New Member

Posted June 12, 1998 · June 12, 1998

In a message dated 98-06-11 23:11:41 EDT, you write:

<< We started with Dr. and Dr.

Hugh Sampson while they were still at s Hopkins. They were lifesavers

for us as we had been to so many specialists, through so many medications

and a Nissen fundoplication and was still a very sick little boy. >>

Hi Suzanne:

Welcome to the list. I started this list that people hwo have been dealing

with EG for a long time and a short time could help each other.

Clayton currently sees Dr. at St. s in Philadelphia and we

saw Dr. Sampson last month at Mt. Sinai in NY.

We ended up with Dr, after we spent several months drinign back and

forth tp Baltimore to go to Kennedy Hreiger.

What docs do you see now and what foods have you been able to get your son to

eat - Clayton is currently on Neocate One + and eats almost no other foods. He

cannot have eggs. wheat, milk, soy and any dairy.

Love,

Sharon.

Posted June 12, 1998 · June 12, 1998

Suzanne...Is the cronic pancreaitis (sp?) a side effect of having the

disease for so long? Did your docs ever say if this is something they see

kids grow out of? Oh, sorry welcome to the group!

Amy (mom to 7yr old girl, three year old son, eosinophilic

esophagitis,nissen, gtube, food allergies)

drawe@...

----------

>

> I am new to the eosinophilic gastroenteritis list, but am a veteran of eosinophilic

> gastroenteritis. My son, , who is eight-years-old has been suffering

> with this disease all his life. We started with Dr. and Dr.

> Hugh Sampson while they were still at s Hopkins. They were lifesavers

> for us as we had been to so many specialists, through so many medications

> and a Nissen fundoplication and was still a very sick little boy. He

> did have a negative sweat test, but his asthma was out of control. We

> started on Neocate while it was still considered experimental. It made an

> enormous difference in 's quality of life. He went from being a sick,

> underweight and lethargic baby to an outgoing, happy and very active

little

> boy. Unfortunately, he has not made a smooth transition back to " normal

> foods " . He has taken five years to tolerate ten foods. We thought that

he

> might never tolerate food at all. He has severe food, drug and

> environmental allergies, latex allergy, asthma, and 31/2 years ago,

> developed chronic pancreatitis. In spite of everything he's been through

he

> is average height and weight. He is the picture of health and one of the

> happiest children I've ever met.

>

> I was thrilled to stumble on this group by accident. I'm hoping to learn

> and possibly be a help to others who may be just starting to fight this

> difficult battle.

>

> Suzanne Wool

>

----------------------------------------------------------------------------

-

>

Posted June 20, 1998 · June 20, 1998

In a message dated 98-06-20 15:23:51 EDT, you write:

<< How many of us have heard, " but he looks so healthy " .? >>

I am glad to hear that I am not the only parent tired of being told this.

Jen

Posted June 20, 1998 · June 20, 1998

>

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] new member

> Date: Thursday, June 11, 1998 6:05 PM

>

" but his asthma was out of control "

Your son too has this problem?? has had horrible problems with

asthma since birth. About half of his 23 hospitalizations were for

breathing problems. Does take steroids? We just weaned off and

his tummy is not that bad but his asthma is bad every day!!! We are up to

6 treatments a day, were on 4 with the Prednisone but had no problems. Now

I find that coughs almost constantly all day long. Is this from the

asthma? I hear little or no wheezing but he is coughing all the time with

no other cold symptoms.

Has been sick with this since birth? When was he diagnosed? I am

very interested in your story, hope you don't mind all the questions,

because I am very leary of the outgrowing aspect we have been told. Were

you told would outgrow it? Do the docs still give you hope of this?

" . He is the picture of health and one of the

> happiest children I've ever met. "

I am glad to hear I am not the only parent of a sick child who has a happy

kid. I think this really shows a great parent who can keep a kid in this

much medical pain and turmoil happy!!! Pats to everyone on the back!!!

How many of us have heard, " but he looks so healthy " .?

Dawn

Posted June 21, 1998 · June 21, 1998

In a message dated 98-06-20 16:02:40 EDT, you write:

<< , " but he looks so healthy " >>

Me too. This drives me crazt. When someone says this I say you take him for 24

hours and then tell me this.

love,

sharon

Posted June 21, 1998 · June 21, 1998

> << , " but he looks so healthy " >>

> Me too. This drives me crazt. When someone says this I say you take him

for 24

> hours and then tell me this.

>

This is the exact same thing I told hubby's boss when he told me that what

my son has is not that serious and I " play " it up. LOL! My hubby's

supervisor actually took me up on it and I left with him and his wife

for 3 hours and now they did a 180 degree turn and fight for my hubby.

Dawn

----------

> From: SDidinsky@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Re: new member

> Date: Sunday, June 21, 1998 10:54 AM

>

> In a message dated 98-06-20 16:02:40 EDT, you write:

>

> love,

> sharon

>

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

>

Posted June 22, 1998 · June 22, 1998

I feel like screaming everytime I hear this!!!!! You are not alone.

----------

>

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Re: new member

> Date: Saturday, June 20, 1998 1:35 PM

>

> >

> > To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> > Subject: [eosinophilic gastroenteritis] new member

> > Date: Thursday, June 11, 1998 6:05 PM

> >

> " but his asthma was out of control "

> Your son too has this problem?? has had horrible problems with

> asthma since birth. About half of his 23 hospitalizations were for

> breathing problems. Does take steroids? We just weaned off

and

> his tummy is not that bad but his asthma is bad every day!!! We are up

to

> 6 treatments a day, were on 4 with the Prednisone but had no problems.

Now

> I find that coughs almost constantly all day long. Is this from

the

> asthma? I hear little or no wheezing but he is coughing all the time

with

> no other cold symptoms.

>

> Has been sick with this since birth? When was he diagnosed? I am

> very interested in your story, hope you don't mind all the questions,

> because I am very leary of the outgrowing aspect we have been told. Were

> you told would outgrow it? Do the docs still give you hope of this?

>

> " . He is the picture of health and one of the

> > happiest children I've ever met. "

>

> I am glad to hear I am not the only parent of a sick child who has a

happy

> kid. I think this really shows a great parent who can keep a kid in this

> much medical pain and turmoil happy!!! Pats to everyone on the back!!!

> How many of us have heard, " but he looks so healthy " .?

>

> Dawn

>

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

>

Posted June 22, 1998 · June 22, 1998

Sharon, we have spoken of this before on the phone. I am going to try what

you do right before you take Clayton to the doc's. I am going to feed him

a lot of food, so they can see how awful he feels being feed. Since of

course he is 24/7 on food.

----------

> From: SDidinsky@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Re: new member

> Date: Sunday, June 21, 1998 9:54 AM

>

> In a message dated 98-06-20 16:02:40 EDT, you write:

>

> << , " but he looks so healthy " >>

> Me too. This drives me crazt. When someone says this I say you take him

for 24

> hours and then tell me this.

>

> love,

> sharon

>

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

>

Posted June 22, 1998 · June 22, 1998

In a message dated 98-06-22 17:51:46 EDT, you write:

<<

Sharon, we have spoken of this before on the phone. I am going to try what

you do right before you take Clayton to the doc's. I am going to feed him

a lot of food, so they can see how awful he feels being feed. Since of

course he is 24/7 on food.

A >>

:

Let me know how it goes and what the doctor says. At least it will be an

interesting experience for her.

Love,

Sharon

Posted June 22, 1998 · June 22, 1998

I don't think that I will ever go back to his current GI doctor. We are

going to be changing Ped's as well, if after we let him know of our

complaints of him just throwing up his arms and leaving everything to

everyone else to do.

----------

> From: SDidinsky@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Re: new member

> Date: Monday, June 22, 1998 7:25 PM

>

> In a message dated 98-06-22 17:51:46 EDT, you write:

>

> <<

> Sharon, we have spoken of this before on the phone. I am going to try

what

> you do right before you take Clayton to the doc's. I am going to feed

him

> a lot of food, so they can see how awful he feels being feed. Since of

> course he is 24/7 on food.

> A >>

>

> :

>

> Let me know how it goes and what the doctor says. At least it will be an

> interesting experience for her.

>

> Love,

> Sharon

>

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

>

Posted November 17, 1998 · November 17, 1998

Hi Fran,

I wish to express my deepest sympathies to You & your family. I'm so

sorry you lost your husband to CJD. I know the pain & suffering of a CJD

victim & their families. My sister has CJD. Any time you wish to talk feel

free to e-mail me privately.

My thoughts & prayers are with you & your family,

Janet

Posted November 17, 1998 · November 17, 1998

Welcome Fran so sorry to here about your husband. I too lost my husband to

CJD in 1995.

Jackie Laplante

ext.309

new member

From: LArmstr853@...

Hi all....

Please join me in welcoming our newest member, Fran who lost her husband

to

CJD. Liz.

------------------------------------------------------------------------

Posted November 17, 1998 · November 17, 1998

Hi Fran

Welcome! I also lost my husband to CJD on February 8, of this year. He was

only 48 years old. My prayers to you and your family. Please contact me if

you would like to talk...

hugs

Beverly B

SBarwick@...

Posted November 18, 1998 · November 18, 1998

Dear Fran:

WELCOME!!!!!!! I am glad you joined. If you need anymore help in any way

let me know.

Your Canadian friend

a G.

----------

> From: LArmstr853@...

> To: cjdvoice (AT) onelist (DOT) com

> Subject: new member

> Date: Tuesday, November 17, 1998 12:06 PM

>

> From: LArmstr853@...

>

> Hi all....

> Please join me in welcoming our newest member, Fran who lost her

husband to

> CJD. Liz.

>

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

>

Posted December 17, 1998 · December 17, 1998

In September, when I first subscribed to CJD Voice, I sent the story of

my mother's illness to the list. However, due to e-mail problems (I did

not have full internet access at home at the time), issues of CJD Voice

got " bounced " back to onelist starting with the very next issue. I never

got to read any responses sent at that time, and the archives go back

only to October.

Below is the " New Member " message I sent at that time. I know it's

long, but I would appreciate hearing from anyone who has any comments or

questions.

My mother, Annie O. ( " " ) Sproat, died from CJD in Los Angeles at

the age of 65, on February 10, 1984. Though I was teaching at a college

in Ohio in 1983-84, I kept in close touch by phone and visited for

several weeks in December and again in the first week of February. Here

is a history of her illness for those who might be interested in the

course of the disease.

July, 1983 First symptom: a cough. Though she is treated with

antibiotics, the cough persists until late September. At a ish

Country Dance institute in the last week of July, she comments that she

is walking " off balance. " Describes the problem as being " like vertigo. "

Early October Begins experiencing more balance problems; notices that

she is typing less accurately than usual. Fears she may have suffered a

stroke. Takes a leave from her job as a court reporter. CAT scans and

other tests prove negative. She is relieved: " Thank God it's got

nothing to do with my brain. "

Late October Accompanies my dad to a ish Country Dance weekend in

Banff, Canada, but can no longer dance. My dad now goes with her to the

grocery store, etc., as her walk is so unstable he is afraid others will

mistake her for a drunk. Driving to an appointment, she notices that she

has forgotten to push in the choke on the car; she stops driving after

that.

Mid-November Symptoms become much more severe. She can walk only by

holding on to things, can sign her name only as a scrawl. Begins to have

difficulty remembering the day of the week and the time of day. Enters

Good Samaritan Hospital in Los Angeles for a series of diagnostic tests;

again all tests, including a cerebral angiogram and a spinal tap, prove

negative [remember, this is 1983, before development of the 14-3-3 test].

Out of the hospital at Thanksgiving, she is surprisingly able to give

directions when driving to an out-of-town friend's home.

Late November/early December My dad is uncomfortable leaving her home

alone. Unwilling to " wait and see what happens " as her doctor had

advised, he arranges for her to be readmitted to Good Samaritan. The

possibility of a " slow virus " is mentioned. [At the time, this meant

nothing to me.] All contact with staff at the hospital is through

plastic. My dad would have none of it, saying that if the disease were

contagious in the usual sense, he would already have contracted it

I should add that the day my mom was hospitalized, my dad talked to me

alone on the phone and verbalized his worst fear, that she might have

Alzheimer's disease. From what he had told me, my mom's illness didn't

sound like Alzheimer's, but his words were enough to send me to the

library to read about the " related disorders. " It was at that time I saw

a brief mention of Creutzfeldt-Jakob disease, a disease with a course

that seemed similar to what my mother was experiencing.

December 12 Since Good Samaritan was unable to give us a definitive

diagnosis, I called a high school friend who is a physician at UCLA and

arranged to have my mom transferred to UCLA Medical Center. I flew to

California shortly thereafter. (Believes she is in a hotel in San

Diego.) I notice the classic symptom of myoclonus--almost like hand

wringing--while she is asleep. (Thinks she has spent the day golfing

with her sister in Scotland.) Yet no one has said the words

Creutzfeldt-Jakob disease, and I hold out hope that there will be a

different diagnosis. By December 20, she cannot walk or stand or sit up

on her own, cannot write or dial a telephone, and cannot remember what

has happened minutes or hours before. Recognizes me but asks about " wee

Elaine. " Gives a 1960's address. Can still talk, but her voice quality

is strangely different (without affect).

Late December Comes home December 23 (and knows she's at home). My dad

takes a leave from work to care for her. Early one morning, momentarily

overcoming all physical losses, she sits bolt upright and says in a

perfectly normal voice, " Help me, help me, something terrible is

happening to my brain. " During the week between Christmas and New Year,

she begins to lose the ability to swallow and to communicate verbally.

January 6 Returns to UCLA as an outpatient to participate in a research

study involving positron emission tomography (the PET test assesses brain

function by measuring how quickly various portions of the brain

metabolize glucose). Doctors for the first time say the words

Creutzfeldt-Jakob disease. Readmitted because of dehydration. [i don't

think we were given a choice about artificial nutrition and hydration.

Knowing what I know today, I might not have allowed it. But looking

back, I am glad of the time it gave us--time to get come to terms with

the fact that she was in fact dying and to say our goodbyes.]

It was at this time that I made a bee-line to the nearest medical school

library, did a computer search of the literature on CJD (learned in this

way that CJD is always fatal), and contacted researchers at NIH. [They

indicated interest in drawing blood for a blood study that was under

way.]

January 10 Because she must now rely on a naso-gastric tube, my dad

makes the decision to place her in a skilled nursing facility. My dad

returns to work and visits daily. The doctor places a DNR notation on

the chart.

Early February She can now move only her lower arms and is alert for

only portions of the day. Yet I am sure she still recognizes me when I

visit. [i inquire about an autopsy, but my mom's doctor at UCLA says he

doesn't know anyone who would be willing to perform one on someone

suspected of having CJD. It is only after I inquire of the team doing

the PET research study that I find someone who is interested in the

information this would provide. The emotional toll of making autopsy

arrangements in the morning for someone I loved and visiting her in the

afternoon was difficult to say the least.]

Becomes congested; lungs are suctioned to make her comfortable. On

February 7, the day I left to return to my job in Ohio, she was totally

unresponsive until the moment I said my goodbyes; as I walked toward the

door she raised her hand and her right forearm and tried to wave.

Dies February 10, 1984.

My mom was sweet-natured and full of energy, and her early death had a

profound impact on my life. I went back to school (the post-bacc pre-med

program at Bryn Mawr) in 1985-86 with the intention of becoming a

physician, but for personal reasons ended up staying in academia until

five years ago when I accepted a position as Executive Director of a

chapter of the Alzheimer's Association (legal name Alzheimer's Disease

AND RELATED DISORDERS Association).

For several years after my mom's death, I heard nothing of CJD, except

that it was what Balanchine [choreographer for the NYC Ballet] had

died of. Since then, however, several family members of people with

suspected CJD have called me in the course of my work at the Alzheimer's

Association. [in one case, trying to pre-arrange an autopsy, we

contacted the pathologists at every major hospital in CT and found NONE

willing to perform one; fortunately the family lived close enough to NYC

to be make arrangements with Einstein.] I have also written to or spoken

with several people registered with NORD (the National Organization for

Rare Disorders). But CJD Voice is the first opportunity I've had to have

contact with a GROUP of people who know what it means to have a family

member die from CJD.

Over the past fifteen years I have of course speculated on how my mom

might have contracted the disease, but I will probably never know. [she

had a hysterectomy in May 1979, and she visited family in Scotland and in

New Zealand in 1980-81. She also used to rave about her mother's Sheep's

Head Soup, in which a sheep's head was used in the same way a ham bone

might be used, and the brains were creamed and added to the soup (as they

still may be in a good French restaurant), but that was in the

1930's--the incubation period for CJD is surely not THAT long--and

besides no one has shown that scrapie jumps the species barrier.]

It was only a couple of years ago, when I went to give blood, that I

learned there was an inherited type of CJD. Once again I contacted NIH,

and I was invited to send blood if I wished to be tested. [i did, and

tests for the most common genetic mutations proved negative.]

Perhaps some of the info in my mom's history will be of help to someone

on the list. My heart goes out to all of those in CJD Voice whose loved

ones have recently been stricken with this terrible disease.

Elaine Sproat

Posted December 19, 1998 · December 19, 1998

Dear Elaine,

Welcome to CJD Voice and thanks for re-submitting your mother's story. My

mother in law died in 1976 of CJD. At that time I had never heard of

Alzheimer's because it was not yet a well-known, publicized disease as it is

now. So our family became informed about CJD before Alzheimer's. Then when

Alzheimer's articles began to appear in the newspapers (can't remember when -

late 1970's?), I was immediately struck by the similarities between this " new "

disease, Alzheimer's, and what my mother-in-law had gone through. We began to

make donatations to Alzheimer's and Related Diseases organization because it

was the only way we could see to support research that might some day shed

some light on CJD. So I can see why you would want to work for this

organization. Now that you are getting your e-mail from CJD Voice you'll

become aware of the many ways this group is trying to encourage and assist CJD

research. You'll also learn a great deal about CJD from reading the posts.

Yvette

Posted January 14, 1999 · January 14, 1999

Welcome to the group, . I got by with minimum distress from RLS for

many years by taking calcium and magnesium supplements. They are both

known to be soothing to the nerves, so I figured that they would help

with the RLS, and they did, at least up to a point. The trick is to find

the best formula for them and the best proportion of calcium to

magnesium to take - that seems to depend on your system and how much of

these minerals you get from your diet. Chelated and citrate forms seemed

best to me for absorption. It is also recommended that you take them

after eating some protein so that there is acid in your stomach to help

in their absorption. In addition to taking supplements, it is probably

also useful to try to balance acidic and alkaline forming foods in your

diet to minimize mineral losses. The standard American diet, with

emphasis on meat and potatoes is believed to be generally too acidic. I

suppose the British diet isn't that much different.

I hope that is some help to you, and again, welcome!

Don in Albuquerque, New Mexico (one of the 50 states in the USA).

Fisher wrote:

> Hi group My name is and I live in England. It would seem that I

> have been an RLS " sufferer " since my early 20's. I am now 38. It was

> only last year that I decided to investigate my symptoms. Feeling too

> embarrassed to contact my Doctor (I could not describe my condition

> and my Doctor struggles to understand the symptoms of a common cold!),

> I decided to check out the Internet. I searched on key words such as

> Jerky leg etc. Sure enough I discovered that my condition is

> relatively common. I have since contacted my Doctor and as expected he

> has very quickly done nothing to help me! So, finally I find a help

> group on the Internet!I guess my question to the group is this: Can

> anyone give any advise on medication (preferebly non prescription),

> exercise or anything else that they have found to releive the

> symptoms. I'm willing to experiment with any (reasonable)

> suggestions.I look forward to your advise. Thanks for having such a

> group that I can discuss such things with!!!Rgds

Posted January 14, 1999 · January 14, 1999