Re: New Member and Question

[Guest guest]

Hi

My lab is doing mutation screening of the FOXL2 gene if you would like to

particiapate in this research. We think some mutations may have more

significance for ovarian failure. PLease contact me at the e-mail below if

you are interested.

Kent W. Small, M.D.

Professor of Ophthalmology

UCLA

200 Stein Plaza

Los Angeles, CA 90095

Director of the Macular Disease Center

Director of the Retina Research Lab

310-206-7475

fax 310-794-2029

small@...

> ----------

> From: dobrow21@...

> Reply blepharophimosis

> Sent: Wednesday, October 31, 2001 11:31 AM

> blepharophimosis

> Subject: blepharophimosis New Member and Question

>

> Greetings,

> I'm glad that I found this group.

> My daughter is 20 and was born with blepharophimosis. She had two

> surgeries when she was under 4. She is doing well except for

> sensitiity to light and excessive tearing.

>

> Now we heard about infertility problems and are concerned.

> Is there a test to determine if you will have infertility problems?

>

> Can anyone refer me to a link that has information that is more than

> a research study. Most don't have any more than the NIH press release

> on it http://www.nih.gov/news/pr/jan2001/nia-30.htm

>

>

> I was born with Blepharo-ptosis. No one else in our family has had

> similar problems.

>

> Looking forward to finding out about other people's experiences.

>

> Thanks,

>

> Ed

>

>

>

>

>

[Guest guest]

Dear ee,

I'm sure you'll be hearing from many on this, I believe many of us will have similar suggestions. Insteed of trying 4.5 to start out with knock it down to 1.5 or 2.0. Stay with that for a while (a month or so) until your not feeling as stiff, then go up to 4.5. I've encountered the same thing, therefore I've been at 3.0 for about 2 months. Good luck, I hope this works out!

(SPMS)

From: ee [mailto:halfassed@...] Sent: Saturday, April 10, 2004 4:37 PMlow dose naltrexone Subject: [low dose naltrexone] New Member and Question

Hello.I took LDN for a few weeks last summer and found that it made me very verystiff, so I quit. Afterwards I read that that was normal for some peopleand to stick with it.I'm picking up a new Rx of 4.5 mg LDN on Monday, and I am wondering howlong to expect the stiffness to last. I was taking baby steps...Some people had said it was the lactose filler, but I researched that andthe tiny amount used, unless one is very lactose intolerant, would notaffect the average person. I have no allergies or "intolerances" toanything, and eat dairy on a regular basis.I'm trying the LDN again cause I am out of options. I don't have a "real"diagnosis of MS, since my spinal fluid and MRIs are both normal, but I havethe typical RRMS pattern. At 42, I now walk with a cane due to drop footand spasticity. I've been chasing a diagnosis for 16+ years, but my MRIsare always normal. I've been to MS specialists, neurologists, internists,have driven into the city for use of a 3 tesla MRI for a better view, andLyme, Lupus, B-12 deficiency, AIDS, HTLV-2, syphilis, infection and so onhave all been ruled out.Even if I WANTED then (but I don't) I couldn't get the CRABS because of nodiagnosis. Or at least the insurance wouldn't cover them. I have beenoffered IV pulse steroids recently, but read about side effects and thefact that I'm not in a flare.. I'm passing.Anyway, if anyone has any experience with the early LDN therapy stiffness,I'd appreciate it.Thanks,ee

[Guest guest]

Hi shawnee-I had difficulty getting a final diagnosis too but persisted.

Have you had any eye problems? I finally got a diagnosis as I had double

vision coming and going and went to an optometrist with a special visual

testing machine, known as a Humphries(brand name) Visual field Analyser -

my eye pattern that came up as he checked in his book for patterns were of

course that of multiple sclerosis (as if I didnt already know...listen to

your inner voice!) he sent me to an opthomologist who sent me back to neuro

and after the hospitals evoked potentials? eye test finally diagnosis

confirmed!!!! so check out that avenue...MY OPTOMETRIST GOT ME MY

DIAGNOSIS!!! and also be wary of lyme disease blood test results they have

been known to say no lyme but actually you have it!(I checked for lyme and

read a lot of people had been told first tests they didnt have it but it

came up later!) but if you feel you have MS , as an inner knowing like I did

...you just may be right...AND FOR STIFFNES DO LUNGES FOR 15 SECONDS EACH

LEG TWICE WHEN YOU WAKE IN THE MORNING -press up on a wall(my physio told

me this...it helps) best twice a day too ...good luck shawnee -hope my

info. is useful - I remember that pre diagnosis limbo ...its always a

shock(even with my intuition on it) but great relief at the same time,when

it finally comes....take care...just started LDN 4 days ago ...the other

buzz of course is calcium aep or eap also known ...now we dont have it here

in Australia,but I'm going to get it asap...claims it can in some cases of

MS reverse! some dr's believe yes it works and really cheap in tablet form

too!! -use search engine to research it..tons of promising factual

information that makes complete sense to how it helps MS- as I am a firm

beleiver that us MSers do not absorb calcium and this is a special type

which gets into the cell because of its structural makeup.....

bye for now kellie from Aussie

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

From: " ee " <halfassed@...>

<low dose naltrexone >

Sent: Sunday, April 11, 2004 6:37 AM

Subject: [low dose naltrexone] New Member and Question

> Hello.

>

> I took LDN for a few weeks last summer and found that it made me very very

> stiff, so I quit. Afterwards I read that that was normal for some people

> and to stick with it.

>

> I'm picking up a new Rx of 4.5 mg LDN on Monday, and I am wondering how

> long to expect the stiffness to last. I was taking baby steps...

>

> Some people had said it was the lactose filler, but I researched that and

> the tiny amount used, unless one is very lactose intolerant, would not

> affect the average person. I have no allergies or " intolerances " to

> anything, and eat dairy on a regular basis.

>

> I'm trying the LDN again cause I am out of options. I don't have a " real "

> diagnosis of MS, since my spinal fluid and MRIs are both normal, but I

have

> the typical RRMS pattern. At 42, I now walk with a cane due to drop foot

> and spasticity. I've been chasing a diagnosis for 16+ years, but my MRIs

> are always normal. I've been to MS specialists, neurologists, internists,

> have driven into the city for use of a 3 tesla MRI for a better view, and

> Lyme, Lupus, B-12 deficiency, AIDS, HTLV-2, syphilis, infection and so on

> have all been ruled out.

>

> Even if I WANTED then (but I don't) I couldn't get the CRABS because of no

> diagnosis. Or at least the insurance wouldn't cover them. I have been

> offered IV pulse steroids recently, but read about side effects and the

> fact that I'm not in a flare.. I'm passing.

>

> Anyway, if anyone has any experience with the early LDN therapy stiffness,

> I'd appreciate it.

>

> Thanks,

>

> ee

>

>

>

>

>

>

>

[Guest guest]

Hi Kellie,

I'm still wondering about starting the LDN. My symptoms started with eye problems too, but now I'm on disability because of problems walking and fatigue. LDN makes me nervous because I already have a sleep disorder and I hear so many people have insomnia from the LDN. We'll see.

My question to you is this ... What in the world is calcium aep? Or, what is aep? I do know what calcium is, lol.

Lori

[Guest guest]

Lori,

Quite a few of us are actually sleeping better with LDN. Not everyone has sleep issues. LDN has given me the best sleep I've had in many years.

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

From: Lori Jensen

low dose naltrexone

Sent: Saturday, April 10, 2004 2:50 PM

Subject: Re: [low dose naltrexone] New Member and Question

Hi Kellie,

I'm still wondering about starting the LDN. My symptoms started with eye problems too, but now I'm on disability because of problems walking and fatigue. LDN makes me nervous because I already have a sleep disorder and I hear so many people have insomnia from the LDN. We'll see.

My question to you is this ... What in the world is calcium aep? Or, what is aep? I do know what calcium is, lol.

Lori

[Guest guest]

Hi ,

Thanks for your response. I'll sleep easier now that you told me that not everyone has insomnia from the LDN.

Lori

[Guest guest]

Here is the site for DR. Hans A. Nieper and CaEAP for MS

Click here>>http://www.mwt.net/~drbrewer/niep_art.htm

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.656 / Virus Database: 421 - Release Date: 4/9/2004

[Guest guest]

Hi "LV2"

Thanks for the info on CaEAP. It’s a whole library! I'm sure I'll find the answers I need there - then take them to my Neurologist (and I use that term loosely) and tell her what she might want to do for my MS. MS is her specialty, could have fooled me.

Lori

[Guest guest]

Hi Kelli

Do you know if Calcium EAP is a drug or a supplement? And when you are on it

do you stop taking your regular calcium supplement. Thanks for your help

Marie

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

From: <hellkell1@...>

<low dose naltrexone >

Sent: Saturday, April 10, 2004 5:28 PM

Subject: Re: [low dose naltrexone] New Member and Question

> Hi shawnee-I had difficulty getting a final diagnosis too but persisted.

> Have you had any eye problems? I finally got a diagnosis as I had double

> vision coming and going and went to an optometrist with a special visual

> testing machine, known as a Humphries(brand name) Visual field Analyser -

> my eye pattern that came up as he checked in his book for patterns were of

> course that of multiple sclerosis (as if I didnt already know...listen to

> your inner voice!) he sent me to an opthomologist who sent me back to

neuro

> and after the hospitals evoked potentials? eye test finally diagnosis

> confirmed!!!! so check out that avenue...MY OPTOMETRIST GOT ME MY

> DIAGNOSIS!!! and also be wary of lyme disease blood test results they have

> been known to say no lyme but actually you have it!(I checked for lyme and

> read a lot of people had been told first tests they didnt have it but it

> came up later!) but if you feel you have MS , as an inner knowing like I

did

> ..you just may be right...AND FOR STIFFNES DO LUNGES FOR 15 SECONDS EACH

> LEG TWICE WHEN YOU WAKE IN THE MORNING -press up on a wall(my physio told

> me this...it helps) best twice a day too ...good luck shawnee -hope my

> info. is useful - I remember that pre diagnosis limbo ...its always a

> shock(even with my intuition on it) but great relief at the same time,when

> it finally comes....take care...just started LDN 4 days ago ...the other

> buzz of course is calcium aep or eap also known ...now we dont have it

here

> in Australia,but I'm going to get it asap...claims it can in some cases of

> MS reverse! some dr's believe yes it works and really cheap in tablet form

> too!! -use search engine to research it..tons of promising factual

> information that makes complete sense to how it helps MS- as I am a firm

> beleiver that us MSers do not absorb calcium and this is a special type

> which gets into the cell because of its structural makeup.....

>

> bye for now kellie from Aussie

> ----- Original Message -----

> From: " ee " <halfassed@...>

> <low dose naltrexone >

> Sent: Sunday, April 11, 2004 6:37 AM

> Subject: [low dose naltrexone] New Member and Question

>

>

> > Hello.

> >

> > I took LDN for a few weeks last summer and found that it made me very

very

> > stiff, so I quit. Afterwards I read that that was normal for some

people

> > and to stick with it.

> >

> > I'm picking up a new Rx of 4.5 mg LDN on Monday, and I am wondering how

> > long to expect the stiffness to last. I was taking baby steps...

> >

> > Some people had said it was the lactose filler, but I researched that

and

> > the tiny amount used, unless one is very lactose intolerant, would not

> > affect the average person. I have no allergies or " intolerances " to

> > anything, and eat dairy on a regular basis.

> >

> > I'm trying the LDN again cause I am out of options. I don't have a

" real "

> > diagnosis of MS, since my spinal fluid and MRIs are both normal, but I

> have

> > the typical RRMS pattern. At 42, I now walk with a cane due to drop

foot

> > and spasticity. I've been chasing a diagnosis for 16+ years, but my

MRIs

> > are always normal. I've been to MS specialists, neurologists,

internists,

> > have driven into the city for use of a 3 tesla MRI for a better view,

and

> > Lyme, Lupus, B-12 deficiency, AIDS, HTLV-2, syphilis, infection and so

on

> > have all been ruled out.

> >

> > Even if I WANTED then (but I don't) I couldn't get the CRABS because of

no

> > diagnosis. Or at least the insurance wouldn't cover them. I have been

> > offered IV pulse steroids recently, but read about side effects and the

> > fact that I'm not in a flare.. I'm passing.

> >

> > Anyway, if anyone has any experience with the early LDN therapy

stiffness,

> > I'd appreciate it.

> >

> > Thanks,

> >

> > ee

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

marie, calcium eap is a supplement until you inject it and then it becomes a

drug. However it has a very protective quality actually preserving the

organs and few people have gotten cancer on this therapy. some have had

colon polyps that disappeared. Dr. Neiper felt it had many therapeutic

benenfits against chronic degenerative conditions. Lasly someone had sent me

a message about using all caps and it accidentally got erased. To my

recollection some of the members had requested that because of visual

problems. However I have no problem conforming to the group. If there is one

thing this condition has taught me it's don't sweat the small stuff! Thanks

for the tip. Sorry I included this in your message Marie but I am new to

computers and still can,t send a message to the group as a whole. For some

reason my computer won,t allow it. Kathy

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

From: " Marie Deady " <Mardea@...>

<low dose naltrexone >

Sent: Sunday, April 11, 2004 10:28 AM

Subject: Re: [low dose naltrexone] New Member and Question

> Hi Kelli

> Do you know if Calcium EAP is a drug or a supplement? And when you are on

it

> do you stop taking your regular calcium supplement. Thanks for your help

> Marie

> ----- Original Message -----

> From: <hellkell1@...>

> <low dose naltrexone >

> Sent: Saturday, April 10, 2004 5:28 PM

> Subject: Re: [low dose naltrexone] New Member and Question

>

>

> > Hi shawnee-I had difficulty getting a final diagnosis too but persisted.

> > Have you had any eye problems? I finally got a diagnosis as I had double

> > vision coming and going and went to an optometrist with a special

visual

> > testing machine, known as a Humphries(brand name) Visual field

Analyser -

> > my eye pattern that came up as he checked in his book for patterns were

of

> > course that of multiple sclerosis (as if I didnt already know...listen

to

> > your inner voice!) he sent me to an opthomologist who sent me back to

> neuro

> > and after the hospitals evoked potentials? eye test finally diagnosis

> > confirmed!!!! so check out that avenue...MY OPTOMETRIST GOT ME MY

> > DIAGNOSIS!!! and also be wary of lyme disease blood test results they

have

> > been known to say no lyme but actually you have it!(I checked for lyme

and

> > read a lot of people had been told first tests they didnt have it but it

> > came up later!) but if you feel you have MS , as an inner knowing like I

> did

> > ..you just may be right...AND FOR STIFFNES DO LUNGES FOR 15 SECONDS

EACH

> > LEG TWICE WHEN YOU WAKE IN THE MORNING -press up on a wall(my physio

told

> > me this...it helps) best twice a day too ...good luck shawnee -hope my

> > info. is useful - I remember that pre diagnosis limbo ...its always a

> > shock(even with my intuition on it) but great relief at the same

time,when

> > it finally comes....take care...just started LDN 4 days ago ...the other

> > buzz of course is calcium aep or eap also known ...now we dont have it

> here

> > in Australia,but I'm going to get it asap...claims it can in some cases

of

> > MS reverse! some dr's believe yes it works and really cheap in tablet

form

> > too!! -use search engine to research it..tons of promising factual

> > information that makes complete sense to how it helps MS- as I am a firm

> > beleiver that us MSers do not absorb calcium and this is a special type

> > which gets into the cell because of its structural makeup.....

> >

> > bye for now kellie from Aussie

> > ----- Original Message -----

> > From: " ee " <halfassed@...>

> > <low dose naltrexone >

> > Sent: Sunday, April 11, 2004 6:37 AM

> > Subject: [low dose naltrexone] New Member and Question

> >

> >

> > > Hello.

> > >

> > > I took LDN for a few weeks last summer and found that it made me very

> very

> > > stiff, so I quit. Afterwards I read that that was normal for some

> people

> > > and to stick with it.

> > >

> > > I'm picking up a new Rx of 4.5 mg LDN on Monday, and I am wondering

how

> > > long to expect the stiffness to last. I was taking baby steps...

> > >

> > > Some people had said it was the lactose filler, but I researched that

> and

> > > the tiny amount used, unless one is very lactose intolerant, would not

> > > affect the average person. I have no allergies or " intolerances " to

> > > anything, and eat dairy on a regular basis.

> > >

> > > I'm trying the LDN again cause I am out of options. I don't have a

> " real "

> > > diagnosis of MS, since my spinal fluid and MRIs are both normal, but I

> > have

> > > the typical RRMS pattern. At 42, I now walk with a cane due to drop

> foot

> > > and spasticity. I've been chasing a diagnosis for 16+ years, but my

> MRIs

> > > are always normal. I've been to MS specialists, neurologists,

> internists,

> > > have driven into the city for use of a 3 tesla MRI for a better view,

> and

> > > Lyme, Lupus, B-12 deficiency, AIDS, HTLV-2, syphilis, infection and so

> on

> > > have all been ruled out.

> > >

> > > Even if I WANTED then (but I don't) I couldn't get the CRABS because

of

> no

> > > diagnosis. Or at least the insurance wouldn't cover them. I have been

> > > offered IV pulse steroids recently, but read about side effects and

the

> > > fact that I'm not in a flare.. I'm passing.

> > >

> > > Anyway, if anyone has any experience with the early LDN therapy

> stiffness,

> > > I'd appreciate it.

> > >

> > > Thanks,

> > >

> > > ee

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Tessa

Welcome to the group.

I know this is short notice - and I have no idea where you live - but we are

having a get-together on Sunday in a hotel near Station in London.

We are meeting at 11:00am for a coffee.

Everyone is welcome, if you can come it would be nice to meet you and your

family.

I think there will be 7 or 8 families coming along. At least 5 of them are

under the care of Mr Collin.

Take care

Shireen

London, England.

> blepharophimosis new member and question

>

> Hi all

> I'm a new member too, pleased to meet you all! My son Bipin

> is 9 months old and has BPES, as does my husband and his

> brother, sister and Dad.

> We just saw Mr Collin at Moorfields and he recommended that

> he does a sort of interim operation to lift Bipin's lids

> enough so that they don't cover his pupils so that his

> eyesight can develop properly. It's not the permanent

> operation (slings?) that many of you are talking about but

> would only last a few years so that his eyesight can develop.

> He described it as putting a stitch inside his lids. Have any

> of you been through this? any before and after photos?

> Tessa

[Guest guest]

Hi Tessa

Welcome to the group. My name is and my 3 year old daughter,

Kirsten has BPES. She had the temporary slings put in by Mr Collin

in Jan 2005 when she had just turned 2. Kirsten's right eye was

becoming weaker than her left, fine now though. He will be repeating

the lid lift towards the end of 2006 when she is 4, using a tendon

from her leg. Her before and after pics are under " Kirsten Parsons " .

We are going to the get-together on Sun 18th in London and we are

really looking forward to meeting everyone who will be there.

Take care

Parsons

>

> Hi all

> I'm a new member too, pleased to meet you all! My son Bipin is 9

months

> old and has BPES, as does my husband and his brother, sister and

Dad.

> We just saw Mr Collin at Moorfields and he recommended that he

does a

> sort of interim operation to lift Bipin's lids enough so that they

> don't cover his pupils so that his eyesight can develop properly.

It's

> not the permanent operation (slings?) that many of you are talking

> about but would only last a few years so that his eyesight can

develop.

> He described it as putting a stitch inside his lids. Have any of

you

> been through this? any before and after photos?

> Tessa

>

[Guest guest]

thanks Beth.

yes my husband and his brother both had the full range of permanent

ops but not till they were about 10. Both have quite bad eyesight,

especially in their left eyes which had the lower lids, so it seems

like their sight didn't develop fully when they were little because

the pupils were partially covered. Their surgery was done by Mr

Collin at Moorfields (London) nearly 25 years ago. As far as I know

the procedures (thigh tissue etc.) were pretty much the same as they

do now.

> > > > I wonder what the difference is between the procedure that Dr

> > > > Collin does with tissue from the leg at 4 or 5 (my husband had

> > > the same thing

> > > > done by Dr Collin 25 years ago!), and the YV canthoplasty that

> > > they

> > > > seem to do at an earlier age in the States?

> > > The fascia lata (thigh tissue) sling is to correct ptosis

> > > (droopy

> > > eyelids) - the 'P' in BPEI. The YV canthoplasty is to correct

> > > blepharophimosis (small eye openings) and epicanthus inversus

> > > (inverted

> > > canthal folds) - the 'B' and 'EI' in BPEI.

> > > The sling is sometimes done early if sight is affected (i.e. if

> > > the

> > > droopy lid covers the pupil), and the canthoplasty is usually

> > > done

> > > before starting school (for cosmetic/social reasons, and because

> > > facial

> > > stability is better by then). A sling is often done then too if

> > > not done

> > > already, or re-done if done earlier.

> > > Rob W.

> > > > sorry we can't make it on Sunday. hope to meet you at the next

> > > one.

> > > > Tessa

> > > >

> > > > TL> Hi Tessa

> > > >

> > > > TL> Welcome to the group.My Name is and my Daughter

> > > is just over 2 and has had the temperary slings Mr Collin

> > > has sugested.I have to agree with him was 9mths old when

> > > she had hers

> > > > TL> done and wasnt doing much because of lack of vision,within

> > > days of the op she was like a different child looking around and

> > > starting to move.Her before and after photos are under .I

> > > have

> > > > TL> been told she wont have anymore ops until she is between 5

> > > and 7 and these will be the main ones.

> > > >

> > > > TL> Hope you can make the meeting Sunday more the merrier.

> > > >

> > > > TL>

> > >

[Guest guest]

tessa my daughter just had that done about 2 months ago...she is 6 months old ..i am going to resend an early mail i send with before naad fater pics ...let me know your thoughts....we are sooooo happy she is a new person after the operation. tessa_mackenzie <tessamackenzie@...> wrote: Hi allI'm a new member too, pleased to meet you all! My son Bipin is 9 months old and has BPES, as does my husband and his brother, sister and Dad. We just saw Mr Collin at Moorfields and he recommended that he does a sort of interim operation to lift Bipin's lids enough so that they don't cover his pupils so that his eyesight can develop properly. It's not the permanent operation (slings?) that many of you are talking about but would only last a few years so that his eyesight can develop. He described it as

putting a stitch inside his lids. Have any of you been through this? any before and after photos?Tessa <a href="http://www.TickerFactory.com/"><img border="0"

src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>__________________________________________________

[Guest guest]

YES you will slowly see the lids start to fall again. My sons had they lifted 3 times because they grow so much they droop and have to be redone...but it was so worth it my 3 kids look wonderful! tessa mackenzie <tessamackenzie@...> wrote: Thanks for that Rob. That's much clearer now. Another question - Does anyone know what happens when the temporaryslings (that Dr Collin does in babies) run out? I think he said theywould last a few years, but then do the lids just gradually slip back tohow they were?Thanks!TessaOn Wed, 14 Dec 2005 23:09:46 +1100, "Rob "<r.watson@...> said:> > Hi Tessa,> Tessa Mackenzie wrote:> > I wonder what the difference is between the procedure that Dr> > Collin does with tissue from the leg at 4 or 5 (my

husband had> the same thing> > done by Dr Collin 25 years ago!), and the YV canthoplasty that> they> > seem to do at an earlier age in the States?> The fascia lata (thigh tissue) sling is to correct ptosis> (droopy> eyelids) - the 'P' in BPEI. The YV canthoplasty is to correct> blepharophimosis (small eye openings) and epicanthus inversus> (inverted> canthal folds) - the 'B' and 'EI' in BPEI.> The sling is sometimes done early if sight is affected (i.e. if> the> droopy lid covers the pupil), and the canthoplasty is usually> done> before starting school (for cosmetic/social reasons, and because> facial> stability is better by then). A sling is often done then too if> not done> already, or re-done if done earlier.> Rob W.> > sorry we can't make it on Sunday. hope to meet you at the next> one.> > Tessa>

>> > TL> Hi Tessa> >> > TL> Welcome to the group.My Name is and my Daughter> is just over 2 and has had the temperary slings Mr Collin> has sugested.I have to agree with him was 9mths old when> she had hers> > TL> done and wasnt doing much because of lack of vision,within> days of the op she was like a different child looking around and> starting to move.Her before and after photos are under .I> have> > TL> been told she wont have anymore ops until she is between 5> and 7 and these will be the main ones.> >> > TL> Hope you can make the meeting Sunday more the merrier.> >> > TL> >

[Guest guest]

Yes your children sure do look wonderful Sharon ! Malenah has an apointment to see the surgery specialist (can't remember what the specialty is called, I have so much to learn still!) I am excited and nervous all at the same time, I'm sure every Mom and Dad on this board can relate to that! My daughter, Malenah's big sister 13yr., says she loves Malenah's eyes (who doesn't ) and is in away sad that she won't look like she looks now. I sure can relate to her thoughts. I think it will be easier on Malenah, not to work so hard to lift those little eye brows up to see.

kk

[Guest guest]

Just that the legs have to be a certain length for the doctor to

harvest the tissue, and in Lily's case she may need it at 3-4 yrs old

therefore she should have enough " lenght " . The doctor said sometimes

kids have to be a little older (therefore taller) to harvest enough

of the fascia lata.

I didn't have this procedure so it's new to me. I only had the

muscles " tightened " . Lily's ptosis is more severe than mine.

> > > > I wonder what the difference is between the procedure that Dr

> > > > Collin does with tissue from the leg at 4 or 5 (my husband had

> > > the same thing

> > > > done by Dr Collin 25 years ago!), and the YV canthoplasty that

> > > they

> > > > seem to do at an earlier age in the States?

> > > The fascia lata (thigh tissue) sling is to correct ptosis

> > > (droopy

> > > eyelids) - the 'P' in BPEI. The YV canthoplasty is to correct

> > > blepharophimosis (small eye openings) and epicanthus inversus

> > > (inverted

> > > canthal folds) - the 'B' and 'EI' in BPEI.

> > > The sling is sometimes done early if sight is affected (i.e. if

> > > the

> > > droopy lid covers the pupil), and the canthoplasty is usually

> > > done

> > > before starting school (for cosmetic/social reasons, and because

> > > facial

> > > stability is better by then). A sling is often done then too if

> > > not done

> > > already, or re-done if done earlier.

> > > Rob W.

> > > > sorry we can't make it on Sunday. hope to meet you at the next

> > > one.

> > > > Tessa

> > > >

> > > > TL> Hi Tessa

> > > >

> > > > TL> Welcome to the group.My Name is and my Daughter

> > > is just over 2 and has had the temperary slings Mr Collin

> > > has sugested.I have to agree with him was 9mths old when

> > > she had hers

> > > > TL> done and wasnt doing much because of lack of vision,within

> > > days of the op she was like a different child looking around and

> > > starting to move.Her before and after photos are under .I

> > > have

> > > > TL> been told she wont have anymore ops until she is between 5

> > > and 7 and these will be the main ones.

> > > >

> > > > TL> Hope you can make the meeting Sunday more the merrier.

> > > >

> > > > TL>

> > >