.....

[Guest guest]

Hi Joyce,

Thanks so much for replying, its nice to hear from someone in my neck of the

woods. Someone gave me Dr. Deborah Baker, that does chelating near our area

(Burlington, On.). I will be contacting her on Monday for a consultation. She

does the Dan Protocol which I think is what I am mostly interested in. My son

is 5 years old, was diagnosed at 3. He is in very good health, unlike myself, I

was diagnosed in my twentys with colitis, (my Mother made sure I went to the

dentist every six months, in my teens )

I have been on remission for a good part of my life, except when I started going

to the dentist again, I have 9 fillings, in which 2 had to be replaced. During

this time I became pregnant with my son, soon after a induced delivery, I

started getting very sick, I had to go for a complete large bowel removal, when

they sent my bowel for analysis, the doctor advised me I didn't have colitis,

but crohns disease, terrible news. Well enough of my sob story, I am feeling

much better now, focusing all my energy on my son.

If you have any info I can use or services around our area, please forward them.

Thank YOU, Lise

[ ] New to List ...

> Hello,

>

> Interested in doing chelating therapy with my 5 year autistic son.

> Trying to find a doctor near Toronto Canada, that does chelating with

> DMSA, does anyone know of a doctor in my area?

>

> Is there any testomonies of autistic children showing signs of

> promise with this chelating therapy?

>

> Lise

>

>

>

>

> =======================================================

>

[Guest guest]

Yes Patty,

we're all waiting on pins and needles. Hope all is ok. Laurie

[Guest guest]

Hi ....

sorry to have confused you with talk of beach houses...etc....

Joan is the one with the beach house...she lives in North Jersey and has a beach house in Ocean County....

I live full time in Ocean County...but about 40 min inland....used to live in the same town as her summer house....only a couple blocks away..although that was yrs ago...and she was only a school girl...while I was married and starting my family.....

but we have become friends and get together in the summer when we can...

I love the beach....but don't get to go very much anymore...oh well...

take care and talk soon

Luanne Ty's mom

[Guest guest]

Hey again ...

here is a web site for you to understand Interferon.....

www.hepatitis-central.com

then go down and click on Drugs....you will have alot to read about Interferon.....

either email this info to your mom or print some of it out....she needs to understand what is going on with her....and what is not....

Luanne Ty's mom

[Guest guest]

Hi ,

Thanks so much...I'm usually the positive one...this just has me beat

down.

Joan

[Guest guest]

Hi me again. You may want to look into the low tone

further if they start falling begind in milestones. Having the low

tone formaly diagnosed meens that they are eligable for services

threw Regional Center like PT, OT and other early interventions.

Keep us posted on there progress. has improved so much in the

last three weeks with PT thanks to the Regional Center its not even

funny. Before she still had the, what I like to call, bobble head.

From what I was told they are saposed to stop that bobble head thing

by the time they are three months old. actualy sat up on my

lap alone for 45 seconds and was even using her hands to stabalize

herself. Best of luck to you.

&

> > >

> > > >Hello to all, My husband finaly got his cast off today and he

is

> >in

> > > >a walking cast. This means he is closer to going back to

work, and

> > > >that meen's I am closer to being a SAHM. WHOOO-HOOO. is

> >still

> > > >doing realy well in her DOCband and is going to the Ortho

tomarrow

> > > >for her one week checkup. She is also getting so much better

with

> > > >her low tone that even the PT comented on how well she is

doing.

> >My

> > > >hubby has been taking care of for the last two months at

> >home.

> > > >Things are finaly going so well I have to pinch myself to make

> >sure

> > > >its not a dream.

> > > >

> > > >

> > > >mom to

> > > >-ONH

> > > >-Central Hypotonia

> > > >-Torticollis

> > > >-Plagiocephaly (DOCbanded 11/18/04)

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >For more plagio info

[Guest guest]

I was actually referred to regional center by their craniofacial doctor,

but it was given to me in a casual way, so I didn't think much about

it. I think I will give them a call.

Thanks!

At 12:52 AM 11/24/2004 +0000, you wrote:

Hi me again. You may

want to look into the low tone

further if they start falling begind in milestones. Having the low

tone formaly diagnosed meens that they are eligable for services

threw Regional Center like PT, OT and other early interventions.

Keep us posted on there progress. has improved so much in the

last three weeks with PT thanks to the Regional Center its not even

funny. Before she still had the, what I like to call, bobble head.

From what I was told they are saposed to stop that bobble head thing

by the time they are three months old. actualy sat up on my

lap alone for 45 seconds and was even using her hands to stabalize

herself. Best of luck to you.

&

> > >

> > > >Hello to all, My husband finaly got his cast off today

and he

is

> >in

> > > >a walking cast. This means he is closer to going back

to

work, and

> > > >that meen's I am closer to being a SAHM. WHOOO-HOOO.

is

> >still

> > > >doing realy well in her DOCband and is going to the

Ortho

tomarrow

> > > >for her one week checkup. She is also getting so much

better

with

> > > >her low tone that even the PT comented on how well she

is

doing.

> >My

> > > >hubby has been taking care of for the last two

months at

> >home.

> > > >Things are finaly going so well I have to pinch myself

to make

> >sure

> > > >its not a dream.

> > > >

> > > >

> > > >mom to

> > > >-ONH

> > > >-Central Hypotonia

> > > >-Torticollis

> > > >-Plagiocephaly (DOCbanded 11/18/04)

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >For more plagio info, go to

www.plagiocephaly.org/support

> > > >

[Guest guest]

,

I took our son, Micah, to preschool this morning for

the very first time. I told his teachers that he was

born with BPES and had surgery last year. They asked

if he had any limitations, anything they should be

concerned about, etc. And you know what I told them?

" No! He's a perfectly normal little guy. He's happy,

he's fun. Enjoy him! " They smiled and that was that.

It's all about perception. It is all about attitude.

It is all about the way WE raise our children to look

at themselves and others.

Should I teach Micah to worry about being teased about

his eyes? Or about being adopted and not looking like

his parents? Or that his children may be born with

BPES one day? I refuse to do that. I equip him with

things he can say in response to questions or comments

about his eyes. I teach him that adoption is

something to be celebrated and so are our differences.

And when the time is right I will explain the medical

facts of BPES and the chance that his biological

children may inherit it and the chance his daughters

may experience infertility. But I will not present it

in a light of doom and " psychological distress " . I

will tell him the facts and the various options

available to him and will let him know we will be here

to support him.

Your doctors may have recommended you be careful with

your daughter because of the psychological impact BPES

may have on her during adolescence because they sensed

YOUR attitude toward it.

As Min stated, we have all read everything we can get

our hands on regarding BPES. We have all talked to

NUMEROUS doctors. And never once have I encountered a

doctor (be it pediatrician, ocular plastic surgeon,

pediatric ophthalmologist, adoption social worker,

etc.) who mentioned the " psychological effects " of

having BPES. And when Micah came home I looked

through every pediatric book I have (and I have a TON)

and couldn't even find BPES mentioned let alone

statistics on it.

I would love to hear from other women on this list who

have BPES about when their parents discussed with them

the possibility of infertility and how they approached

it. I do not think this is something I would do in

early adolescence. Anyone with experience in this

area please share with us. I think it could be very

valuable information.

, I sincerely hope you do keep a positive attitude

at home.

I agree this list is a place for support. If someone

posted today crying and upset because their child had

just been born with BPES I think we would all

understand. But then we would be right there to

encourage and support them and to reassure them that

their child will be fine! That is what we need - a

ear to listen and ENCOURAGEMENT.

April

--- luis ortega <lortega57@...> wrote:

> Hi,

> I am afraid that you have misunderstood me. You of

> course can disagree with

> me, perhaps you have not any psychological

> disturbance. I hope that my

> daughter won’t have either. But some people may have

> it. I have read a lot

> about BPES and I have talked with many physicians

> about BPES. All of them

> have recommended me to be careful with my daughter

> because the psychological

> impact than BPES may have on her during adolescence.

> I know that there are a

> lot of girls and women in the group. I am sure, that

> specially for them, not

> only cosmetics but some aspects of their

> reproductive life (POF, menstrual

> alterations) may cause psychological stress and be,

> sometimes, very hard for

> them. World Health Organisation about the state of

> health states that health

> is not only physical, it is also psychological. For

> instance if a little boy

> or girl is suffering because he or she is being

> teased or if a woman is

> suffering because she can not get pregnant, they are

> in psychological

> distress and they are not in a state of health. That

> don’t make us worse;

> that make us human.

>

> If you find that I am sending negative messages you

> are wrong. I am writing,

> as other members of the group, of my feelings. If

> all the facts about BPES

> were marvellous: if we wouldn’t be worried about

> surgeries, photophobia,

> infertility, and so on, this group wouldn’t exist,

> because it would not be

> necessary. We are here to help each other, to

> comfort each other and to be

> sympathetic with other people that is like us. I

> like this group a lot, it

> has helped me (and I hope that it will help me and

> more people in the

> future), I remain positive for my daughter and for

> myself, that is the

> reason why I prefer to face the real facts about

> BPES. Of course we can

> choose how to manage our emotions. But emotions are

> that, and many times

> they are really difficult to manage, specially in

> some times of life as

> adolescence. To manage them correctly we must know

> well the storm of

> emotions and psychological hurdles that our sons and

> daughters must go

> through.

>

> I have read that BPES is more common among Asians in

> a book of paediatrics.

> I have not the reference now, but I will look for

> it. Nobody of us is a

> statistic number, but in epidemiological terms all

> of us are numbers, the

> incidence and prevalence of diseases, malformations

> and so on are measured

> in this way, and as you know the incidence and

> prevalence varies in diverse

> ethnic groups. I am sorry if you have felt affronted

> by my words.

>

>

>

>

>

> >From: " minnielin202 " <minnielin202@...>

> >Reply-blepharophimosis

> >blepharophimosis

> >Subject: blepharophimosis Re: BPES does not

> discriminate....

> >Date: Fri, 06 Jan 2006 18:56:29 -0000

> >

> >Hi ,

> >I would also like to read this statistical report

> stating that BPES

> >is more common among Asians. I'm Korean and I

> believe that I am not

> >a statistic number.

> >

> >You've brought up true facts in that in some women,

> BPES can cause

> >infertility. However, I must disagree with you in

> stating that BPES

> >causes psychological distrubances. How so?

> >

> >Are you saying that the members of this group have

> pyshological

> >disturbances? Are you implying that we all have

> altered health

> >states due to our small eyes?

> >

> >I find that you are sending negative messages and

> discouraging

> >members who have worked hard to remain strong and

> positive for their

> >children and for themselves. We are all going

> through the same

> >emotional roller coaster rides due to BPES in our

> lives but that

> >does not mean, nor will it ever mean, we are all

> psychological

> >disturbed.

> >

> >We all have choices in life. How we choose to

> manage our emotions

> >are up to us.

> >

> >People will stare. Children will get teased. It

> is up to us how we

> >choose to manage them, without any psychological

> disturbances.

> >

> >

> >

> >

> > > > >

> > > > > Dear Minnie,

> > > > > I also applaud you! Thank you for

> all you wrote. If

> >you've

> > > >read anything that I've written about my

> daughter, (20),

> > > >you'll know that I've only been on this site

> since early November

> >and

> > > >my daughter is my life. She's beautiful,

> talented, smart, and a

> > > >devout Christian who is trying very patiently

> to wait for the

> >right

> > > >man to come along and love her for who she is

> inside and outside,

> > > >too. Her surgeries were done at age 5 and six

> months later when

>

=== message truncated ===

__________________________________________________

[Guest guest]

I'm glad she is doing so well. Misha did great too.

And we haven't had one ear infection since the tubes

went in. We are on the other end of it now - if they

don't fall out by this summer we'll have to go back in

to have them taken out. (Our ENT doesn't like for

them to be in over two years.)

April

--- Sharon A <besilly12000@...> wrote:

> is happy as can be ...it is truly like

> nothing happened...she is doing great.

> BUt I tell you one thing at 7 months they are

> sharp! She knew on the operating table that

> something was happening. The dr said to me ...as

> soon as you sat her on the table did you see that

> look she gave you ...of course i did what any mother

> would do...i cried. BUt she was out in seconds and

> the whole procedure took maybe 5 minutes. She is

> running around in her walker all day...Thanks for

> all the prayers :-)

>

> april Eisele <aprileisele@...> wrote:

> First on the eyebrow incisions - Micah's surgery

> was

> just 11 months ago and you can't see the eyebrow

> incisions unless you REALLY look for them.

>

> Second - Sharon how is ? My Misha had tubes

> put in her ears when she was a baby too.

>

> :)April

>

> --- Sharon A <besilly12000@...> wrote:

>

> > the eye brow i can live with, in the boys you

> can't

> > even see it and i assume one she grows hair you

> > won;t either .....it is when the open by the side

> of

> > their nose ( forget what that is called) that

> scars

> > more in my kids ...and is more noticable. NOt sure

> i

> > will have that one done with til she is

> much

> > older....they aren;t talking that yet anyway...it

> is

> > hard ..these are our pride and joy and we only

> want

> > what is best for them ...and we truly aren;t sure

> > what that is at some points.

> >

> > has surgery for her ears on tuesday

> ..that

> > is my worry as of now :-(

> >

> > bethgordon03 <bethgordon03@...> wrote:

> > Sharon

> >

> > My knees get weak everytime I think that in 3

> years

> > the Dr, will

> > extract muscle from her leg, I don't want to have

> it

> > done this way.

> > At the same time, I have come to know and trust

> her

> > doctor, we have

> > also seen Dr Iliff at Hopkins and he would use

> > cadaver tissue (not

> > crazy about that either). I don't want her to have

> > this done and

> > redone, it's too hard on all of us. I will keep

> > looking and

> > thinking. we have time. I didn't have slings, I

> just

> > had the muscles

> > tightened. My ptosis wasn't that severe I guess,

> > because this

> > procedure worked for me. Now at 35 my right eye is

> a

> > tiny bit lower.

> > I think it started after pregnancy, truthfully.

> >

> > I don't have scarring anywhere, Lily has scars

> above

> > her brows and I

> > hate it.

> >

> > I understand, I don't think you are telling me

> what

> > to do. Even if

> > you did, I would think it through on my own. No

> > worries. I am glad

> > to hear your opinions and expereiences.

> >

> >

> > > > >>I am concerned about this, also, Lily's

> doctor

> > wants to use

> > the

> > > > >>muscle, he says the silicone will absorb.

> > Another doctor at

> > s

> > > > >>Hopkins said he would use cadaver muscle...

> My

> > dad and I don't

> > > > >

> > > > > have

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hi ...

I know some people with r/a have normal blood tests. I've talked to quite a few and it's so hard to get anyone to take them seriously if the blood work shows everything is fine.

I am glad that you're going to a second rheumatologist. It's good because he may know or see something the first hasn't. Have they done rheumatoid factor? if so, that probably shows normal also. AUGH!! It's maddening.

There are so many different meds out there. Maybe you can try the self injectable. The one that worked for me was enbrel...but liked the enbrel that you mix yourself. Doesn't have the burn to it. I had to go off of that because of mouth sores.

I hope your new rheumy can help you feel better. Do you take pain meds? I am on darvocet for pain.

Hugs..a

[Guest guest]

Hi a, I was given Ultracet for pain but it keeps me awake at

night and spacey during the day. No pain relief, just spacey and in

pain. I am in the middle of a very stressful job contract(I do

computer drafting for an Engineer),I can't afford to be spacey. I

know the stress is a big part of this flare up, but I have to live

with it for now. I hope the appt. tomorrow is helpful too. Thank you,

>

> Hi ...

>

> I know some people with r/a have normal blood tests. I've talked

to quite a

> few and it's so hard to get anyone to take them seriously if the

blood work

> shows everything is fine.

>

> I am glad that you're going to a second rheumatologist. It's good

because

> he may know or see something the first hasn't. Have they done

rheumatoid

> factor? if so, that probably shows normal also. AUGH!! It's

maddening.

>

> There are so many different meds out there. Maybe you can try the

self

> injectable. The one that worked for me was enbrel...but liked the

enbrel

> that you mix yourself. Doesn't have the burn to it. I had to go

off of

> that because of mouth sores.

>

> I hope your new rheumy can help you feel better. Do you take pain

meds? I

> am on darvocet for pain.

>

> Hugs..a

>