My Daughter

[Guest guest]

congratulations and family. It is so hard to see them struggle. Aedan was born with exteme ptosis in both eyes and had surgery at 10 weeks of age. the operation was so successful and still holding. I remember so well nursing and looking finally into his baby-blues. Of course the operation was a wreck on mom and dad. , NYC

[Guest guest]

We are not doing surgery until she is like 3 because the doctor said she would have to have the surgery twice if we did it this early. Do you think that your son will have to have the surgery again when he gets older?

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[Guest guest]

The surgeon was hese

[Guest guest]

The surgeon was hesitant to do it but the opthamalogist said his ptosis was so severe it may damage his sight. It was so hard to make a decision that the doctors couldnt agree on. The surgeon, Dr. Mayer thought the surgery wouldnt hold more than a year or too. But Aedan turned 4 in June and he still doesnt need another soo.... I guess each case is different and each child is different.

[Guest guest]

That's exactly what happened to us. Our daughter is now 15 months and has had the surgery. In the end, the surgeon usually defers to the opthamologist because they are the ones tracking the eye health. The surgeon is worried about scarring, but in the end, it is the eyes that really matter.

We just went to the pediatric opthamologist today and she is now going to have to wear glasses for an astigmatism. Any suggestions on how to get her to keep the glasses on?? I can't even get her to wear sunglasses!

Tawnya

Boulder, CO

-------------- Original message -------------- From: rainamint@...

The surgeon was hesitant to do it but the opthamalogist said his ptosis was so severe it may damage his sight. It was so hard to make a decision that the doctors couldnt agree on. The surgeon, Dr. Mayer thought the surgery wouldnt hold more than a year or too. But Aedan turned 4 in June and he still doesnt need another soo.... I guess each case is different and each child is different.

[Guest guest]

Hi , my name is . My nephew was diagnosed a week ago with BPES. He is 22months old. His Dr. told my sister that he would also have to wear glasses. It's darn near impossible to get him to wear them! She had to make an elastic band to go around his head , attach each side to the arms of the glasses just to make them stay on. The Dr. said if she cant keep them on him, the Dr. will put some kind of eyedrops in his eyes , I guess to make his vision blurry, so he will WANT to keep them on. Good luck , and if you find a solution, please pass it on! Thanks for writing! .mtcarv@... wrote: That's exactly what happened to us. Our daughter is now 15 months and has had the surgery. In the end, the surgeon usually defers to the opthamologist because they are the ones tracking the eye health. The surgeon is worried about scarring, but in the end, it is the eyes that really matter. We just went to the pediatric opthamologist today and she is now going to have to wear glasses for an astigmatism. Any suggestions on how to get her to keep the glasses on?? I can't even get her to wear sunglasses! Tawnya Boulder, CO -------------- Original message -------------- From: rainamintaol The surgeon was hesitant to do it but the opthamalogist said his ptosis was so severe it may damage his sight. It was so hard to make a decision that the doctors couldnt agree on. The surgeon, Dr. Mayer thought the surgery wouldnt hold more than a year or too. But Aedan turned 4 in June and he still doesnt need another soo.... I guess each case is different and each child is different.

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi

Each person has there own set of circumstances which leads the surgeon to advise on the ideal time for surgery.

Please take a look here:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

the passage that may help you is here

Treatment of Manifestations

Management requires the input of several specialists including a geneticist, pediatric ophthalmologist, orthoptist, oculoplastic surgeon, pediatric endocrinologist, reproductive endocrinologist, and gynecologist.

Timing of eyelid surgery is controversial; it involves weighing the balance of early surgery to prevent deprivation amblyopia and late surgery to allow for more reliable ptosis measurements, the latter of which provides a better surgical outcome. Surgery is hampered by the dysplastic structure of the eyelids [beckingsale et al 2003]. The surgical management traditionally involves a medial canthoplasty for correction of the blepharophimosis, epicanthus inversus, and telecanthus at three to five years of age, followed about a year later by ptosis correction, which usually requires a brow suspension procedure. Autogeneous fascia lata gives excellent results, but is not reliable before 3.5 to four years of age because of a lack of available autogeneous fascia lata. In children below this age, silastic slings give good results and are easily adjusted if necessary.

For individuals with severe ptosis, surgical ptosis repair is recommended before the age of three years, followed by medial canthoplasty if necessary. For individuals with moderate ptosis, correction of ptosis may be deferred until the age of five years when surgery is often recommended for cosmetic reasons before starting school.

You may also like to take a look here:

http://www.emedicine.com/ent/topic97.htm

Again - you may like to take a look at this passage from the above site:

Blepharophimosis ptosis syndrome The last major subgroup that presents some difficulty in management is the autosomal dominant–inherited syndrome of blepharophimosis ptosis. Patients with this syndrome have blepharophimosis, severe ptosis (usually with no levator function), epicanthus inversus, and ectropion of the lateral portions of the lower lids. The ptosis is corrected by frontalis fixation at an early age. Canthoplasties may be performed to improve the blepharophimosis. The considerable epicanthus is usually best left until early adolescence, since the degree of this problem tends to diminish with time, and the skin becomes more supple and easy to move. The author has found Mustarde double Z-plasty the most effective method of correcting this problem. The ectropion of the lateral portion of the lower lids is due to a paucity of skin in the vertical direction and may require skin grafting to repair. A lateral tarsal strip may be necessary in addition to skin grafting to effect proper tightening and elevation in the reconstruction of these lids. If available, although it rarely is in these patients, upper lid skin may be used. Otherwise, a retroauricular skin graft provides the best donor site.

Please don't think of the above as advise about treatment. It would be wrong for anyone who is not an expert to advise you about treatment. Please consider it more as a reputable source of information that you may like to read, and then subsequently discuss with your doctor.

I know of several people who have BPES, who have not had surgery until much later. Some of them are members of this group. I know of one woman who was considering having surgery at 12 (that would have been the first time for her). As it happens, she did not, and by the time she was 18 (and effectively stopped growing) she looked just fine, and did not "need" anything, nor did she want anything.

I hope that this information will help you.

Take care, Shireen

London, England

(I am 45, the only person in my family with BPES)

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of cammie_avisSent: 18 September 2006 05:38blepharophimosis Subject: blepharophimosis My Daughter

My daughter is 23 months old and still has not had surgery. I read all of your stories and most of your children have already had the corrective surgery. I dont understand why our doctors dont want to do her surgery now. I have taken her to several surgeons adn they all say the same thing that she is too young. I am confussed and fustrated about this and dont know where to turn? If anyone has any advice please email me.

[Guest guest]

Hi

As has been said before each case is very different

and I can empathise with you frustration. I have heard many parents say

that the surgeries are left until later if the child’s vision is not

impaired so that that face can develop and grow naturally as it can change a lot.

I had my surgeries, done by Mr Collin, at 3 and 4 so it was all done before I

started school.

I would advise you to research for your

own peace of mind and to increase your knowledge, but work with your doctors.

Best of luck.

From:

blepharophimosis

[mailto:blepharophimosis ]

On Behalf Of cammie_avis

Sent: 18 September 2006 05:38

blepharophimosis

Subject: blepharophimosis My

Daughter

My daughter is 23 months old and still has not had

surgery. I read

all of your stories and most of your children have already had the

corrective surgery. I dont understand why our doctors dont want to do

her surgery now. I have taken her to several surgeons adn they all say

the same thing that she is too young. I am confussed and fustrated

about this and dont know where to turn? If anyone has any advice please

email me.

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[Guest guest]

My daughter was just born on 8-31-06 and the doctors told me the same thing and my husband also has this condition and the doctors waited to do his surgery until he was about 4 so this is a very commone thing but i know the feeling of just wanting them to do the surgery so they can see cause i would love for my daughter to be able to open her eyes but at the same time i don't want her to go through the surgery more once

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[Guest guest]

My son is only 3 months old now, but I feel the same as you...I'd love to get the surgeries over with as soon as possible. However the doctors do raise a good point in why they would like to wait. The older you are before having the surgery done, the less likely it is that you will eventually need revision surgery. Once the child has grown more, there is more skin tissue to work with for the surgeries and also they have a better idea of the ptosis correction that will be needed. I've decided that waiting's okay...but I definitely still want the surgeries to be completed before my son starts school so he doesn't have any social obstacles to overcome!

Hope this helps, MacKinnonHalifax, NS Canada

[Guest guest]

Hi there, I am a bit different then the previous replies you have received, my son Lynden (who is now almost 9) was 5 weeks old when he had his first surgery, (pretty young but in his case necessary) then 2yrs then 3.... he however had to have his first surgery due to the fact that the pupil was almost entirely covered by his lids, and if we left it the doctor said it would have been detrimental to his vision, now our doctor has other patients and they have all had surgery at different times in their life....a lady that I am friends with and her little girl did not have her first surgery till after 2 years of age......... so really it all depends on your doctor and your Childs varying degree of BPES, if you are not satisfied I always recommend you get a second opinion and a 3rd if need be, until you are comfortable with whatever happens.

good luck with everything and hopefully you will find some useful advice from this group.

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of cammie_avisSent: September 17, 2006 10:38 PMblepharophimosis Subject: blepharophimosis My Daughter

My daughter is 23 months old and still has not had surgery. I read all of your stories and most of your children have already had the corrective surgery. I dont understand why our doctors dont want to do her surgery now. I have taken her to several surgeons adn they all say the same thing that she is too young. I am confussed and fustrated about this and dont know where to turn? If anyone has any advice please email me.

[Guest guest]

My daughter was born with blepharophimosis in august which her daddy

has i have been reading that some women with this condition have

fertitly problems and some never even have a period how true is this?

and if this is true has any guys ever had fertilty problems? it took

my husband and i 1 year to get pregnant i was just wondering if i

should ecpect to have the same problem because of blepharophimosis. If

you have any thoughts on this subject please let me know them i am

interested in hearing them.

Thanks

[Guest guest]

Hi. This is to reply to s question about infertility: my sister was told that her son (my nephew),, who is almost 2 years old,and has been diagnosed with BPES, will not likely be able to produce children, because the tip his penis is bent sideways, and all the inside stuff ( the urethral tract, etc) is at the bottom of it, instead of the in middle (do you understand what I'm saying?) so, that when he urinates, it comes out to the side instead of straight out, and the Dr. said that would make it impossible to have children. I wasn't with my sister when the Dr. told her that, otherwise I would have asked him MORE questions! But, right now, this is all new to my sister, since my nephew was only diagnosed a couple of months ago. Those kind of questions can be tackled later on. Is there anyone out there with a similar situation like my nephews?-- in CA Lucy Chidgey <lcgosport@...> wrote: Hi Our daughter was also born with BPES being the first in the family. Holly is now 20 months old. All I know is that there are two types of BPES and depending on which type your child has means that they may have fertility problems. Also if they can have children they have 50% chance of passing BPES on to them. I believe that they can go through the menopause early and have irregular

periods?? However, I believe that someone who is actually going through it is more educated to answer your question. One thing I do know is that a male born with BPES is not affected with infertility but has a 50% chance to pass on to their children. I hope that makes sense. All the best. Lucy (Gosport, Hampshire UK) heather061784 <hbargajuno> wrote: My daughter was born with blepharophimosis in august which her daddy has i have been reading that some women with this condition have fertitly problems and some never even have a period how true is this? and if this is true has any guys ever had fertilty problems? it took my husband and i 1 year to get pregnant i was just wondering if i

should ecpect to have the same problem because of blepharophimosis. If you have any thoughts on this subject please let me know them i am interested in hearing them.Thanks All new "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Kirk...the best of luck to you. I'm glad you found a lawyer...you will be in my

thoughts and prayers....Blessings to you and yours.

Geri

[Guest guest]

Hi Kirk,

Wow Kirk your daughter has a lot going on right now. I am sure you are grateful

that your daughters CMT is very mild. If it takes several hours on a play

ground to notice that she has CMT it sounds like she is doing fine. At this

point I think a doctor would just keep an eye on her and not need to medically

intervene. I looked at her pictures and can't see any signs of CMT so that is

really good news. I am some what a pro of noticing hings like that.

[Guest guest]

Hello ,

I wish my daughter could play for several hours at the park, normally

she would play about thirty minutes until she started getting tired. I meant

that a professional needs to be around her for several hours

instead of sitting her in a chair and pronoucing her fit.

I saw my daughter again this week and she was underdressed and told me she was

cold, but no one said a word. I am supposed to remain silent about these

" little " matters because I was told I am blowing them out of proportion.

I know that when I am cold my hands and leg hurt because of the CMT. I posted a

pic of her with her cast on, and I looked at her arm again, she has a 2 inch

scar from her broken arm.

Kirk

[Guest guest]

Kirk,

I would trust your instincts with your daughter. I always wondered

why my three year old didn't seem as active when she played outside. She would

often get tired and want to come in. If she is breaking bones too that just

sounds weird. I hope you can get this all straightened out for the sake of your

girl.

Amelia

[Guest guest]

Hello.

My daughter has had surgery at 2years of age and now at 4yrs. I believe the best thing is to be honest and explain what is going on. Lots of reassurance that everything is going to be ok and that mummy will be with you the whole time really helped our little girl.

One of the nurses said to me that our Jessie did really well and thought it was definatley because we had explained to her what was happening.

I just said to her that she was going to go into hospital and I was going to sing her some songs. Then she would have a little sleep, while I held her hand and the drs were going to give her a little operation to help her eyes and help her see alot more. I said that when you wake up it will be all over and we will have an icecream.

She was fantastic. Totally focused on the icecream! I think if they go in, not knowing anything, they completely freak out, as we would but if they know what to expect, it makes it a whole lot better.

Good luck,

Machaela

From: rainamint@... <rainamint@...>Subject: Re: blepharophimosis my daughterblepharophimosis Received: Sunday, 3 January, 2010, 12:38 PM

I read any childrens books I could find about going to the hospital. One I remember is Curious

In a message dated 1/2/2010 4:31:26 P.M. Eastern Standard Time, haribo.molly@ btinternet. com writes:

my daughter molly is having the slings putting in on the 18th jan im a little worried about it as its her 1st op and i dont know how to tell molly whats happening as she is only 3, any ideas would be helpfull, also i had another baby girl phoebe 7 weeks ago i was a little worried that she would have bpes but she has not.

See what's on at the movies in your area. Find out now.

[Guest guest]

Hi ,

Before my daughter, Paige, had her surgeries I asked the nurse if we could could take a tour of the clinic. The nurse showed us the pre-op rooms, the special "pajamas" she would wear for her surgery, the mask she would wear to help her fall asleep (and the stickers she could have to decorate it), the juice and crackers she could have when she woke up, and the post-op room where we would be with her when she woke up. She explained exactly what would happen and that she would sleep through the entire procedure. Paige was 4 when she had her surgeries and she understood quite a bit. Another neat thing was that they gave Paige some fruit flavored chap-stick to rub on the inside of her mask so that the "funny" air that they used to put her to sleep wouldn't smell so medicine-like.

I also bought a play doctor kit and picked up some real latex gloves and mask so that we could play doctor and bascially act out what she would encounter on her surgery day. Anything you can do to make Molly feel a little bit in control of the situation is great. Books are a great suggestion too!

Also, another idea for after her surgery (in case she has additional surgeries) is to make a photo album of everything. I took pictures of Paige with her nurses and doctors as well as Paige in the car on the way there, in the waiting room, recovery after surgery, etc. It really helped Paige to process and remember her doctor and all of the people who helped her to be able to see better. I did it all online using Kodak and I was able to put captions under the pictures to make it really nice for her. I also used it again this year in Paige's kindergarten class as a way of explaining BPES and why Paige's eyes looked a little bit diffrent. Paige had been getting some questions from her classmates so the teacher allowed me to come in to speak to the class. Paige was so proud to share her photo album.

I hope some of the things I did inspire you. Explaining it all can be overwhelming to another adult so it's even more so with a 3 year old! Best of luck and I know she will do great!

North Carolina, USA

From: wendy673755 <haribo.molly@...>blepharophimosis Sent: Sat, January 2, 2010 4:31:20 PMSubject: blepharophimosis my daughter

my daughter molly is having the slings putting in on the 18th jan im a little worried about it as its her 1st op and i dont know how to tell molly whats happening as she is only 3, any ideas would be helpfull, also i had another baby girl phoebe 7 weeks ago i was a little worried that she would have bpes but she has not..

[Guest guest]

thank you for your email your ideas of explaining mollys op are really helpful i wouldnt of thought of these ideas myself will let you know how things go xx

From: Harvey <happyappykd@...>Subject: Re: blepharophimosis my daughterblepharophimosis Date: Friday, 8 January, 2010, 5:13

Hi ,

Before my daughter, Paige, had her surgeries I asked the nurse if we could could take a tour of the clinic. The nurse showed us the pre-op rooms, the special "pajamas" she would wear for her surgery, the mask she would wear to help her fall asleep (and the stickers she could have to decorate it), the juice and crackers she could have when she woke up, and the post-op room where we would be with her when she woke up. She explained exactly what would happen and that she would sleep through the entire procedure. Paige was 4 when she had her surgeries and she understood quite a bit. Another neat thing was that they gave Paige some fruit flavored chap-stick to rub on the inside of her mask so that the "funny" air that they used to put her to sleep wouldn't smell so medicine-like.

I also bought a play doctor kit and picked up some real latex gloves and mask so that we could play doctor and bascially act out what she would encounter on her surgery day. Anything you can do to make Molly feel a little bit in control of the situation is great. Books are a great suggestion too!

Also, another idea for after her surgery (in case she has additional surgeries) is to make a photo album of everything. I took pictures of Paige with her nurses and doctors as well as Paige in the car on the way there, in the waiting room, recovery after surgery, etc. It really helped Paige to process and remember her doctor and all of the people who helped her to be able to see better. I did it all online using Kodak and I was able to put captions under the pictures to make it really nice for her. I also used it again this year in Paige's kindergarten class as a way of explaining BPES and why Paige's eyes looked a little bit diffrent. Paige had been getting some questions from her classmates so the teacher allowed me to come in to speak to the class. Paige was so proud to share her photo album.

I hope some of the things I did inspire you. Explaining it all can be overwhelming to another adult so it's even more so with a 3 year old! Best of luck and I know she will do great!

North Carolina, USA

From: wendy673755 <haribo.molly@ btinternet. com>blepharophimosisSent: Sat, January 2, 2010 4:31:20 PMSubject: blepharophimosis my daughter

my daughter molly is having the slings putting in on the 18th jan im a little worried about it as its her 1st op and i dont know how to tell molly whats happening as she is only 3, any ideas would be helpfull, also i had another baby girl phoebe 7 weeks ago i was a little worried that she would have bpes but she has not..

[Guest guest]

Hello. My son had 3 surgeries in Boston - one sling. Everyone who waited with us in the pre-op was great and they had lots of toys there.

I think it was harder actually on me. He came out of surgery very angry as an effect of the anesthesia which I wasn't prepared for. It lasted about an hour. I was worried that he was uncomfortable based on his reaction but he was not. Just a head's up.

He was just diagnosed with BPES. He was also born with cardiac issues, a cleft palate, hypotonia and some developmental delays. Does anyone share these other characteristics along with BPES?

Thanks for any feedback and good luck.

From: Harvey <happyappykd>Subject: Re: blepharophimosis my daughterblepharophimosisDate: Friday, 8 January, 2010, 5:13

Hi ,

Before my daughter, Paige, had her surgeries I asked the nurse if we could could take a tour of the clinic. The nurse showed us the pre-op rooms, the special "pajamas" she would wear for her surgery, the mask she would wear to help her fall asleep (and the stickers she could have to decorate it), the juice and crackers she could have when she woke up, and the post-op room where we would be with her when she woke up. She explained exactly what would happen and that she would sleep through the entire procedure. Paige was 4 when she had her surgeries and she understood quite a bit. Another neat thing was that they gave Paige some fruit flavored chap-stick to rub on the inside of her mask so that the "funny" air that they used to put her to sleep wouldn't smell so medicine-like.

I also bought a play doctor kit and picked up some real latex gloves and mask so that we could play doctor and bascially act out what she would encounter on her surgery day. Anything you can do to make Molly feel a little bit in control of the situation is great. Books are a great suggestion too!

Also, another idea for after her surgery (in case she has additional surgeries) is to make a photo album of everything. I took pictures of Paige with her nurses and doctors as well as Paige in the car on the way there, in the waiting room, recovery after surgery, etc. It really helped Paige to process and remember her doctor and all of the people who helped her to be able to see better. I did it all online using Kodak and I was able to put captions under the pictures to make it really nice for her. I also used it again this year in Paige's kindergarten class as a way of explaining BPES and why Paige's eyes looked a little bit diffrent. Paige had been getting some questions from her classmates so the teacher allowed me to come in to speak to the class. Paige was so proud to share her photo album.

I hope some of the things I did inspire you. Explaining it all can be overwhelming to another adult so it's even more so with a 3 year old! Best of luck and I know she will do great!

North Carolina, USA

From: wendy673755 <haribo.molly@ btinternet. com>blepharophimosisSent: Sat, January 2, 2010 4:31:20 PMSubject: blepharophimosis my daughter

my daughter molly is having the slings putting in on the 18th jan im a little worried about it as its her 1st op and i dont know how to tell molly whats happening as she is only 3, any ideas would be helpfull, also i had another baby girl phoebe 7 weeks ago i was a little worried that she would have bpes but she has not..

[Guest guest]

Hi Sandy

I know a person who has a child with similar issues as your

little boy.  I wrote to her, and she said she would get in touch with you at

the end of the week. She is very knowledgeable, and I am sure that you’ll like

being in touch with her.

Only last week I was talking Leah, mother of Abbie, who told me

that when Abbie came out of surgery, she looked a bit puzzled and indignant,

and showed little signs of discomfort.

If you are wanting to know more about BPES, and syndromes that

are very similar to BPES, it might be an idea to look here:

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=bpes

Scroll down to the section called:  Differential Diagnosis

I am not in any way suggesting that you will be able to work out

if your son has any of the syndromes by looking at the list.  The best way to

use the information is to say to your doctor that you know that there are a

variety of known syndromes, and could they tell if you any of these are

applicable. Think of it as a way of initiating some investigations.

This group has about 800 members.  Some are very active, and

describe their situation in detail. Other’s prefer to take a back seat

approach. This is what is so wonderful about the group … we are from all over

the world, different backgrounds, and can be part of the same community.

Having said that, I think it would be fair to summarise by

saying that most (but definitely not all) of the people here have BPES without

any major extra issues.  My guess is that less than a quarter have had genetic testing

to confirm the diagnosis.  However, there are other mom’s like yourself, and I

am sure that some will be in touch either via the message board, or directly.

I hope that this helps

Shireen

London, England

It is freezing here … I bet it is pretty cold in Boston too J  ..

A lovely city, I was there Nov 08 when the power went.

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of sandy redgate

Sent: 10 January 2010 14:04

blepharophimosis

Subject: Re: blepharophimosis my daughter

Hello. My son had 3 surgeries in Boston - one sling.

Everyone who waited with us in the pre-op was great and they had lots of toys

there.

I think it was harder actually on me. He came out of

surgery very angry as an effect of the anesthesia which I wasn't prepared

for. It lasted about an hour. I was worried that he was uncomfortable based

on his reaction but he was not. Just a head's up.

He was just diagnosed with BPES. He was also born with

cardiac issues, a cleft palate, hypotonia and some developmental delays. Does

anyone share these other characteristics along with BPES?

Thanks for any feedback and good luck.

--- On Sat, 1/9/10, WENDY SCOT <haribo.molly@...>

wrote:

From: WENDY SCOT <haribo.molly@...>

Subject: Re: blepharophimosis my daughter

blepharophimosis

Date: Saturday, January 9, 2010, 2:58 PM

thank you for your email your ideas of explaining mollys

op are really helpful i wouldnt of thought of these ideas myself will let

you know how things go xx

--- On Fri, 8/1/10, Harvey <happyappykd>

wrote:

From: Harvey <happyappykd>

Subject: Re: blepharophimosis my daughter

blepharophimosis

Date: Friday, 8 January, 2010, 5:13

Hi ,

Before my daughter, Paige, had her surgeries I

asked the nurse if we could could take a tour of the clinic. The

nurse showed us the pre-op rooms, the special " pajamas " she would

wear for her surgery, the mask she would wear to help her fall asleep (and

the stickers she could have to decorate it), the juice and crackers she

could have when she woke up, and the post-op room where we would be with

her when she woke up. She explained exactly what would

happen and that she would sleep through the entire procedure.

Paige was 4 when she had her surgeries and she understood quite a

bit. Another neat thing was that they gave Paige some fruit flavored

chap-stick to rub on the inside of her mask so that the " funny "

air that they used to put her to sleep wouldn't smell so medicine-like.

I also bought a play doctor kit and picked up some real

latex gloves and mask so that we could play doctor and bascially act out

what she would encounter on her surgery day. Anything you can do to

make Molly feel a little bit in control of the situation is great.

Books are a great suggestion too!

Also, another idea for after her surgery (in case she

has additional surgeries) is to make a photo album of everything. I

took pictures of Paige with her nurses and doctors as well as Paige in

the car on the way there, in the waiting room, recovery after surgery,

etc. It really helped Paige to process and remember her

doctor and all of the people who helped her to be able to see better.

I did it all online using Kodak and I was able to put captions under

the pictures to make it really nice for her. I also used it

again this year in Paige's kindergarten class as a way of explaining BPES

and why Paige's eyes looked a little bit diffrent. Paige had been

getting some questions from her classmates so the teacher allowed me to

come in to speak to the class. Paige was so proud to share her photo

album.

I hope some of the things I did inspire you.

Explaining it all can be overwhelming to another adult so it's even more so

with a 3 year old! Best of luck and I know she will do great!

North Carolina, USA

From: wendy673755

<haribo.molly@ btinternet. com>

blepharophimosis

Sent: Sat, January 2, 2010 4:31:20 PM

Subject: blepharophimosis my daughter

my daughter molly is having

the slings putting in on the 18th jan im a little worried about it as its

her 1st op and i dont know how to tell molly whats happening as she is only

3, any ideas would be helpfull, also i had another baby girl phoebe 7 weeks

ago i was a little worried that she would have bpes but she has not..