Re: Identical twins, one w/ DOC, they will never look the same.

[Guest guest]

I've had to make my peace with non-identical homozygosity as well, so

I can sympathize with what you're going through right now. I'm

looking at a discrepancy in diagonal differences (DDD?) of about 1

cm (Clara 8 mm left-sided, Milly Ellen 2 mm right-sided).

But now, at age 2 1/2, I really don't think the difference will be

perceived like you say. It sounds like you're dealing more with

brachycephaly. Even so, put some hair on it, and you may be

surprised how minimal the cosmetic impact is. You're not even done

the treatment; it's only in the last month or two I've had to do a

double-take sometimes to figure out who I'm talking to. They look

more alike all the time!

I offer this shotgun test to determine whether the perception of

" identity " has truly been degraded: make a Mii (avatar for the

Nintendo Wii game console) for each twin, and see if you don't end up

making them identical. Because the game is designed to capture

identity with minimal detail, and does not allow asymmmetry, it

provides a means to separate the perceptions of asymmetry and

identity. I initially tried making Clara's eyes more narrow-set,

because that is the impression her right occiput gives, swinging out

a bit wider. However, identical avatars (except for hair style)

proved to be closer to reality.

Now's a good time to buy a Wii, incidentally: It takes Netflix

streaming over broadband, and the next-generation controller just

came out yesterday. However, there is an online Mii creator

available, which it is every bit as good for our purposes.

http://www.myavatareditor.com/

Have fun!

Thad Launderville

town, VT

Clara age 2, STARband '10

On Nov 8, 2010, at 8:21 AM, crazeyjaneyr wrote:

> It really saddens me that one of my identical boys will always look

> different from his brother. I know that they are individuals, but I

> am so afraid that people will differentiate them because of his

> head shape. The band is working, but there is no way his head will

> ever be perfectly round. It is very wide over his ears, there are

> bony structures that protrude that a helmet can't fix. It makes me

> so sad. I know that I need to accept this - he is a gorgeous little

> dude either way, but I worry about how he will feel about it.

>

> Has anyone else gone through something like this?

>

>

>

> ------------------------------------

>

> For more plagio info

[Guest guest]

Oh yes. I have similar experience. Mine are identical boys too. One has left plagio, the other right. So I guess my case is worse than yours. I myself sometimes like to play the game of telling them apart with closed eyes before their bed time just by touching their heads when they are not wearing the helmets. Then I loudlly call their names and push my head into their under arms to surprise them, they would laugh badly. It's fun! They love it.

Well, it's not fun at all since the day I found their heads are not right. It was when they were 3,4 months old. I was advised to reposition them, so I've been doing that since then without knowing there's a better solution called a helmet. I just didn't have any info about the helmet till my boys turned 13 months. So many sleepless night repositioning them. I was good though, whenever they made any small sound, I right away woke up, and check their head positions... I do think the repositioning worked because their heads didn't get worse since then. Then I heard about the helmet when my boys turned 13 months. I was so happy to find out that there's this solution. However it turned to put me down shortly after because I couldn't get the helmets. I had big struggles getting the helmets because the boys were over 13 months and the hospital here in Vancouver doesn't takes babies over 12 months, it's the guideline. This hospital is the only place in Vancouver that deals with plagio. Thankful to this board, Mike Hall in Toronto helped me to hook up with , one of the two helmet doctors here. I thought it's going to be all good then. But it's not. The in-laws who look after the boys during the day would not put the helmets on because they hate watching their lovely grandsons suffering. It's the hardest part in this whole journey. I had the helmets but just cannot get them onto my boys. I was so depressed.. I was thinking of divorse because my husband was on his parents side for this matter. Long story short, I finally made it and now my boys are wearing the helmets 23 hrs. I have gone through so much so now I am all happy. I'm writing my long story here again (many people on this board have known my story) just to make you feel better and be thankful for what you've had without having to go through so much as I did.

I still reposition them 2, 3 times every night even thought they now sleep with the helmets. I just feel that if they still sleep on the flat sides, there will still be some pressure there due to the twisted helmets. The dr said there's no need to repostion any more, but I still do it.

Finally, I think their heads will still round themselves out after the helmets are taken off. I totally believe in that. We have done all we can, so we should not be sad any more. Try to be happy!

Plagiocephaly From: Treysar@...Date: Mon, 8 Nov 2010 13:21:13 +0000Subject: Identical twins, one w/ DOC, they will never look the same.

It really saddens me that one of my identical boys will always look different from his brother. I know that they are individuals, but I am so afraid that people will differentiate them because of his head shape. The band is working, but there is no way his head will ever be perfectly round. It is very wide over his ears, there are bony structures that protrude that a helmet can't fix. It makes me so sad. I know that I need to accept this - he is a gorgeous little dude either way, but I worry about how he will feel about it.Has anyone else gone through something like this?

[Guest guest]

My heart goes out to all of the parents that have had to deal with plagio. At the same time my hear t is beaming for us all as I am so proud of all of you for doing the right thing to help your children and for being their advocates. It is a long hard road to go down but a rewarding one when you see their happy little faces smiling up at you knowing that you have done your part and that they have benefited from it.

Keep your chin up- you are great parents! Your children will love you for all that you have done and thank you- there is nothing sweeter than that. Kelsie

From: Leina Tian <leinatian@...>plagiocephaly Sent: Mon, November 8, 2010 12:11:52 PMSubject: RE: Identical twins, one w/ DOC, they will never look the same.

Oh yes. I have similar experience. Mine are identical boys too. One has left plagio, the other right. So I guess my case is worse than yours. I myself sometimes like to play the game of telling them apart with closed eyes before their bed time just by touching their heads when they are not wearing the helmets. Then I loudlly call their names and push my head into their under arms to surprise them, they would laugh badly. It's fun! They love it. Well, it's not fun at all since the day I found their heads are not right. It was when they were 3,4 months old. I was advised to reposition them, so I've been doing that since then without

knowing there's a better solution called a helmet. I just didn't have any info about the helmet till my boys turned 13 months. So many sleepless night repositioning them. I was good though, whenever they made any small sound, I right away woke up, and check their head positions... I do think the repositioning worked because their heads didn't get worse since then. Then I heard about the helmet when my boys turned 13 months. I was so happy to find out that there's this solution. However it turned to put me down shortly after because I couldn't get the helmets. I had big struggles getting the helmets because the boys were over 13 months and the hospital here in Vancouver doesn't takes babies over 12 months, it's the guideline. This hospital is the only place in Vancouver that deals with plagio. Thankful to this board, Mike Hall in Toronto helped me to hook up with , one of the

two helmet doctors here. I thought it's going to be all good then. But it's not. The in-laws who look after the boys during the day would not put the helmets on because they hate watching their lovely grandsons suffering. It's the hardest part in this whole journey. I had the helmets but just cannot get them onto my boys. I was so depressed.. I was thinking of divorse because my husband was on his parents side for this matter. Long story short, I finally made it and now my boys are wearing the helmets 23 hrs. I have gone through so much so now I am all happy. I'm writing my long story here again (many people on this board have known my story) just to make you feel better and be thankful for what you've had without having to go through so much as I did. I still reposition them 2, 3 times every night even thought they now sleep with the helmets. I just feel that if they still sleep on the

flat sides, there will still be some pressure there due to the twisted helmets. The dr said there's no need to repostion any more, but I still do it. Finally, I think their heads will still round themselves out after the helmets are taken off. I totally believe in that. We have done all we can, so we should not be sad any more. Try to be happy!

Plagiocephaly From: Treysar@...Date: Mon, 8 Nov 2010 13:21:13 +0000Subject: Identical twins, one w/ DOC, they will never look the same.

It really saddens me that one of my identical boys will always look different from his brother. I know that they are individuals, but I am so afraid that people will differentiate them because of his head shape. The band is working, but there is no way his head will ever be perfectly round. It is very wide over his ears, there are bony structures that protrude that a helmet can't fix. It makes me so sad. I know that I need to accept this - he is a gorgeous little dude either way, but I worry about how he will feel about it.Has anyone else gone through something like this?