Update on Alyssa/travel to AZ for DOC

[Guest guest]

Alyssa has been in her DOC band for 3 months now. I have been on 9

round trip flights with her so far.

When she first got the DOC band she showed improvement after 12

days. Unfortunately, her growth really slowed down and she dropped

from the 100th percentile to the 95th percentile for head growth.

I am really glad that I got the DOC band. I would definitely do it

over again and am happy with the improvement we have seen. The

front of her forehead filled in and I can see major improvement with

the lumps/bumps and some improvement with the rounding in the back.

Her left eye looks much better now, it matches the size of her right

eye more.

Her right cheek is still bigger than the left and it still really

shows in the mirror and in photos. The back did not fill in as well

as I had hoped that it would but that is because of the slow

growth. The left side of her face is still " C " shaped but it has

improved.

The plan is for my next visit to either do the exit cast and then

remove the band in 2-3 weeks or to make another trip after the next

one and do the exit cast then. I really want to keep her in the

band as long as possible but they want to wait and see how her

growth is.

The situation is a little bit bittersweet. I am happy that there

has been improvement but sad because I missed the best opportunity

because I missed the growth spurt. Alyssa was 9 months old when the

band was put on and now she is almost a year old. There were times

when I didn't even think I needed to fly down for the appt. because

there was no noticeable growth.

I asked about a second band and was told that Alyssa could benefit

from one. The " C " shape would fill in more as would the back of her

head hopefully.

Alyssa's dad refuses to get a second band. You should have seen the

look on his face when I brought up the issue of a second band.

It has been a financial struggle to pay for the first band/travel

expense. I have been dreading every flight because it has been very

difficult travelling with an infant alone down and back in the same

day, but I would be willing to make another 10 flights down and go

bankrupt if that is what it took.

I don't know what to do about the facial asymmetry. That was the

most important thing to me that I hoped the band would fix. It has

improved, but the difference in cheek size really bothers me. How

does that get resolved?

Are there any alternative treatments - cranial sachral (haven't

checked into this and I don't know much about it) or ??

I know that I have done the best that I can so far but it feels like

I am at the half way point and seems sad not to go for another band

and try to fix the issues entirely if possible.

I am thinking extreme here, like moving to AZ temporarily. I have

no idea how I could pull that one off, lol. If I did that, I would

probably end up as a single parent!

It is so hard to know how things will change as the child ages, if

facial asymmetry will improve or stay the same. I started out

getting the band because I never wanted to have any

regrets. I don't. The band has been a positive experience and I am

so happy that I did it. But, now I am concerned that I will always

wonder " what if " I had gotten the second band and I am pretty sure

that I will.

I am not sure what to do from here.

I will try to post pictures later today.

I am sorry that I haven't participated more on this board. We had a

family crisis that was difficult to go through.

Thanks,

Diane

Alyssa

DOC band 7/20/04

WA state

[Guest guest]

dianne,

hi, i am sorry to hear about all the stress you are going through.

my daughter ashley also has some pretty significant facial

asymmetry. she gets fitted for her first band on monday. i also am

wondering if this band will correct her face. i was surprised (

silly me) to hear that alot of kiddos need second and third bands.

we are on a single income and had to borrow money from my mother in

law for this first band. which was difficult for both my husband

and i. my husband has also told me that he hopes this first band

corrects the problem because there wont be a second. im so

worried. how can he even say that. this is his daughter hes

talking about. it would be so much easier if insurance companies

would just buck up and at least help with some of the cost. ive

made comments about going back to work, but would have to put both

my kids in daycare and my salary wouldnt cover daycare around here

let alone gas. and then i get a guilt trip from my husband saying

that he and the kids wouldnt see me very often. why dont they

understand that we would do any thing to take care of this. im glad

things are starting to look better for little alyssa. and know that

you are doing your best for her and that you are an awesome mom. it

takes alot of courage for us and our little darlings to go through

this. regardless of what you decide to do know that you have done

your best, and that there are a ton of people here to support you.

my mom the other day told me that i should write oprah and explain

our situation. i laughed at first. but then thought, that i am a

lucky one because i was loaned the money for this first band, what

about all the others that dont have the money, whos insurance wont

pay, and have to travel all those miles. plus it would make people

more aware of what plagio is. i wish i would have known or someone

would have told me that that was what asley had. instead i had to

do alot of research my self and tell her ped. that this is what she

has and this is what she needs. think of all the other people in

the same boat. i had no idea even where to start looking. anyways,

sorry to get off the subject, good luck with your little sweetie

and let us know what you decide.

angela/ mother of ashley, el cajon ca--- In

Plagiocephaly , " alex00alys03 " <alex00alys03@y...>

wrote:

>

> Alyssa has been in her DOC band for 3 months now. I have been on

9

> round trip flights with her so far.

> When she first got the DOC band she showed improvement after 12

> days. Unfortunately, her growth really slowed down and she

dropped

> from the 100th percentile to the 95th percentile for head growth.

> I am really glad that I got the DOC band. I would definitely do

it

> over again and am happy with the improvement we have seen. The

> front of her forehead filled in and I can see major improvement

with

> the lumps/bumps and some improvement with the rounding in the

back.

> Her left eye looks much better now, it matches the size of her

right

> eye more.

> Her right cheek is still bigger than the left and it still really

> shows in the mirror and in photos. The back did not fill in as

well

> as I had hoped that it would but that is because of the slow

> growth. The left side of her face is still " C " shaped but it has

> improved.

> The plan is for my next visit to either do the exit cast and then

> remove the band in 2-3 weeks or to make another trip after the

next

> one and do the exit cast then. I really want to keep her in the

> band as long as possible but they want to wait and see how her

> growth is.

> The situation is a little bit bittersweet. I am happy that there

> has been improvement but sad because I missed the best opportunity

> because I missed the growth spurt. Alyssa was 9 months old when

the

> band was put on and now she is almost a year old. There were

times

> when I didn't even think I needed to fly down for the appt.

because

> there was no noticeable growth.

> I asked about a second band and was told that Alyssa could benefit

> from one. The " C " shape would fill in more as would the back of

her

> head hopefully.

> Alyssa's dad refuses to get a second band. You should have seen

the

> look on his face when I brought up the issue of a second band.

> It has been a financial struggle to pay for the first band/travel

> expense. I have been dreading every flight because it has been

very

> difficult travelling with an infant alone down and back in the

same

> day, but I would be willing to make another 10 flights down and go

> bankrupt if that is what it took.

> I don't know what to do about the facial asymmetry. That was the

> most important thing to me that I hoped the band would fix. It

has

> improved, but the difference in cheek size really bothers me. How

> does that get resolved?

> Are there any alternative treatments - cranial sachral (haven't

> checked into this and I don't know much about it) or ??

> I know that I have done the best that I can so far but it feels

like

> I am at the half way point and seems sad not to go for another

band

> and try to fix the issues entirely if possible.

> I am thinking extreme here, like moving to AZ temporarily. I have

> no idea how I could pull that one off, lol. If I did that, I

would

> probably end up as a single parent!

> It is so hard to know how things will change as the child ages, if

> facial asymmetry will improve or stay the same. I started out

> getting the band because I never wanted to have any

> regrets. I don't. The band has been a positive experience and I

am

> so happy that I did it. But, now I am concerned that I will

always

> wonder " what if " I had gotten the second band and I am pretty sure

> that I will.

> I am not sure what to do from here.

> I will try to post pictures later today.

> I am sorry that I haven't participated more on this board. We had

a

> family crisis that was difficult to go through.

> Thanks,

> Diane

> Alyssa

> DOC band 7/20/04

> WA state

[Guest guest]

I am glad your inlaws were able to help. We too were fortunate enough to

have my inlaws help out. I am so thankful for their genourosity!

Please let us know how the fitting goes.

Angie and Jenna(STAR grad)

Re: Update on Alyssa/travel to AZ for DOC

>

>

> dianne,

> hi, i am sorry to hear about all the stress you are going through.

> my daughter ashley also has some pretty significant facial

> asymmetry. she gets fitted for her first band on monday. i also am

> wondering if this band will correct her face. i was surprised (

> silly me) to hear that alot of kiddos need second and third bands.

> we are on a single income and had to borrow money from my mother in

> law for this first band. which was difficult for both my husband

> and i. my husband has also told me that he hopes this first band

> corrects the problem because there wont be a second. im so

> worried. how can he even say that. this is his daughter hes

> talking about. it would be so much easier if insurance companies

> would just buck up and at least help with some of the cost. ive

> made comments about going back to work, but would have to put both

> my kids in daycare and my salary wouldnt cover daycare around here

> let alone gas. and then i get a guilt trip from my husband saying

> that he and the kids wouldnt see me very often. why dont they

> understand that we would do any thing to take care of this. im glad

> things are starting to look better for little alyssa. and know that

> you are doing your best for her and that you are an awesome mom. it

> takes alot of courage for us and our little darlings to go through

> this. regardless of what you decide to do know that you have done

> your best, and that there are a ton of people here to support you.

> my mom the other day told me that i should write oprah and explain

> our situation. i laughed at first. but then thought, that i am a

> lucky one because i was loaned the money for this first band, what

> about all the others that dont have the money, whos insurance wont

> pay, and have to travel all those miles. plus it would make people

> more aware of what plagio is. i wish i would have known or someone

> would have told me that that was what asley had. instead i had to

> do alot of research my self and tell her ped. that this is what she

> has and this is what she needs. think of all the other people in

> the same boat. i had no idea even where to start looking. anyways,

> sorry to get off the subject, good luck with your little sweetie

> and let us know what you decide.

> angela/ mother of ashley, el cajon ca

>>

>> Alyssa has been in her DOC band for 3 months now. I have been on

> 9

>> round trip flights with her so far.

>> When she first got the DOC band she showed improvement after 12

>> days. Unfortunately, her growth really slowed down and she

> dropped

>> from the 100th percentile to the 95th percentile for head growth.

>> I am really glad that I got the DOC band. I would definitely do

> it

>> over again and am happy with the improvement we have seen. The

>> front of her forehead filled in and I can see major improvement

> with

>> the lumps/bumps and some improvement with the rounding in the

> back.

>> Her left eye looks much better now, it matches the size of her

> right

>> eye more.

>> Her right cheek is still bigger than the left and it still really

>> shows in the mirror and in photos. The back did not fill in as

> well

>> as I had hoped that it would but that is because of the slow

>> growth. The left side of her face is still " C " shaped but it has

>> improved.

>> The plan is for my next visit to either do the exit cast and then

>> remove the band in 2-3 weeks or to make another trip after the

> next

>> one and do the exit cast then. I really want to keep her in the

>> band as long as possible but they want to wait and see how her

>> growth is.

>> The situation is a little bit bittersweet. I am happy that there

>> has been improvement but sad because I missed the best opportunity

>> because I missed the growth spurt. Alyssa was 9 months old when

> the

>> band was put on and now she is almost a year old. There were

> times

>> when I didn't even think I needed to fly down for the appt.

> because

>> there was no noticeable growth.

>> I asked about a second band and was told that Alyssa could benefit

>> from one. The " C " shape would fill in more as would the back of

> her

>> head hopefully.

>> Alyssa's dad refuses to get a second band. You should have seen

> the

>> look on his face when I brought up the issue of a second band.

>> It has been a financial struggle to pay for the first band/travel

>> expense. I have been dreading every flight because it has been

> very

>> difficult travelling with an infant alone down and back in the

> same

>> day, but I would be willing to make another 10 flights down and go

>> bankrupt if that is what it took.

>> I don't know what to do about the facial asymmetry. That was the

>> most important thing to me that I hoped the band would fix. It

> has

>> improved, but the difference in cheek size really bothers me. How

>> does that get resolved?

>> Are there any alternative treatments - cranial sachral (haven't

>> checked into this and I don't know much about it) or ??

>> I know that I have done the best that I can so far but it feels

> like

>> I am at the half way point and seems sad not to go for another

> band

>> and try to fix the issues entirely if possible.

>> I am thinking extreme here, like moving to AZ temporarily. I have

>> no idea how I could pull that one off, lol. If I did that, I

> would

>> probably end up as a single parent!

>> It is so hard to know how things will change as the child ages, if

>> facial asymmetry will improve or stay the same. I started out

>> getting the band because I never wanted to have any

>> regrets. I don't. The band has been a positive experience and I

> am

>> so happy that I did it. But, now I am concerned that I will

> always

>> wonder " what if " I had gotten the second band and I am pretty sure

>> that I will.

>> I am not sure what to do from here.

>> I will try to post pictures later today.

>> I am sorry that I haven't participated more on this board. We had

> a

>> family crisis that was difficult to go through.

>> Thanks,

>> Diane

>> Alyssa

>> DOC band 7/20/04

>> WA state

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi Diane,

Nice to hear how you and Alyssa are doing. It's hard to believe that she's already been in her helmet for three months and you are thinking about finishing! Time flies. I am glad to hear that you saw correction - are you going to go ahead with the second band? Really tough decision once again but I am sure you will make a good one like going ahead with the helmet in the first place. Sorry to hear about your family crisis, hope everything is okay, good luck with your decision.

, mommy to Angelina 12 mos in Canada tort, local helmet 07/09/04

-----Original Message-----From: alex00alys03 [mailto:alex00alys03@...]Sent: Thursday, October 14, 2004 11:23 AMPlagiocephaly Subject: Update on Alyssa/travel to AZ for DOCAlyssa has been in her DOC band for 3 months now. I have been on 9 round trip flights with her so far.When she first got the DOC band she showed improvement after 12 days. Unfortunately, her growth really slowed down and she dropped from the 100th percentile to the 95th percentile for head growth. I am really glad that I got the DOC band. I would definitely do it over again and am happy with the improvement we have seen. The front of her forehead filled in and I can see major improvement with the lumps/bumps and some improvement with the rounding in the back. Her left eye looks much better now, it matches the size of her right eye more.Her right cheek is still bigger than the left and it still really shows in the mirror and in photos. The back did not fill in as well as I had hoped that it would but that is because of the slow growth. The left side of her face is still "C" shaped but it has improved.The plan is for my next visit to either do the exit cast and then remove the band in 2-3 weeks or to make another trip after the next one and do the exit cast then. I really want to keep her in the band as long as possible but they want to wait and see how her growth is.The situation is a little bit bittersweet. I am happy that there has been improvement but sad because I missed the best opportunity because I missed the growth spurt. Alyssa was 9 months old when the band was put on and now she is almost a year old. There were times when I didn't even think I needed to fly down for the appt. because there was no noticeable growth.I asked about a second band and was told that Alyssa could benefit from one. The "C" shape would fill in more as would the back of her head hopefully.Alyssa's dad refuses to get a second band. You should have seen the look on his face when I brought up the issue of a second band. It has been a financial struggle to pay for the first band/travel expense. I have been dreading every flight because it has been very difficult travelling with an infant alone down and back in the same day, but I would be willing to make another 10 flights down and go bankrupt if that is what it took. I don't know what to do about the facial asymmetry. That was the most important thing to me that I hoped the band would fix. It has improved, but the difference in cheek size really bothers me. How does that get resolved?Are there any alternative treatments - cranial sachral (haven't checked into this and I don't know much about it) or ?? I know that I have done the best that I can so far but it feels like I am at the half way point and seems sad not to go for another band and try to fix the issues entirely if possible. I am thinking extreme here, like moving to AZ temporarily. I have no idea how I could pull that one off, lol. If I did that, I would probably end up as a single parent! It is so hard to know how things will change as the child ages, if facial asymmetry will improve or stay the same. I started out getting the band because I never wanted to have any regrets. I don't. The band has been a positive experience and I am so happy that I did it. But, now I am concerned that I will always wonder "what if" I had gotten the second band and I am pretty sure that I will.I am not sure what to do from here. I will try to post pictures later today. I am sorry that I haven't participated more on this board. We had a family crisis that was difficult to go through.Thanks,DianeAlyssa DOC band 7/20/04WA stateFor more plagio info