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Re: getting discouraged...please help!

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-Krissy i am so sorry Cody hasn't seen much improvement. I would

think he would still have some improvement without a big spurt.

Jenna had improvements at every visit without a big growth spurt. It

was slow at times but her diagnaol measurements stilled improved.

Jenna was banded at 9 months. Her head grew slowly while banded.

Now of course she is growing like a weed. Unfortunately we can't

predict when our kids will hit that big spurt.

I know it has to be difficult. Please keep your chin up. You are a

wonderful mom.

I am not experienced with the DOc band or needing a second band. I

am sure others will chime in. Please keep us updated.

Angie and Jenna

I -- In Plagiocephaly , " krissysiminski "

<ksiminsk@h...> wrote:

> I have kind of lost touch with this group...I am lucky enough to be

> off for the summer so I haven't been on top of my e-mail

lately...but

> I REALLY need some advice and encouragement. Anyway, my son Cody

has

> been in his helmet for 9 weeks now. He was 8 months old when he

> began, he is now 10.5 months old. We have seen very little

progress

> with his rounding. I guess I was expecting so much more after

> reading all of these success stories through this group. I

mentioned

> that I didn't think the helmet was working well to my CT this past

> week, and they agreed he hasn't progressed much lately. They said

he

> hasn't had a " growth spurt " in a while...so he must be do for one

> soon. I travel three hours each way every two weeks to do this and

I

> am beginning to think it isn't worth it. I will be so bumbed if it

> doesn't work...I fought my pediatrician for the script and she

> insisted it won't work any better than natural progression. I

guess

> my question is...is everyone out there successful with the DOC

Band?

> Could it not work??? Has anyone else gone through these times of no

> rounding? How often to 10 months old have growth spurts? My CT is

> already talking to me about a second helmet...but if the first one

> doesn't work when he isn't one years old yet...how do I know the

> second one will be worth it. I am just so depressed that Cody's

> helmet doesn't seem to be working much. I have been very good with

> leaving it on the full amount...we took it off once to go to the

> beach for 2 hours and that is it in 9 weeks! When will I see

> improvement???? Any advice and encouragement is appreciated!

>

> Krissy (Cody 10.5 mo banded 5/26/03)

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Hi Krissy. I have twins (now 12, almost 13 months) and am in the same

situation with one of them (). He has had some improvement -

but not near what we expected. His brother, Nolan, had much better

correction in the 4 months he wore his band. We are now waiting on

our ins to cast for a 2nd band for . In our case, I know the

severity was/is an issue. His head has gone from a very severe brachy

shape, to just a severe shape. But I have questioned the fit of his

band, since his has always gone over one of his ears a bit and just

never really fit like his brothers' band.

How does your sons' band fit? Does it move around on his head at all

or does it stay in one place?

Have you compared before and now head shots? It was hard for me to

see any improvement until we did this.

How severe was your son to begin with? What headshape?

Is he wearing a DOC or Starband?

mom to Nolan & - DOC banded 3/26/03 at almost 9 months

(Nolan graduated 6/23/03)

> I have kind of lost touch with this group...I am lucky enough to be

> off for the summer so I haven't been on top of my e-mail

lately...but

> I REALLY need some advice and encouragement. Anyway, my son Cody

has

> been in his helmet for 9 weeks now. He was 8 months old when he

> began, he is now 10.5 months old. We have seen very little

progress

> with his rounding. I guess I was expecting so much more after

> reading all of these success stories through this group. I

mentioned

> that I didn't think the helmet was working well to my CT this past

> week, and they agreed he hasn't progressed much lately. They said

he

> hasn't had a " growth spurt " in a while...so he must be do for one

> soon. I travel three hours each way every two weeks to do this and

I

> am beginning to think it isn't worth it. I will be so bumbed if it

> doesn't work...I fought my pediatrician for the script and she

> insisted it won't work any better than natural progression. I

guess

> my question is...is everyone out there successful with the DOC

Band?

> Could it not work??? Has anyone else gone through these times of no

> rounding? How often to 10 months old have growth spurts? My CT is

> already talking to me about a second helmet...but if the first one

> doesn't work when he isn't one years old yet...how do I know the

> second one will be worth it. I am just so depressed that Cody's

> helmet doesn't seem to be working much. I have been very good with

> leaving it on the full amount...we took it off once to go to the

> beach for 2 hours and that is it in 9 weeks! When will I see

> improvement???? Any advice and encouragement is appreciated!

>

> Krissy (Cody 10.5 mo banded 5/26/03)

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It sounds as if that would be a tough spot to be in. My son got his

helmet at 5.5 months and we saw the most progression from then until

about 7 months when his growth slowed signficantly. It could be

that it will just take longer for his head to show progress. Don't

concern yourself about the 2nd helmet until that time comes.

Definitely keep up with the band and hang in there. You are doing

everything you can to help him...it's pretty much up to him to grow

=) Give it some time.

Hugs,

> I have kind of lost touch with this group...I am lucky enough to

be

> off for the summer so I haven't been on top of my e-mail

lately...but

> I REALLY need some advice and encouragement. Anyway, my son Cody

has

> been in his helmet for 9 weeks now. He was 8 months old when he

> began, he is now 10.5 months old. We have seen very little

progress

> with his rounding. I guess I was expecting so much more after

> reading all of these success stories through this group. I

mentioned

> that I didn't think the helmet was working well to my CT this past

> week, and they agreed he hasn't progressed much lately. They said

he

> hasn't had a " growth spurt " in a while...so he must be do for one

> soon. I travel three hours each way every two weeks to do this

and I

> am beginning to think it isn't worth it. I will be so bumbed if

it

> doesn't work...I fought my pediatrician for the script and she

> insisted it won't work any better than natural progression. I

guess

> my question is...is everyone out there successful with the DOC

Band?

> Could it not work??? Has anyone else gone through these times of

no

> rounding? How often to 10 months old have growth spurts? My CT

is

> already talking to me about a second helmet...but if the first one

> doesn't work when he isn't one years old yet...how do I know the

> second one will be worth it. I am just so depressed that Cody's

> helmet doesn't seem to be working much. I have been very good

with

> leaving it on the full amount...we took it off once to go to the

> beach for 2 hours and that is it in 9 weeks! When will I see

> improvement???? Any advice and encouragement is appreciated!

>

> Krissy (Cody 10.5 mo banded 5/26/03)

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Hi,

Don't give up just yet!!! Cody could be due for a major growth spurt

at any time. All babies progress at different rates. Some of us have

to be patient. This whole process took us from July 2002 until May

2003. My daughter was just growing slowly. It was so worth the time,

she received 90+ % correction. She wasn't banded until she was 11

mths and one week old. Cody, is just taking his time, stick with it,

you'll be happy you did!!!

> I have kind of lost touch with this group...I am lucky enough to be

> off for the summer so I haven't been on top of my e-mail

lately...but

> I REALLY need some advice and encouragement. Anyway, my son Cody

has

> been in his helmet for 9 weeks now. He was 8 months old when he

> began, he is now 10.5 months old. We have seen very little

progress

> with his rounding. I guess I was expecting so much more after

> reading all of these success stories through this group. I

mentioned

> that I didn't think the helmet was working well to my CT this past

> week, and they agreed he hasn't progressed much lately. They said

he

> hasn't had a " growth spurt " in a while...so he must be do for one

> soon. I travel three hours each way every two weeks to do this and

I

> am beginning to think it isn't worth it. I will be so bumbed if it

> doesn't work...I fought my pediatrician for the script and she

> insisted it won't work any better than natural progression. I

guess

> my question is...is everyone out there successful with the DOC

Band?

> Could it not work??? Has anyone else gone through these times of no

> rounding? How often to 10 months old have growth spurts? My CT is

> already talking to me about a second helmet...but if the first one

> doesn't work when he isn't one years old yet...how do I know the

> second one will be worth it. I am just so depressed that Cody's

> helmet doesn't seem to be working much. I have been very good with

> leaving it on the full amount...we took it off once to go to the

> beach for 2 hours and that is it in 9 weeks! When will I see

> improvement???? Any advice and encouragement is appreciated!

>

> Krissy (Cody 10.5 mo banded 5/26/03)

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I have to add my experience..

was banded at 7 mos with moderate+ plagio (20mm CVA). He

outgrew the 1st band in 9 wks with 50% improvement. Three weeks

later we got the 2nd band (9.5 mos) and it's been slow going ever

since. is 12.5 mos now. At our appt 3 weeks ago there was no

visible change, so I prayed for a spurt. And it came! At last weeks

appt, there was significant change.

We're frustrated because 's been banded for almost 6 months now,

and the changes are slow in coming. We keep thinking, only a few

more weeks, at every visit. But we hang in there because we know

it's best for . I'm not known for my patience so this has been

rough for me.

As for the second helmet, you should really get measurements and

photos and make an assessment with your orthotist. Your son still

has lots of growing time left.

Taking the idea from others here... I now rub 's head and

chant " grow, grow, grow " . I think it helps me more than him :)

Suzanne

mom to 12.5 mo, DOCbanded 2/8 and 5/2, " almost done "

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