Re: New to the site!

December 5, 2000

HI Kara:

Welcome to the list. Is your son getting any treatment for OCD? We found

that exposure and response prevention (E & RP) was very helpful for our son,

Steve. This is the first line treatment for kids with OCD and when OCD is

mild to moderate it is possible to treat kids with E & RP only without

medication. IF there are other comorbidities this might not be possible.

I am taking Effexor XR, 75 mg daily for my GAD, which seems to be a

" variant " of OCD. It makes me a bit sleepy at times, but helps me quite a

bit. I also do CBT for my GAD. I thought I had depression but after

starting Effexor realized it was GAD. This happened partly because I

attended two sessions on GAD at the OCF conference and went bingo, and

partly because I did not meet the diagnostic criteria for depression as

well as I met those for GAD.

Learning how to cope with meltdowns required that we change a lot of things

in our home. First we had to learn a lot about OCD, then we had to learn

to stop participating in Steve's OCD, then we had to learn ways of

responding to his OCD that were more effective in the long term. IF you

check out the archives and our files you will see lots of references to

excellent books about OCD and children. Good luck, take care, aloha, Kathy

(H)

kathyh@...

At 06:08 AM 12/06/2000 -0000, you wrote:

>Hi, I am new to the group! I have depression and OCD, my husband has

>anxiety and depression and guess what>>>> my 6 year old son is

>having ocd like behavior!!! We JUST started therapy for him and meet

>with the psychiatrist next week. So far, the therapist says he has a

>lot of anxiet and a low tolerance for frustration. He also says that

>my son does not have Garden variety ocd, but does have signs of it.

>It has been so hard to deal with his anger and outbursts that no one

>can control. He just spins out of control and ther is nothing we can

>do or say!! It is SOOOOO hard!!! I just want my son back!! He

>always looks so sad and we walk around on egg shells never sure what

>will set him off!!!! It can be the smallest thing!! All of a

>sudden, I realized he had had melt downs every day for weeks! No

>wonder I am so tired. I am afraid he is going to lose friends

>because he is bossy and won't give up... he just asks and asks and

>asks and asks!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, i have been on

>Wellbutrin in combo with Paxil or Zoloft or Prozac or Celexa or

>Serzone or Luvox. The Wellbutrin-Prozac combo worked pretty well

>until I started to gain weight and get depressed. Now I just started

>on Wellbutrin and Effexor. Has anyone had any luck with Effexor and

>OCD??? If so, what dosage and did you gain weight. Sound so silly

>to be concerned about weight, but i always have to watch it!! Well,

>I am glad all of you are " out there!! " I feel that my problems are

>small compared to what some of you parents go through, but none the

>less painful!! After all, they are our babies!!

>

>Kara San , CA

>

December 5, 2000

Hi Kara,

Welcome to the group. I think you'll find many answers here (I sure have). I am on Effexor and Zoloft for depression and haven't noticed any weight gain. In fact, I may have lost 1 or 2 pounds. As far as your son's meltdowns go, have you read "The Explosive Child" by Dr. Ross Greene? It really changed the way we deal with my son (9) who has anger problems. He has been diagnosed with OCD, ADHD, and depression. We are in the process of changing meds with him, but we have found Wellbutrin to work best on his rages which his psych. thinks are from the depression. On the other hand, when I tried Wellbutrin, I raged. Every med seems to work differently for each person. I have 3 children who have all been diagnosed with OCD along with other things and each is on a different med. I highly recommend Dr. Greene's book - it totally changed the way we deal with Ian and made life much easier. Walking on eggshells is so tiring! Good luck and keep in touch!

in Texas

New to the site!

Hi, I am new to the group! I have depression and OCD, my husband has anxiety and depression and guess what>>>> my 6 year old son is having ocd like behavior!!! We JUST started therapy for him and meet with the psychiatrist next week. So far, the therapist says he has a lot of anxiet and a low tolerance for frustration. He also says that my son does not have Garden variety ocd, but does have signs of it. It has been so hard to deal with his anger and outbursts that no one can control. He just spins out of control and ther is nothing we can do or say!! It is SOOOOO hard!!! I just want my son back!! He always looks so sad and we walk around on egg shells never sure what will set him off!!!! It can be the smallest thing!! All of a sudden, I realized he had had melt downs every day for weeks! No wonder I am so tired. I am afraid he is going to lose friends because he is bossy and won't give up... he just asks and asks and asks and asks!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, i have been on Wellbutrin in combo with Paxil or Zoloft or Prozac or Celexa or Serzone or Luvox. The Wellbutrin-Prozac combo worked pretty well until I started to gain weight and get depressed. Now I just started on Wellbutrin and Effexor. Has anyone had any luck with Effexor and OCD??? If so, what dosage and did you gain weight. Sound so silly to be concerned about weight, but i always have to watch it!! Well, I am glad all of you are "out there!!" I feel that my problems are small compared to what some of you parents go through, but none the less painful!! After all, they are our babies!!Kara San , CAYou may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , Roman, and Jackie Stout. Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at louisharkins@... .

December 5, 2000

Thank you, Kathy, for your response! I have to show my novice

standing by asking what GAD is!? I know a lot having gone through it

myself, but you got me on that one!!

Kara

> >Hi, I am new to the group! I have depression and OCD, my husband

has

> >anxiety and depression and guess what>>>> my 6 year old son is

> >having ocd like behavior!!! We JUST started therapy for him and

meet

> >with the psychiatrist next week. So far, the therapist says he

has a

> >lot of anxiet and a low tolerance for frustration. He also says

that

> >my son does not have Garden variety ocd, but does have signs of

it.

> >It has been so hard to deal with his anger and outbursts that no

one

> >can control. He just spins out of control and ther is nothing we

can

> >do or say!! It is SOOOOO hard!!! I just want my son back!! He

> >always looks so sad and we walk around on egg shells never sure

what

> >will set him off!!!! It can be the smallest thing!! All of a

> >sudden, I realized he had had melt downs every day for weeks! No

> >wonder I am so tired. I am afraid he is going to lose friends

> >because he is bossy and won't give up... he just asks and asks

and

> >asks and asks!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, i have been on

> >Wellbutrin in combo with Paxil or Zoloft or Prozac or Celexa or

> >Serzone or Luvox. The Wellbutrin-Prozac combo worked pretty well

> >until I started to gain weight and get depressed. Now I just

started

> >on Wellbutrin and Effexor. Has anyone had any luck with Effexor

and

> >OCD??? If so, what dosage and did you gain weight. Sound so

silly

> >to be concerned about weight, but i always have to watch it!!

Well,

> >I am glad all of you are " out there!! " I feel that my problems

are

> >small compared to what some of you parents go through, but none

the

> >less painful!! After all, they are our babies!!

> >

> >Kara San , CA

> >

December 6, 2000

Hi Kara and welcome to the group. I am the mother of a 6-year-old (7 next

month) girl who had an abrupt onset of OCD two years ago. Lately several

also have said they feel their childrens' problems are small compaired to

other posters, but I've been on the list long enough to know that no issue

around OCD is too small for this group to help solve! Rarely is someone's

child experiencing something that does not ring any bells with anyone else

here. :-)

Since your son is young, I wanted to mention PANDAS, which is an

autoimmune-related subtype of OCD. If your son had an abrupt onset of

symptoms, or has sudden ups and downs in symptom severity, you may want to

consider whether his OCD may be infection-related. There are at least two

good articles about PANDAS that you can access in this group's files

section.

Are you considering meds for your child, or yourself? I'm a little confused

there, but in general it's difficult to draw conclusions from others'

experiences since reactions and side-effects are so individual. Sometimes

if a parent has a good response to a certain SSRI, that can be a " hint " that

the child may respond well too.

Mild to moderate OCD can be treated with Exposure and Response Prevention

therapy, a type of Cognitive Behavioral Therapy, which is the only therapy

shown to reduce OCD symptoms. Does your psychiatrist suggest your son

receive this type of therapy? Many parents on this list can tell you of

wasted time and money spent to have their children participate in

conventional talking therapies. From my experience, I will tell you to be

prepared to be told that your child is too young for E & RP. My daughter and

many other young children have had a lot of success with this. Her OCD is

at a livable level today thanks to it.

Kathy R. in Indiana

New to the site!

> Hi, I am new to the group! I have depression and OCD, my husband has

> anxiety and depression and guess what>>>> my 6 year old son is

> having ocd like behavior!!! We JUST started therapy for him and meet

> with the psychiatrist next week. So far, the therapist says he has a

> lot of anxiet and a low tolerance for frustration. He also says that

> my son does not have Garden variety ocd, but does have signs of it.

> It has been so hard to deal with his anger and outbursts that no one

> can control. He just spins out of control and ther is nothing we can

> do or say!! It is SOOOOO hard!!! I just want my son back!! He

> always looks so sad and we walk around on egg shells never sure what

> will set him off!!!! It can be the smallest thing!! All of a

> sudden, I realized he had had melt downs every day for weeks! No

> wonder I am so tired. I am afraid he is going to lose friends

> because he is bossy and won't give up... he just asks and asks and

> asks and asks!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, i have been on

> Wellbutrin in combo with Paxil or Zoloft or Prozac or Celexa or

> Serzone or Luvox. The Wellbutrin-Prozac combo worked pretty well

> until I started to gain weight and get depressed. Now I just started

> on Wellbutrin and Effexor. Has anyone had any luck with Effexor and

> OCD??? If so, what dosage and did you gain weight. Sound so silly

> to be concerned about weight, but i always have to watch it!! Well,

> I am glad all of you are " out there!! " I feel that my problems are

> small compared to what some of you parents go through, but none the

> less painful!! After all, they are our babies!!

>

> Kara San , CA

>

> You may subscribe to the OCD-L by emailing listserv@... . In t

he body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy ,

Roman, and Jackie Stout. Subscription issues, problems, or

suggestions may be addressed to Louis Harkins, list owner, at

louisharkins@... .

>

December 6, 2000

Hi Kathy... it came to me at about 2am what GAD means!! I have it

too, of course! kara

> >Thank you, Kathy, for your response! I have to show my novice

> >standing by asking what GAD is!? I know a lot having gone through

it

> >myself, but you got me on that one!!

> >

> >Kara

> >

December 6, 2000

HI Kara:

Oops, sorry GAD = generalized anxiety disorder. I suspect is it connected

genetically (and environmentally) to OCD. I developed this after dealing

with Steve's OCD onset etc. although I think I had a shadow syndrome of it

all my life. Take care, aloha, Kathy (H)

kathyh@...

At 07:23 AM 12/06/2000 +0000, you wrote:

>Thank you, Kathy, for your response! I have to show my novice

>standing by asking what GAD is!? I know a lot having gone through it

>myself, but you got me on that one!!

>

>Kara

>

December 6, 2000

Hi Kathy,

Thank you for your words of encouragement. I am on meds. I have

been on them for a couple of years in all different combos etc.

right now I am on Effexor XR and Wellbutrin SR. Too soon to tell,

but i do feel a little better.

As for my son, his symptoms(anger, OCD, anxiety) have really

escalated since a year ago. He has always shown sighns but NOTHING

like this. His therapist, who he's only seen 2 times, thinks it is

mostly anxiety and some not typical OCD symptoms. We meet with him

next week to discuss what he has found. We also go to the

Psychiatrist for our intake mtg. next Thursday. WQe have really just

started on all the treaments. It takes so long to get the process

started even though the family is in crisis. I have heard a little

about PANDAS, but i need to read more about it. My son also has

moderate asthma and has been on meds for that for 5 years. he has

had A LOT of infections and A LOT of antibiotics!!

As you know, there are good days and bad days. we have not had a

good day in months!! Everyday had a melt down, you just never know

when it is going to happen or what will trigger it. I just want to

see my son's smile again! I am so glad you are all out there...

this is really hard. it's hard to talk to with your friends because

you don't want them to think your child is wierd and, to tell the

truth, there is no way to understand it unless you have been there!!

I go through it and i don't understand it!!! I feel very isolated at

times, which is not good for my depression or OCD!!! I just look at

all my friends do and I get so jealous that all of my time ois spent

walking on eggshells and tring to prevent meltdowns, while my friends

are sewing, doing crafts, going out with friends etc. It is just not

fair at times. BUT I know things will get better!!

Kara

> Hi Kara and welcome to the group. I am the mother of a 6-year-old

(7 next

> month) girl who had an abrupt onset of OCD two years ago. Lately

several

> also have said they feel their childrens' problems are small

compaired to

> other posters, but I've been on the list long enough to know that

no issue

> around OCD is too small for this group to help solve! Rarely is

someone's

> child experiencing something that does not ring any bells with

anyone else

> here. :-)

>

> Since your son is young, I wanted to mention PANDAS, which is an

> autoimmune-related subtype of OCD. If your son had an abrupt onset

of

> symptoms, or has sudden ups and downs in symptom severity, you may

want to

> consider whether his OCD may be infection-related. There are at

least two

> good articles about PANDAS that you can access in this group's files

> section.

>

> Are you considering meds for your child, or yourself? I'm a little

confused

> there, but in general it's difficult to draw conclusions from

others'

> experiences since reactions and side-effects are so individual.

Sometimes

> if a parent has a good response to a certain SSRI, that can be

a " hint " that

> the child may respond well too.

>

> Mild to moderate OCD can be treated with Exposure and Response

Prevention

> therapyalitype of Cognitive Behavioral Therapy, which is the only

therapy

> shown to reduce OCD symptoms. Does your psychiatrist suggest your

son

> receive this type of therapy? Many parents on this list can tell

you of

> wasted time and money spent to have their children participate in

> conventional talking therapies. From my experience, I will tell

you to be

> prepared to be told that your child is too young for E & RP. My

daughter and

> many other young children have had a lot of success with this.

Her OCD is

> at a livable level today thanks to it.

>

> Kathy R. in Indiana

>

> New to the site!

>

> > Hi, I am new to the group! I have depression and OCD, my husband

has

> > anxiety and depression and guess what>>>> my 6 year old son is

> > having ocd like behavior!!! We JUST started therapy for him and

meet

> > with the psychiatrist next week. So far, the therapist says he

has a

> > lot of anxiet and a low tolerance for frustration. He also says

that

> > my son does not have Garden variety ocd, but does have signs of

it.

> > It has been so hard to deal with his anger and outbursts that no

one

> > can control. He just spins out of control and ther is nothing we

can

> > do or say!! It is SOOOOO hard!!! I just want my son back!! He

> > always looks so sad and we walk around on egg shells never sure

what

> > will set him off!!!! It can be the smallest thing!! All of a

> > sudden, I realized he had had melt downs every day for weeks! No

> > wonder I am so tired. I am afraid he is going to lose friends

> > because he is bossy and won't give up... he just asks and asks

and

> > asks and asks!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, i have been on

> > Wellbutrin in combo with Paxil or Zoloft or Prozac or Celexa or

> > Serzone or Luvox. The Wellbutrin-Prozac combo worked pretty well

> > until I started to gain weight and get depressed. Now I just

started

> > on Wellbutrin and Effexor. Has anyone had any luck with Effexor

and

> > OCD??? If so, what dosage and did you gain weight. Sound so

silly

> > to be concerned about weight, but i always have to watch it!!

Well,

> > I am glad all of you are " out there!! " I feel that my problems

are

> > small compared to what some of you parents go through, but none

the

> > less painful!! After all, they are our babies!!

> >

> > Kara San , CA

> >

> > You may subscribe to the OCD-L by emailing listserv@v... . In t

> he body of your message write: subscribe OCD-L your name. You may

> subscribe to the Parents of Adults with OCD List at

> parentsofadultswithOCD . You may

access the

> files, links, and archives for our list at

> . Our list advisors

are Tamar

> Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list

moderators are

> Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy

,

> Roman, and Jackie Stout. Subscription issues, problems, or

> suggestions may be addressed to Louis Harkins, list owner, at

> louisharkins@h... .

> >

December 6, 2000

Hi My name is Steph,

My I am married and have two daughters one is 13 and is 7 she has

OCD.. It has been very hard to find information about how to deal with a

child with OCD.. I Would LOVE to be more understanding but it is hard for

me.. She goes through stages.. We live in Fla and for over a year she HAD to

wear pants.. well in 100 degree weather I would say ASHLEY you don't NEED

pants.. this was before I knew what she had.. and I would ask her WHY and she

had no reason just I HAVE to.. well now I do understand her a littler more

and I try to DEAL with it like this week was a FUN field trip to Sea World

but couldn't go because she cant deal with riding on a bus and she

cant stand to go on a highway so I let her stay home with me and I took her

so the mall and out to lunch.. I felt bad for her so I am not sure what I did

was right or if I should have MADE her go.. any input would be so helpful..

Thank you for listening..

Steph

December 6, 2000

Hi Steph, Welcome to the list, you will find a great group of people and an

incredible amount of support. I wanted to know what area of Florida you are

in? My name is NIkki and my 10yr old daughter " " has OCD and we live

in Orlando. I noticed you mentioned SEA WORLD. If your comfortable with it

and you live close by I would love to talk to you more. My daughter was diag.

2yrs ago this past July but has shown symptoms since birth and could have

been diag at 6. We went to the OCF convention in Chicago this past summer and

it was incredible, TIffany's main reason for going was to meet another child

with OCD so she doesnt feel like the only one. She did meet another girl age

11 and they had a great time together. Write back if you like or you can

write directly to my email if you like. God Bless!

Nikki in O'town

December 7, 2000

Hi Kara,

<karakirk@...> wrote:

> As for my son, his symptoms(anger, OCD, anxiety) have really

> escalated since a year ago. He has always shown sighns but NOTHING

> like this. His therapist, who he's only seen 2 times, thinks it is

> mostly anxiety and some not typical OCD symptoms. We meet with him

> next week to discuss what he has found.

Just curious, what atypical OCD symptoms has he noticed in your son? Many

of us have realized looking back that our children showed mild signs for

years, and in some cases from birth. In a way that I don't think is totally

understood, an upsetting event or situation can " kick off " OCD that has been

smouldering under the surface in a susceptable person, one who is wired or

primed to have OCD. Perhaps this can explain your son's worse symptoms?

> We also go to the

> Psychiatrist for our intake mtg. next Thursday. WQe have really just

> started on all the treaments. It takes so long to get the process

> started even though the family is in crisis.

Amen. We were lucky as our daughter had her abrupt onset in December (two

years ago tomorrow) we had a blizzard and ice storms, many appointments were

cancelled, and we had a 4-wheel-drive SUV. I had been told it would take

two months for an initial appointment with many of the doctors I called.

Even so I felt trapped in a slow-motion emergency.

> As you know, there are good days and bad days. we have not had a

> good day in months!! Everyday had a melt down, you just never know

> when it is going to happen or what will trigger it. I just want to

> see my son's smile again!

Untreated OCD is very hard to watch in your child. I kept wanting to peel

" it " away, to see and interact with my real child, who I missed so very

much. At that point I couldn't imagine pulling her out from under this

mess, but things turned around fairly quickly with the right meds, which

were necessary for her, not all kids, and especially a few months later when

we started E & RP.

> I am so glad you are all out there...

> this is really hard. it's hard to talk to with your friends because

> you don't want them to think your child is wierd and, to tell the

> truth, there is no way to understand it unless you have been there!!

> I go through it and i don't understand it!!!

I've stopped telling others of Kel's diagnosis unless there is a need.

Because of her age, whatever behaviors OCD prompts her to do don't stand out

much as I suspect they would in an older child. I agree that living with

OCD in the family gives an understanding that's not available to others!

> I feel very isolated at

> times, which is not good for my depression or OCD!!! I just look at

> all my friends do and I get so jealous that all of my time ois spent

> walking on eggshells and tring to prevent meltdowns, while my friends

> are sewing, doing crafts, going out with friends etc. It is just not

> fair at times. BUT I know things will get better!!

Things will get better, and surprisingly quickly, when your son receives

good treatment for his OCD. I'm glad you realize isolation is bad news for

your depression and OCD! Keep posting, also you may want to ask your son's

doctor about support groups in the area. I attended one for several months,

and found it very helpful to talk face-to-face with other parents going

through what our family was. I also got to meet children who were further

along in treatment and doing well, which gave me hope and showed me what was

possible at a time when I really needed that.

Kathy R. in Indiana

December 7, 2000

Hello Steph, you describe very eloquently the lack of logic that

characterizes OCD compulsions, such as your daughter having to wear slacks

in hot weather. As you have found out, OCD does not remit to explanations

or reason. It's not that your child doesn't understand--no doubt she

does--it's that the OCD makes it necessary to do these illogical and

pointless things, to avoid anxious feelings. No one with OCD want to do

compulsions, but they feel they must or else something awful could happen.

OCD symptoms commonly wax and wane, and also change over time.

A book that is crammed with information on dealing with a child with OCD was

written by one of this list's advisors: " Freeing Your Child from

Obsessive-Compulsive Disorder " by Tamar E. Chansky. I would also suggest

reading " OCD in Children and Adolescents, A Cognitive-Behavioral Treatment

Manual " by S. March and Mulle, which describes CBT for OCD.

There are several other very good books about OCD in children, but these two

make a great start.

Is your child receiving treatment for her OCD? This would be either SSRI

therapy, Exposure and Response Prevention Therapy, or both. E & RP involves

confronting OCD in a stepwise fashion from least-difficult to

most-difficult. Kids learn that though the anxiety is uncomfortable, it is

survivable, and this is how kids begin to shake themselves loose from the

OCD monster and all its pointless rules.

In general, the more OCD is accomodated, the more OCD there is to

accomodate. Instead of avoiding the trip to Sea World with her class

altogether, was there any part of it she felt she could handle? Could she

have, for example, ridden in a car over highways to Sea World, rather than

the bus? Especially if she's not receiving treatment for her OCD, you were

right not to try to force her to participate if every part of this

experience was too high on her heirarchy of fears right now. OCD won this

time but with E & RP for the fear of highway driving and riding on a bus, she

can look forward to being in good shape for the next field trip.

Hope I've helped,

Kathy R. in Indiana

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

From: <midniteswim2@...>

> I am married and have two daughters one is 13 and is 7 she has

> OCD.. It has been very hard to find information about how to deal with a

> child with OCD.. I Would LOVE to be more understanding but it is hard for

> me.. She goes through stages.. We live in Fla and for over a year she HAD

to

> wear pants.. well in 100 degree weather I would say ASHLEY you don't NEED

> pants.. this was before I knew what she had.. and I would ask her WHY and

she

> had no reason just I HAVE to.. well now I do understand her a littler more

> and I try to DEAL with it like this week was a FUN field trip to Sea World

> but couldn't go because she cant deal with riding on a bus and she

> cant stand to go on a highway so I let her stay home with me and I took

her

> so the mall and out to lunch.. I felt bad for her so I am not sure what I

did

> was right or if I should have MADE her go.. any input would be so

helpful..

> Thank you for listening.

January 26, 2011

Hello Lorainne, I know that Shireen will be giving you a few links to read up on as soon as she see's this post so I am just going to say hello, welcome you and tell you about our experience as its very different from alot of the bpes families here on the groupWe live in Edmonton Alberta Canada, My son Lynden is now 13 and has had 8 surgeries, he had his first surgery at 5 weeks old because his lids obstructed his view almost 100% so there was no option, another reason they did not want to wait is because he was so severe they did not want him getting the notorious "head tilt" in his neck due to tipping his head back to see.Our surgeon is only 1 of 2 but really only 1 specialist who specializes as much as he does here in Canada, we got really lucky as he lives and practices here in our city. He does not use what majority of people use which is probably the procedure you are talking about which is waiting till 2 years old to do surgery, that is the fascia lata surgery where they take a ligament from your leg etc... we used the silicone rod/sling surgery because as my doc explains it "its more pliable" plus he mentioned a few times that our climate is pretty dry here in canada (i guess thats important) that was the surgery he used for the brow lift, then Lynden had the inner corners done, using at first the YZ procedure, again when you get the links I am sure it explains the more politically correct names etc... Answers to your question, as for BPES and females and infertility, there are 2 types of BPES, type 1 and type 2, type 1 deals with the infertility and type 2 is only the facial inconsistancies, so I assume that your family passed down type 2 but of course that cannot be determined without proper genetic testing, as some people here that have had type 1 were also lucky enough to have a baby.No matter what if you have BPES because its dominant gene its 50/50 that you have a baby with BPES, but if you don't have a baby with BPES and that is your last child then BPES stops with you as its not a recessive gene so you either have it or you don't, now I apologize for the medical lingo as I am a Nurse/Nurse practitioner and heading to medical school so its hard to talk normally anymore about medical stuff lol

Tonikka & (Lynden)Edmonton CANADAPlease join us in making a difference, we are also looking for photographers internationallyto join The Maple Leaf MissionWe are on facebook & our website is HereDo you need a photographer? check out my photographyhttp://www.tonikkajphotography.comhttp://www.tonikkajphotography.com/blog

On 2011-01-26, at 8:37 AM, lorainne33 wrote:

Hello

I have just found this very interesting group and have a few questions but first will tell you a little about myself.

My name is Lorainne, I live in London, England and I am 34 years old. I had BPES as a baby and was operated on at around age 2 at Guy's Hospital in London. The doctors did a great job and apart from a slight squint (which had to be corrected later) the results were very good I think. I inherited the condition from my Dad who only has it slightly (he never had an operation). My Dad's father and sister also had the condition but his other brother and sister didn't have it. My Dad is originally from Ireland and his father had 13 brothers and sisters (!!). I will try to find out how many of them inherited it.

I am expecting a baby at the end of March so I wanted to find out a bit more about the condition and the way it is treated now in case my child (or any of my future children) have it. At the scan they told me my baby is going to be a girl.

I don't have any other symptoms/conditions mentioned on this site, only the BPES.

I have a few questions which I am hoping some of you can answer....!!!

1) I have read that some females with BPES are infertile or have a very early menopause - for what proportion of females with BPES is this true? - I conceived very quickly at age 33 and my Aunt who had BPES had a baby in her 30's too. I don't have any problems with my periods.

2) I had my eye ops in 1978 and am wondering if any medical procedures have changed since then - for example the doctors said to my Mum that I needed to wait till age 2 to let my eyes develop more but then later they said that leaving the ops this late may have caused a squint - what age did any of you/your children have the op?

3) Does anyone know what are the chances my baby will have BPES. Does it pass more through the male or female line or does it make no difference?

I will continue to look in to this site and I hope some of you can answer my questions. I will also post a photo when I have time. Of course when I have my baby (God willing) I will post a photo of her too (well I hope they are right that it is a girl as I have been given loads of pink baby clothes.....:-)

Lorainne

January 26, 2011

Hi LorainneWelcome to the site! We have found this invaluable. We have a daughter called Holly who has BPES. Holly is the first in our family and is nearly 6 years old. We attend Moorfields Eye Hospital in London as they are very experienced in this condition. due to Holly's eyelids covering her pupils they operated with temporary slings aged 18 months and last April she had her permanent slings using muscle from her leg. Sorry I don't know the technical terms! They did say if the lids cover the pupil it could damage her eyesight. However, all is fine. We also found out that depending on what type BPES Holly has is whether she will go through POF. Premature Ovarian Failure. We find this out when she reaches puberty. Also, if Holly can have children there will be a 50% chance of passing BPES down. I hope this answers your

questions. Holly is so adorable and so pretty, if a say so myself! We love Holly to bits and it hasn't hindered her one bit in anything she does. All the best with your first baby, enjoy every minute. Love Lucy (Hampshire)

From:

lorainne33 <lorainne33@...>;

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<blepharophimosis >;

Subject:

blepharophimosis New to the site!

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Wed, Jan 26, 2011 3:37:25 PM