New to the group

March 17, 2005

Leanne,

I have a 9.5 month old son . He does not have Bpes. I was

worried due to the family history. My wife wants a second, but he

was also born with a slightly fused Aortic heart valve and it's 4x

more likely in the next one. So we're not sure what the future will

bring. The photos section seems to be down on this site at the

moment. Please verify if you can access them.

Rob

>

> Blepharophimosis runs in my family. I am the 4th generation.

Until

> now my family just told me there was " asian " blood in the family.

> My mom had surgery for the condition back in the 60's and had poor

> results. I am 32 now and beginnig to suffer neck and forhead

strain

> from holding my head up so I can see. I'm scared to death about

the

> surgery. I went to a Dr. in CA when I lived there last year and

was

> nervous about having him perform the procedure. He

> mentioned " harvested " tissue. I'm not sure what to do now. How

> common is this procedure? Sorry for the ramble. It's rather

> emotional for me looking at the photos. I thought my family was

the

> only one. God Bless you all.

>

> Rob Hall

> Austin TX

>

March 17, 2005

Hello other Rob,

Welcome to the group.

> Blepharophimosis runs in my family. I am the 4th generation. Until

> now my family just told me there was " asian " blood in the family.

> My mom had surgery for the condition back in the 60's and had poor

> results.

The correction techniques were still being worked out in the 60s, so

maybe that's not so surprising. Since the mid-60s, the corrective

techniques have become pretty well established, and more choices are

available in some cases (e.g. materials for the ptosis repair), and

results are generally pretty good. Still requires a competent surgeon,

of course, and they can vary in quality quite a bit, so it pays to shop

around.

> I am 32 now and beginnig to suffer neck and forhead strain

> from holding my head up so I can see. I'm scared to death about the

> surgery.

Is there something in particular about this surgery that worries you? I

assuming you're referring to the fascia lata sling (a.k.a. frontalis

suspension) for ptosis repair? Or are you also referring to the other

ops that usually correct BPEI, such as the canthoplasty?

> I went to a Dr. in CA when I lived there last year and was

> nervous about having him perform the procedure.

How come? Had he not done it before? A nervous tic in his right hand,

perhaps? (Just kidding :-)

> He mentioned " harvested " tissue.

He's referring to fascia lata tissue, either from your own thigh or

someone else's (which is what I have). These days, some surgeons use

artificial substances, such as silicon, sometimes.

> I'm not sure what to do now. How

> common is this procedure?

This (ptosis repair, I assume?) is a relatively common procedure for

BPEI folks, and is also done for other conditions as well, so it's more

common overall than the other main BPEI operations. But, that being

said, it's probably not common in the general population, so make sure

you find a surgeon that's done lots of these before. Not all of them have.

Some surgeons do the ptosis and bleph repair at the same time, some do

one before t'other or just one. Depends on the patient's age and the

severity of their BPEI, etc.

> Rob Hall

> Austin TX

Rob

Sydney NSW

March 17, 2005

Rob

Welcome to the group. I am amazed that you didn't know you had either

ptosis or BPES, and that you didn't have surgery. Your BPES must be

mild, don't worry about surgery. My daughter is almost 8 months and

she had ptosis surgery and did great and so will you. I think I will

probably have some more surgery, because since my pregnancy I see my

right eye dropping a bit. Find a doctor you trust. You will be okay.

I didn't know I had BPES, I knew I had surgeries and I knew it was

genetic and I knew my daughter could get it, but I never knew the

word " blepharophimosis " until my baby was born and diagnosed. Neither

did my famiy and my dad and grandfather have it.

It doesn't really matter what you call it, the treatment is the same.

best wishes to you

Beth

--- In blepharophimosis , Rob <r.watson@b...>

wrote:

> Hello other Rob,

>

> Welcome to the group.

>

> > Blepharophimosis runs in my family. I am the 4th generation.

Until

> > now my family just told me there was " asian " blood in the

family.

> > My mom had surgery for the condition back in the 60's and had

poor

> > results.

>

> The correction techniques were still being worked out in the 60s,

so

> maybe that's not so surprising. Since the mid-60s, the corrective

> techniques have become pretty well established, and more choices

are

> available in some cases (e.g. materials for the ptosis repair), and

> results are generally pretty good. Still requires a competent

surgeon,

> of course, and they can vary in quality quite a bit, so it pays to

shop

> around.

>

> > I am 32 now and beginnig to suffer neck and forhead strain

> > from holding my head up so I can see. I'm scared to death about

the

> > surgery.

>

> Is there something in particular about this surgery that worries

you? I

> assuming you're referring to the fascia lata sling (a.k.a.

frontalis

> suspension) for ptosis repair? Or are you also referring to the

other

> ops that usually correct BPEI, such as the canthoplasty?

>

> > I went to a Dr. in CA when I lived there last year and was

> > nervous about having him perform the procedure.

>

> How come? Had he not done it before? A nervous tic in his right

hand,

> perhaps? (Just kidding :-)

>

> > He mentioned " harvested " tissue.

>

> He's referring to fascia lata tissue, either from your own thigh or

> someone else's (which is what I have). These days, some surgeons

use

> artificial substances, such as silicon, sometimes.

>

> > I'm not sure what to do now. How

> > common is this procedure?

>

> This (ptosis repair, I assume?) is a relatively common procedure

for

> BPEI folks, and is also done for other conditions as well, so it's

more

> common overall than the other main BPEI operations. But, that being

> said, it's probably not common in the general population, so make

sure

> you find a surgeon that's done lots of these before. Not all of

them have.

>

> Some surgeons do the ptosis and bleph repair at the same time, some

do

> one before t'other or just one. Depends on the patient's age and

the

> severity of their BPEI, etc.

>

> > Rob Hall

> > Austin TX

>

> Rob

> Sydney NSW

March 17, 2005

I agree fully with you Sharon. Rob I do advice you to see e couple of doctors before you decide.

Dolph

Re: blepharophimosis new to the group

Rob, I would check with several surgeons before doing anything. My kids operations were completely painless and they recovered so well. It was so worth having done. In the long run you will be much more comfortable than you are now. Not all surgeons with do the "harvested tissue" some will lift and open whatyou have now and it does help.......I am from NY ....and don;t know anyone in your state good luck in your search. You may want to call some of the major hospitals and ask for a reference. Sharon rob hall <rnhall180@...> wrote: Blepharophimosis runs in my family. I am the 4th generation. Until now my family just told me there was "asian" blood in the family. My mom had surgery for the condition back in the 60's and had poor results. I am 32 now and beginnig to suffer neck and forhead strain from holding my head up so I can see. I'm scared to death about the surgery. I went to a Dr. in CA when I lived there last year and was nervous about having him perform the procedure. He mentioned "harvested" tissue. I'm not sure what to do now. How common is this procedure? Sorry for the ramble. It's rather emotional for me looking at the photos. I thought my family was the only one. God Bless you all.Rob Hall Austin TX

March 17, 2005

Thanks Rob,

I'm so overwhelmed with this info! I never knew that anyone else looked like me. I've only seen one other person in a movie (Crockadile Dundee...it's the crock wrestling scene inthe bar.) I grew up without insurance, and my mom would not support surgery due to her experience. Since this is not widespread, we had no info other than Ptosis as a diagnosis. I'm currently on the hunt for a surgeon in TX. Kindest Regards,

Rob Hall

Austin TX

Re: blepharophimosis new to the group

Hello other Rob,Welcome to the group.> Blepharophimosis runs in my family. I am the 4th generation. Until > now my family just told me there was "asian" blood in the family. > My mom had surgery for the condition back in the 60's and had poor > results.The correction techniques were still being worked out in the 60s, so maybe that's not so surprising. Since the mid-60s, the corrective techniques have become pretty well established, and more choices are available in some cases (e.g. materials for the ptosis repair), and results are generally pretty good. Still requires a competent surgeon, of course, and they can vary in quality quite a bit, so it pays to shop around.> I am 32 now and beginnig to suffer neck and forhead strain > from holding my head up so I can see. I'm scared to death about the > surgery.Is there something in particular about this surgery that worries you? I assuming you're referring to the fascia lata sling (a.k.a. frontalis suspension) for ptosis repair? Or are you also referring to the other ops that usually correct BPEI, such as the canthoplasty?> I went to a Dr. in CA when I lived there last year and was > nervous about having him perform the procedure.How come? Had he not done it before? A nervous tic in his right hand, perhaps? (Just kidding :-)> He mentioned "harvested" tissue.He's referring to fascia lata tissue, either from your own thigh or someone else's (which is what I have). These days, some surgeons use artificial substances, such as silicon, sometimes.> I'm not sure what to do now. How > common is this procedure?This (ptosis repair, I assume?) is a relatively common procedure for BPEI folks, and is also done for other conditions as well, so it's more common overall than the other main BPEI operations. But, that being said, it's probably not common in the general population, so make sure you find a surgeon that's done lots of these before. Not all of them have.Some surgeons do the ptosis and bleph repair at the same time, some do one before t'other or just one. Depends on the patient's age and the severity of their BPEI, etc.> Rob Hall > Austin TX Rob Sydney NSW

March 17, 2005

Beth,

My case is typical, I've included a photo from Dec 04. My search for a Dr. in Tx continues. I want to find someone who has done this, and not some hack. As far as knowing about Ptosis, that is the only thing that i did know. No one ever talked of correcting it. I just went throug hell during my school days with all the teasing. I'm glad that surgery is available. Kids can be so cruel. Thank you again, and keep in touch. I have a 9.5 month old son and he shows no signs of BPES. I've included his photo as well. I tried to e-mail the Dr. in CA that was doing hte research and his address is invalid...any leads on him would be appreciated.

Thanks,

Rob Hall

blepharophimosis Re: new to the group

RobWelcome to the group. I am amazed that you didn't know you had either ptosis or BPES, and that you didn't have surgery. Your BPES must be mild, don't worry about surgery. My daughter is almost 8 months and she had ptosis surgery and did great and so will you. I think I will probably have some more surgery, because since my pregnancy I see my right eye dropping a bit. Find a doctor you trust. You will be okay.I didn't know I had BPES, I knew I had surgeries and I knew it was genetic and I knew my daughter could get it, but I never knew the word "blepharophimosis" until my baby was born and diagnosed. Neither did my famiy and my dad and grandfather have it. It doesn't really matter what you call it, the treatment is the same.best wishes to youBeth> Hello other Rob,> > Welcome to the group.> > > Blepharophimosis runs in my family. I am the 4th generation. Until > > now my family just told me there was "asian" blood in the family. > > My mom had surgery for the condition back in the 60's and had poor > > results.> > The correction techniques were still being worked out in the 60s, so > maybe that's not so surprising. Since the mid-60s, the corrective > techniques have become pretty well established, and more choices are > available in some cases (e.g. materials for the ptosis repair), and > results are generally pretty good. Still requires a competent surgeon, > of course, and they can vary in quality quite a bit, so it pays to shop > around.> > > I am 32 now and beginnig to suffer neck and forhead strain > > from holding my head up so I can see. I'm scared to death about the > > surgery.> > Is there something in particular about this surgery that worries you? I > assuming you're referring to the fascia lata sling (a.k.a. frontalis > suspension) for ptosis repair? Or are you also referring to the other > ops that usually correct BPEI, such as the canthoplasty?> > > I went to a Dr. in CA when I lived there last year and was > > nervous about having him perform the procedure.> > How come? Had he not done it before? A nervous tic in his right hand, > perhaps? (Just kidding :-)> > > He mentioned "harvested" tissue.> > He's referring to fascia lata tissue, either from your own thigh or > someone else's (which is what I have). These days, some surgeons use > artificial substances, such as silicon, sometimes.> > > I'm not sure what to do now. How > > common is this procedure?> > This (ptosis repair, I assume?) is a relatively common procedure for > BPEI folks, and is also done for other conditions as well, so it's more > common overall than the other main BPEI operations. But, that being > said, it's probably not common in the general population, so make sure > you find a surgeon that's done lots of these before. Not all of them have.> > Some surgeons do the ptosis and bleph repair at the same time, some do > one before t'other or just one. Depends on the patient's age and the > severity of their BPEI, etc.> > > Rob Hall > > Austin TX > > Rob > Sydney NSW

March 18, 2005

rnhall180@... wrote:

> Thanks Rob, I'm so overwhelmed with this info!

There's a lot to learn, and info is had to come by (but getting easier

these days). And medical terminology - especially around complex, rare

conditions like BPEI - is very much a foreign language (mostly Latin,

I've found), which doesn't help.

> I never knew that

> anyone else looked like me.

That's how rare it is. Likewise, apart from some folks in this group,

I've never met another BPEI-enhanced person by accident, either (in 44

years).

> I've only seen one other person in a

> movie (Crockadile Dundee...it's the crock wrestling scene inthe bar.)

I never noticed that. Oh great. Now I feel compelled to hire Croc Dundee

to play " spot the BPEI bloke " - I was hoping I'd never have to see that

film again. ;-) That's a cruel trick: " Did you notice the BPEI person in

<INSERT NAME OF TERRIBLE MOVIE HERE>? "

> I'm currently on the hunt for a

> surgeon in TX.

Good luck. Be prepared to cast the net wider than TX if necesary.

Rob W

March 18, 2005

Hi again Rob:)

You guys look great:) what a little cutie your son is to:) It just shows that if you have bleph that it doesn't mean you will pass it on to your babies:)

So what will happen with his heart problem? or is it not a problem now? We hope he is fine:)

I can't remember if you had said, but are you the 1st in your family to have bleph? If not, who else has it?

Talk soon....Leanne

-- blepharophimosis Re: new to the group

Leanne,

I have a 9.5 month old son . He does not have Bpes. I was

worried due to the family history. My wife wants a second, but he

was also born with a slightly fused Aortic heart valve and it's 4x

more likely in the next one. So we're not sure what the future will

bring. The photos section seems to be down on this site at the

moment. Please verify if you can access them.

Rob

>

> Blepharophimosis runs in my family. I am the 4th generation.

Until

> now my family just told me there was "asian" blood in the family.

> My mom had surgery for the condition back in the 60's and had poor

> results. I am 32 now and beginnig to suffer neck and forhead

strain

> from holding my head up so I can see. I'm scared to death about

the

> surgery. I went to a Dr. in CA when I lived there last year and

was

> nervous about having him perform the procedure. He

> mentioned "harvested" tissue. I'm not sure what to do now. How

> common is this procedure? Sorry for the ramble. It's rather

> emotional for me looking at the photos. I thought my family was

the

> only one. God Bless you all.

>

> Rob Hall

> Austin TX

>

June 8, 2005

Good morning, ! I'm glad you found this group and I hope you find it helpful! It sounds like you are doing a lot for Kiernan already! You have him at a center and he is receiving OT. We also gave our son private speech therapy. The first intervention we gave our son was the gluten free, casein free diet, only because the pediatric neurologist who diagnosed our son suggested we try. I had heard of it before, but wasn't going to try it because there wasn't enough scientific research in the literature on it. But because a respected neur at a respected hosp suggested we try, we did, and 3 years later, he's still on it. It definitely was beneficial for him.

What our family found most helpful was educating ourselves on autism and learning about the most recent advances in the treatment. One seminar that we went to was pivotal for our family and I'd recommend it to any parent with a child on the spectrum is "Positive Behavior Support." It's held once every two years in March. We went to the first ever PBS seminar in March 2003 and it changed our family for the better! PBS is a more humane form of ABA than what you might find "out there" and focuses on understanding the child and communicating with the child.

Also, we took a 9 month class called "The S.U.C.C.E.S.S. Approach." This approach was created by a SLP and an OT. It teaches about different models that explain why a child might be doing what he's doing and then how to help him do/learn/progress to the next step. As part of the class, every student videotaped their target child in the beginning and at the end of class, and it was amazing to see how far every child had developed. Once again, this class supported my husband's and my determination to learn to understand and communicate effectively with our son. At the end of this class, I felt like my son's mother truly, although this was not a stated objective of the class!! .

, welcome to the group, and when you find an intervention that works, please share it with the group!! We want to hear about other's successes and cheer our little ones (or not so little ones) along! I'm sure other parents will share what they have done. One area that we haven't explored completely, but will once we have time and money is biomedical interventions. Other parents on this list have explored it more fully than us.

I'll be leaving shortly for our family vacation! Florida is in our horizon!

Marotta

----- Original Message -----

From: If you want to know.. Ask!

Sent: Tuesday, June 07, 2005 10:44 PM

Subject: [ ] new to the group

Hello all.. just found this group and joined so I thought I would introduce myself.My name is and I am a proud mom of a 3 yr old boy, Kiernan, who has been diagnosed with Austism Spectrum Disorder w/ADHD... I also have a beautiful little girl, igh, who is a 4 yr old Diva and not afraid to let you know it..Kiernan was diagnosed back in September of last year and attended Middleburg Early Education Center.. he'll be going back there for the summer session as well as part time in the fall along with his classes here in Olmsted Falls at their special preschool. He's just started seeing an Occupational Therapist over at Lifeworks of Southwest General Hospital in Middleburg Heights.. and we are more or less intersted in hearing from other parents about different things they have done at home.. he gets all this outside help.. but we are clueless as to what to do for him here... Well I look forward to getting to know you all.. Hugs! JOlmsted Falls

June 8, 2005

Hi,

My name is Therese and I'm mom to a 4 yo PPD-NOS and ADHD. I'm attending seminars this summer to teach parents how to handle and teach their children. The first one was amazing and I wanted everyone to know that they still have scholarships available and positions open. I also recieved great resources for teaching supplies and community help. I found them through their post on this sight, just wanted everyone to know how great it's been. I included the original post I answered, and encourage people to call. is a wonderful person and the phone number below goes to her cell if she's out of state or just office. So she's easy to get a hold of.

Thanks,

Therese

HI EVERYONE...MY NAME IS GINA ESCORPIZO AND I AM FROM THE GLOBAL AUTISM PROJECT. WE ARE AN ORGANIZATION FROM LOS ANGELES CALIFORNIA THAT IS COMMITTED TO PARENT EDUCATION. THIS SATURDAY IS THE START OF OUR PARENT TRAINING WORKSHOPS, FROM OUR FIRST SERIES, IT IS NOT FILLED AND THERE IS STILL PLENTY OF SCHOLARSHIP FUNDING AVAILABLE FOR 50 FAMILIES TO ATTEND FOR FREE! I KNOW IT IS SHORT NOTICE BUT IT IS THE START OF A CURRICULUM WITH LOTS OF INFORMATION ON BEHAVIORAL PARENTING. OUR ORGANIZATION IS UNIQUE IN THAT WE PRODUCE A HIGH QUALITY SERVICE BUT DECREASE COSTS WITH CORPORATE SPONSORS AND ALL OF OUR FEES ARE ON A SLIDING SCALE DEPENDING ON A FAMILIES NEEDS.IT IS REALLY IMPORTANT THAT THIS FIRST WORKSHOP IS FILLED SO THAT THE SCHOLARSHIP MONEY DOES NOT GO TO WASTE! I KNOW THE TOPIC OF THE FIRST WORKSHOP SOUNDS LIKE THINGS YOU PROBABLY KNOW BUT IT IS

IN DEPTH AND WORTH YOUR TIME.OUR WORKSHOPS CONSIST OF A:1) LECTURE2) SMALL GROUP EXERCISES3) INDIVIDUAL EXERCISES4) HOMEWORK FOR PRACTICAL APPLICATION5) A MANUAL/WORKBOOK FULL OF INFORMATION AND RESOURCES.TOPICS:JUNE 4 THE REASONS WHY: THIS GIVES YOU THE INFORMATION ON UNDERSTANDING THE SYMPTOMS YOUR CHILD DISPLAYS AND HOW TO ADDRESS THEM VIA PROGRAMS OR BEHAVIOR MANAGEMENT. WE WILL GO INTO DOMAINS OF SKILLS AND PREREQUISITES ON HOW TO DEVELOP PROGRAMS, LIKE CONSULTANTS.JUNE 18 EFFECTIVE BEHAVIOR MANAGEMENT IN THE HOME AND COMMUNITY: THIS WORKSHOP IS DEDICATED TO PARENTS UNDERSTANDING BEHAVIORS AND HOW TO DEVELOP EFFECTIVE BEHAVIOR INTERVENTION PLANS THAT ADDRESS YOUR LIFESTYLE (INCLUDING SIBLINGS).JULY 2 HOW TO ELICIT COMMUNICATION IN THE HOME AND COMMUNITY: THIS LECTURE COVERS A MULTITUDE OF LANGUAGE AND COMMUNICATION TOPICS USING THE PRINCIPLES OF VERBAL

BEHAVIOR. WE WILL BE GOING OVER STRATEGIES AND INTERVENTIONS TO PROMOTE COMMUNICATION.JULY 26 GENERALIZATION AND THE NATURAL ENVIRONMENT: OUR TARGET AUDIENCE IS FATHERS, BUT THE INFORMATION IS USEFUL FOR BOTH PARENTS. THIS WILL COVER STRATEGIES TO UTILIZE THE NATURAL ENVIRONMENT AS A LEARNING ENVIRONMENT.TIMES: 9-2WHERE: CLEVELAND STATE UNIVERSITY.FOR MORE INFORMATION OR TO PUT YOURSELF ON THE REGISTRATION LIST PLEASE CALL ME AT 626.200.6258 OR 1.877.731.5600 EXT.2YOU CAN CALL ME UP TO THE TIME OF THE FIRST TRAINING TO GET REGISTERED!!!I CAN ALSO SEND YOU INFORMATION VIA EMAIL OR FAX. GESCORPIZO@...HOPE TO HEAR FROM YOU.__________________________________________________

June 8, 2005

,

Our daughter also attends Middleburg, will be there for the summer

and for the upcoming school year...5 days a week. We also go to

private speech, OT, and PT and currently have in place a verbal

behavior approach to ABA. We also follow the gfcf diet as well. We

utilize the autism scholarship to pay for the school, speech, and

our ABA program (consultant fees and I just figured out how to get

reiumbursed for tutors as well). I find it interesting that your

son will be attending both Olmstead schools and Middleburg....was

this by your choice? Just curious because there is rumor the

scholarship will go up to $20,000 this year and that would purchase

a lot of services for your son.

There is a conferance at Landerhaven the third week of June. Vince

Carbone is one of the primary speakers....if you can afford it and

have the time I would highly recommend going to hear him. It's not

the same as his two day workshop, however he is very insightful,

particularly for parents of preschoolers.

Hope some of this helps...if you have any questions please feel free

to email me.

Patty

June 9, 2005

Hi ,

Welcome to the group. I joined alittle over a month ago and I have already learned so much. I have met parents here that are full of knowledge and helpful hints that we are using in our daily routine. Our son Dylan just turned 5 and will be going to kindergarten next year. He also will be attending MEEC this summer. He has gone there since he was 2. I really like the teachers and the program there.

It sounds like you are on a great path for Kiernan but if there is anything I can help you with please let me know as I am sure everyone feels the same way.

"If you want to know.. Ask!" <mystique2574@...> wrote:

Hello all.. just found this group and joined so I thought I would introduce myself.My name is and I am a proud mom of a 3 yr old boy, Kiernan, who has been diagnosed with Austism Spectrum Disorder w/ADHD... I also have a beautiful little girl, igh, who is a 4 yr old Diva and not afraid to let you know it..Kiernan was diagnosed back in September of last year and attended Middleburg Early Education Center.. he'll be going back there for the summer session as well as part time in the fall along with his classes here in Olmsted Falls at their special preschool. He's just started seeing an Occupational Therapist over at Lifeworks of Southwest General Hospital in Middleburg Heights.. and we are more or less intersted in hearing from other parents about different things they have done at home.. he

gets all this outside help.. but we are clueless as to what to do for him here... Well I look forward to getting to know you all.. Hugs! JOlmsted Falls

Discover Have fun online with music videos, cool games, IM more. Check it out!

March 27, 2006

Diet is one of the many things which impacts on gallbladder health. I

would say that you and your husband may share the same diet - and thus are

prone to some of the same sicknesses or malfunctions of your health.

--- <sulrich20@...> wrote:

I have never heard of a husband and wife both at the same time

> developing GB problems. Has anyone ever heard of this and/or any

> suggestions/ideas if there could be an underlying cause of why this

> happened

> Sherry

>

January 28, 2007

Hi Abbie Great to read your message Abbie and also see the photos you posted. You looked absolutely amazing on your wedding day. It is great to hear that BPES has not hindered your life in any way because we have a two year old daughter who has BPES and the first in the family to have it. She is our first child too. I am aware that if a girl is born with BPES she may have problems conceiving depending on whether type I or II. We need to have Holly tested before she reaches puberty so we can inform her when the time is right. There is a few other girls that are a little older in this forum that I am sure can advise you on what you can do for treatment etc. All the very best to you, keep in touch. Where abouts are you in the UK? We live in Hampshire. Thanks again for posting your pictures and message. Take

care Lucy, Hampshire UKabbie_gog <abbie_gog@...> wrote: Hi,just wanted to introduce myself, I'm 31 and have BPES. I had surgery when I was 18, which was very successful. I've read the entries from parents in here, with children with BPES. I would like you to know that having this condition really has not had a negative impact on my life, and after surgery my appearence and confidence improved significantly, I have put some pics up for you to look atI was wondering if

any one has had any experiencies of premature ovarian failure, (female infirtility) associated with BPES? I have been diagnosed with this recently. Is any one aware of any treatment options? I am trying to find out as much as I can about this, so any information you might have, could be really helpful,many thanks,Abbie

New is the ultimate force in competitive emailing. Find out more at the Championships. Plus: play games and win prizes.

January 30, 2007

--- >Hi Lucy,

thanks for your message. I think I am going to confuse every body,

because I have made two entries! The first message wasn't posted, so

I added another one, then the original one got posted, sorry to

confuse! I'm in Birmingham by the way. I'm trying IVF at the moment,

but am not very hopeful it will work. I am guessing we will have to

go down the egg donation route. I need to look into this some more

before we decide that this is an option. I feel quite angry with my

doctors, in particular the team who did my eye surgery at

Moorfields. I don't understand why they didn't tell me or my parents

that there might be a risk of infertility with BPES.

I would really like to stress to you, with regards to Holly, that

apart from the fertility issue, my eyes have had very little impact

on my life, and I'm sure it will be the same for Holly. I am happily

married, have a successful career, great friends etc. I have had

surgery, which was difficult, but I recovered very quickly. It's so

good to know me and my sister are the only people in the world who

have this!

Thank you for your comments

Abbie

> Hi Abbie

>

> Great to read your message Abbie and also see the photos you

posted. You looked absolutely amazing on your wedding day. It is

great to hear that BPES has not hindered your life in any way because

we have a two year old daughter who has BPES and the first in the

family to have it. She is our first child too. I am aware that if a

girl is born with BPES she may have problems conceiving depending on

whether type I or II. We need to have Holly tested before she

reaches puberty so we can inform her when the time is right.

> There is a few other girls that are a little older in this forum

that I am sure can advise you on what you can do for treatment etc.

All the very best to you, keep in touch.

> Where abouts are you in the UK? We live in Hampshire.

>

> Thanks again for posting your pictures and message.

>

> Take care

> Lucy, Hampshire UK

>

> abbie_gog <abbie_gog@...> wrote:

> Hi,

> just wanted to introduce myself, I'm 31 and have BPES. I had

surgery

> when I was 18, which was very successful. I've read the entries

from

> parents in here, with children with BPES. I would like you to know

> that having this condition really has not had a negative impact on

my

> life, and after surgery my appearence and confidence improved

> significantly, I have put some pics up for you to look at

>

> I was wondering if any one has had any experiencies of premature

> ovarian failure, (female infirtility) associated with BPES? I have

been

> diagnosed with this recently. Is any one aware of any treatment

> options? I am trying to find out as much as I can about this, so

any

> information you might have, could be really helpful,

> many thanks,

> Abbie

>

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

> New is the ultimate force in competitive emailing.

Find out more at the Championships. Plus: play games and

win prizes.

>

February 1, 2007

Hi Abbie Thanks for your reply Abbie, great to hear from you. Thinking about it you are right, Moorfields did not say anything to us about probems with fertility etc it was through this BPES forum that we found out. I suppose your parents were not fortunate enough to have a support network and just relied on the 'professionals' for all of the information!! Thanks for your kinds words about the future for Holly, I will keep these entries and photos to show Holly when she is older so she understands all about BPES and knows there are lots of other people like herself, even an Actor!!! Thanks Take care and all the best with IVF - keep me posted on how you get on Love Lucyxxxabbie_gog <abbie_gog@...> wrote: --- >Hi Lucy,thanks for your message. I think I am going to confuse every body, because I have made two entries! The first message wasn't posted, so I added another one, then the original one got posted, sorry to confuse! I'm in Birmingham by the way. I'm trying IVF at the moment, but am not very hopeful it will work. I am guessing we will have to go down the egg donation route. I need to look into this some more before we decide that this is an option. I feel quite angry with my doctors, in particular the team who did my eye surgery at Moorfields. I don't understand why they didn't

tell me or my parents that there might be a risk of infertility with BPES. I would really like to stress to you, with regards to Holly, that apart from the fertility issue, my eyes have had very little impact on my life, and I'm sure it will be the same for Holly. I am happily married, have a successful career, great friends etc. I have had surgery, which was difficult, but I recovered very quickly. It's so good to know me and my sister are the only people in the world who have this! Thank you for your commentsAbbie> Hi Abbie> > Great to read your message Abbie and also see the photos you posted. You looked absolutely amazing on your wedding day. It is great to hear that BPES has not hindered your life in any way because we have a two year old daughter who has BPES and the first in the family to have it. She is our first child too. I am aware that if a girl is born with BPES she

may have problems conceiving depending on whether type I or II. We need to have Holly tested before she reaches puberty so we can inform her when the time is right.> There is a few other girls that are a little older in this forum that I am sure can advise you on what you can do for treatment etc. All the very best to you, keep in touch.> Where abouts are you in the UK? We live in Hampshire.> > Thanks again for posting your pictures and message.> > Take care> Lucy, Hampshire UK> > abbie_gog <abbie_gog@...> wrote:> Hi,> just wanted to introduce myself, I'm 31 and have BPES. I had surgery > when I was 18, which was very successful. I've read the entries from > parents in here, with children with BPES. I would like you to know > that having this condition really has not had a negative impact on my > life, and after surgery my

appearence and confidence improved > significantly, I have put some pics up for you to look at> > I was wondering if any one has had any experiencies of premature > ovarian failure, (female infirtility) associated with BPES? I have been > diagnosed with this recently. Is any one aware of any treatment > options? I am trying to find out as much as I can about this, so any > information you might have, could be really helpful,> many thanks,> Abbie> > > > > > > ---------------------------------> New is the ultimate force in competitive emailing. Find out more at the Championships. Plus: play games and win prizes.>

New is the ultimate force in competitive emailing. Find out more at the Championships. Plus: play games and win prizes.

August 23, 2007

We live in San Diego and are doing the Light the Night walk here on

November 3. I am excited to do it.

>

> HELLO!

> MY NAME IS KRISTI

> MY HUSBAND DEREK WAS DIAGNOSED SEPTEMBER 18,2001 WITH CHRONIC

> MYELOGENOUS LEUKEMIA. DEREK HAS BEEN FIGHTING THIS BATTLE FOR

ALMOST 6

> YEARS. CURRENTLY DEREK IS TAKING (AMN 107) GLEEVEC QUIT WORKING

AFTER 5

> 1/2 YEARS.STARTED CLINICAL TRAILS FEBUARY. AMN 107 HAS BEEN A

BETTER

> DRUG FOR HIM NOT ALOT OF THE SIDE EFFECTS LIKE GLEEVEC. HE DOES

> COMPLAIN ABOUT PAIN IN HIS KNEE. HAS TOLD THE DOCTOR SEVERAL TIMES.

> ALSO TOLD HIS CHIROPRACTOR. AFTER READING SOME OF EVERYONES

RESPONCES

> TO AMN 107 WE WILL ALSO DISCUSS WITH HIS DOCTOR IN OCTOBER . HAS

ANYONE

> HEARD OF LIGHT THE NIGHT? A WALK FOR THE LEUKEMIA & LYMPHOMA

SOCIETY?

> WE LIVE IN IOWA. OUR WALK IS SATURDAY OCTOBER 6,2007. WE JOINED THE

> LIGHT THE NIGHT COMMITTEE. THE WALK IS TO HONOR THE ONES WHO HAVE

PASSED

> AND TO CELEBRATE THE LIVING. A BEAUTIFUL EVENT. OUR WALK HAS ONLY

BEEN

> AROUND FOR 4 YEARS. LAST YEAR WE FOUND OUT THE NIGHT BEFORE THE

> WALK.THIS YEAR WE JOINED THE COMMITTEE.WE HAVE RAISED $1,184.00

> WE HAVE A WEB PAGE FOR FUNDRAISING.THE LIGHT THE NIGHT WEBSITE

> WWW.LIGHTTHENIGHT.ORG TO READ DEREK'S STORY

> www.active.com/donate/ltnDesMo1/2270_kcookseyLTN

> HOPE TO HEAR FROM EVERYONE SOON. KRISTI

>

September 12, 2007

Hi Teri and welcome! I have similar issues with my son who also is high-functioning. They rarely see "problems" at school but if there are a lot of stresses that day I will see it as soon as he gets off the bus! I'm not sure but I'm assuming she is back on an IEP? Anyway..........I've got to get going but I wanted to give you a quick hello and welcome! Give us an update when you get a chance.

Becky

----- Original Message -----

From: Bernard

Sent: 9/11/2007 5:59:04 PM

Subject: [ ] New to the group

Hi everyone, ( and thanks n for getting me hooked up),

I am new to the group. My daughter was just diagnosed PDD-NOS a couple months ago. Mostly we got her evaluated because she's had some quirky behaviors and mannerisms she has displayed since she was younger and because the school system kicked her off her IEP right before she started Kindergarten ( big long frustrating story there). I guess I am just writing today because I am just very frustrated with everything!! I know the doctor told us that our daughter is "high functioning" and therein lies the trouble we have with the school district.

My daughter does try to hold everything together for school and then just lets loose at home. I have talked to the district about that and they dont really seem to care since it is not happening for the most part at school.

Anyway, that is a long story cut way short. Just wanted to say hi and ahhhhhhh at the same time I guess.

Thanks,

Teri

September 12, 2007

Welcome, Terri! Here are some things you might want to think about

before you talk to the school.

My son, though not officially diagnosed as high functioning, is. A

few years ago, we took him to see a pediatric neurologist whose

opinion was that just because a student has high functioning autism

doesn't necessarily mean that child will be able to live

independently once an adult. She told me a story of a client who was

intelligent enough to graduate from college, but couldn't hold down a

job that was related to his degree and wasn't able to live

independently because he couldn't distinguish other's intentions.

People with no scruples would take advantage of him. His parents

focused only on academics when he was a student on an IEP. Another

story was a different client who was able to graduate from high

school only, but could live independently since he had been taught

the necessary life skills while in school.

While your child might be quite intelligent and behaves well enough

so that she is not a problem child in school, is she progressing in

the areas that will allow her to be independent as an adult? Can she

read others' intentions, (for example, can she answer why questions

to stories)? Can she relate well with her peers (her abilities)?

Does she play typically with them (her performance)? Do you know

what causes her stress at school? Does she initiate conversations?

Does she use appropriate language when directing others and when

asking for clarification?

If she has any issues mentioned above, then your daughter needs an

IEP with at least speech/language goals!! And I'm sure a letter from

your physician will go a long way with the school!

Welcome again! And we all take turns saying " Agh! " The rest of us

on the list do want to help if/as we can!

>

> Hi everyone, ( and thanks n for getting me hooked up),

> I am new to the group. My daughter was just diagnosed PDD-NOS a

couple months ago. Mostly we got her evaluated because she's had some

quirky behaviors and mannerisms she has displayed since she was

younger and because the school system kicked her off her IEP right

before she started Kindergarten ( big long frustrating story there).

I guess I am just writing today because I am just very frustrated

with everything!! I know the doctor told us that our daughter

is " high functioning " and therein lies the trouble we have with the

school district.

> My daughter does try to hold everything together for school and

then just lets loose at home. I have talked to the district about

that and they dont really seem to care since it is not happening for

the most part at school.

> Anyway, that is a long story cut way short. Just wanted to say hi

and ahhhhhhh at the same time I guess.

> Thanks,

> Teri

>

September 12, 2007

Terri,

Welcome to the group. I hope you can find the support you need

here...these people are GREAT!!! I am an ABA/VB consultant and I am

actually presenting a workshop called " The ABCs of PDDs- an

introduction to Autism and other spectrum disorders " in Cleveland in

October. I would be more than happy to send you the information if

you'd like it (also, if you'd like any information on starting a home

program to help your daughter, let me know :-))

If you have any other questions, feel free to ask...I'm here to

help :-)

Meghan