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Re: Small for her age.

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Hi Nicola...

In regards to growth and bpes, our son ethan hasn't had that problem so I couldn't link the 2 together...He was a HEALTHY 9 pound 13 oz baby, and is now very tall for his age and skinny:) He is 8 years old and 136cm tall! He is a smart wee guy, loves to read, very articulate, loves to build things with his lego so very creative like his big brother who doesn't have bpes...hes a typical boy, doesn't like writing and struggles a bit with that still but that is quite typical of some boys, so hopefully that will improve:) I havn't added pics of him at the support group site but he is ethan wearing a pumpkin suit as a baby...He has had one operation to lift his top lids, it went well...:) Hope that helps...:)

Leanne Costello

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From: nicola_horsley <nicola_horsley@...>blepharophimosis Sent: Tue, 22 February, 2011 9:58:32 AMSubject: blepharophimosis Small for her age.

HiMy daughter, Grace, has just celebrated her 6th birthday. She is only 94cm tall and 13kg in weight. I'm a concerned about her lack of growth over the last 2/3 years. She is now head and shoulders below many of the children in her class. We are due to see our doctor next month and I would like to address this issue. Has anyone else had problems with weight gain and growth? I read that zinc has been used by some to help. Any ideas would be helpfulThanksNicola and Grace Bradford England

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Hi Nicola,

Our daughter is the opposite - 8 years, 148 cm ....

Isolated BPES is not associated with growth retardation however BPES sometimes goes along with other genetic disorders.

Anja (Germany)

blepharophimosis From: tltne@...Date: Tue, 22 Feb 2011 10:13:19 +1300Subject: Re: blepharophimosis Small for her age.

Hi Nicola...

In regards to growth and bpes, our son ethan hasn't had that problem so I couldn't link the 2 together...He was a HEALTHY 9 pound 13 oz baby, and is now very tall for his age and skinny:) He is 8 years old and 136cm tall! He is a smart wee guy, loves to read, very articulate, loves to build things with his lego so very creative like his big brother who doesn't have bpes...hes a typical boy, doesn't like writing and struggles a bit with that still but that is quite typical of some boys, so hopefully that will improve:) I havn't added pics of him at the support group site but he is ethan wearing a pumpkin suit as a baby...He has had one operation to lift his top lids, it went well...:) Hope that helps...:)

Leanne Costello

I C O N

Design & Build

M 027-578-7168

From: nicola_horsley <nicola_horsley@...>blepharophimosis Sent: Tue, 22 February, 2011 9:58:32 AMSubject: blepharophimosis Small for her age.

HiMy daughter, Grace, has just celebrated her 6th birthday. She is only 94cm tall and 13kg in weight. I'm a concerned about her lack of growth over the last 2/3 years. She is now head and shoulders below many of the children in her class. We are due to see our doctor next month and I would like to address this issue. Has anyone else had problems with weight gain and growth? I read that zinc has been used by some to help. Any ideas would be helpfulThanksNicola and Grace Bradford England

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Hi Nicola,

This article might be interesting for you

http://www.endocrine-abstracts.org/ea/0003/ea0003p13.htm

From: anjashahin@...To: blepharophimosis Subject: RE: blepharophimosis Small for her age.Date: Thu, 24 Feb 2011 12:10:08 +0100

Hi Nicola, Our daughter is the opposite - 8 years, 148 cm .... Isolated BPES is not associated with growth retardation however BPES sometimes goes along with other genetic disorders. Anja (Germany)

blepharophimosis From: tltne@...Date: Tue, 22 Feb 2011 10:13:19 +1300Subject: Re: blepharophimosis Small for her age.

Hi Nicola...

In regards to growth and bpes, our son ethan hasn't had that problem so I couldn't link the 2 together...He was a HEALTHY 9 pound 13 oz baby, and is now very tall for his age and skinny:) He is 8 years old and 136cm tall! He is a smart wee guy, loves to read, very articulate, loves to build things with his lego so very creative like his big brother who doesn't have bpes...hes a typical boy, doesn't like writing and struggles a bit with that still but that is quite typical of some boys, so hopefully that will improve:) I havn't added pics of him at the support group site but he is ethan wearing a pumpkin suit as a baby...He has had one operation to lift his top lids, it went well...:) Hope that helps...:)

Leanne Costello

I C O N

Design & Build

M 027-578-7168

From: nicola_horsley <nicola_horsley@...>blepharophimosis Sent: Tue, 22 February, 2011 9:58:32 AMSubject: blepharophimosis Small for her age. HiMy daughter, Grace, has just celebrated her 6th birthday. She is only 94cm tall and 13kg in weight. I'm a concerned about her lack of growth over the last 2/3 years. She is now head and shoulders below many of the children in her class. We are due to see our doctor next month and I would like to address this issue. Has anyone else had problems with weight gain and growth? I read that zinc has been used by some to help. Any ideas would be helpfulThanksNicola and Grace Bradford England

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Hi Nicola, My son Marc was 9lb born, but always small for his age as a toddler to his teens, then in his early twenties he just shot up to 5ft 10. June (Cheshire UK) blepharophimosis From: anjashahin@...Date: Thu, 24 Feb 2011 12:10:08 +0100Subject: RE: blepharophimosis Small for her age.

Hi Nicola,

Our daughter is the opposite - 8 years, 148 cm ....

Isolated BPES is not associated with growth retardation however BPES sometimes goes along with other genetic disorders.

Anja (Germany)

blepharophimosis From: tltne@...Date: Tue, 22 Feb 2011 10:13:19 +1300Subject: Re: blepharophimosis Small for her age.

Hi Nicola...

In regards to growth and bpes, our son ethan hasn't had that problem so I couldn't link the 2 together...He was a HEALTHY 9 pound 13 oz baby, and is now very tall for his age and skinny:) He is 8 years old and 136cm tall! He is a smart wee guy, loves to read, very articulate, loves to build things with his lego so very creative like his big brother who doesn't have bpes...hes a typical boy, doesn't like writing and struggles a bit with that still but that is quite typical of some boys, so hopefully that will improve:) I havn't added pics of him at the support group site but he is ethan wearing a pumpkin suit as a baby...He has had one operation to lift his top lids, it went well...:) Hope that helps...:)

Leanne Costello

I C O N

Design & Build

M 027-578-7168

From: nicola_horsley <nicola_horsley@...>blepharophimosis Sent: Tue, 22 February, 2011 9:58:32 AMSubject: blepharophimosis Small for her age.

HiMy daughter, Grace, has just celebrated her 6th birthday. She is only 94cm tall and 13kg in weight. I'm a concerned about her lack of growth over the last 2/3 years. She is now head and shoulders below many of the children in her class. We are due to see our doctor next month and I would like to address this issue. Has anyone else had problems with weight gain and growth? I read that zinc has been used by some to help. Any ideas would be helpfulThanksNicola and Grace Bradford England

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Hi Nicola

Hope Grace is fully recovered after her surgery, how is her speech therapy

going?

Kirsten has always been small, on the 9th centile for weight and height on

growth charts. At her endocrinology appointment at Great Ormand Street a few

months ago this issue was brought up. She has always followed the 9th centile

since birth and looking at her growth charts has grown by 5 - 6cm a year. At 6

yrs she was about 110 cm tall. I've always thought that she would simply be

short.

If Grace's growth has crossed a line on the growth chart, in other words, her

growth has slowed down, then take it further. Trust your instinct Nicola, a

mum's gut instinct is usually right. If you want it checked out then insist on

it. The LGI will answer your questions I'm sure. Shew, sometimes it seems to be

one thing after the other, doesn't it? :)

Take care

x

(Colchester, UK)

--- In blepharophimosis , " nicola_horsley " <nicola_horsley@...>

wrote:

>

> Hi

> My daughter, Grace, has just celebrated her 6th birthday. She is only 94cm

tall and 13kg in weight. I'm a concerned about her lack of growth over the last

2/3 years. She is now head and shoulders below many of the children in her

class. We are due to see our doctor next month and I would like to address this

issue. Has anyone else had problems with weight gain and growth? I read that

zinc has been used by some to help. Any ideas would be helpful

> Thanks

> Nicola and Grace Bradford England

>

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