Greetings

[Guest guest]

Anne: So sorry to hear of all your problems. I pray you will soon have

many, many better days. I have been on Mtx for about 6-7 yrs-15 mgs. weekly.

My hair too did start to fall out and I now take folic acid which has

helped. I have been on 15 mg. of Prednisone since the beginning and

absolutely hate what it has done to me. I have gained about 60 lbs, my face

is swollen and fat and I hate the way I look. I have an appt on the 19th and

am going to tell the dr. I want off it. Enough is enough. My vision has

deteriorated so badly I can hardly see and I honestly don't think it has

helped at all.

In spite of everything, you seem to keep a positive attitude which we all

know helps tremendously. I pray you will have a pain free week . Post when

you can and remember we are here for you.

Jan in SC

[Guest guest]

Hi Anne,

I really enjoyed your post, thank you for making it long. I hope

that you do start feeling better soon. I also pray for the group.

So, you are in my prayers.

Hope you can get off the prednisone soon. I havn't had any real hard

time coming off the prednisone. But I have never taken it longer

than two months. Perhaps that is why it wasn't difficult. I only

took 10 mg and I had the side affects, can't imagine taking 60 mg.

God speed,

> I know it has been a while since I had a chance to say hello: I've

> been very sick with a bad lung infection for over six weeks. I

went

> through two rounds of powerful antibiotics and broke two ribs; but

I

> am feeling better and, even though I am still coughing, I hope and

> pray it will eventually clear up without having to go any further.

I

> am aware of the serious pulmonary complications with RA so I was

> rather worried. I also appreciated the articles posted on this site

> about this subject, they were very timely, thank you.

>

> I have been on mtx for many years now and recently changed to

> injections to get a better response since I was doing poorly after

> going off the Anakinra. I find the injections are easier on my

poor

> digestive tract, plus they are cheaper than the pills. I hope

anyone

> else who is having trouble with their stomachs will try this

> alternative since mtx is still a good way to treat RA. I started

> losing my hair several years ago so I began taking folic acid which

> stopped that. I now have a full head of hair again, thank God!

>

> My doctor told me studies have shown that drinking coffee can

> interfere with the working of mtx so I have finally weaned myself

off

> of coffee. No easy task since I love coffee and when I wake up

every

> morning in searing pain, feeling like I had been hit by a truck in

my

> sleep, my first thought was to drag myself to my kitchen and think:

> give me coffee or I will die! Somehow drinking green tea as I am

now

> doing doesn't have the same effect. Oh well, such is life.

>

> Some people in the group have mentioned prednisone use. I strongly

> recommend you avoid it if you can. I have never gone into

remission

> for the 26 years I have had RA, although my disease did improve for

> about ten years. Then in 1987, after a severe emotional trauma,

the

> disease exploded and I got much worse and have continued to go down

> hill health wise since. I went on prednisone in 1987 only for a

> short period while I began taking gold shots with the idea I would

> stop the prednisone when the gold kicked in. Well, that never

> happened and I am still trying to get off of it. I was taking 20mg

> per day and 60mg per day when the flare got worse. Going on mtx

> allowed me to cut the dose to 10mg per day where I still remain

> despite my many painful attempts to lower or eliminate the dose. In

> the meantime, I have gained over 60 pounds, developed acne, a

buffalo

> hump, hair on my face, osteoporsis, to name a few of the unpleasant

> side effects. I also can't pass urine normally so I retain most of

> what I take in. Despite taking strong water pills, I sometimes go

> for hours, even all day without being able to pass any urine except

> tiny amounts. My stomach is so swollen from all the fluid

retention,

> with big purple marks where my skin is streched thin, that

sometimes

> when I inject myself there with something I think of a popped

balloon

> and wonder if one day I won't just explode!! It is easier to get

off

> of pain killers than prednisone, believe me. Being a hopeless

> optimist, I am hoping the combination of Enbrel\Anakinra\MTX will

> finally allow me to either lower or, please God, eliminate it all

> together. So please be careful with this and if you have to take

it,

> try to keep the dose at 10mg per day or lower as the symptoms

aren't

> as bad on the lower doses.

>

> I was very sorry to hear about your divorce . I have never

been

> married but I can imagine how painful it must be for you and your

> children. Please know of my prayers for you and your family, may

God

> bring you all healing and peace.

>

> I was also sorry to hear about the death of Big Mac. Losing a

> beloved pet can be so difficult! A woman at my Church lost two

cats

> she had for over 14 years. She was devasated by the loss. She

> wanted to do something to celebrate their lives and the love they

> gave her so she asked me if I could do a funeral service for them.

I

> said yes although I was at a loss to what exactly I would do since

I

> couldn't find anything about funeral rites for animals. I just had

> to let the Spirit move me and after much prayer I came up with

> several passages from the Bible that seemed appropriate. The only

> reference I could find to cats, actually lions - close enough, is

in

> psalm 104, which is really beautiful. It was actually a very moving

> experience. She invited several of her close friends to attend and

> they really got into the feeling of the whole service. She had

> pictures of her cats on the table and spoke about what they meant

to

> her. I read from the Bible about how God's love is in all creation

> and how the unconditional love of animals reflects God's love for

> us. Then we all held hands and prayed the Our Father. Afterwards

we

> had a celebration with a lot of laughing and crying. She felt much

> better afterwards, having some way to express her grief, and I

often

> wondered why this isn't done more often, considering the important

> part pets play in our lives. Anyway Carol, I do hope you find

> comfort in the love of your dog and in the knowledge that your

> special love for him lives on so in a a way he lives on also in

your

> heart and memory.

>

> I know this is long but I wanted to catch up with some of the

> discussions. Even though I am not able to write often, I do enjoy

> reading the messages and I always pray for all the people in the

> group. Oh yes, congratulations to the newly weds! It is great to

> hear about the positive steps we take despite the problems we all

> face. Let's keep it up, shall we?

>

> love and prayers to all,

> Anne

[Guest guest]

Dear friends,

It was wonderful to read about your child and what you have gone through and we wish the best for Abigail.

Our new born child (2 and half months old) has this same problem (we think) and may require a good surgeon. Can you please give us the name and address of Dr Greg and whether we can contact him by email? We are Indians living in Bahrain and wonder what the costs would be? We may not be able to afford the high costs in USA but want to do all we can for our daughter.

Anushka's photos have been posted on the Group site.

Kind regards

deepak & latabozzybone <kahrhoff3@...> wrote:

greetings to all who read this. my name is terry. my wife karen and i live in st louis with our daughter abigail who will be celebrating her 3rd b-day tomorrow. i stumbled across a great website on BPES the other day and it led me directly to you guys in the support group. it was the first time since my daughter has been born that i relentlessly wanted to find out more on her disorder. this group has not only been a godsend, but also been extremely informational through the emails i have read. abigail was born nov 17th, 2000 and was diagnosed less than three weeks later. several months into her life we took her to st louis CHILDRENS HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric opthamologist. he is one of the best. he has seen other cases of BPES and was very thorough on what to do, step by step. abigail has

had two surgeries to lift the lids off of the pupils. the big surgery is yet to come. he will take out the section of skin(on each eye) from the inside corner to the bridge of her nose to make the openings bigger. this will happen around the age of five. as for abigail. we could not ask for a better child. all of the possibilties of developemental issues that could go along with BPES have not affected her. in fact its quite the opposite. she has been talking in full sentences since the age of two and we are getting pressure from the district to get her IQ tested. as 30 year old parents we, like all of you, were shocked and scared when abigail was born. now, we would die without her. on behalf of my wife i want to say how happy we are to have found all of you and look forward to sharing pictures. the before and after of some of these are incredible and they give us great hope. like all of you, we will do whatever it takes to

provide abigail with the highest quality of life.regards to all from st louis terry and karen

[Guest guest]

dear deepak & lata,

thanks for your kind words. let me just tell you, i went to the GROUP site and looked at the pics of your daughter and it is scary how much she looked like abigail when she was that age. black hair and all. so darn cute. anyway, we will get the info together that you requested and email it to you as soon as we can. we can also give you a phone number if you would like that. one thing that i will tell both of you is that it may take several surgeries. what happens initially is they are concerned about the childs sight. as you know at such a young age they develope and grow by using their eyes. so, dr. leudder's first goal was to get abigails drooping lids off of her pupils so she could see and not have to tilt her head back. so, when she was about nine months they took donor tissue(muscle) and cut her through her eyebrow and somehow tied it to her eyelid and pulled. this way the lid was raised and off the pupil. here comes the tricky part with the multiple surgeries. over time the tissue will develope elastisity because the cild is now raising her lids up and down. the lids will then fall back to covering the pupils, which will result in having another surgery to do the same thing. abigails second surgery was around the age of two and so far so is doing well. they have fallen a little but not as much. i hope i am not confusing you guys, but im trying to let you know that it takes several surgeries before the big one that involves cosmetics. one thing you dont want is a doctor who has just "heard" of our childrens' disorder. you want a doctor who is a surgeon, who is an opthamologist not an optometrist, and you want one that will show you pictures of his previous work. dr greg luedder was all of those to us. i hope this helps. we are thinking of you and Anushka. i will get the info to you as soon as possible.

terry and karen

Re: blepharophimosis greetings

Dear friends,

It was wonderful to read about your child and what you have gone through and we wish the best for Abigail.

Our new born child (2 and half months old) has this same problem (we think) and may require a good surgeon. Can you please give us the name and address of Dr Greg and whether we can contact him by email? We are Indians living in Bahrain and wonder what the costs would be? We may not be able to afford the high costs in USA but want to do all we can for our daughter.

Anushka's photos have been posted on the Group site.

Kind regards

deepak & latabozzybone <kahrhoff3@...> wrote:

greetings to all who read this. my name is terry. my wife karen and i live in st louis with our daughter abigail who will be celebrating her 3rd b-day tomorrow. i stumbled across a great website on BPES the other day and it led me directly to you guys in the support group. it was the first time since my daughter has been born that i relentlessly wanted to find out more on her disorder. this group has not only been a godsend, but also been extremely informational through the emails i have read. abigail was born nov 17th, 2000 and was diagnosed less than three weeks later. several months into her life we took her to st louis CHILDRENS HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric opthamologist. he is one of the best. he has seen other cases of BPES and was very thorough on what to do, step by step. abigail has had two surgeries to lift the lids off of the pupils. the big surgery is yet to come. he will take out the section of skin(on each eye) from the inside corner to the bridge of her nose to make the openings bigger. this will happen around the age of five. as for abigail. we could not ask for a better child. all of the possibilties of developemental issues that could go along with BPES have not affected her. in fact its quite the opposite. she has been talking in full sentences since the age of two and we are getting pressure from the district to get her IQ tested. as 30 year old parents we, like all of you, were shocked and scared when abigail was born. now, we would die without her. on behalf of my wife i want to say how happy we are to have found all of you and look forward to sharing pictures. the before and after of some of these are incredible and they give us great hope. like all of you, we will do whatever it takes to provide abigail with the highest quality of life.regards to all from st louis terry and karen

[Guest guest]

Dear & Terry,

Can we thank you enough?? You have explained the situation so well that a doctor will not be able to do it better. Unfortunately, not a single doctor here (in Bahrain) mentioned anything about this condition and the first we heard the word blep was from my cousin in New York.

We are definitely in for the long haul and it scares us and we hope we have the strength and courage to see it through. Anushka is so cute and lovable that every time we see her we feel she is perfect!!

As insurance will not cover the operations and we will need to foot all the bills, can you just indicate what this may cost?

Thanks to both of you again and look forward to receiving the Doctor's contact details also.

With love & regards

lata & deepak Kahrhoff <kahrhoff3@...> wrote:

dear deepak & lata,

thanks for your kind words. let me just tell you, i went to the GROUP site and looked at the pics of your daughter and it is scary how much she looked like abigail when she was that age. black hair and all. so darn cute. anyway, we will get the info together that you requested and email it to you as soon as we can. we can also give you a phone number if you would like that. one thing that i will tell both of you is that it may take several surgeries. what happens initially is they are concerned about the childs sight. as you know at such a young age they develope and grow by using their eyes. so, dr. leudder's first goal was to get abigails drooping lids off of her pupils so she could see and not have to tilt her head back. so, when she was about nine months they took donor tissue(muscle) and cut her through her eyebrow and somehow tied it to her eyelid and pulled. this way the lid was raised and off the pupil. here comes the tricky part

with the multiple surgeries. over time the tissue will develope elastisity because the cild is now raising her lids up and down. the lids will then fall back to covering the pupils, which will result in having another surgery to do the same thing. abigails second surgery was around the age of two and so far so is doing well. they have fallen a little but not as much. i hope i am not confusing you guys, but im trying to let you know that it takes several surgeries before the big one that involves cosmetics. one thing you dont want is a doctor who has just "heard" of our childrens' disorder. you want a doctor who is a surgeon, who is an opthamologist not an optometrist, and you want one that will show you pictures of his previous work. dr greg luedder was all of those to us. i hope this helps. we are thinking of you and Anushka. i will get the info to you as soon as possible.

terry and karen

Re: blepharophimosis greetings

Dear friends,

It was wonderful to read about your child and what you have gone through and we wish the best for Abigail.

Our new born child (2 and half months old) has this same problem (we think) and may require a good surgeon. Can you please give us the name and address of Dr Greg and whether we can contact him by email? We are Indians living in Bahrain and wonder what the costs would be? We may not be able to afford the high costs in USA but want to do all we can for our daughter.

Anushka's photos have been posted on the Group site.

Kind regards

deepak & latabozzybone <kahrhoff3@...> wrote:

greetings to all who read this. my name is terry. my wife karen and i live in st louis with our daughter abigail who will be celebrating her 3rd b-day tomorrow. i stumbled across a great website on BPES the other day and it led me directly to you guys in the support group. it was the first time since my daughter has been born that i relentlessly wanted to find out more on her disorder. this group has not only been a godsend, but also been extremely informational through the emails i have read. abigail was born nov 17th, 2000 and was diagnosed less than three weeks later. several months into her life we took her to st louis CHILDRENS HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric opthamologist. he is one of the best. he has seen other cases of BPES and was very thorough on what to do, step by step. abigail has

had two surgeries to lift the lids off of the pupils. the big surgery is yet to come. he will take out the section of skin(on each eye) from the inside corner to the bridge of her nose to make the openings bigger. this will happen around the age of five. as for abigail. we could not ask for a better child. all of the possibilties of developemental issues that could go along with BPES have not affected her. in fact its quite the opposite. she has been talking in full sentences since the age of two and we are getting pressure from the district to get her IQ tested. as 30 year old parents we, like all of you, were shocked and scared when abigail was born. now, we would die without her. on behalf of my wife i want to say how happy we are to have found all of you and look forward to sharing pictures. the before and after of some of these are incredible and they give us great hope. like all of you, we will do whatever it takes to

provide abigail with the highest quality of life.regards to all from st louis terry and karen

[Guest guest]

DEAR SHEILA, DEEPAK AND LATA,

as far as the insurance goes, here is what my wife and i ran into. the insurance i have through my job is good. it has covered all of our bills for our daughter thus far. but, what you need to understand is this. if most doctors in the world have never seen our childrens disorder then the insurance companies will be asking a ton of questions. as all of you know, no matter how good your carrier is, none of them(insurance) will cover cosmetic surgery. but here is where we will benefit. the initial surgeries are not cosmetic and in fact are essential for the developement of your child. so they are no different thean if your child were going to fix a broken arm. so you shouldnt have any problems there. second, when you go for what my wife and i call the "big" surgery to make the eyes bigger, you should make sure that the hospital helps you with the insurance companies. whether you use an ocular plastics surgeon or a opthamologic surgeon the surgery is NOT cosmetic even still, it is for medical purposes to enhance the quality of life. in other words, its not a nose job. trust me, CHILDRENS in st louis has told us that they will handle the insurance companies....just worry about your child. im sure any respectable childrens hospital will do the same. hope this helps. as for the info requested::::::

(hospital)

ST LOUIS CHILDRENS HOSPITAL

# 1 childrens place drive, st louis missouri 63110-1077 USA

314 454 6000

(abigails doctors and clinic)

ST LOUIS CHILDRENS HOSPITAL EYE CENTER--WASHINGTON UNIVERSITY MEDICAL CENTER

Lawrence Tychsen M.D. (surgeon)

Gregg Luedder M.D. (surgeon)

314 454 6026

deepak and lata, i have dug into my papers and found each surgery from start to finish to be around 5-6 thousand dollars. please keep in mind that these two doctors are some of the best opthamologist in the country, BUT they are not ocular plactics surgeons. we are using them because of their tremendous reputation here in st louis, but the wife and i are still consulting with ocular plastics. sorry for the long message again.

terry and karen

Re: blepharophimosis greetings

Dear friends,

It was wonderful to read about your child and what you have gone through and we wish the best for Abigail.

Our new born child (2 and half months old) has this same problem (we think) and may require a good surgeon. Can you please give us the name and address of Dr Greg and whether we can contact him by email? We are Indians living in Bahrain and wonder what the costs would be? We may not be able to afford the high costs in USA but want to do all we can for our daughter.

Anushka's photos have been posted on the Group site.

Kind regards

deepak & latabozzybone <kahrhoff3@...> wrote:

greetings to all who read this. my name is terry. my wife karen and i live in st louis with our daughter abigail who will be celebrating her 3rd b-day tomorrow. i stumbled across a great website on BPES the other day and it led me directly to you guys in the support group. it was the first time since my daughter has been born that i relentlessly wanted to find out more on her disorder. this group has not only been a godsend, but also been extremely informational through the emails i have read. abigail was born nov 17th, 2000 and was diagnosed less than three weeks later. several months into her life we took her to st louis CHILDRENS HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric opthamologist. he is one of the best. he has seen other cases of BPES and was very thorough on what to do, step by step. abigail has had two surgeries to lift the lids off of the pupils. the big surgery is yet to come. he will take out the section of skin(on each eye) from the inside corner to the bridge of her nose to make the openings bigger. this will happen around the age of five. as for abigail. we could not ask for a better child. all of the possibilties of developemental issues that could go along with BPES have not affected her. in fact its quite the opposite. she has been talking in full sentences since the age of two and we are getting pressure from the district to get her IQ tested. as 30 year old parents we, like all of you, were shocked and scared when abigail was born. now, we would die without her. on behalf of my wife i want to say how happy we are to have found all of you and look forward to sharing pictures. the before and after of some of these are incredible and they give us great hope. like all of you, we will do whatever it takes to provide abigail with the highest quality of life.regards to all from st louis terry and karen

[Guest guest]

Dear Sheila,

Thank you for the wishes. Our daughter is indeed a large bundle of joy!!

We pray that your daughter comes through the future surgeries comfortably and wish you all the very best.

Kindest regards

lata & deepakmathias <mathias@...> wrote:

I was also wondering about insurance and the costs of the surgeries. Our daughter, 4 yrs old, has not had any surgeries yet, but should start to have them in a few years. I have not checked with our insurance yet to see if they will cover this. Can anyone give us an idea of the costs of surgeries you have seen and if your insurance covered it? I guess I want to know what to expect. Thank you. To Lata and Deepak, good luck, I’m sure your daughter is a joy!! God Bless,

--Sheila

-----Original Message-----From: Deepak Kamath [mailto:deepak953@...] Sent: Monday, November 17, 2003 3:49 AMblepharophimosis Subject: Re: blepharophimosis greetings

Dear & Terry,

Can we thank you enough?? You have explained the situation so well that a doctor will not be able to do it better. Unfortunately, not a single doctor here (in Bahrain) mentioned anything about this condition and the first we heard the word blep was from my cousin in New York.

We are definitely in for the long haul and it scares us and we hope we have the strength and courage to see it through. Anushka is so cute and lovable that every time we see her we feel she is perfect!!

As insurance will not cover the operations and we will need to foot all the bills, can you just indicate what this may cost?

Thanks to both of you again and look forward to receiving the Doctor's contact details also.

With love & regards

lata & deepak Kahrhoff <kahrhoff3@...> wrote:

dear deepak & lata,

thanks for your kind words. let me just tell you, i went to the GROUP site and looked at the pics of your daughter and it is scary how much she looked like abigail when she was that age. black hair and all. so darn cute. anyway, we will get the info together that you requested and email it to you as soon as we can. we can also give you a phone number if you would like that. one thing that i will tell both of you is that it may take several surgeries. what happens initially is they are concerned about the childs sight. as you know at such a young age they develope and grow by using their eyes. so, dr. leudder's first goal was to get abigails drooping lids off of her pupils so she could see and not have to tilt her head back. so, when she was about nine months they took donor tissue(muscle) and cut her through her eyebrow and somehow tied it to her

eyelid and pulled. this way the lid was raised and off the pupil. here comes the tricky part with the multiple surgeries. over time the tissue will develope elastisity because the cild is now raising her lids up and down. the lids will then fall back to covering the pupils, which will result in having another surgery to do the same thing. abigails second surgery was around the age of two and so far so is doing well. they have fallen a little but not as much. i hope i am not confusing you guys, but im trying to let you know that it takes several surgeries before the big one that involves cosmetics. one thing you dont want is a doctor who has just "heard" of our childrens' disorder. you want a doctor who is a surgeon, who is an opthamologist not an optometrist, and you want one that will show you pictures of his previous work. dr greg luedder was all of those to us. i hope this helps. we are thinking of you and Anushka. i will get the info to you as soon as

possible.

terry and karen

Re: blepharophimosis greetings

Dear friends,

It was wonderful to read about your child and what you have gone through and we wish the best for Abigail.

Our new born child (2 and half months old) has this same problem (we think) and may require a good surgeon. Can you please give us the name and address of Dr Greg and whether we can contact him by email? We are Indians living in Bahrain and wonder what the costs would be? We may not be able to afford the high costs in USA but want to do all we can for our daughter.

Anushka's photos have been posted on the Group site.

Kind regards

deepak & latabozzybone <kahrhoff3@...> wrote:

greetings to all who read this. my name is terry. my wife karen and i live in st louis with our daughter abigail who will be celebrating her 3rd b-day tomorrow. i stumbled across a great website on BPES the other day and it led me directly to you guys in the support group. it was the first time since my daughter has been born that i relentlessly wanted to find out more on her disorder. this group has not only been a godsend, but also been extremely informational through

the emails i have read. abigail was born nov 17th, 2000 and was diagnosed less than three weeks later. several months into her life we took her to st louis CHILDRENS HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric opthamologist. he is one of the best. he has seen other cases of BPES and was very thorough on what to do, step by step. abigail has had two surgeries to lift the lids off of the pupils. the big surgery is yet to come. he will take out the section of skin(on each eye) from the inside corner to the bridge of her nose to make the openings bigger. this will

happen around the age of five. as for abigail. we could not ask for a better child. all of the possibilties of developemental issues that could go along with BPES have not affected her. in fact its quite the opposite. she has been talking in full sentences since the age of two and we are getting pressure from the district to get her IQ tested. as 30 year old parents we, like all of you, were shocked and scared when abigail was born. now, we would die without her. on behalf of my wife i want to say how happy we are to have found all of you and look forward to sharing pictures. the

before and after of some of these are incredible and they give us great hope. like all of you, we will do whatever it takes to provide abigail with the highest quality of life.regards to all from st louis terry and karen

[Guest guest]

Dear Deepak & Lata,

Our daughter a is one and a half years old and was born &

diagnosed in the US. Now we live in Germany and have been to many

specialists. We have heard several times from surgeons who saw a

that we should delay surgery as long as possible and should even

consider not having any surgery done as her sight is not affected;

her case is moderate. Fortunately, her sight is very good so we are

still waiting before operating, we are looking to have the operation

done when she is around five years old.

The most important thing for you at the moment is to ensure that

Anushkas sight is fine, any peadiatric opthalmologist should be able

to test Anushkas vision. If her vision is fine, we have been

recommended to prolong the surgery as long as possible for the best

plastic surgery results.

There are also alternatives to the US. Have you considered Moorfield

eye hospital in London, UK wo have excellent experience of BPES

operations.

As for the genetic testing; a also had a full set of chromosones

whichdoes not tell the whole story as there may be a mutated FOX L2

gene within chromosone 3. The test for locating the FOX L2 gene on

chromosone 3 can only be done in very few countries. Were are

currently having a test done in the University clinic of Gent in

Belgium.

We hope that we have been able to help, we will post photo of a

soon.

Kind regards,

Anja & Hassan Shahin

> greetings to all who read this. my name is terry. my wife karen

and

> i live in st louis with our daughter abigail who will be

celebrating

> her 3rd b-day tomorrow. i stumbled across a great website on BPES

> the other day and it led me directly to you guys in the support

> group. it was the first time since my daughter has been born that

i

> relentlessly wanted to find out more on her disorder. this group

has

> not only been a godsend, but also been extremely informational

> through the emails i have read. abigail was born nov 17th, 2000

and

> was diagnosed less than three weeks later.

> several months into her life we took her to st louis CHILDRENS

> HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric

> opthamologist. he is one of the best. he has seen other cases of

> BPES and was very thorough on what to do, step by step. abigail

has

> had two surgeries to lift the lids off of the pupils. the big

> surgery is yet to come. he will take out the section of skin(on

each

> eye) from the inside corner to the bridge of her nose to make the

> openings bigger. this will happen around the age of five.

> as for abigail. we could not ask for a better child. all of the

> possibilties of developemental issues that could go along with

BPES

> have not affected her. in fact its quite the opposite. she has

been

> talking in full sentences since the age of two and we are getting

> pressure from the district to get her IQ tested.

> as 30 year old parents we, like all of you, were shocked and

scared

> when abigail was born. now, we would die without her. on behalf of

> my wife i want to say how happy we are to have found all of you

and

> look forward to sharing pictures. the before and after of some of

> these are incredible and they give us great hope. like all of you,

> we will do whatever it takes to provide abigail with the highest

> quality of life.

> regards to all from st louis

> terry and karen

>

>

>

[Guest guest]

Dear Anja & Hassan,

We are so glad that we are on this site. Such wonderful people we have come across - a great help and moral support!!

Have you both seen Anushka's photos? What do you think compared to what your child had at that age? Our child has not had her vision tested but the doctors say, and we strongly feel, that her vision is not affected. Anu moves her head and focuses on a moving object even when we dont make any sound and definitely reacts to light stimuli. Anyway, we will do the vision test as soon as the doctors here recommend one. Unfortunately, we could not find any pediatric opthalmologist in Bahrain so will see someone on our next trip to India.

We will definitely do the genetic test for FOX L2 test on Chromosone 3 in the near future if we find someone here who can send the sample to a good hospital in UK or elsewhere. Do you by any chance have the contact details (telephone/fax/email) of the Moorfield Eye Hospital in UK? So that we can write to them?

With our love to a and kindest regards to you all.

lata & deepakAnja Shahin <anjashahin@...> wrote:

Dear Deepak & Lata,Our daughter a is one and a half years old and was born & diagnosed in the US. Now we live in Germany and have been to many specialists. We have heard several times from surgeons who saw a that we should delay surgery as long as possible and should even consider not having any surgery done as her sight is not affected; her case is moderate. Fortunately, her sight is very good so we are still waiting before operating, we are looking to have the operation done when she is around five years old. The most important thing for you at the moment is to ensure that Anushkas sight is fine, any peadiatric opthalmologist should be able to test Anushkas vision. If her vision is fine, we have been recommended to prolong the surgery as long as possible for the best plastic surgery results.

There are also alternatives to the US. Have you considered Moorfield eye hospital in London, UK wo have excellent experience of BPES operations. As for the genetic testing; a also had a full set of chromosones whichdoes not tell the whole story as there may be a mutated FOX L2 gene within chromosone 3. The test for locating the FOX L2 gene on chromosone 3 can only be done in very few countries. Were are currently having a test done in the University clinic of Gent in Belgium. We hope that we have been able to help, we will post photo of a soon.Kind regards,Anja & Hassan Shahin> greetings to all who read this. my name is terry. my wife karen and > i live in st louis with our daughter abigail who will be celebrating > her 3rd b-day tomorrow. i stumbled across a great website on BPES > the other day and it led me directly to you guys in the support > group. it was the first time since my daughter has been born that i > relentlessly wanted to find out more on

her disorder. this group has > not only been a godsend, but also been extremely informational > through the emails i have read. abigail was born nov 17th, 2000 and > was diagnosed less than three weeks later. > several months into her life we took her to st louis CHILDRENS > HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric > opthamologist. he is one of the best. he has seen other cases of > BPES and was very thorough on what to do, step by step. abigail has > had two surgeries to lift the lids off of the pupils. the big > surgery is yet to come. he will take out the section of skin(on each > eye) from the inside corner to the bridge of her nose to make the > openings bigger. this will happen around the age of five. > as for abigail. we could not ask for a better child. all of the > possibilties of developemental issues that could go along with BPES >

have not affected her. in fact its quite the opposite. she has been > talking in full sentences since the age of two and we are getting > pressure from the district to get her IQ tested. > as 30 year old parents we, like all of you, were shocked and scared > when abigail was born. now, we would die without her. on behalf of > my wife i want to say how happy we are to have found all of you and > look forward to sharing pictures. the before and after of some of > these are incredible and they give us great hope. like all of you, > we will do whatever it takes to provide abigail with the highest > quality of life.> regards to all from st louis > terry and karen > > >

[Guest guest]

Dear Lata & Depak,

We can't imagine how hard it must be for you without any specialist help in

Bahrain.

Looking at Anushkas and as photos it seems to us that as eye

openings were even a bit smaller at the age of 2 or 3 month. During the

first 2 weeks a did not open her eyes at all and now she is doing really

great. The size of her eye openings improved a lot during her first year of

life. Now, at age 1,5 only 1/4 of her pupils is still covered by the upper

eye lids and she has to lift her chin when she wants to look up, but this

does not seem to bother her at all. All her vision tests turned out great,

she does not need glasses or so. She started walking at 13 month and has

never had any motoric or developmental delays.

If you can´t find a pediatric opthalmologist you can also go to a normal eye

doctor. He will be able to perform the tests, too. a had her sight

tested for the first time when she was 2 months old.

We have learned that the major concerns with the " drooping eye lids " are

1) Amplyopia, also called " lazy eye " . Amblyopia is the eye condition noted

by reduced vision. The brain does not fully acknowledge the images seen by

the amblyopic eye.

2) Strabismus, also known as " crossed-eyes " , is a vision condition in which

a person can not align both eyes simultaneously under normal conditions. One

or both of the eyes may turn in, out, up or down.

This is what needs to be ckecked on a regular basis with BPES patiens, in

as case every 4 month.

As we mentioned before, all specialists who have seen a - and these were

quite a lot, in the US and in Germany - recommended to delay surgery as long

as possible. Two of the surgeons even suggested not to have any surgery at

all. The more the face has matured the better are the results.

We have heard about a consultant eye surgeon Mr. Collin at Moorfields Eye

Hospital in London.

We have not seen him yet but a member of this group - I believe Hannah -

had her surgeries performed by him.

Mr Collin MA FRCS FRCOphth

020 7486 2699

020 7486 8626

We wish you all the best.

Anja & Hassan

>From: Deepak Kamath <deepak953@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis Re: greetings

>Date: Sun, 23 Nov 2003 23:35:17 -0800 (PST)

>

>Dear Anja & Hassan,

>

>We are so glad that we are on this site. Such wonderful people we have come

>across - a great help and moral support!!

>

>Have you both seen Anushka's photos? What do you think compared to what

>your child had at that age? Our child has not had her vision tested but the

>doctors say, and we strongly feel, that her vision is not affected. Anu

>moves her head and focuses on a moving object even when we dont make any

>sound and definitely reacts to light stimuli. Anyway, we will do the vision

>test as soon as the doctors here recommend one. Unfortunately, we could not

>find any pediatric opthalmologist in Bahrain so will see someone on our

>next trip to India.

>

>We will definitely do the genetic test for FOX L2 test on Chromosone 3 in

>the near future if we find someone here who can send the sample to a good

>hospital in UK or elsewhere. Do you by any chance have the contact details

>(telephone/fax/email) of the Moorfield Eye Hospital in UK? So that we can

>write to them?

>

>With our love to a and kindest regards to you all.

>

>lata & deepak

>

>Anja Shahin <anjashahin@...> wrote:

>Dear Deepak & Lata,

>

>Our daughter a is one and a half years old and was born &

>diagnosed in the US. Now we live in Germany and have been to many

>specialists. We have heard several times from surgeons who saw a

>that we should delay surgery as long as possible and should even

>consider not having any surgery done as her sight is not affected;

>her case is moderate. Fortunately, her sight is very good so we are

>still waiting before operating, we are looking to have the operation

>done when she is around five years old.

>

>The most important thing for you at the moment is to ensure that

>Anushkas sight is fine, any peadiatric opthalmologist should be able

>to test Anushkas vision. If her vision is fine, we have been

>recommended to prolong the surgery as long as possible for the best

>plastic surgery results.

>

>There are also alternatives to the US. Have you considered Moorfield

>eye hospital in London, UK wo have excellent experience of BPES

>operations.

>

>As for the genetic testing; a also had a full set of chromosones

>whichdoes not tell the whole story as there may be a mutated FOX L2

>gene within chromosone 3. The test for locating the FOX L2 gene on

>chromosone 3 can only be done in very few countries. Were are

>currently having a test done in the University clinic of Gent in

>Belgium.

>

>We hope that we have been able to help, we will post photo of a

>soon.

>

>Kind regards,

>Anja & Hassan Shahin

>

>

>

> > greetings to all who read this. my name is terry. my wife karen

>and

> > i live in st louis with our daughter abigail who will be

>celebrating

> > her 3rd b-day tomorrow. i stumbled across a great website on BPES

> > the other day and it led me directly to you guys in the support

> > group. it was the first time since my daughter has been born that

>i

> > relentlessly wanted to find out more on her disorder. this group

>has

> > not only been a godsend, but also been extremely informational

> > through the emails i have read. abigail was born nov 17th, 2000

>and

> > was diagnosed less than three weeks later.

> > several months into her life we took her to st louis CHILDRENS

> > HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric

> > opthamologist. he is one of the best. he has seen other cases of

> > BPES and was very thorough on what to do, step by step. abigail

>has

> > had two surgeries to lift the lids off of the pupils. the big

> > surgery is yet to come. he will take out the section of skin(on

>each

> > eye) from the inside corner to the bridge of her nose to make the

> > openings bigger. this will happen around the age of five.

> > as for abigail. we could not ask for a better child. all of the

> > possibilties of developemental issues that could go along with

>BPES

> > have not affected her. in fact its quite the opposite. she has

>been

> > talking in full sentences since the age of two and we are getting

> > pressure from the district to get her IQ tested.

> > as 30 year old parents we, like all of you, were shocked and

>scared

> > when abigail was born. now, we would die without her. on behalf of

> > my wife i want to say how happy we are to have found all of you

>and

> > look forward to sharing pictures. the before and after of some of

> > these are incredible and they give us great hope. like all of you,

> > we will do whatever it takes to provide abigail with the highest

> > quality of life.

> > regards to all from st louis

> > terry and karen

> >

> >

> >

[Guest guest]

HiMy name is Kathy and I live in Strongsville, OH I have a daughter who will be 3 soon with ASD I found this group by searching . I wanted to belong to a message board with other parents in my situation.I'd like to know if anyone has a DVD or a website link to a Playhouse Disney show called "Go Baby" It was a 3 to 5 minute mini-show that the Disney channel would present between shows at 6:30am on Mondays, Wednesdays and Fridays. I used to have it on my Tivo, but then it crashed and the episodes were lost. Disney no longer shows it, as far as I can tell. This is one of the only shows my daughter really enjoys. It doesn't go too fast or have any loud music. The narrator's voice is very soft and gentle and

the characters move at an easy pace. I look forward to learning more about Autism and finding out ways to help my daughter.Thanks,Kathy (aka BeansMama44136)

[Guest guest]

Dear MildredWelcome to our group. We are a community from all over the world. I don’t think we have had somebody from Kenya join us before.Like you, I am the only person in our family with BPES. I am 50 years old (but inside me, I am 28 years old J ).How did you get a diagnosis for your condition? Have you had any treatment for it?Take careShireenEngland From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of MildredSent: 07 February 2011 11:46blepharophimosis Subject: blepharophimosis Greetings Hi, to all of you who are in this interesting group.I am mildred from Kenya with blepharophimosis.I seriously do not know what to do because am the only one in our family who has it and I don't know the reason behind it.