new member

[Guest guest]

Hi Mara, I would love to hear how you dealt with all those comments...as we have a 9 Months old daughter and want to be ready to help her deal with it. She is the only one in our family to have bpes. Your imput would be much appreciated. Thanks

blepharophimosis New MemberHi Everyone-My name is Mara and I am a new member. I am a 25 year old female with BPES and was also recently diagnosed with Pre Mature Ovarian Failure (POF) which i am learning is linked to BPES. Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and 10. Obviously, I don't remember the surgeries at 1 and 2 but I have a very clear memory of my surgery at age 10. The last surgery was the one that was most successful. It changed the look of my eyes drastically. That was 15 years ago, so I can't even imagine the technology that there is now! As I have gotten older and my face has matured, my eyes definitely look bigger than they ever did. The doctor had told my parents that would happen but who really knew if it would. I can honestly say that I look the best I have ever looked.I have been reading all the messages posted and wish that this resource was around when I was growing up. I would have loved to be able to talk with others about what I was going through. I always had a ton of friends but it was the strangers that really got to me. "What's wrong with your eyes?" "Are you retarded or something"?; i would get these comments and other like it quite often. It really hurt but luckily I had a very supportive family and great friends who helped me through it definitely didn't stop me from anything...I was involved in all types of sports (soccer, softball, gymnastics, sking,etc) and always had a great attitude!So, that's a little history about me. I would love to chat with other e females who have pof or other problems conceiving as I am concerned that I will not be able to have kids. I also have a concern that there are other things linked to BPES that I am not aware of. Since I have grown up with BPES, i would also be happy to answer any questions anyone has.I have also posted photos of me on the board. When I go to my parents house, I can get photos of my from when I was younger to show the difference.

[Guest guest]

Hi Mara, We do know that Alyssa will have to be a confident person, with allot of self esteem and we will support and love her all the way. Our hope is that one day, she will be comfortable with who she is and a wonderful strong woman like yourself. I'm sure we will have more questions in the future as situations arise for us, it's great that we have you and may others for support. Thanks for that.

Regards

and family

blepharophimosis New MemberHi Everyone-My name is Mara and I am a new member. I am a 25 year old female with BPES and was also recently diagnosed with Pre Mature Ovarian Failure (POF) which i am learning is linked to BPES. Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and 10. Obviously, I don't remember the surgeries at 1 and 2 but I have a very clear memory of my surgery at age 10. The last surgery was the one that was most successful. It changed the look of my eyes drastically. That was 15 years ago, so I can't even imagine the technology that there is now! As I have gotten older and my face has matured, my eyes definitely look bigger than they ever did. The doctor had told my parents that would happen but who really knew if it would. I can honestly say that I look the best I have ever looked.I have been reading all the messages posted and wish that this resource was around when I was growing up. I would have loved to be able to talk with others about what I was going through. I always had a ton of friends but it was the strangers that really got to me. "What's wrong with your eyes?" "Are you retarded or something"?; i would get these comments and other like it quite often. It really hurt but luckily I had a very supportive family and great friends who helped me through it definitely didn't stop me from anything...I was involved in all types of sports (soccer, softball, gymnastics, sking,etc) and always had a great attitude!So, that's a little history about me. I would love to chat with other e females who have pof or other problems conceiving as I am concerned that I will not be able to have kids. I also have a concern that there are other things linked to BPES that I am not aware of. Since I have grown up with BPES, i would also be happy to answer any questions anyone has.I have also posted photos of me on the board. When I go to my parents house, I can get photos of my from when I was younger to show the difference.

[Guest guest]

Welcome Eileen,

This is a great list for parental support and info! Do you know about Dr.

Goldberg?

Tina Hendrix

[Guest guest]

Hello L, My son is 14 years old. We bought a dynovox when he was in the

5th grade. His speech teacher strongly recommended it, but the school would

not pay for it. She helped us apply to a special trust that paid for half

of the device. My point is because the school district did not pay for it

they were not at all invested in making it work for our son in his classes.

It was not easy and none of the teachers had the time to figure it out. My

advice is that you make sure you get the technical support from the school

district that is needed for you, your daughter and all of the teacher that

will be working with it. Good luck. I understand your frustrations. Lane

>From: ottmalott@...

>Reply-

>

>Subject: [ ] New member

>Date: Fri, 04 May 2001 17:45:18 -0000

>

>To introduce myself, I am a mother of 3 girls, ages 15, 11 & 4. My

>11 year old is Jacqui who has Severe Apraxia. She also has mental

>retardation and a seizure disorder.

>

>She was not diagnosed until she was about 9 years old and then it was

>only because of my research and almost forcing her neurologist to

>acknowledge more than mental retardation. She was seen when she was

>about 5-6 I think and it was suggested then, but unfortunately

>getting the schools and Doctors to act on that was impossible. She

>has a very limited vocabulary, probably about 100 words and most of

>those are only approximations. She has been learning sign language

>this last year (that only took 5 years to get in the schools) but her

>signs again are only approximations because of low fine motor

>abilities.

>

>We are just now in the process of obtaining an augmentative

>communication device. It will hopefully be the new E-talk.

>

>I have so many complaints and questions to post that I don't know

>where to begin. I am in the process of her IEP and they are

>including the augmen. device. Barely! I have a few days left before

>I need to sign it and would like some advice on what should be in her

>IEP regarding the device. This is being purchased by Children's

>Special Health Care Services and will be Jacqui's, not the schools.

>

>Also, I would like info on how much speech therapy is beneficial to

>her due to her age. I have heard that after 8 or 9, it is of no real

>benefit to have intensive therapy. Unfortunately, because of the

>late diagnosis, she has only had 1-2 hours a week in school and her

>insurance won't pay for any after the age of 6. I fought for years

>to get more in school, but was only able to get 3 hours (1 large

>group and 2 small group)for the last 2 years. In these last two

>years, her verbal abilities have greatly increased, but would it be

>worth it to fight the school for more and/or putting my family in a

>financial pitfall to get it outside the school (we would all be

>willing ifthere is a chance of benefiting). Any input would be

>appreciated. The guilt and anger I feel for myself for letting her

>get passed by for so long and not getting educated sooner on the ways

>of IEP's hinders me from thinking clearly regarding her goals and

>objectives in her IEP.

>

>L

>...my kids mom

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

" My 11 year old is Jacqui who has Severe Apraxia. She also has

mental retardation and a seizure disorder...

She was not diagnosed until she was about 9 years old and then it was

only because of my research and almost forcing her neurologist to

acknowledge more than mental retardation. She was seen when she was

about 5-6 I think and it was suggested then, but unfortunately

getting the schools and Doctors to act on that was impossible....

Also, I would like info on how much speech therapy is beneficial to

her due to her age. I have heard that after 8 or 9, it is of no real

benefit to have intensive therapy...

The guilt and anger I feel for myself for letting her get passed by

for so long and not getting educated sooner on the ways of IEP's

hinders me from thinking clearly regarding her goals and objectives

in her IEP. "

Hi " L "

Just like you don't know where to start, I don't either! First, even

though it's known by the professionals that a child can have both

mental retardation and apraxia, or autism and apraxia (or a broken

arm and apraxia for that matter) it's also known, and talked about

in the Inside Edition segment on verbal apraxia and our nonprofit

that will be airing Nationwide Aug 6 2001 (Aug 7th in the NY " Metro "

area) that many apraxic children, especially going back years ago, or

even today in locations where apraxia ignorance is running wild,

children with apraxia have been misdiagnosed and misclassified as

mentally retarded, or autistic. We have a huge support group where

we all get together and if you took a poll how many apraxic children

were misdiagnosed by neurologists at some point as PDD or autistic,

or misclassified by the school as MR, the numbers are alarming. Keep

in mind that this is not unusual for any new diagnosis. Before Helen

Keller, the deaf where considered mentally retarded. We all know the

horrible " deaf and dumb " expression.

So my first question to you is, when you say that at 5 or 6 she was

seen and that they suggested apraxia at that point, who saw her?

Do you believe that your daughter is mentally retarded to a point

where she is incapable of learning? The reason that I ask is that is

if your child is incapable of doing something she should be, then

some may say she is retarded in that area, like motor planning, or

speech. Retarded is not a phrase any of us as parents are

comfortable with, and for a good reason. There is a big difference

between a child that is not able to do something because he or she

doesn't have the capability because of some type of block, versus a

child who can't do something because he or she is not comprehending

the activity cognitively or receptively, and doesn't have the

capability mentally to ever learn the activity (like say driving a

car-or being a neuro surgeon, etc.)

Our nonprofit is outreaching to a child that is also 11 years old

that was diagnosed as apraxic that just posted to our grouplist for

the first time about a month ago. 9 years ago the child was

receiving appropriate therapy in the NY area. The mother then moved

to Virginia where the child was classified by the school first as LD

(learning disabled), then ADD, then TMR (trainable mentally

retarded), and is now in a class for MMR (IQ of below 50)

Developmental Pediatrician and Medical Director Early Intervention

and CHERAB Dr. Marilyn Agin will be evaluating this little girl

probono, and we are going to see if we can include her in part of the

clinical research for ProEFA and apraxia that will be starting soon.

I spoke to the mom this morning, and her computer is down but she

wanted me to tell you NEVER give up. She will be sending you an

email you as well as soon as she can.

As far as hearing that intensive speech therapy isn't beneficial to a

child over 9, I have a comment on that as well. I would think that

if it ends up that your child is apraxic, and not mentally retarded

then it will probably take a huge amount of work and therapy not only

for speech and motor planning issues in the body, but for educating

her and bringing up her self esteem as well. I'll let the

professionals comment on the intensity part, but I can tell you that

, the 21 year old featured on Inside Edition who says " I'm just

so glad that I can help so many people " at the end brings tears to

many people's eyes when they hear her. didn't get appropriate

therapy for apraxia until her SENIOR YEAR in HIGH SCHOOL!!!

to this day is (mis)classified by the school, but she is now

attending her third year of college at Harvard and she is majoring in

special ed, just like her mom. Her mom became such an advocate for

that she went back to school to become a special ed teacher,

so that other children won't go through what went through.

Don't blame yourself, or the ignorant. 7 to 11 years ago most of us

didn't have access to the vast amounts of knowledge and new

information on the internet to learn through like we do today. The

fact that you are online researching for your daughter shows that you

have not given up hope. I might have said a few controversial things

in this email (who? me?!) but I hope that somehow we as a group can

also help you and your family find out the correct diagnosis from

respected and knowledgably medical, speech and educational

professionals so that you can proceed with appropriate therapy. If

you prove a " change in diagnosis " to the school-you can reopen the

IEP.

Please continue your research here, in the archives, at our website

at http://www.apraxia.cc and at the many links there. And like the

one little girl's mom said, " NEVER give up hope! "

[Guest guest]

Hello!  My name is Patti Shaw and I am a speech assisstant.  I work in a very small Indian Catholic school in rural Montana.  In regards to your daughter,  I do not feel anyone has the right to tell you that after a certain age your daughter won't benifit from speech therapy!  For the most part, speech personal are so few and far between that we spread ourselves very thin and don't have the time to give the time each child really needs.  What this all boils down to is this.........FIGHT for all the time you can get for your child!  You may not get all she needs or deserves, but at least she will get something.  Stay involved with the speech therapist and do whatever it takes to find out what you can do at home.  There are MANY things and strategies that can be used in the home, from sign language to therapy for strenghthening the muscles for speech.  There is a very good source for the last one from Innovative Therapy by .  She has a program for strenthening that I am currently using in my program that shows a lot of potential.  I hope that the personel at your daughters school look at all the benefits that can come from having this child in their midst.  Don't look back and stay strong!  May God bless you and your family.

[Guest guest]

Hi Amy,my daughter is 2.7 and only 24 lbs. She is a very picky eater.

Where in Michigan are you? I'm in Ferndale.

Nicky

--- gallagher@... wrote:

> Hi everybody,

> My name is Amy and our daughter Kailee is 2 1/2 years old she was

> just diagnosis with apraxia 2 months ago. I'm learning alot on your

> website about apraxia thank you. My question is do you all have

> problems trying to feed your littles a good balance diet? Kailee

> vomited all the way till 19 months. Her weight is 25lbs now, but

> meals are a battle for us. I'm also from Michigan and like to know

> are there any support groups in Michigan? Thank you for

> returning my phone call I wish everybody hope, love and strength in

> helping our children.

>

> Amy

>

>

>

[Guest guest]

Hi Amy and Nicky,

My daughter is also extremely picky and at 32mths weighs 19 pounds. I made

zuccini bread today since bread and cheese is about the only thing she will

eat and she ate it up! I feel like I've tried about everything but welcome

any and all suggestions on feeding her a balanced diet or feeding her

anything for that matter.

Hannah

[Guest guest]

I basically give her vitamins and carnation instant breakfast mixed in her milk

for her nutrition. I try not to worry about her eating because I think she

will eat if and what her body needs and when. It's hard not to worry but I

read you shouldn't make an issue out of it or it might make it worse.

Nicky

--- Hannah Bowyer <rhbowyer@...> wrote:

> Hi Amy and Nicky,

> My daughter is also extremely picky and at 32mths weighs 19 pounds. I made

> zuccini bread today since bread and cheese is about the only thing she will

> eat and she ate it up! I feel like I've tried about everything but welcome

> any and all suggestions on feeding her a balanced diet or feeding her

> anything for that matter.

> Hannah

>

>

>

[Guest guest]

,

I have a 32mth old daugher with apraxia, hypotonia, and SI (has

mostly overcome the major SI issues). She was just diagnosed about 3

weeks ago. I found this site and immediately started on ProEFA.

Just in the almost 3 weeks she has been on it she is walking around

babbling nonsense answers to questions I ask her and as added a few

new words. Most are still understandable only by me but she is

finally trying! Pointed to a picture of her 9 yr old uncle yesterday

and said " uh uh " . I know that doesn't sound like a lot but for all

of you with apraxic children who know how excited that made me after

her being a totally silent child for so long. Anyway, back to my

point. We live in the NE Atlanta area. email me at

rhbowyer@... and I'll email you my phone number. I have been

trying to find a new speech therapist that deals specifically with

apraxia and have found one in Lawrencville that comes highly

recommended. Haven't been able to set up therapy with her yet but am

hoping too before summer is over.

,

I just wanted to tell you that I hope you have a VERY SPECIAL

MOTHER'S DAY! With all the info I have gotten on apraxia this is the

ONLY place that has recommeneded the ProEFA. I tried not to get my

hopes all up but after nearly 3 weeks I have no doubt that the ProEFA

is working wonders! My daughter for the first time today came to me

this morning and asked for bread, said it pretty clearly too. She

wanted some french toast and we had a nice breakfast without any

tantrums trying to figure out what she wanted.

Hannah , mom to (4) and LeAnne (32mths)

From: allen70041@...

MY NAME IS CHRISTINE AND I HAVE AN EIGHT YEAR OLD SON WITH ADHD AND A

TWO AND A HALF YEAR OLD DAUGHTER. MY DAUGHTER WAS DIAGNOSED WITH

ORAL/VERBAL APRAXIA TWO WEEKS AGO. I AM SO GLAD TO HAVE FOUND THIS

WEBSITE, IT GAVE ME SO MUCH NEEDED INFORMATION AND SO MUCH HOPE. I

TOOK TENAYA(MY DAUGHTER) TO THE PEDIATRICAN AT THE AGE OF TWO SINCE

SHE WAS ONLY ABLE TO SAY TWO WORDS. A LOT OF PEOPLE TOLD ME NOT TO

WORRY AND THAT SHE WOULD START TALKING WHEN SHE IS READY AND I AM SO

GLAD THAT I FOLLOWED MY GUT FEELING. SHE WAS THEN REFFERED TO A

SPEECHTHERAPIST WHO DIAGNOSED HER WITH APRAXIA. ALL OF THIS IS VERY

NEW TO ME AND I AM SO GRATEFUL FOR ALL THE INFORMATION.I AM LOOKING

FOR PEOPLE IN THE ATLANTA, GA AREA WITH CHILDREN WITH THE SAME

CONDITION TO FORM A SUPPORT GROUP.I CAN'T WAIT TO START HER ON THE

PROEFA AND I HOPEFULLY SHARE THE POSITIVE RESULTS WITH YOU.

[Guest guest]

Hi, Nicky!

If you go to the yellow box to the left of this message, click on

files, then " Success Stories " , you will find my story. For the first

three weeks of using the enzymes, my son remained gfcf. We saw a

significant improvement in all areas of behavior. This leads me to

believe that my son is sensitive to foods that we were not aware of.

The enzymes are obviously breaking down those foods in addition to

gluten and casein. The gfcf diet helped my son dramatically, but he

was still often distant and generally grumpy. He is now aware of his

surroundings, even to the subleties of human behavior in a way we

only occasionally saw before the enzymes. Most importantly, he is

happy on a consistent basis now!

Kelley

> Hi ,I've been following your messages for about a week with great

interest.I'm wondering whether to trial the enzymes with my children-

if I give a bit of background can you help?!

> My four year old son Oliver(ASD) has been gfcf for two years with

limited results.He has good understanding,no speech,limited play

skills,no really difficult behaviours but a lack of interest in

people and particularly children.

> Dietary infractions seem to result in increased stimming and

aggressive behaviour but to be honest we're never totally sure how

much the diet helps him.His bms were very loose and frequent until

about a year into the diet,now they are just about normal.I sometimes

think there may be underlying food intolerance's and wonder if the

enzymes might help with these.I'm far to afraid of regression to

challenge the diet completely at the moment.

> My youngest son Harry(3 and NT) has been GFCF since he was a year

old as his eye contact deteriorated when I weaned him at 11

months.He's fine now but again I'm worried about a challenge to his

diet without a safety net-do you think the enzymes would offer this?

Thanks so much in anticipation of any replies.Nicky(England)

[Guest guest]

:

Which enzymes are you using for your son. Right now, I'm staying with

EnzymAid, but would like to try the Peptizyde. I've tried the HNZyme,

which works great for me, but my sons couldn't tolerate it. It didn't

seem to matter how small a dose I used or what they ate it with, it was a

problem for them. Are there any other products that you've used with

good results? I'm beginning to believe that enzymes will help out a lot.

Thanks for any information.

( & Malachi's mom)

[Guest guest]

,

My son takes one of each of the HNI enzymes per meal. I have never

tried EnzymAid, so I can't give you any input there.

> :

> Which enzymes are you using for your son. Right now, I'm staying

with

> EnzymAid, but would like to try the Peptizyde. I've tried the

HNZyme,

> which works great for me, but my sons couldn't tolerate it. It

didn't

> seem to matter how small a dose I used or what they ate it with, it

was a

> problem for them. Are there any other products that you've used

with

> good results? I'm beginning to believe that enzymes will help out

a lot.

>

> Thanks for any information.

>

> ( & Malachi's mom)

[Guest guest]

Hi Dawn and welcome.

You should have received an email titled Introduction to Enzymes. If

you did not, please let me know and I will send it right away. It

gives a quick overview to help you get started and make sense of what

people are talking about.

I am so sorry to hear about your little one.

I will share my experience and hope you get something helpful out of

it. My two sons and I have been using both the Houston products,

Peptizyde and Zyme Prime, for 9 weeks now. We tried the GFCF diet for

2 months before that and then switched right over. Our story is

located in the Files under D. Here is the direct link, then

D. /files/Enzyme%

20Success%20Stories/

Enzymes are safe. The body treats them as any other protein. Infants

as young as 4 months have safely taken enzymes. This is common for

those born with cystic fibrosis and pancreatic enzyme deficiencies.

Of course, check with your doctor. I would even suspect it would help

with a preemie because their bodies are so small and underdeveloped

for their " age. "

I have had a constant upset stomach for years upon years. I drink an

enzymes in drink all day and this really helps. I used to throw up

daily and had a hard time keeping much of a meal down. Now it isn't a

problem and I feel so-o-o-o-o much better. My younger son used to gag

very easily, even when he was first born. He spit up so often and so

violently I worried about his health. This continued his whole short

life. He is now 7 and hasn't gag up anything since we started the

enzymes. He stayed at the same weight for about 2 years and was

looking rather anorexic. Since he started the Houston enzymes, he has

gained 5 pounds and has color and sparkle in his face.

I don't know if the enzymes will help your young one, but if it were

me, I sure would have a go at it. Just one opinion.

Let us know what you decide and how it goes, either way.

.

[Guest guest]

Hi!!

Welcome to the group - we are pleased you joined!! You will get lots of

wonderful information, and fantastic support on this listserv..... I

definetly think your son needs more therapy. Dyspraxic children need

direct, intensive therapy - the more you can get for him, the better. My

son (4 years) has been going 3 times a week for 30 minute sessions since he

was 2 1/2. Since your son is older he could probably handle having the

sessions longer, but he still needs them frequently. One time a week is NOT

enough and you definelty need to fight for more. It sounds like you already

know this - trust your instincts. The best advice for a mom is to trust

your instincts at ALL times - if you do not agree with a professional, trust

YOUR instincts. YOU know your son better than ANYONE!!

I have a personal website if you are interested - www.verbaldyspraxia.com.

It tells my son's story and has some good general information on it. Also,

if you haven't already looked, CHERAB (at www.apraxia.cc) is the most EXCELLENT

site for information!!

I hope this helps a little!! I am the CHERAB Outreach Coordinator for

Support Groups - where are you located, I can help find others in your area

that can help with information and support!!! Please let me know if there

is anything I do for you - I will do anything!!

Carnell

North Carolina

www.verbaldyspraxia.com

CHERAB Outreach Coordinator

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

From: <joe.midge@...>

> Hi

>

> My son has verbal and developmental dyspraxia, he is six and a half

> and I have been saying to his speech therapists that I thought he was

> dyspraxic. I was told he had global developmental delays so accepted

> this now 3 years later his speech therapist has said he is

> dyspraxic. He only says single word, single syllable sentences and

> is only 20% understandable. He only receives 20 minutes speech

> therapy a week. He uses lots of signs and we have just completed a

> sign language course along with his teacher and are teaching him

> signing. I am awaiting an appointment next week to see a

> paedatrician and have contacted the University here who train speech

> therapists, they too are interested in his therapy and feel that he

> should be having more, so we are awaiting a response from them,

> having just videoed and sent it down to them.

>

> Should he be having more speech therapy?

[Guest guest]

Absolutely! He should be 100% intelligible by this age. I'd recommend that

he receive at least 3-4 sessions a week with a strong home therapy component

along with oral motor therapy. There are many things you can do at home with

eating/toothbrushing/facial massage and modeling/facilitation of speech.

This is a very important part of your child's development, a half hour of

direct service is not going to hurt but he need substantially more. Good

luck I hope that you can receive the treatment your son needs. Best of luck!

Jena Piekarski

Speech Langauge Pathologist

Boston, MA

>My son has verbal and developmental dyspraxia, he is six and a half

>and I have been saying to his speech therapists that I thought he was

>dyspraxic. I was told he had global developmental delays so accepted

>this now 3 years later his speech therapist has said he is

>dyspraxic. He only says single word, single syllable sentences and

>is only 20% understandable. He only receives 20 minutes speech

>therapy a week. He uses lots of signs and we have just completed a

>sign language course along with his teacher and are teaching him

>signing. I am awaiting an appointment next week to see a

>paedatrician and have contacted the University here who train speech

>therapists, they too are interested in his therapy and feel that he

>should be having more, so we are awaiting a response from them,

>having just videoed and sent it down to them.

>

>Should he be having more speech therapy?

\

[Guest guest]

He should absolutely be receiving more than one 20 minute session weekly.

Apraxic children need one on one intensive therapy to help them cope with

their apraxia. The minimum most experts see as appropriate is three times

weekly. You really need to try to get your school district to give him some

additional therapy. Good luck.

Janet

[Guest guest]

hi Pam, welcome to our group. I have a family member that has scleritis, and

was on high doses of prednisone to control it. The side effects weren't good,

especially the weight gain. A specialist injected the eye with steroids and

the oral prednisone was tapered off. He was on a lot of different arthritis

meds with no sucess. The only thing that put the scleritis into remission was

the injections in the eye. It sounds bad, but it is not painful. My mother

also had eye problems similar, and was put into remission with steroid

injections in her eye. Please consult a specialist and see what your options

are. Prednisone can have very serious side effects. It also must be decreased

by slowly tapering off. Abruptly stopping prednisone is very dangerous.

Not having a prescription plan is hard when you have diseases that require

expensive medications.

There are many organizations that help with getting you the meds you need.

There are several links here that explain how you can get meds directly from the

manufacturer free or at a reduced cost:

http://rheumatoid.arthritis.freehosting.net/Drugs%20 & %20testing.htm

I will post some links on scleritis for you to read.

a

On Sun, 16 December 2001, " pamida " wrote:

>

> <html><body>

>

>

> <tt>

> Hi,<BR>

> I am a new member and thought I would introduce myself. My name is <BR>

> Pamm I am 48 years old married ( for 13 years ) and have two grown <BR>

> sons from a previous marriage I also have 2 grandsons and 1 <BR>

> granddaughter and another grandchild on the way.<BR>

> I have fibromyaliga, osteoarthritis, rheumatoid arthritis and <BR>

> hepatitis C so I have quite a few things wrong with me that makes <BR>

> being treated a challenge as far as medications I can take ( since <BR>

> most meds go through the liver) I have a problem with my eyes I have <BR>

> scleritis ( probablys spelled that wrong) and it won't go away. I went <BR>

> to the eye doc twice but the drops he gave me did not work. I then was <BR>

> refered to an internal med doc who gave me prednisone he told me the <BR>

> scleritis is due to the arthritis as soon as I stop the prednisone <BR>

> within 24 hours my eye gets bad again. My visison is now being <BR>

> compromised due to the constant sore I seem to have on my eyeball. I <BR>

> am wondering if anyone else has this problem I read that is is not a <BR>

> common problem to have. I was taking 5 mg prednisone twice a day but <BR>

> my eye did not get better so I am now up to 20 to 50 mg a day just to <BR>

> keep my eye from getting any worse ( I am taking the prednisone on my <BR>

> own now as the dose the doc gave me was not working) I have to make <BR>

> another appointment to see if the eye specialist can do something for <BR>

> me. I know I should not be doctoring on myself but I don't have money <BR>

> to keep running back to the doctor when they don't seem to be doing <BR>

> anyhing for me. <BR>

> We do not have health insurance at the moment due to my husband had to <BR>

> find a new job so all I have in Medicare. My doctor did put me on <BR>

> plaquenil for the arthritis but at the moment I just don't have the <BR>

> $50.00 a month for the medication so I will have to wait until we get <BR>

> insurance again and have a prescription card.<BR>

> Anyway I just wanted to introduce myself and ask about the eye problem <BR>

> I just dont' know what to do this has been going on for 6 months now.<BR>

> Thanks<BR>

> Pamm<BR>

> <BR>

> </tt>

>

> <br>

>

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[Guest guest]

Welcome to the group Pam. I am sure it will be beneficial to you. I know it

has been for me

Colleen

PS...Gotta study for those finals.

>From: " pamida " <pculp13@...>

>Reply-

>

>Subject: [ ] New Member

>Date: Sun, 16 Dec 2001 23:28:13 -0000

>

>Hi,

>I am a new member and thought I would introduce myself. My name is

>Pamm I am 48 years old married ( for 13 years ) and have two grown

>sons from a previous marriage I also have 2 grandsons and 1

>granddaughter and another grandchild on the way.

>I have fibromyaliga, osteoarthritis, rheumatoid arthritis and

>hepatitis C so I have quite a few things wrong with me that makes

>being treated a challenge as far as medications I can take ( since

>most meds go through the liver) I have a problem with my eyes I have

>scleritis ( probablys spelled that wrong) and it won't go away. I went

>to the eye doc twice but the drops he gave me did not work. I then was

>refered to an internal med doc who gave me prednisone he told me the

>scleritis is due to the arthritis as soon as I stop the prednisone

>within 24 hours my eye gets bad again. My visison is now being

>compromised due to the constant sore I seem to have on my eyeball. I

>am wondering if anyone else has this problem I read that is is not a

>common problem to have. I was taking 5 mg prednisone twice a day but

>my eye did not get better so I am now up to 20 to 50 mg a day just to

>keep my eye from getting any worse ( I am taking the prednisone on my

>own now as the dose the doc gave me was not working) I have to make

>another appointment to see if the eye specialist can do something for

>me. I know I should not be doctoring on myself but I don't have money

>to keep running back to the doctor when they don't seem to be doing

>anyhing for me.

>We do not have health insurance at the moment due to my husband had to

>find a new job so all I have in Medicare. My doctor did put me on

>plaquenil for the arthritis but at the moment I just don't have the

>$50.00 a month for the medication so I will have to wait until we get

>insurance again and have a prescription card.

>Anyway I just wanted to introduce myself and ask about the eye problem

>I just dont' know what to do this has been going on for 6 months now.

>Thanks

>Pamm

>

Check out my website at: http://www.geocities.com/callyanne21/

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[Guest guest]

Welcom Pamm.

I very seldom post but I read alot. You will receive alot of answers to some

of your questions and if you are like me, you want to hear from someone who's

been there or done that.

I have had RA for 22 years, I certainly thought I was the only one out there

until I met these wonderful people on-line who are experiencing the same

difficualities as I. and some much worse.

Hang in there, you are not alone. You will be in my prayers as are the rest

of the group.

Judy in Indy

[Guest guest]

Thanks I will make another appointment with the eye specialist I have

gained 20 pounds and that is enough to make me go back for some kind of

help on my eye lucky for me I am tall so the weight does not show as

much if I were short. Since I have chronic hepatitis C I am limited to

what kind of medications I can take I am not sure if prednisone is bad

or not on my liver all I know is I am tired of this eye acting up.

I know I was not able to find alot on scleritis I know it is not that

common that is how the doctor decided I have RA I was tested several

years ago for RA but the test came back that I did not have it but the

doctor said sometimes you will have it even though the test comes back

that you don't. I just want the eye to get better my eyes were the only

thing left on me that were good I had 20/20 vision now I don't which

upsets me I did find out I also have cataracts to!! Gosh I hate getting

old *lol*

Also we don't qualify for the free or reduced meds as my husband makes

to much money we are in debt big time over my medical expenses and taxes

we owe so there just is no money left for medications if it were a med I

had to have to live then that would be a different story most of the

meds I need are just for pain or my asthma I work of a vet so some meds

I can get there such as my prednisone so that helps.

Pamm

[Guest guest]

Welcome Pamm. I'm Debbie. I'm fairly new here myself and seeking answers

as well. I am not yet definitely diagnosed, but my doctor is pretty sure I

have RA. This group has been so helpful and friendly. Glad to meet you and

hope to get to know you better.

Debbie Mc

[ ] New Member

Hi,

I am a new member and thought I would introduce myself. My name is

Pamm I am 48 years old married ( for 13 years ) and have two grown

sons from a previous marriage I also have 2 grandsons and 1

granddaughter and another grandchild on the way.

I have fibromyaliga, osteoarthritis, rheumatoid arthritis and

hepatitis C so I have quite a few things wrong with me that makes

being treated a challenge as far as medications I can take ( since

most meds go through the liver) I have a problem with my eyes I have

scleritis ( probablys spelled that wrong) and it won't go away. I went

to the eye doc twice but the drops he gave me did not work. I then was

refered to an internal med doc who gave me prednisone he told me the

scleritis is due to the arthritis as soon as I stop the prednisone

within 24 hours my eye gets bad again. My visison is now being

compromised due to the constant sore I seem to have on my eyeball. I

am wondering if anyone else has this problem I read that is is not a

common problem to have. I was taking 5 mg prednisone twice a day but

my eye did not get better so I am now up to 20 to 50 mg a day just to

keep my eye from getting any worse ( I am taking the prednisone on my

own now as the dose the doc gave me was not working) I have to make

another appointment to see if the eye specialist can do something for

me. I know I should not be doctoring on myself but I don't have money

to keep running back to the doctor when they don't seem to be doing

anyhing for me.

We do not have health insurance at the moment due to my husband had to

find a new job so all I have in Medicare. My doctor did put me on

plaquenil for the arthritis but at the moment I just don't have the

$50.00 a month for the medication so I will have to wait until we get

insurance again and have a prescription card.

Anyway I just wanted to introduce myself and ask about the eye problem

I just dont' know what to do this has been going on for 6 months now.

Thanks

Pamm

[Guest guest]

Thanks so much for the warm welcome it is so nice to be part of the

group. I am so glad there are groups like this for people with medical

problems. I have so many different medical problems it makes it hard to

get the proper treatment. Since I have hepatitis C I am not able to take

alot of medication but I am not going to give up hope that someone can

eventually help me get some relief. I know I will get alot of good

information from this list and again thanks so much for makig me feel so

welcome.

Pamm

[Guest guest]

welcome pamm, people here are great. i'm kathy 42, my son dan 18. hope your

dr gets you some relief soon. kathy in il

[Guest guest]

Welcome Pamm, you'l love it here. You'll find valuable info and make

lifelong friends. We also have a lot of fun here. I have been here sonce

January 2000. Love it! I have RA and FM and weakened bones from Prednisone.

Be careful about how much you take. It can help your eye but it can make

your bones brittle. Be sure and take calcium along with that. Anyway, I am

working on year 20 with this disease. I was diagnosed at age 13 with

Juvenile RA. I have a severe case and am bent, crooked and crippled. But

I have come to terms with this disease and have a good life. If you have any

questions, please ask!

~Rainy Sue

rainysu@...

" Proud to be an American! "

http://www.geocities.com/Paris/Metro/3137

<My images are finally hooked up!>