions have been posted, but as to

what, I am not sure. I have not run into that problem yet.

Keep us posted on her progress. It's good hearing from you, and you

can always email me as well.

~Amy, mommy to Jaden 7 mo's MN, plagio/mild tort/mild scoliosis,

started CranioCap 4/23/04

> Hi Ann,

> Wow, I'm happy to hear that the ortho said they will continue

> treatment when Dr Wood said Hope could be done. THATS GREAT! I

wish

> that had been the case with us and Jaxson. Sadly though, no.

Jaxson

> had grown out of his helmet, it was really tight the last time we

had

> seen Dr Wood. As much as I WANTED him to be round and be done, he

> just wasn't but Dr Wood said for him to be out of it. He said the

> same, the rest would round on it's own. HMPH to that BS.

> Jaxson has been out of his helmet a little over 2 months. I tried

> putting a baseball cap on him and it looks just awful, the left

part

> of his head pops out of it, the top you can see a bump... Someone

> posted to me about it and said that if he can't wear a bball cap,

> how's he gonna wear a bicycle helmet.

> I asked about his head shape on Tue at PT (really OT but the ot

> kinda does it all) and told her about CranialTech and how I would

> like to go there, possibly, for an eval. I then ran into his ortho

on

> the way out and he felt Jax's head.. asked me how he/I was doing

and

> I told him.. he told me that they give them the starting point for

> roundness. I went away thinkin.. UMMM, he's almost a year old..

it's

> getting crunch time and I see it getting more flat, not better.

> So, I'm going to email CT today, see what I can do. It's a long

LONG

> drive, but maybe it's worth it.. see what I can do.

> Jaxson also has now had 2 seizures, one almost a month ago and

one

> last night.. very worried about that, as he has a cyst in his

brain

> that could be the cause of it. ARGH. Kids..eh? lol

> So, 2-4 weeks and you'll get Hope a new cap? I really hadn't

heard

> of them recasting before and think it's great they'll be doing

that

> to help Hope. Keep me updated, u can also email me offline if you

> would like.

>

> Kim

>

> --- In Plagiocephaly , " Ann " <myhushpuppy@y...>

wrote:

> > Hello my fellow MN friends I haven't been on the board in

awhile

> > and have missed how things are going for both of you. How has

> > treatment been doing?

> >

> > Do both of you see Dr Wood? Hope saw him recently and I wasn't

too

> > happy about it. Hope will be a yr on the 29th and our Ortho has

> been

> > having a hard time getting her helmet to fit right anymore. He

said

> > she has pretty much outgrown it and there is not a whole lot

more

> he

> > can do with it.Our Ortho sent us back to Dr Wood to get approval

to

> > have her recast with a new Cranio Cap. She has popped out ALOT

and

> > is doing great but I am very frustrated with one major area that

is

> > still pretty flat. Her bubble isn't even centered over the area

and

> > what makes me notice it more is she has a " swirly " , like a

cowlick,

> > right there where it is flat. Everyone I talk to who has seen

her

> > and knows her agrees she is still pretty flat in that area, but

Dr

> > Wood told us she could be done with the helmet!!! He made me

feel

> > like I was being overly paranoid. He told me he thought she had

> come

> > along nicely and that I should just let nature work the rest

out!!

> I

> > felt like saying " hey...I could have let nature do the whole

> > thing...but instead I got the stupid helmet " ...LOL...ahhhhh!!!

> >

> > Anyways, I was feeling really shell shocked as i went in to get

a

> > recast apporval and walked out with a helmetless girl. I went

over

> > to cancel my apt for her helmet adjustments and the recp gal

> started

> > asking me if I was happy with the results, etc and I said " yes,

but

> > no " . She had a diff Ortho guy come and talk to me and he was

super,

> > super nice. He agreed that she still " did " have a pretty good

flat

> > spot and that even though Dr Wood said she couldn't get a new

> recast

> > for a new helmet that they didn't have to stop working with her.

He

> > said they could try and get another 2-4 wks and work with what

they

> > have. He reassured me that continuing with the helmet won't hurt

> > her. I felt so much better after that. I am not striving for

> > perfection but I figure if we have come this far with it we

should

> > stick it out, you know? Hope has also started to take the helmet

> > off...so I don't imagine we will get too much more time with it.

> >

> > Have you ladies had any kind of problems like this? How are

things

> > going for you?

> > Take care,

> > Ann in St

> >

> > Hope 6/29/03-32wkr