Colin W's ongoing fit issues

[Guest guest]

Hi all. I should start with the psotive. We have significant

correction a month into receiving the helmet, only 3 weeks or so full

time wear. I might not even band him if we started the process

today!

I posted pics of the ear trouble, and the shifting. And we are still

ahving some trouble. The last visit to the orthotist, he was so

meticulous and really seemed to get it great. He was also very

surprised at th grwoth Colin had and after only 5 days, had to make

the interior larger all around, just a bit. So, I feel like he

is " on top of it. " I do think we have had rapid growth and some

changes, so the fit changes quickly. I get excellent response and

cooperation if we need early appts.

So my dilemma is the ortho is on vacation and I think we need

adjusting before our next appt. in a week and a half. I can be

referred to another Hnager facility for an emergency adjustment, I

believe, as we discussed that. He said they would give me a list of

other facilities I could call, but he seemd to not really recommend

anyone strongly. So, I feel nervous to call then for that. There is

obvioulsy no-one else at our site who does the helmets.

So, I can wait it out and just reduce wear if it seems problematic.

I do think it is going to be too tight. Felt tight the last day or

two going on and Colin bawked just a bit. But, we do not have any

skin troubles, so it cannot be that bad a fit, right?? Our appt is

the 30th. Or, I can try for another ortho(one is even pretty colse

to me, if they can see me), but I feel nervous to have a new person

tamper with the helmet. On the other hand, maybe they will do it

better, right?

Any opinions? I just keep second guessing the band especially with

all the raves about DOCbands. I hate feeling this way. I have to

keep reminding myself that we see good correction. Thanks, mish

[Guest guest]

Hi Mish- That is a tricky situation. I guess if I saw red spots that

didn't go away after an hour, I would have to get a fitting. I wouldn't

go without the helmet- I would just call the other hanger facility and

mention your dilemma. Fish around when you call. Ask a lot of questions

to see who is qualified and who has done helmet therapy for a long

time.

That is FANTASTIC that Colin has had correction already! The helmet

probably was giving you problems because he was GROWING! YEAH!!!!!

Keep us posted!

Krissy

ph's mom

4/28/04 Starband at 7 months

Palm Harbor, FL

On Jun 18, 2004, at 9:44 PM, cjwrcw wrote:

> Hi all. I should start with the psotive. We have significant

> correction a month into receiving the helmet, only 3 weeks or so full

> time wear. I might not even band him if we started the process

> today!

>

> I posted pics of the ear trouble, and the shifting. And we are still

> ahving some trouble. The last visit to the orthotist, he was so

> meticulous and really seemed to get it great. He was also very

> surprised at th grwoth Colin had and after only 5 days, had to make

> the interior larger all around, just a bit. So, I feel like he

> is " on top of it. " I do think we have had rapid growth and some

> changes, so the fit changes quickly. I get excellent response and

> cooperation if we need early appts.

>

> So my dilemma is the ortho is on vacation and I think we need

> adjusting before our next appt. in a week and a half. I can be

> referred to another Hnager facility for an emergency adjustment, I

> believe, as we discussed that. He said they would give me a list of

> other facilities I could call, but he seemd to not really recommend

> anyone strongly. So, I feel nervous to call then for that. There is

> obvioulsy no-one else at our site who does the helmets.

>

> So, I can wait it out and just reduce wear if it seems problematic.

> I do think it is going to be too tight. Felt tight the last day or

> two going on and Colin bawked just a bit. But, we do not have any

> skin troubles, so it cannot be that bad a fit, right?? Our appt is

> the 30th. Or, I can try for another ortho(one is even pretty colse

> to me, if they can see me), but I feel nervous to have a new person

> tamper with the helmet. On the other hand, maybe they will do it

> better, right?

>

> Any opinions? I just keep second guessing the band especially with

> all the raves about DOCbands. I hate feeling this way. I have to

> keep reminding myself that we see good correction. Thanks, mish

>

>

>

>

>

>

> For more plagio info

[Guest guest]

" That is FANTASTIC that Colin has had correction already! The helmet

probably was giving you problems because he was GROWING! YEAH!!!!! "

Thankyou for your reply, Krissy, and it is so reassuring to hear that

you think that might be it! I was thinking that as well. It can

only be so loose to hold on at the right places, yet is tight each

time before our next scheduled visit, or gets crooked. The ortho and

I were both a bit worried that we would not make it to the next

appt., but the poor guy deserves a vacation. They need a better

sytem in place for coverage though.

Actually, right now, it is sitting really well on his head, as he

plays in the exersaucer, just a little push(angry eyes) in the

forehead form being a tad tight. He is also extremely active, and so

rolls and arches and pushes the helmet around alot when he uses it

for support. He will literally use his head and plant it to try to

get his knees up to crawl, grunting and groaning and trying so hard!

I just do not see how it cannot move around a little. That is when

it slides over his ear(laying on it in some way).

Thanks for your input. I was thinking if I did have him in it less,

the fit would get way off. Gosh I think his head looks great this

am! There is still a little flatness, but nothing like many children

I see who never had any treatment. That is why I sometimes consider

just being done with it all. But I guess it needs to be on a bit

after correction to stabilize and hold things. I am also still

waiting on insurance approval. Don't want to get denied for being

noncompliant! mish

>

> > Hi all. I should start with the psotive. We have significant

> > correction a month into receiving the helmet, only 3 weeks or so

full

> > time wear. I might not even band him if we started the process

> > today!

> >

> > I posted pics of the ear trouble, and the shifting. And we are

still

> > ahving some trouble. The last visit to the orthotist, he was so

> > meticulous and really seemed to get it great. He was also very

> > surprised at th grwoth Colin had and after only 5 days, had to

make

> > the interior larger all around, just a bit. So, I feel like he

> > is " on top of it. " I do think we have had rapid growth and some

> > changes, so the fit changes quickly. I get excellent response and

> > cooperation if we need early appts.

> >

> > So my dilemma is the ortho is on vacation and I think we need

> > adjusting before our next appt. in a week and a half. I can be

> > referred to another Hnager facility for an emergency adjustment, I

> > believe, as we discussed that. He said they would give me a list

of

> > other facilities I could call, but he seemd to not really

recommend

> > anyone strongly. So, I feel nervous to call then for that.

There is

> > obvioulsy no-one else at our site who does the helmets.

> >

> > So, I can wait it out and just reduce wear if it seems

problematic.

> > I do think it is going to be too tight. Felt tight the last day

or

> > two going on and Colin bawked just a bit. But, we do not have any

> > skin troubles, so it cannot be that bad a fit, right?? Our appt is

> > the 30th. Or, I can try for another ortho(one is even pretty

colse

> > to me, if they can see me), but I feel nervous to have a new

person

> > tamper with the helmet. On the other hand, maybe they will do it

> > better, right?

> >

> > Any opinions? I just keep second guessing the band especially

with

> > all the raves about DOCbands. I hate feeling this way. I have to

> > keep reminding myself that we see good correction. Thanks, mish

> >

> >

> >

> >

> >

> >

> > For more plagio info

[Guest guest]

Hi Mish!

I'm so glad to hear Colin is having such great correction! I

actually typed out an email to you yesterday, only to have eat

it when I pushed send! It sounds like the fit issues may be the

result of a growth spurt and changes to Colin's head! Yae! I would

get it checked out though, one to ease your mind and two to prevent

any skin irritations if there is an issue.

I haven't checked the boards in a while, and was just signing on to

do a quick Nate update: he's had such fantastic growth very quickly

(35 days of wear; 28 days full-time). He's actually at a point where

if the helmet were to disappear tomorrow I wouldn't care.

If you want, I will call Nate's ortho on Monday and see if he can

see Colin. He's been great on getting us in on short notice. Just

let me know!

Mom to Nate (8 months)

Hanger Cranial Band (5-14-04)

--- In Plagiocephaly , " cjwrcw " <michele_walsh@y...>

wrote:

> Hi all. I should start with the psotive. We have significant

> correction a month into receiving the helmet, only 3 weeks or so

full

> time wear. I might not even band him if we started the process

> today!

>

> I posted pics of the ear trouble, and the shifting. And we are

still

> ahving some trouble. The last visit to the orthotist, he was so

> meticulous and really seemed to get it great. He was also very

> surprised at th grwoth Colin had and after only 5 days, had to

make

> the interior larger all around, just a bit. So, I feel like he

> is " on top of it. " I do think we have had rapid growth and some

> changes, so the fit changes quickly. I get excellent response and

> cooperation if we need early appts.

>

> So my dilemma is the ortho is on vacation and I think we need

> adjusting before our next appt. in a week and a half. I can be

> referred to another Hnager facility for an emergency adjustment, I

> believe, as we discussed that. He said they would give me a list

of

> other facilities I could call, but he seemd to not really

recommend

> anyone strongly. So, I feel nervous to call then for that. There

is

> obvioulsy no-one else at our site who does the helmets.

>

> So, I can wait it out and just reduce wear if it seems

problematic.

> I do think it is going to be too tight. Felt tight the last day

or

> two going on and Colin bawked just a bit. But, we do not have any

> skin troubles, so it cannot be that bad a fit, right?? Our appt is

> the 30th. Or, I can try for another ortho(one is even pretty

colse

> to me, if they can see me), but I feel nervous to have a new

person

> tamper with the helmet. On the other hand, maybe they will do it

> better, right?

>

> Any opinions? I just keep second guessing the band especially

with

> all the raves about DOCbands. I hate feeling this way. I have to

> keep reminding myself that we see good correction. Thanks, mish

[Guest guest]

Gosh Mish,

I really don't know what to tell you. I don't think that I've heard

of a similar circumstance. Is he just on vacation next week? Since

he didn't " strongly " recommend anyone else I probably would just keep

an eye on red spots and leave it off if need be. You would hate for

your band to be ruined by an inexperienced ortho and it sounds like

you've got a good one so far. How old is Colin again?

Natasha

--- In Plagiocephaly , " cjwrcw " <michele_walsh@y...>

wrote:

> Hi all. I should start with the psotive. We have significant

> correction a month into receiving the helmet, only 3 weeks or so

full

> time wear. I might not even band him if we started the process

> today!

>

> I posted pics of the ear trouble, and the shifting. And we are

still

> ahving some trouble. The last visit to the orthotist, he was so

> meticulous and really seemed to get it great. He was also very

> surprised at th grwoth Colin had and after only 5 days, had to make

> the interior larger all around, just a bit. So, I feel like he

> is " on top of it. " I do think we have had rapid growth and some

> changes, so the fit changes quickly. I get excellent response and

> cooperation if we need early appts.

>

> So my dilemma is the ortho is on vacation and I think we need

> adjusting before our next appt. in a week and a half. I can be

> referred to another Hnager facility for an emergency adjustment, I

> believe, as we discussed that. He said they would give me a list

of

> other facilities I could call, but he seemd to not really recommend

> anyone strongly. So, I feel nervous to call then for that. There

is

> obvioulsy no-one else at our site who does the helmets.

>

> So, I can wait it out and just reduce wear if it seems

problematic.

> I do think it is going to be too tight. Felt tight the last day or

> two going on and Colin bawked just a bit. But, we do not have any

> skin troubles, so it cannot be that bad a fit, right?? Our appt is

> the 30th. Or, I can try for another ortho(one is even pretty colse

> to me, if they can see me), but I feel nervous to have a new person

> tamper with the helmet. On the other hand, maybe they will do it

> better, right?

>

> Any opinions? I just keep second guessing the band especially with

> all the raves about DOCbands. I hate feeling this way. I have to

> keep reminding myself that we see good correction. Thanks, mish

[Guest guest]

Thanks, Natasha. He is away for just one week, but then not in the

clinic until wed, June 30th(he goes to other hospitals and such). As

it is I went in early, getting squeezed in before the vacation.

Colin is 5.5 months now. I guess I should stop worrying, as it does

not help, and just watch and see. I can call the office and ask what

to do in the event it gets too tight. I mean, if he were really sick

or something(fever) I was told to keep it off him, so a few days for

whatever reason cannot be too problematic, right?

As you said, I am a bit hesitant to have someone else adjust it as it

has seemed to be tricky, and that person would not have that

technical history. mish

> > Hi all. I should start with the psotive. We have significant

> > correction a month into receiving the helmet, only 3 weeks or so

> full

> > time wear. I might not even band him if we started the process

> > today!

> >

> > I posted pics of the ear trouble, and the shifting. And we are

> still

> > ahving some trouble. The last visit to the orthotist, he was so

> > meticulous and really seemed to get it great. He was also very

> > surprised at th grwoth Colin had and after only 5 days, had to

make

> > the interior larger all around, just a bit. So, I feel like he

> > is " on top of it. " I do think we have had rapid growth and some

> > changes, so the fit changes quickly. I get excellent response

and

> > cooperation if we need early appts.

> >

> > So my dilemma is the ortho is on vacation and I think we need

> > adjusting before our next appt. in a week and a half. I can be

> > referred to another Hnager facility for an emergency adjustment,

I

> > believe, as we discussed that. He said they would give me a list

> of

> > other facilities I could call, but he seemd to not really

recommend

> > anyone strongly. So, I feel nervous to call then for that.

There

> is

> > obvioulsy no-one else at our site who does the helmets.

> >

> > So, I can wait it out and just reduce wear if it seems

> problematic.

> > I do think it is going to be too tight. Felt tight the last day

or

> > two going on and Colin bawked just a bit. But, we do not have

any

> > skin troubles, so it cannot be that bad a fit, right?? Our appt

is

> > the 30th. Or, I can try for another ortho(one is even pretty

colse

> > to me, if they can see me), but I feel nervous to have a new

person

> > tamper with the helmet. On the other hand, maybe they will do it

> > better, right?

> >

> > Any opinions? I just keep second guessing the band especially

with

> > all the raves about DOCbands. I hate feeling this way. I have

to

> > keep reminding myself that we see good correction. Thanks, mish

[Guest guest]

Hi Mish,

I just looked at Colin's pics again. I think it's great you are

seeing significant correction at his age, but you also definitely

should be at his age. He and Hannah were banded at just about the

same age if I remember correctly. Her 3 week progress pic is in her

folder, and she started at 4.5 mos. It definitely was a shocking

difference. I can also say though that I see why you are concerned

about the ear area. Hannah has had 3 bands now and her ear holes

have always lined up perfectly. Is the ear on the other side lined

up well? If so, I'd say they just messed up in cutting his ear

opening. But, if the other isn't lined up well either than it would

be a shifting problem. Either of these things isn't great b/c it

certainly could alter where his holding points would be, but if you

are seeing correction in all the right spots that you are happy with

than it is up to you whether or not you keep it as is. If it is a

cut out problem obviously the only thing they could do is make him a

new helmet. As far as the shifting, Hannah's head was severe and

she had a good deal of shifting, but it wasn't side to side, more

like up and down, especially when she was on her back. In her

folder you can see the pic called " gap " this is when she was at her

most severe and the helmet is made to a round head, so she had a

very big gap of space back there. As this filled in and her head

began to round it began to fit better. Hopefully this will be the

same for Colin if it is a shifting issue. At his age you really

shouldn't go more than a week or so between fittings, but I think I

would just take the same wait and see approach you're talking

about. You seem to have an experienced ortho, so if you don't have

to have someone else potentially make it into a bad thing, than I

wouldn't. I'd just watch really close for red spots. So, as far as

the fit goes, do you think it is more of just a shifting thing, or

do you actually think the ear hole on his left side was cut out

incorrectly? It's hard for me to say w/out seeing the right side at

the same time. Colin looks very cute in it though!

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

--- In Plagiocephaly , " cjwrcw " <michele_walsh@y...>

wrote:

> Hi all. I should start with the psotive. We have significant

> correction a month into receiving the helmet, only 3 weeks or so

full

> time wear. I might not even band him if we started the process

> today!

>

> I posted pics of the ear trouble, and the shifting. And we are

still

> ahving some trouble. The last visit to the orthotist, he was so

> meticulous and really seemed to get it great. He was also very

> surprised at th grwoth Colin had and after only 5 days, had to

make

> the interior larger all around, just a bit. So, I feel like he

> is " on top of it. " I do think we have had rapid growth and some

> changes, so the fit changes quickly. I get excellent response and

> cooperation if we need early appts.

>

> So my dilemma is the ortho is on vacation and I think we need

> adjusting before our next appt. in a week and a half. I can be

> referred to another Hnager facility for an emergency adjustment, I

> believe, as we discussed that. He said they would give me a list

of

> other facilities I could call, but he seemd to not really

recommend

> anyone strongly. So, I feel nervous to call then for that. There

is

> obvioulsy no-one else at our site who does the helmets.

>

> So, I can wait it out and just reduce wear if it seems

problematic.

> I do think it is going to be too tight. Felt tight the last day

or

> two going on and Colin bawked just a bit. But, we do not have any

> skin troubles, so it cannot be that bad a fit, right?? Our appt is

> the 30th. Or, I can try for another ortho(one is even pretty

colse

> to me, if they can see me), but I feel nervous to have a new

person

> tamper with the helmet. On the other hand, maybe they will do it

> better, right?

>

> Any opinions? I just keep second guessing the band especially

with

> all the raves about DOCbands. I hate feeling this way. I have to

> keep reminding myself that we see good correction. Thanks, mish

[Guest guest]

Hi ,

I had meant to reply to you on Hannah's pictures. After we had been

in contact, I went back to take another look at her pictures(I have

looked at all on the board, I think!). Her three week progress is so

striking! It must have felt so good to see. She is so precious,

BTW. Such a sweet face, and of course, adorable in the band!

When the left ear is being squished, the right is being pushed

forward. I wonder if the initial cut is a bit off. The orthotist

quickly added some pads at the suboccipital region to add

stabilization. The fit was great, except low on the eyes(trimmed up

there) until the foam was removed from the flat area. The other

thing I notice is Colin's flat area is quite low into his

suboccipital region, so he has no prominence there for the " anchor "

to grab. This is the most significant remaining area needing

correction.

Now that he has grown so, I do think the ear holes will need some

trimming, but both sides. It seemed fine here at the beginning, so

it seems there would need to be some adjustment here for growth.

I will have to just wait and see. Our orthotist is new to scanning,

and said so, and had a trainer with him from the company. He did say

the fit is better with the scanning than with casting, but wanted me

to know he had alot of experience with helmets, if not the new

scanner. So, I guess it could be a bad cut, or just off enough that

it will not last the growth Colin has throughout his treatment. In

hindsight, I should have insisted we be seen the last possible moment

before that vacation!

On a bright note, I met a pediatric neurologist from Toronto

Children's(or is it Sick Children's) Hospital. He was at an outing

for dh's work, a relative visiting the host. He was very nice and

was noticing Colin's head(we removed the helmet as it got very hot).

He thought he looked pretty good, but would benefit from continued

treatment. We never got x-rays, and that nags at me, and he

expressed surprise at that. I don't think our surgeon even touched

Colin's head, except with the metal caliper to measure. The Dr.

today emphasized that growth is key, and if he is growing and

improving, it is doubtful there is any synestosis(it was a party, so

I did not have him feel it or anything!). He is definately growing.

He was generally very reassuring about his overall head shape, and

especially since he is very active on his tummy. Said it is a good

candidate to improve even on its own. Just nice to get a second

opinion, and in such a friendly way. Colin was performing very

well, rolling, doing all his prone and pivot prone moves, LOL.

Thanks for your reply. It is nice to hear that it all sounds within

reason, as opposed to a total mess or something. I did look at

the " bad fit " photos that I could find and we have *nothing* as

dramatic as that going on, thankfully. If I were not so particular

(thanks to all of you here), it might be something someone esle would

not even notice, since his skin is fine and such, and I can readjust

it from time to time. I just want it perfect! (aside from the

vacation thing and getting tight)

Take Care, mish

> > Hi all. I should start with the psotive. We have significant

> > correction a month into receiving the helmet, only 3 weeks or so

> full

> > time wear. I might not even band him if we started the process

> > today!

> >

> > I posted pics of the ear trouble, and the shifting. And we are

> still

> > ahving some trouble. The last visit to the orthotist, he was so

> > meticulous and really seemed to get it great. He was also very

> > surprised at th grwoth Colin had and after only 5 days, had to

> make

> > the interior larger all around, just a bit. So, I feel like he

> > is " on top of it. " I do think we have had rapid growth and some

> > changes, so the fit changes quickly. I get excellent response

and

> > cooperation if we need early appts.

> >

> > So my dilemma is the ortho is on vacation and I think we need

> > adjusting before our next appt. in a week and a half. I can be

> > referred to another Hnager facility for an emergency adjustment,

I

> > believe, as we discussed that. He said they would give me a list

> of

> > other facilities I could call, but he seemd to not really

> recommend

> > anyone strongly. So, I feel nervous to call then for that.

There

> is

> > obvioulsy no-one else at our site who does the helmets.

> >

> > So, I can wait it out and just reduce wear if it seems

> problematic.

> > I do think it is going to be too tight. Felt tight the last day

> or

> > two going on and Colin bawked just a bit. But, we do not have

any

> > skin troubles, so it cannot be that bad a fit, right?? Our appt

is

> > the 30th. Or, I can try for another ortho(one is even pretty

> colse

> > to me, if they can see me), but I feel nervous to have a new

> person

> > tamper with the helmet. On the other hand, maybe they will do it

> > better, right?

> >

> > Any opinions? I just keep second guessing the band especially

> with

> > all the raves about DOCbands. I hate feeling this way. I have

to

> > keep reminding myself that we see good correction. Thanks, mish