Introduction

[Guest guest]

Audrey,

Welcome and keep up the great work!!

[Guest guest]

Welcome to the list Tammy!!!!!!!!

In a message dated 8/11/99 8:22:54 PM Eastern Daylight Time, scottam1@...

writes:

<<

Hello all my name is Tammy I am 31 years old. >>

[Guest guest]

Hey Tammy,

Welcome to the list!!!

Jen

[Guest guest]

You know, I have wondered the same thing.......

In a message dated 8/14/99 10:12:39 AM Eastern Daylight Time,

nitag@... writes:

<< I can't help but wonder how many people really end up making this a true

way of life. It seems that I've heard an awful lot of people say they used

this diet and lost weight, and then went off it and gained back weight. I

hope this isn't going to be just one of the yoyo dieting steps in my life. I

honestly think I can maintain this type of eating but I wonder if anybody

other than Dr. ATkins has done it for that length of time.

Nita

>>

[Guest guest]

I can't help but wonder how many people really end up making this a true way of

life. It seems that I've heard an awful lot of people say they used this diet

and lost weight, and then went off it and gained back weight. I hope this isn't

going to be just one of the yoyo dieting steps in my life. I honestly think I

can maintain this type of eating but I wonder if anybody other than Dr. ATkins

has done it for that length of time.

Nita

http://ni3d.homestead.com/nitaspages/nitasbirdsheet.html

Nita's Nest, with " Beginning with Birds " basic care sheet.

Fw: Introduction

Hello!

My name is Heidi and I started low carbing again last Monday. My energy level

has returned!

I low carbed oct-til about Jan. of 99 and somehow fell off the wagon. I

gained 11 lbs. since then and

so far have taken off 2 of those 11-

I enjoy all of your helpful hints, tips, etc.

I'd like to know how many of you used Atkins products-Shake mix during

induction or any other protein powder-and had success-I called the 800# on the

can of Atkins shake mix and was told that I could use it during induction as

l0ng as i counted the carbs- same goes for their advantage bars-use during

induction or not.. Terrible or not, but I trust you peoples opinion more than

the little girl that answered the phone at Atkins.

Heidi

144/142 1/4/140 (first goal)/135

djkppl@...

[Guest guest]

Hi Jim,

Welcome to the group. I'm sorry to hear about your wife's eye problems. In

general, symptoms peak in about 6 months and then spontaneously resolve, but

after RAI they often persist longer. Usually in the range of two years, but

some doctors say problems can persist for up to 5 years.

The problem is that the dying thyroid cells caused by RAI release

autoantibodies which trigger the eye involvment. Depending on how high her

original antibody levels were and the status of her immune system now, the

congestive infiltration can persist, especially if her RAI dose was high.

There are two causes of the eye disease, a congestive infiltration (white

blood cells, protein, collagen) caused by the immune involvement, and a

spastic type of eye disease caused by excess thyroid hormone. The latter type

dissipates when thyroid hormone levels return to normal. The former worsens

as one goes hypo because of the antibodies and the chemicals known as

cytokines which are released in the immune process. Also, the many nutrient

deficiencies caused by metabolic changes play a role.

Patients who have been successfully treated for their eye disease will no

doubt share their stories, but there are a number of different treatment

approaches including surgery, performed in a stepwise fashion. In the

meantime it would also help for Carmen to follow a nutrient rich, low sugar,

low fat diet to correct deficiencies and take vitamin/mineral supplement and

do everything she can to balance her immune system, particularly stress

reduction and exercise like yoga and tai chi. If by chance, she smokes, she

may need to cut down as smoking will also exacerbate the eye symptoms. Best

to you and keep us posted. Elaine

[Guest guest]

Many thanks to Elaine and for the welcome and the useful

information. I/we shall trawl the archives for relevant postings. I

have printed out both messages for Carmen to read. It's empowering

to find out exactly what is happening in one's body.

all the best, Jim

[Guest guest]

Jim & Carmen,

I'm so sorry to hear about your Graves woes but you've come to the right

place. A few thoughts on the eyes:

1. Surgery. Any corrective surgery should wait until the disease has run

its course, which, as Elaine mentioned, can take from six months to two

years (average) and sometimes as long as five. Currently, I'm in my second

year with a now moderate case of TED. My opthalmologist is recommending

surgery next year to correct my continuing and annoying (but not

debilitating) lid lag.

2. I know referred you to an archived post that discussed eye symptoms

but I'll emphasize here how much relief I got from taping my eyes shut

before going to bed at night. If her lids are retracted and eyes open

wider, the eyes may not be shutting completely at night. This causes the

cornea to dry out and causes the gritty, painful sensation.

Of course, you should check this out with the eye doctor, but it certainly

can't HURT Carmen to try taping and see if it offers relief from the pain.

When I taped my open eye I was astounded at how much better I felt the next

day! It was well worth it.

If you're interested in taping instructions, I have some from the National

Graves Disease Foundation and will post them on this list.

3. I recently had silicone tear duct plugs put into my tear ducts. These

tiny plastic plugs keep your tear ducts open and allow more moisture to come

into the eye. Much of the eye pain can be caused by dryness. Perhaps this

too is something to check with your doctor about.

4. As for alternative treatments, some people report that halting caffeine

and drinking green tea helps. Please visit the following web site:

http://ithyroid.com

This has a section on TED and has some advice; you'll find my story there

too. While I have learned much from the info at this web site, conventional

medical practitioners and advocates believe that this site is just shy of

dangerous; the web site manager believes in nutritional responses to Graves

and warns people away from RAI and other conventional treatment. Just so

you know it is a controversial web site.

5. On having another child--please talk to your ob/gyn and opthalmologist

about this. When I went to the Mayo Clinic (the best Graves place in the

U.S) the opthalmologist I saw told me that in this clincial experience,

women who already have TED and then become pregnant *invariably* experience

more severe eye problems post-partum. He told me that if I wanted another

baby, I should anticipate that my moderate TED would develop into severe TED

after another child and possibly require more elaborate surgeries. I know

this is a horribly discouraging thing to hear and I'm sorry. However, I

believe having all the information possible is the best thing for us. There

is very very very little information on pregnancy and TED, barely on studies

have been done. However, the opthalmologist I saw specializes in TED at the

Mayo Clinic and is arguably one of the nation's authorities on the disease

and the information he gave me is based solely on his experience. He

pointed out to me that because he is such an authority, he tends to see the

worse cases and perhaps this explains why every woman with TED worsened

after pregnancy.

Now, if your TED is already quite bad, perhaps this won't be an issue. For

me, my illness was improving and the thought of taking the risk of worsening

it again was frightening. Also, the opthalmologist didn't say if one's risk

of worsened TED post-partum decreased after the disease has run its course:

for example, if you and Carmen have time to wait two years for another baby

will she still be at risk for TED again?

Please feel free to email me privately if you've more questions. I

developed Graves post-partum following the birth of my second child and also

developed TED. I've given another pregnancy a great deal of thought and

have also learned a lot about coping with the eye disease. I'm happy to

reply via the list or in private.

B

introduction

>

>

> Hi, my name is Jim and my wife Carmen has Graves. I am British,

> she is Spanish and we live in Utrecht, Holland. Carmen is not as

> internet-oriented as me, which is why I've joined this list instead of

> her. However, I think she may be tempted when she sees the great

> information and support available here.

>

> We have a beautiful 19-month-old daughter, . Carmen never fully

> recovered her old vitality after the birth. Her GP initially diagnosed

> iron deficiency, but it was obvious after a while that iron

> supplements weren't helping. Of course you have to give them a few

> months to work, so more time passed without the proper diagnosis being

> reached. She eventually returned to her GP in January of this year and

> was diagnosed as hyperthyroid - with classic symptoms as it turned

> out, including rapid heartbeat and exhaustion after any effort.

>

> Thinking back, Carmen may have been suffering a milder form of the

> disease since her teens.

>

> We ordered literature from the Dutch Thyroid Disease Foundation and

> read it all. She was prescribed beta blockers to slow her heartbeat

> and hormones (I'll have to check which). The endocrinologist

> recommended radiation treatment (is this what you guys call RAI?) as

> the most effective option, seeing as we wanted to have at least one

> more child. Carmen was scheduled to have the treatment in March, but

> throughout February her condition worsened rapidly, to such an extent

> that she was completely incapable of climbing stairs, changing a

> nappy/diaper or anything. The dosage of beta blockers was doubled, and

> this eventually reduced the worst of the symptoms.

>

> The radiation

> treatment in March was a doddle - we were back outside the hospital 20

> minutes after entering! Carmen was taken off beta blockers. However, by

late April it became clear that

> the thyroid was swinging over to hypo. Finally, after the hormone and

> dosage was changed several times, her hormone level was normal. She

> still gets tired very easily, but is now functioning more or less

> normally.

>

> However, one aspect that is really concerning us now is her eyes. She

> didn't have any trouble with them at first, but especially since the

> radiation treatment they have got steadily worse. I have since read

> that radiation treatment can worsen the eye symptoms, or bring them

> on, and this is of course very frustrating to find out after the fact.

> Anyway she has classic Graves eye symptoms - they don't close properly

> in her sleep, she has to use eye drops all the time, sandy feeling in

> the morning and if any wind gets in them, ultra-sensitive to light.

> Sometimes she feels something 'snap' inside them in the middle of the

> night, and wakes up in pain. Her next appointment with the eye

> specialist is in September, but the impression everyone here gives is

> that there is 'nothing you can do' except use artificial tears to

> relieve the symptoms, so I don't have any great expectations from him.

>

> So my first question to you is, what can we do about Carmen's eyes?

> Is surgery the only answer? Should it only be used as a last resort?

> Is there any chance it will clear up on its own now that her hormone

levels

> are normal? Are there any alternative treatments around, and can

> anyone point me in the direction of web resources?

>

> Many thanks, regards, Jim

>

>

>

>

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

>

[Guest guest]

Jim & Carmen,

I'm so sorry to hear about your Graves woes but you've come to the right

place. A few thoughts on the eyes:

1. Surgery. Any corrective surgery should wait until the disease has run

its course, which, as Elaine mentioned, can take from six months to two

years (average) and sometimes as long as five. Currently, I'm in my second

year with a now moderate case of TED. My opthalmologist is recommending

surgery next year to correct my continuing and annoying (but not

debilitating) lid lag.

2. I know referred you to an archived post that discussed eye symptoms

but I'll emphasize here how much relief I got from taping my eyes shut

before going to bed at night. If her lids are retracted and eyes open

wider, the eyes may not be shutting completely at night. This causes the

cornea to dry out and causes the gritty, painful sensation.

Of course, you should check this out with the eye doctor, but it certainly

can't HURT Carmen to try taping and see if it offers relief from the pain.

When I taped my open eye I was astounded at how much better I felt the next

day! It was well worth it.

If you're interested in taping instructions, I have some from the National

Graves Disease Foundation and will post them on this list.

3. I recently had silicone tear duct plugs put into my tear ducts. These

tiny plastic plugs keep your tear ducts open and allow more moisture to come

into the eye. Much of the eye pain can be caused by dryness. Perhaps this

too is something to check with your doctor about.

4. As for alternative treatments, some people report that halting caffeine

and drinking green tea helps. Please visit the following web site:

http://ithyroid.com

This has a section on TED and has some advice; you'll find my story there

too. While I have learned much from the info at this web site, conventional

medical practitioners and advocates believe that this site is just shy of

dangerous; the web site manager believes in nutritional responses to Graves

and warns people away from RAI and other conventional treatment. Just so

you know it is a controversial web site.

5. On having another child--please talk to your ob/gyn and opthalmologist

about this. When I went to the Mayo Clinic (the best Graves place in the

U.S) the opthalmologist I saw told me that in this clincial experience,

women who already have TED and then become pregnant *invariably* experience

more severe eye problems post-partum. He told me that if I wanted another

baby, I should anticipate that my moderate TED would develop into severe TED

after another child and possibly require more elaborate surgeries. I know

this is a horribly discouraging thing to hear and I'm sorry. However, I

believe having all the information possible is the best thing for us. There

is very very very little information on pregnancy and TED, barely on studies

have been done. However, the opthalmologist I saw specializes in TED at the

Mayo Clinic and is arguably one of the nation's authorities on the disease

and the information he gave me is based solely on his experience. He

pointed out to me that because he is such an authority, he tends to see the

worse cases and perhaps this explains why every woman with TED worsened

after pregnancy.

Now, if your TED is already quite bad, perhaps this won't be an issue. For

me, my illness was improving and the thought of taking the risk of worsening

it again was frightening. Also, the opthalmologist didn't say if one's risk

of worsened TED post-partum decreased after the disease has run its course:

for example, if you and Carmen have time to wait two years for another baby

will she still be at risk for TED again?

Please feel free to email me privately if you've more questions. I

developed Graves post-partum following the birth of my second child and also

developed TED. I've given another pregnancy a great deal of thought and

have also learned a lot about coping with the eye disease. I'm happy to

reply via the list or in private.

B

introduction

>

>

> Hi, my name is Jim and my wife Carmen has Graves. I am British,

> she is Spanish and we live in Utrecht, Holland. Carmen is not as

> internet-oriented as me, which is why I've joined this list instead of

> her. However, I think she may be tempted when she sees the great

> information and support available here.

>

> We have a beautiful 19-month-old daughter, . Carmen never fully

> recovered her old vitality after the birth. Her GP initially diagnosed

> iron deficiency, but it was obvious after a while that iron

> supplements weren't helping. Of course you have to give them a few

> months to work, so more time passed without the proper diagnosis being

> reached. She eventually returned to her GP in January of this year and

> was diagnosed as hyperthyroid - with classic symptoms as it turned

> out, including rapid heartbeat and exhaustion after any effort.

>

> Thinking back, Carmen may have been suffering a milder form of the

> disease since her teens.

>

> We ordered literature from the Dutch Thyroid Disease Foundation and

> read it all. She was prescribed beta blockers to slow her heartbeat

> and hormones (I'll have to check which). The endocrinologist

> recommended radiation treatment (is this what you guys call RAI?) as

> the most effective option, seeing as we wanted to have at least one

> more child. Carmen was scheduled to have the treatment in March, but

> throughout February her condition worsened rapidly, to such an extent

> that she was completely incapable of climbing stairs, changing a

> nappy/diaper or anything. The dosage of beta blockers was doubled, and

> this eventually reduced the worst of the symptoms.

>

> The radiation

> treatment in March was a doddle - we were back outside the hospital 20

> minutes after entering! Carmen was taken off beta blockers. However, by

late April it became clear that

> the thyroid was swinging over to hypo. Finally, after the hormone and

> dosage was changed several times, her hormone level was normal. She

> still gets tired very easily, but is now functioning more or less

> normally.

>

> However, one aspect that is really concerning us now is her eyes. She

> didn't have any trouble with them at first, but especially since the

> radiation treatment they have got steadily worse. I have since read

> that radiation treatment can worsen the eye symptoms, or bring them

> on, and this is of course very frustrating to find out after the fact.

> Anyway she has classic Graves eye symptoms - they don't close properly

> in her sleep, she has to use eye drops all the time, sandy feeling in

> the morning and if any wind gets in them, ultra-sensitive to light.

> Sometimes she feels something 'snap' inside them in the middle of the

> night, and wakes up in pain. Her next appointment with the eye

> specialist is in September, but the impression everyone here gives is

> that there is 'nothing you can do' except use artificial tears to

> relieve the symptoms, so I don't have any great expectations from him.

>

> So my first question to you is, what can we do about Carmen's eyes?

> Is surgery the only answer? Should it only be used as a last resort?

> Is there any chance it will clear up on its own now that her hormone

levels

> are normal? Are there any alternative treatments around, and can

> anyone point me in the direction of web resources?

>

> Many thanks, regards, Jim

>

>

>

>

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

>

[Guest guest]

Jim,

I just wanted to welcome you and Carmen to the group. I also had RAI (on

May 10th of this year). Luckily, I have not had any eye complications

though (either pre-RAI or post-RAI). I have heard of doctors using steroids

to reduce alot of the symptoms of TED, such as swelling. Incidently, I

was put on steroids (Prednisone) both before and after the RAI, due to neck

inflammation. I have heard that the RAI can aggravate TED. However, my

mother, who also had Graves opted for surgery to remove her thyroid, and

she continued to exhibit the typical " bug-eyed " appearance of someone with

Graves until her death. I am sure that they have made a lot of medical

advances since that time.

e

Re: introduction

>

> Many thanks to Elaine and for the welcome and the useful

> information. I/we shall trawl the archives for relevant postings. I

> have printed out both messages for Carmen to read. It's empowering

> to find out exactly what is happening in one's body.

>

> all the best, Jim

>

>

>

>

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

>

[Guest guest]

Welcome to the group. You should find lots of helpful info here. Let us know

too if you have any specific questions or concerns.

Visit my Web Site at http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Dear Kim

Welcome to the group.

Congratulations on achieving control with the anti thyroid meds. From what

others have said and my understanding,

PTU is the much safer drug for pregnancy, so the endo was absolutely right to

switch you over. You will get some

replies from a couple in our group who have successfully had children on PTU.

You can also look in the past posts as

there are several discussions on this subject.

I had 2 & 1/2 years of trying to fall pregnant and then found out about my GD

and hyperthyroidism in May 2000. I am

certain that this insidious illness prevented me from successfully conceiving

and when I did at least once in 99 I

had a miscarriage at 7 weeks. I was put on PTU and beta blockers but I was not

able to reach much stability, I also

had a large goitre, so I opted for a sub total thyroidectomy in Oct 2000 (mostly

due to my age - 39 - and my desire

to get pregnant ASAP).

I fell pregnant on the first cycle after the operation (as the others here have

applauded - this was great

validation for my decision). I have just posted an update if you would like to

read that.

I hope all goes well for you. There are others also trying to get pregnant at

present - so my prayers are for you

(all).

Cheers

Caroline

Kim Baron wrote:

> Hi Everyone,

>

> I've been on the list for a few days now and I wanted to take a moment to

> introduce myself. I'm 31 and was diagnosed with GD in September of '99.

> My thyroid is currently being controlled by medicine: 50mg PTU once a day.

> That's down from twice a day as of about a month ago when I had my last

> visit with my endocrinologist. I was successfully taking Tapazole up until

> last July, but my husband and I started trying to conceive our first child

> in September, so I was switched to the PTU because both my endocrinologist

> and my ob/gyn are more comfortable with PTU for pregnancy.

>

> I joined this list because I'm trying to understand my GD as much as I

> possibly can, and I was hoping to be able to talk to other women who have

> gotten pregnant or tried to get pregnant while living with GD.

>

> I hope to learn a lot here, and hopefully I'll even be able to contribute.

>

> ~~k

>

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

[Guest guest]

Hi Kim-

I'm trying to get pregnant too. I do have one son that I was able to get

pregnant with after almost 3 years of infertility. This time we've been

trying for a couple of years with no luck yet.

For me, I believe my infertility was induced by hypothyroidism. I had RAI

at 24 and was kept hypothyroid following that (I'm now 38). They've now

diagnosed me with polycystic ovaries (a cause of infertility). I've read

several studies that indicate that hypothyroidism is a cause of PCO.

I think Graves' might also be a factor for my problems but I went and

compounded that by having RAI. Which certainly caused the hypothyroidism

and, likely,the resulting PCO.

Anyways, I'm happy to see that you aren't going for RAI. I was told it

wouldn't have any impact on my ability to get pregnant in the future (and it

might not have if I would have only waited 1 year instead of 6 years to

try). Well, that wasn't true.

I'm now on 100 mg of Clomid and 1500 mg of Glucophage for the infertility.

I'm also going in for a histosalpingogram tomorrow. That's a test just to

make sure everything's opened up. I had one when I was trying to get

pregnant the first time and it showed that everything was fine.

I actually splurged and bought one of those newfangled fertility monitors

this time (it's supposed to be more sensitive than the sticks) at my

OB/GYN's suggestion. Imagine my surprise when it registered high fertility

for this month. Hopefully, all this stuff they have me on will work pretty

soon.

Take care and good luck.

Introduction

> Hi Everyone,

>

> I've been on the list for a few days now and I wanted to take a moment to

> introduce myself. I'm 31 and was diagnosed with GD in September of '99.

> My thyroid is currently being controlled by medicine: 50mg PTU once a day.

> That's down from twice a day as of about a month ago when I had my last

> visit with my endocrinologist. I was successfully taking Tapazole up until

> last July, but my husband and I started trying to conceive our first child

> in September, so I was switched to the PTU because both my endocrinologist

> and my ob/gyn are more comfortable with PTU for pregnancy.

>

> I joined this list because I'm trying to understand my GD as much as I

> possibly can, and I was hoping to be able to talk to other women who have

> gotten pregnant or tried to get pregnant while living with GD.

>

> I hope to learn a lot here, and hopefully I'll even be able to contribute.

>

> ~~k

[Guest guest]

Hi Kim:

I was diagnosed around the same time, and I'm also on 50mg of PTU. Are

you feeling pretty stable at this dosage?

At 04:49 PM 02/05/2001 -0500, you wrote:

>Hi Everyone,

>

>I've been on the list for a few days now and I wanted to take a moment to

>introduce myself.

[Guest guest]

,

A fertile month for you!!! I will pray extra hard for you and Tom and

Tavis! And I'll cross everything that still crosses as an extra measure!

Good luck!

Jody

_________________________________________________________________

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

[Guest guest]

Hi Kim,

Welcome to a wonderful group. Elaine is way to modest When you get

through the archives here (which will offer you so much information!) you

can read some excellant articles at themestream.com and do a search for

Elaine . I also get weekly updates from Shomom at about.com.

Keep reading and asking questions, we are all here for each other.

Take care,

Jody

_________________________________________________________________

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

[Guest guest]

,

Count me in on that praying for you extra this month. I am sure alot of us

will here. Just know you are in my prayers daily.

Debbie R.

> _________________________________________________________________

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

>

>

>

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

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

[Guest guest]

Hi Aisha,

Don't know if you remember me. I have written to you

and you replied to my e-mail at my JUNO e-mail

address.

To answer your question the support group is for

anyone. I send Newsletters to Canada and England in

addition to almost every state in the U.S. Anyone is

welcome to receive it (no charge). The support group

exists on donations solely. We used to have monthly

meetings but the members wanted something different so

we have changed our " format " . We now have what I call

" Mini-Conferences " about 2 times a years. We get

physicians to speak on various sarcoid system

involvements. These conferences have been a HUGE

success. I do home-made vides of the conferences and

sell them for $10.00 each. I'm not in to make a

profit. Just enough to covere the costs. If anyone

would like to be on the Newsletter mailing list just

send me an e-mail with your mailing address to the

following e-mail address: sarcoidosisjudy@....

Because I am recovering from an extensive back surgery

done on 1/8/01 I was unable to get the Jan/Feb/March

issue of the Newsletter out but as I progress with my

recovery I will get back " on the track " . By-the-way so

anyone interested I have had Neurosarcoid for over 19

years.

^o^

\_/ ***Judy***

--- Aisha Elderwyn wrote:

> Hi Judy,

>

> Welcome to the list :-)

>

> WOW it must be very hard to run a support group and

> do newsletters as well as fighting your own battle

> with your health. Can anyone join your group or is

> it just for people in your area? Do you meet or is

> it a newsletter for information? Can never have

> enough huh?

>

> How are you feeling? Certainly sounds like you have

> been through the ringer more times then you care to

> remember! EEK!!!!

>

> Hang in there honey!!!

>

> *hugs*

>

> ¸..· ´¨¨)) -:¦:-

> ¸.·´ .·´¨¨))

> ((¸¸.·´ ..·´ -:¦:- Aisha

> -:¦:- ((¸¸.·´

>

>

> Don't let the odds scare you from even trying.

> - Schultz

> ______________

>

> Aisha Elderwyn

> Email: aisha@...

> ICQ: #55461955

> MSN Instant Messenger: aisha_elderwyn@...

> AOL Instant Messenger: Angelicisha

> Yahoo Instant Messenger: Angelicisha

> IRC: DALnet #BeingSick angel`isha

> Website: http://www.elderwyn.com/aisha

>

>

[Guest guest]

Meloni,

What state do you live in?

Tia (mom to age 14 1/2)

[Guest guest]

, that is so interesting about the eye surgery. How long ago did

r have that, and have you noticed any difference yet? We haven't gotten

that

far yet. We know that she has deformities on her retina and so I'd like to

find out what can be done. Whitney's MOM

[Guest guest]

-

Aubrie is 5 years old. I do remember that meds were the biggest inconvenience

after we removed the Gtube. I think we just held her down (you know, held her

lips and head) and squirted or poured it in. Like you do with typical kids who

don't want to take their meds. It wasn't long before she was cooperating well

with meds. Aubrie doesn't have a daily med so that helped a lot. The ped is

good about using the best tasting option whenever we need a medication. And

Aubrie is extremely agreeable and cooperative about most things.

I remember being worried because I didn't want her to choke on meds that she was

resisting. Even typical kids will sputter a bit when given meds sometimes.

This never became a problem, but Aubrie never did have a problem with

aspirating.

I'm so glad the ear tubes have helped. Have you been able to get definitive

hearing testing done? I was frustrated because it took us until Aubrie was 3 to

figure out how much of a hearing loss she had and get her fitted for aids.

Until that time, she seemed to hear quite well functionally and we just couldn't

get test results that we felt were reliable enough to use in aiding. Now she's

a whiz at the hearing tests. I know we got her aids as soon as we could, but I

wonder how much her hearing loss interfered with her early development.

Are you signing with r? We did in the beginning because we didn't know how

much she could hear and didn't know if she'd ever speak well enough for all of

her communication. Speech in CHARGE is such a complicated issue. Signing

allowed Aubrie to demonstrate her understanding to me long before she could do

so with speech. I learned to sign her favorite book. When we'd read it

together, she could sign to me " what will happen next " , " who is that " and other

questions that you would ask a child as you are sharing a story. She could ask

for specific books by signing. Without signing, she would never have been able

to communicate those things. I think that those early communications are

critical to concept developement. We no longer sign, but I wish we did. We use

just a bit for clarification here and there, but are considering adding more

back into our vocabulary. It's funny because Aubrie prides herself on being

able to sign, but she doesn't realize that she really doesn't remember much.

Michele W

Aubrie's mom

[Guest guest]

You know, Aubrie was having other eye surgeries at the time of her first muscle

alignment as well. I'm sure that is a factor in when to do it. It may not be

something you'd like to do an anesthesia for on it's own, but combined with

something else it's more worthwhile.

Michele W

Aubrie's mom (5 yrs)

Re: introduction

r had surgery May 8th 2003. We have noticed a difference because

before the surgery he would tilt his head to the side when looking at

something and after the surgery he no longer did that. We were glad

he had it done. Someone made the comment that their Ophthalmologist

waits to do the eye muscle surgery at around 2 or later. r only has

lower tear ducts and has had 3 surgery's on them ( dilating and tubes)

so maybe that is why the Dr went ahead with it.

I hope that helps!

wellsjdan@... wrote:

, that is so interesting about the eye surgery. How long ago did

r have that, and have you noticed any difference yet? We haven't gotten

that

far yet. We know that she has deformities on her retina and so I'd like to

find out what can be done. Whitney's MOM

[Guest guest]

-

I'm not really sure of the difference between a speech therapist and a speeth

pathologist. She has always seen someone with SLP at the end of their name so

apparently they've all been speech language pathologists. Even the speech

therapist at school is an SLP.

I'm sure that speech will be helpful to you. Sounds like you are doing all you

can and you just have to wait to see what direction he will go. Hang in there

and keep at it even when it seems futile. It's all going in and making a

difference even if you don't see the evidence of it right away.

Michele

Re: introduction

Michele,

Thank you so much for the information! I am hoping at r's 18 mo check up

the Dr. will okay to get rid of the G-tube. r sees ENT in October and I

will ask about another hearing test. Yes, I have been signing with r and he

waves hi and bye bye and think he is getting the hang of it. I think he is

trying to more. A Speech Path. has just started seeing r and hoping that

will help. Does Aubrie still see a Speech therp or Path?

r's mom (16 mo.)

[Guest guest]

Aubrie was seen in her first days after birth. They are able to do a complete

eye exam on an infant --although it's not a pretty sight and the child doesn't

like it. At the first opportunity, the doctor did an exam under anesthesia. I

would suggest that the next time Whitney needs something else done.

Michele W

Aubrie's mom (5 yrs)

Re: introduction

Meloni and Jodi, Thank you so much for the eye info. Whitney is 5 weeks old

and still in the NICU working on feedings. The eye Dr. in the hospital said

that she wouldn't start eye exams until 3 months old. I would like to know

much sooner about her vision issues. How old where your CHARGEr kids when

they

were seen by an ophthalmologist? Thanks, Whitney's MOM

[Guest guest]

Hello and welcome.

Kay 49 year old charger

introduction

> Hi, I am a new member and would like to introduce myself. My name is

> and my son r (16 mo.) has been diagnosed with Charge and

> EEC syndromes. He was born with Choantal Atresia, Coloboma and

> Hydronephrosis. He had severe Reflux and had the Fundoplication surgery

> and G-tube placed. r has had around 15 surgery's so far and 2 more

> coming up. He is taking everything by mouth and hopefully soon he will

> be able to get rid of the G-tube.

>

> We also have a daughter, Raelynn 4 yrs and has been wonderful with r

> and for him too! he has come such a long way, he is close to walking ( he

> has taken up to 8 steps by himself) and saying dada and mama! Our family

> has been wonderful in supporting us and r!

>

> I have been getting the e mails for a week or so and this site has helped

so much

> reading about all of your stories and advice. I have just now really

started researching

> and trying/needing the support!

>

>

>

>

>

>