Re: Re: Bleph & ptosis associated with FAS & FOXL2

May 30, 2006

Cheryl,

Perfect timing for me. Thank you for sharing your

experience. We are going to Children's Hospital

tomorrow for our first appointments to try to figure

out why our little guy is not growing at all. (No

bone growth in over a year now - not even his feet

have grown. And he is not gaining weight.) I will

ask the endocrinologist to check zinc when they run

more blood work. Anything we can be prepared to ask

about is a help - even if that's not it - it helps us

rule something out.

April

--- chucky23456 <chucky23456@...> wrote:

> Hi, I have just found your site while doing some

> research. My son

> does have a chromosome 3 deletion and has some of

> the symptoms of

> BPES although very few. He actually does have a

> deletion of

> chromosome 3q23 (where FOXL2 is) yet only has two

> symptoms of BPES

> which is unusual for this deletion. The two

> symptoms he has are

> strabismus and had a lacrimal eye duct problem as a

> baby yet it

> isn't a problem anymore. His strabismus was also

> corrected twice

> and it is now normal.

>

> I just wanted to let several of you know something

> that may or may

> not be of interest to know. My son Cameron also was

> at first

> labeled " failure to thrive " yet upon further

> examination, he had a

> severe zinc deficiency which was causing his growth

> and development

> problems. He is now 11 and I had to give him zinc

> for several years

> when he was much younger but he is now of normal

> height and weight

> and thriving like crazy. After the zinc was given

> for a few weeks,

> I noticed some huge changes in his eating patterns

> and growth. I

> know this may not be related but certainly something

> that can be

> checked in some cases just in case. There are two

> different zinc

> tests that can be given and the one that he was

> deficient in was the

> serum zinc test and not the other. I would not

> suggest just giving

> zinc if you suspect something though because if you

> give zinc

> unnecessarily, it can affect your iron levels as

> well.

>

> Again, I know it may not help everyone but if it can

> help one

> person, I'm happy to have shared it.

>

> Cheryl

>

> > >

> > > Hi Everyone,

> > >

> > > Our son, Micah, has suddenly stopped growing.

> Not

> > > just slow growth or short stature - stopped

> growing

> > > all together. No bone growth AT ALL in the last

> year.

> > > And he is not gaining weight, in fact he lost

> two

> > > pounds. All he does is eat all day long - so it

> is

> > > not a nutritional issue.

> > >

> > > We have been referred to Children's Hospital and

> are

> > > trying to find the cause for the lack of growth,

> also

> > > called " Failure to Thrive " in the medical

> community.

> > > (Such a misleading term as this child is happy

> and

> > > silly, and such a " thriving " and normal four

> year old

> > > boy. He just isn't growing. But I digress.)

> > >

> > > In my research, I came across a couple of

> articles

> > > that are listing ptosis and blepharophimosis as

> two of

> > > the MANY symptoms associated with fetal alcohol

> > > syndrome. (FAS) I had never heard this before

> and

> > > wanted to share the information.

> > >

> > > http://www.aoj.org/abstracts/41/41_132.html

> > >

> > > http://www.emedicine.com/ped/topic767.htm

> > >

> > > If anyone else has information about this could

> you

> > > please post and pass it on? And if anyone is

> headed

> > > to a geneticist soon can you ask about this? I

> tried

> > > to schedule us and the soonest they can get us

> in is

> > > August.

> > >

> > > Because Micah is adopted I have no idea what

> prenatal

> > > exposure he had. Birthmom did admit to drinking

> - but

> > > of course we have no way of knowing how much.

> Also,

> > > his genetic testing in Korea came back normal -

> which

> > > seems weird for BPES. So we are trying to piece

> this

> > > all together.

> > >

> > > Thanks!

> > > April Eisele, Colorado, USA

> > > Wife to Jon

> > > Mommy to Mira, Micah & Misha

> > >

> __________________________________________________

> > >

May 31, 2006

Hi there,

I have a friend with a daughter who is 7, she does not have bleph, so this is totally not related...She is gluten intollerant. She can't have anything with flour, gluten etc....and she hasn't grown much at all in the past year or two, she is apparently still wearing the same show size, since she was 5! She was told this was because of having this, not sure on the spelling but she said its called *Celica* thats how she has texted it to me:)

....Perhaps you could ask the DR about that??? Just an idea:)

Leanne

-- Re: blepharophimosis Re: Bleph & ptosis associated with FAS & FOXL2

Cheryl,

Perfect timing for me. Thank you for sharing your

experience. We are going to Children's Hospital

tomorrow for our first appointments to try to figure

out why our little guy is not growing at all. (No

bone growth in over a year now - not even his feet

have grown. And he is not gaining weight.) I will

ask the endocrinologist to check zinc when they run

more blood work. Anything we can be prepared to ask

about is a help - even if that's not it - it helps us

rule something out.

April

--- chucky23456 <chucky23456@...> wrote:

> Hi, I have just found your site while doing some

> research. My son

> does have a chromosome 3 deletion and has some of

> the symptoms of

> BPES although very few. He actually does have a

> deletion of

> chromosome 3q23 (where FOXL2 is) yet only has two

> symptoms of BPES

> which is unusual for this deletion. The two

> symptoms he has are

> strabismus and had a lacrimal eye duct problem as a

> baby yet it

> isn't a problem anymore. His strabismus was also

> corrected twice

> and it is now normal.

>

> I just wanted to let several of you know something

> that may or may

> not be of interest to know. My son Cameron also was

> at first

> labeled "failure to thrive" yet upon further

> examination, he had a

> severe zinc deficiency which was causing his growth

> and development

> problems. He is now 11 and I had to give him zinc

> for several years

> when he was much younger but he is now of normal

> height and weight

> and thriving like crazy. After the zinc was given

> for a few weeks,

> I noticed some huge changes in his eating patterns

> and growth. I

> know this may not be related but certainly something

> that can be

> checked in some cases just in case. There are two

> different zinc

> tests that can be given and the one that he was

> deficient in was the

> serum zinc test and not the other. I would not

> suggest just giving

> zinc if you suspect something though because if you

> give zinc

> unnecessarily, it can affect your iron levels as

> well.

>

> Again, I know it may not help everyone but if it can

> help one

> person, I'm happy to have shared it.

>

> Cheryl

>

> > >

> > > Hi Everyone,

> > >

> > > Our son, Micah, has suddenly stopped growing.

> Not

> > > just slow growth or short stature - stopped

> growing

> > > all together. No bone growth AT ALL in the last

> year.

> > > And he is not gaining weight, in fact he lost

> two

> > > pounds. All he does is eat all day long - so it

> is

> > > not a nutritional issue.

> > >

> > > We have been referred to Children's Hospital and

> are

> > > trying to find the cause for the lack of growth,

> also

> > > called "Failure to Thrive" in the medical

> community.

> > > (Such a misleading term as this child is happy

> and

> > > silly, and such a "thriving" and normal four

> year old

> > > boy. He just isn't growing. But I digress.)

> > >

> > > In my research, I came across a couple of

> articles

> > > that are listing ptosis and blepharophimosis as

> two of

> > > the MANY symptoms associated with fetal alcohol

> > > syndrome. (FAS) I had never heard this before

> and

> > > wanted to share the information.

> > >

> > > http://www.aoj.org/abstracts/41/41_132.html

> > >

> > > http://www.emedicine.com/ped/topic767.htm

> > >

> > > If anyone else has information about this could

> you

> > > please post and pass it on? And if anyone is

> headed

> > > to a geneticist soon can you ask about this? I

> tried

> > > to schedule us and the soonest they can get us

> in is

> > > August.

> > >

> > > Because Micah is adopted I have no idea what

> prenatal

> > > exposure he had. Birthmom did admit to drinking

> - but

> > > of course we have no way of knowing how much.

> Also,

> > > his genetic testing in Korea came back normal -

> which

> > > seems weird for BPES. So we are trying to piece

> this

> > > all together.

> > >

> > > Thanks!

> > > April Eisele, Colorado, USA

> > > Wife to Jon

> > > Mommy to Mira, Micah & Misha

> > >

> __________________________________________________

> > >

May 31, 2006

Hi,

The disease is called celiac. It is produced by gluten intolerance. The

vellosities in small bowel mucosae become atrophic and children do not grow

well. Nevertheless there are more causes of retarded growth tha tonly a

pediatrician can diagnose

>From: " costellos " <tltne@...>

>Reply-blepharophimosis

><blepharophimosis >

>Subject: Re: blepharophimosis Re: Bleph & ptosis associated with FAS &

>FOXL2

>Date: Wed, 31 May 2006 15:03:27 +1200 (New Zealand Standard Time)

>

>Hi there,

>

>I have a friend with a daughter who is 7, she does not have bleph, so this

>is totally not related...She is gluten intollerant. She can't have anything

>with flour, gluten etc....and she hasn't grown much at all in the past year

>or two, she is apparently still wearing the same show size, since she was

>5!

>She was told this was because of having this, not sure on the spelling but

>she said its called *Celica* thats how she has texted it to me:)

>

>...Perhaps you could ask the DR about that??? Just an idea:)

>

>Leanne

>

>-- Re: blepharophimosis Re: Bleph & ptosis associated with FAS &

>FOXL2

>

>Cheryl,

>Perfect timing for me. Thank you for sharing your

>experience. We are going to Children's Hospital

>tomorrow for our first appointments to try to figure

>out why our little guy is not growing at all. (No

>bone growth in over a year now - not even his feet

>have grown. And he is not gaining weight.) I will

>ask the endocrinologist to check zinc when they run

>more blood work. Anything we can be prepared to ask

>about is a help - even if that's not it - it helps us

>rule something out.

>April

>

>--- chucky23456 <chucky23456@...> wrote:

>

> > Hi, I have just found your site while doing some

> > research. My son

> > does have a chromosome 3 deletion and has some of

> > the symptoms of

> > BPES although very few. He actually does have a

> > deletion of

> > chromosome 3q23 (where FOXL2 is) yet only has two

> > symptoms of BPES

> > which is unusual for this deletion. The two

> > symptoms he has are

> > strabismus and had a lacrimal eye duct problem as a

> > baby yet it

> > isn't a problem anymore. His strabismus was also

> > corrected twice

> > and it is now normal.

> >

> > I just wanted to let several of you know something

> > that may or may

> > not be of interest to know. My son Cameron also was

> > at first

> > labeled " failure to thrive " yet upon further

> > examination, he had a

> > severe zinc deficiency which was causing his growth

> > and development

> > problems. He is now 11 and I had to give him zinc

> > for several years

> > when he was much younger but he is now of normal

> > height and weight

> > and thriving like crazy. After the zinc was given

> > for a few weeks,

> > I noticed some huge changes in his eating patterns

> > and growth. I

> > know this may not be related but certainly something

> > that can be

> > checked in some cases just in case. There are two

> > different zinc

> > tests that can be given and the one that he was

> > deficient in was the

> > serum zinc test and not the other. I would not

> > suggest just giving

> > zinc if you suspect something though because if you

> > give zinc

> > unnecessarily, it can affect your iron levels as

> > well.

> >

> > Again, I know it may not help everyone but if it can

> > help one

> > person, I'm happy to have shared it.

> >

> > Cheryl

> >

> > > >

> > > > Hi Everyone,

> > > >

> > > > Our son, Micah, has suddenly stopped growing.

> > Not

> > > > just slow growth or short stature - stopped

> > growing

> > > > all together. No bone growth AT ALL in the last

> > year.

> > > > And he is not gaining weight, in fact he lost

> > two

> > > > pounds. All he does is eat all day long - so it

> > is

> > > > not a nutritional issue.

> > > >

> > > > We have been referred to Children's Hospital and

> > are

> > > > trying to find the cause for the lack of growth,

> > also

> > > > called " Failure to Thrive " in the medical

> > community.

> > > > (Such a misleading term as this child is happy

> > and

> > > > silly, and such a " thriving " and normal four

> > year old

> > > > boy. He just isn't growing. But I digress.)

> > > >

> > > > In my research, I came across a couple of

> > articles

> > > > that are listing ptosis and blepharophimosis as

> > two of

> > > > the MANY symptoms associated with fetal alcohol

> > > > syndrome. (FAS) I had never heard this before

> > and

> > > > wanted to share the information.

> > > >

> > > > http://www.aoj.org/abstracts/41/41_132.html

> > > >

> > > > http://www.emedicine.com/ped/topic767.htm

> > > >

> > > > If anyone else has information about this could

> > you

> > > > please post and pass it on? And if anyone is

> > headed

> > > > to a geneticist soon can you ask about this? I

> > tried

> > > > to schedule us and the soonest they can get us

> > in is

> > > > August.

> > > >

> > > > Because Micah is adopted I have no idea what

> > prenatal

> > > > exposure he had. Birthmom did admit to drinking

> > - but

> > > > of course we have no way of knowing how much.

> > Also,

> > > > his genetic testing in Korea came back normal -

> > which

> > > > seems weird for BPES. So we are trying to piece

> > this

> > > > all together.

> > > >

> > > > Thanks!

> > > > April Eisele, Colorado, USA

> > > > Wife to Jon

> > > > Mommy to Mira, Micah & Misha

> > > >

> > __________________________________________________

> > > >

May 31, 2006

Thanks for the proper medical terminology.... I just suggested it because the growth part of it was similar sounding to *Celiac* thought I would throw it in there:)

Leanne:)

-- Re: blepharophimosis Re: Bleph & ptosis associated with FAS &

>FOXL2

>

>Cheryl,

>Perfect timing for me. Thank you for sharing your

>experience. We are going to Children's Hospital

>tomorrow for our first appointments to try to figure

>out why our little guy is not growing at all. (No

>bone growth in over a year now - not even his feet

>have grown. And he is not gaining weight.) I will

>ask the endocrinologist to check zinc when they run

>more blood work. Anything we can be prepared to ask

>about is a help - even if that's not it - it helps us

>rule something out.

>April

>

>--- chucky23456 <chucky23456@...> wrote:

>

> > Hi, I have just found your site while doing some

> > research. My son

> > does have a chromosome 3 deletion and has some of

> > the symptoms of

> > BPES although very few. He actually does have a

> > deletion of

> > chromosome 3q23 (where FOXL2 is) yet only has two

> > symptoms of BPES

> > which is unusual for this deletion. The two

> > symptoms he has are

> > strabismus and had a lacrimal eye duct problem as a

> > baby yet it

> > isn't a problem anymore. His strabismus was also

> > corrected twice

> > and it is now normal.

> >

> > I just wanted to let several of you know something

> > that may or may

> > not be of interest to know. My son Cameron also was

> > at first

> > labeled "failure to thrive" yet upon further

> > examination, he had a

> > severe zinc deficiency which was causing his growth

> > and development

> > problems. He is now 11 and I had to give him zinc

> > for several years

> > when he was much younger but he is now of normal

> > height and weight

> > and thriving like crazy. After the zinc was given

> > for a few weeks,

> > I noticed some huge changes in his eating patterns

> > and growth. I

> > know this may not be related but certainly something

> > that can be

> > checked in some cases just in case. There are two

> > different zinc

> > tests that can be given and the one that he was

> > deficient in was the

> > serum zinc test and not the other. I would not

> > suggest just giving

> > zinc if you suspect something though because if you

> > give zinc

> > unnecessarily, it can affect your iron levels as

> > well.

> >

> > Again, I know it may not help everyone but if it can

> > help one

> > person, I'm happy to have shared it.

> >

> > Cheryl

> >

> > > >

> > > > Hi Everyone,

> > > >

> > > > Our son, Micah, has suddenly stopped growing.

> > Not

> > > > just slow growth or short stature - stopped

> > growing

> > > > all together. No bone growth AT ALL in the last

> > year.

> > > > And he is not gaining weight, in fact he lost

> > two

> > > > pounds. All he does is eat all day long - so it

> > is

> > > > not a nutritional issue.

> > > >

> > > > We have been referred to Children's Hospital and

> > are

> > > > trying to find the cause for the lack of growth,

> > also

> > > > called "Failure to Thrive" in the medical

> > community.

> > > > (Such a misleading term as this child is happy

> > and

> > > > silly, and such a "thriving" and normal four

> > year old

> > > > boy. He just isn't growing. But I digress.)

> > > >

> > > > In my research, I came across a couple of

> > articles

> > > > that are listing ptosis and blepharophimosis as

> > two of

> > > > the MANY symptoms associated with fetal alcohol

> > > > syndrome. (FAS) I had never heard this before

> > and

> > > > wanted to share the information.

> > > >

> > > > http://www.aoj.org/abstracts/41/41_132.html

> > > >

> > > > http://www.emedicine.com/ped/topic767.htm

> > > >

> > > > If anyone else has information about this could

> > you

> > > > please post and pass it on? And if anyone is

> > headed

> > > > to a geneticist soon can you ask about this? I

> > tried

> > > > to schedule us and the soonest they can get us

> > in is

> > > > August.

> > > >

> > > > Because Micah is adopted I have no idea what

> > prenatal

> > > > exposure he had. Birthmom did admit to drinking

> > - but

> > > > of course we have no way of knowing how much.

> > Also,

> > > > his genetic testing in Korea came back normal -

> > which

> > > > seems weird for BPES. So we are trying to piece

> > this

> > > > all together.

> > > >

> > > > Thanks!

> > > > April Eisele, Colorado, USA

> > > > Wife to Jon

> > > > Mommy to Mira, Micah & Misha

> > > >

> > __________________________________________________

> > > >

May 31, 2006

My son had also been checked for Celiac Sprue back when he was diagnosed. He was also checked for malabsorbtion and about a dozen other things. I'm glad he didn't have Celiac, it can be difficult to follow a diet that strict. My girlfriend and my sister's SIL has it and they are both on a special diet and doing great. Cherylcostellos <tltne@...> wrote: Thanks for the proper medical terminology.... I just suggested it because the growth part of it was similar sounding to *Celiac* thought I would throw it in there:) Leanne:) -- Re: blepharophimosis Re: Bleph & ptosis associated with FAS & >FOXL2 > >Cheryl, >Perfect timing for me. Thank you for sharing your >experience. We are going to Children's Hospital >tomorrow for our first appointments to try to figure >out why our little guy is not growing at all. (No >bone growth in over a year now - not even his feet >have grown. And he is not gaining weight.) I will >ask the endocrinologist to check zinc when they run >more blood work. Anything we can be prepared to ask >about is a help - even if that's not it - it helps us >rule something out. >April > > > >--- chucky23456 <chucky23456@...> wrote: > > > Hi, I have just found your site while doing some > > research. My son > > does have a chromosome 3 deletion and has some of > > the symptoms of > > BPES although very few. He actually does have a > > deletion of > > chromosome 3q23 (where FOXL2 is) yet only has two > > symptoms of BPES > > which is unusual for this deletion. The two > > symptoms he has are > > strabismus and had a lacrimal eye duct problem as a > > baby yet it > > isn't a problem anymore. His strabismus was also > > corrected twice > > and it is now normal. > > > > I just wanted to let several of you know something > > that may or may > > not be of interest to know. My son Cameron also was > > at first > > labeled "failure to thrive" yet upon further > > examination, he had a >

> severe zinc deficiency which was causing his growth > > and development > > problems. He is now 11 and I had to give him zinc > > for several years > > when he was much younger but he is now of normal > > height and weight > > and thriving like crazy. After the zinc was given > > for a few weeks, > > I noticed some huge changes in his eating patterns > > and growth. I > > know this may not be related but certainly something > > that can be > > checked in some cases just in case. There are two > > different zinc > > tests that can be given and the one that he was > > deficient in was the > > serum zinc test and not the other. I

would not > > suggest just giving > > zinc if you suspect something though because if you > > give zinc > > unnecessarily, it can affect your iron levels as > > well. > > > > Again, I know it may not help everyone but if it can > > help one > > person, I'm happy to have shared it. > > > > Cheryl > > > > > > > > > > > > > > > > > > Hi Everyone, > > > > > > > > Our son, Micah, has suddenly stopped growing. > > Not > > > > just slow growth or short stature - stopped > >

growing > > > > all together. No bone growth AT ALL in the last > > year. > > > > And he is not gaining weight, in fact he lost > > two > > > > pounds. All he does is eat all day long - so it > > is > > > > not a nutritional issue. > > > > > > > > We have been referred to Children's Hospital and > > are > > > > trying to find the cause for the lack of growth, > > also > > > > called "Failure to Thrive" in the medical > > community. > > > > (Such a misleading term as this child is happy > > and > > > > silly, and such a "thriving" and normal four > > year old

> > > > boy. He just isn't growing. But I digress.) > > > > > > > > In my research, I came across a couple of > > articles > > > > that are listing ptosis and blepharophimosis as > > two of > > > > the MANY symptoms associated with fetal alcohol > > > > syndrome. (FAS) I had never heard this before > > and > > > > wanted to share the information. > > > > > > > > http://www.aoj.org/abstracts/41/41_132.html > > > > > > > > http://www.emedicine.com/ped/topic767.htm > > > > > > >

> If anyone else has information about this could > > you > > > > please post and pass it on? And if anyone is > > headed > > > > to a geneticist soon can you ask about this? I > > tried > > > > to schedule us and the soonest they can get us > > in is > > > > August. > > > > > > > > Because Micah is adopted I have no idea what > > prenatal > > > > exposure he had. Birthmom did admit to drinking > > - but > > > > of course we have no way of knowing how much. > > Also, > > > > his genetic testing in Korea came back normal - > > which > > > > seems weird for

BPES. So we are trying to piece > > this > > > > all together. > > > > > > > > Thanks! > > > > April Eisele, Colorado, USA > > > > Wife to Jon > > > > Mommy to Mira, Micah & Misha > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > >

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