(No subject)

[Guest guest]

Hope you are closer to some answers Sharon, sounds like they are really

interested

in helping Clayton.

Dawn

P.S. I went on my first job interview today. I haven't worked since was

born since he has been so sick. Keep your fingers crossed for me, I will find

out

Wednesday afternoon about the job but I think I may have gotten it.

Unfortunately, spiked a 103 fever tonight so I am not sure they are going

to

be able to do the small bowel follow through tomorrow. He also is wheezing. We

will see how he feels in the morning.

SDidinsky@... wrote:

> From: SDidinsky@...

>

> Hi everyone:

>

> Well, we spent the whole day in Baltimore today at the Kennedy Kreiger

> Institute. We saw Dr. Hoon a neurodevelopmental specialist in the morning and

> the Feeding Disorders Clinic in the afternoon. It was a very long day. I

> left my house at 9:15 this morning and did not get home until almost 7pm. It

> is a 2 hour drive each way and as you all come to expect Clayton cried most of

> the way there and most of the way home - I have a splitting headache. Now for

> what the doctors said:

>

> Dr. Hoon said that Clayton has a minor neuromotor abnormality, tremors (this

> was new to us) a large speech delay and what appears to be some type of

> processing issues. He did indicate that it is his opinion that Clayton's

> small size, (head -- less than 2%) weight and height (5% or less) and small

> feet, hands, features are all related. He thinks that all of his issues are

> actually related (except for maybe the allergies) but then made the comment

> that we may not have the ability to determine what is wrong with him in 1998.

> BUT IT KEEPS COMING BACK TO A QUESTION OF A METABOLIC ISSUE. He even brought

> in Dr. a metabolic specialist to review Clayton's records and once again

> they now think that it may be something metabolic due to the questionable

> blood results Clayton has had (Continually high Alanine levels -- higher with

> each test, and elevated lactic acid level and carinitne level at the lowest

> normal level and other abnormal amino acids). Now they want to run all these

> tests again under controlled circumstances; They are (1) blood for lactate

> and amino acids 4-6 hours after eating; (2) random urine sample in afternoon 2

> hours after lunch; (3) urine 12-16 hours after fasting (they will turn his

> tube feeds off one night). Anyone know why they want to do it this way.

> Again the metabolic issue came up because it seems to fit Clayton's course he

> said -- also due to the fact that when he gets sick he gets really sick and

> loses skills. At least this was the first doctor who seemed to think that

> everything was all related (like I do) and that it was something maybe even

> CLAYTON SYNDROME. It was also interesting to notice that Clayton was still

> very light sensitive and would not track the light.

>

> As for the Feeding and swallowing clinic we saw the GI (Dr. Katz) and

> nutritionist, a behavioral psychologist (Dr. Severn). The definitely want to

> admit Clayton into the feeding clinic for 6-8 weeks. They feel it will help.

> They do not think that they will get him off tube feeds completely due to the

> fact that they are not sure how well he will tolerate the food and be able to

> digest it, absorb it or use it. Even if he can get 10-50% of his calories by

> mouth I will be happy. They also want to due the following when he is in-

> patient _(1) swallowing study with an OT and behavioral psych; (2) rectal

> biopsy (due to the lingering pooping issue). I also plan to ask them to due

> another gastric emptying study to see if a pyloraplsty is warranted at this

> time.

>

> All in all it was a good day just long and still no diagnosis -- but maybe we

> are getting closer. I did find it interesting that this doctor asked if I had

> a genetic screening done and I said I had an amnio. He said that they are not

> 100% accurate. He said that at this time a lot of things have been ruled out

> (more common) and now he is looking at rarer things and trying to rule them

> out (although he would not mention anything specific). At least I feel I am

> making some progress.

>

> Thanks for reading if you have made it this far.

>

> Love,

> Sharon

> mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

> and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

> wheat), g-tube, Nissen and possible latex allergy, some DD, undiagnosed neuro

> issues and sensory integration disorder)

>

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

>

[Guest guest]

Joyce,

I have really been thinking of you the past few weeks. I am praying for you.

God bless you. Hope to hear from you soon. Elaine

[Guest guest]

at the risk of sounding really stupid i have to ask 'who is bill wilson and

his friends'?????????

JACK

heat wave in western nys - the roses are confused

At 03:46 PM 12/3/98 -0500, you wrote:

>

>

>I am wondering if there are any rls sufferers that are also Friends of Bill

>. I am wondering if this make additional problems.

>

>

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

>

[Guest guest]

Jack

It's not a stupid question. Bill was the founder of Alcoholics Anonymous.

I am a close friend.

Jodi

Jack or Sue or Jackie wrote:

>

>

> at the risk of sounding really stupid i have to ask 'who is bill wilson and

> his friends'?????????

>

> JACK

> heat wave in western nys - the roses are confused

>

> At 03:46 PM 12/3/98 -0500, you wrote:

> >

> >

> >I am wondering if there are any rls sufferers that are also Friends of Bill

> >. I am wondering if this make additional problems.

> >

> >

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

> >

[Guest guest]

Bill was the co-founder of Alcoholics Anonymous. The other

co-founder was Dr. Bob----- I don't remember his last name. Last names are

not used in AA. Both men were from VERMONT and they met and began AA in

Akron, Ohio sometime back in the thirties.

CHEERS!!

Jeanne and Mr. Biggles in balmy Poultney, VT

[Guest guest]

Hi Muriel,

I'm a friend of Bills.....just returned from a meeting matter of fact. As

for alcohol aggravating RLS, I'm not sure....I've always been an alcoholic,

always been aggravated, and always had RLS!!!!! Just kidding (I think) LOL!

I have heard through one of the rls sites online that some people believe

that there is a connection between the two.

I can tell you that the last time that I detoxed myself at home without any

medical assistance I was laying in bed for five days with every major muscle

group spasming so violently that I looked like I was being hit randomly all

over with a cattle prod. That was about 4 years ago.

I lasted for about 11 months on my own, dry but not sober. Then went back at

it again for a couple of years. But the memory of the last detox was still so

vivid that I checked into a hospital for my last, and with Gods' help, my

final withdrawal from the demon rum :-) That was 14 months ago. The

involuntary limb movements were much less severe while being detoxed with

medications, but still there.

I'm not sure if it's just that I'm more aware of the rls now in sobriety or,

if as is often said here, it is just getting worse as I get older. I'm 50

now.....uhg I hate even typing that lol...

Now when I'm having a particularly restless evening and I start to get

annoyed I try to remember that time when I was laying in bed flopping around

like a fish out of water and it doesn't seem so bad.

I didn't mean to go on so long......Too much coffee

Thanks

H

EDGE

[Guest guest]

Jack...It's not at all a stupid question....Friends of Bill's are members of

AA

T

H

EDGE

[Guest guest]

Hi ..

My dad was only 36 when he fell to CJD and he died at 42,,,,like your dad " a

sack of bones " ....He only weighed 4stone at death.....

He went through much the same as your dad,,,but with my dad it was genetic..

Welcome to cjd voice

(no subject)

Hello to everyone I am new on the list and wish to introduce myself. My name

is

and my father Rice died of CJD in august of 1979. I was 17 years

old

and he died on my first day I was to enter college.My father was dying

through my

sixteenth year and succumbed finally at the age of 43. He was young,a head

of

brown wavy hair and in beautiful shape.My father was humble,hard

working,generous,devout catholic and a fine example of living the word.My father

lived through the affliction for too long and held on because of his

determination and strength. He did not know when to let go.Twenty years ago few

doctors

ever heard of CJD.He was misdiagnosed by the finest neurologists.My father

was on psychiatric ward,he was in nursing homes,the finest hospitals and finally

the VA hospital.We were told he would live forever in his condition and were

told at other

times he had the DT's. We had no support ,answer's,or help. My mother knew

though at what point to arrange the funeral she saw it coming,I refused. Finally

the night before he died I prayed to the Virgin to take him,it just hurt too

bad,and if

he would not let go he should be taken.Daddy died a sack of bones. He was

ridden with bed sores,he shook so bad he cut his chest up daily,he was on a

feeding tube,could not speak,and his eyes were wild and at times sad and

questioning.After he had one visitor they never came back.He had a congregation

full of friend's but mom never really reached out for help. My brother and

sister

never visited but mom was a angel of mercy and we both visited and tended to

him.Words cannot express the deep sadness and hurt I still feel today.I

yearn

for my father and the day that I can hold him again.I have never seen such

destruction like that of this affliction.It has taken 20 years for me to reach

out for answers and help. I was a child then and it devastated me horribly.I

could not believe God would let that happen to the father that kneeled with me

every night and taught me my prayers,a man who stood up to ignorance and

bigots,a man

who was decent and god fearing. It hurt down to my soul and still does.My

fathers

death was finally diagnosed on the autopsy table as Cjd. Thank god there is

support out there today and hopefully through activism answers will come

forth.

Thank you all for listening and god bless all our loved ones.

[Guest guest]

Dear Wayne,

Thank you for your message and welcoming me.Dear God I am sorry for your loss of

your father,and was shocked that he died so young also. I am sorry for being so

ignorant but how much is 4 stone,and I had no idea someone could live for so

long with CJD.So many of us seem to share the sack of bones story,as I have

heard from others this evening.I am truly sorry for your loss.May I ask where

you are from and how you know it is genetic? I guess some of us always fear that

part,the genetic part that is.Again thank you for writing and hope you did not

mind me asking the questions,sincerely

(no subject)

Hello to everyone I am new on the list and wish to introduce myself. My

name is

and my father Rice died of CJD in august of 1979. I was 17

years old

and he died on my first day I was to enter college.My father was dying

through my

sixteenth year and succumbed finally at the age of 43. He was young,a

head of

brown wavy hair and in beautiful shape.My father was humble,hard

working,generous,devout catholic and a fine example of living the word.My father

lived through the affliction for too long and held on because of his

determination and strength. He did not know when to let go.Twenty years ago few

doctors

ever heard of CJD.He was misdiagnosed by the finest neurologists.My

father was on psychiatric ward,he was in nursing homes,the finest hospitals and

finally the VA hospital.We were told he would live forever in his condition and

were told at other

times he had the DT's. We had no support ,answer's,or help. My mother

knew though at what point to arrange the funeral she saw it coming,I refused.

Finally the night before he died I prayed to the Virgin to take him,it just hurt

too bad,and if

he would not let go he should be taken.Daddy died a sack of bones. He

was

ridden with bed sores,he shook so bad he cut his chest up daily,he was

on a feeding tube,could not speak,and his eyes were wild and at times sad and

questioning.After he had one visitor they never came back.He had a congregation

full of friend's but mom never really reached out for help. My brother

and sister

never visited but mom was a angel of mercy and we both visited and

tended to

him.Words cannot express the deep sadness and hurt I still feel today.I

yearn

for my father and the day that I can hold him again.I have never seen

such destruction like that of this affliction.It has taken 20 years for me to

reach out for answers and help. I was a child then and it devastated me

horribly.I could not believe God would let that happen to the father that

kneeled with me every night and taught me my prayers,a man who stood up to

ignorance and bigots,a man

who was decent and god fearing. It hurt down to my soul and still

does.My fathers

death was finally diagnosed on the autopsy table as Cjd. Thank god there

is

support out there today and hopefully through activism answers will come

forth.

Thank you all for listening and god bless all our loved ones.

[Guest guest]

Dear ,

I am so sorry to hear of the passing of your father, it is hard to believe

why such special people are taken by God, I lost my father in 1994 and it

still hurts, because you ahve no idea what this disease is at the time, you

just think it's passing illness and they will be ok. I spent every day with

my father(except for about 10) in the 10 months he was ill, I was there

when he took his last breath, and it was heart breaking, but I am so glad I

was there.

Regards

Jackie

----------

To: CJDVOICE (AT) ONELIST (DOT) COM

Subject: (no subject)

Date: Monday, January 18, 1999 1:57 PM

Hello to everyone I am new on the list and wish to introduce myself. My

name is

and my father Rice died of CJD in august of 1979. I was 17 years

old

and he died on my first day I was to enter college.My father was dying

through my

sixteenth year and succumbed finally at the age of 43. He was young,a head

of

brown wavy hair and in beautiful shape.My father was humble,hard

working,generous,devout catholic and a fine example of living the word.My

father

lived through the affliction for too long and held on because of his

determination and strength. He did not know when to let go.Twenty years ago

few doctors

ever heard of CJD.He was misdiagnosed by the finest neurologists.My father

was on psychiatric ward,he was in nursing homes,the finest hospitals and

finally the VA hospital.We were told he would live forever in his condition

and were told at other

times he had the DT's. We had no support ,answer's,or help. My mother knew

though at what point to arrange the funeral she saw it coming,I refused.

Finally the night before he died I prayed to the Virgin to take him,it just

hurt too bad,and if

he would not let go he should be taken.Daddy died a sack of bones. He was

ridden with bed sores,he shook so bad he cut his chest up daily,he was on a

feeding tube,could not speak,and his eyes were wild and at times sad and

questioning.After he had one visitor they never came back.He had a

congregation

full of friend's but mom never really reached out for help. My brother and

sister

never visited but mom was a angel of mercy and we both visited and tended

to

him.Words cannot express the deep sadness and hurt I still feel today.I

yearn

for my father and the day that I can hold him again.I have never seen such

destruction like that of this affliction.It has taken 20 years for me to

reach out for answers and help. I was a child then and it devastated me

horribly.I could not believe God would let that happen to the father that

kneeled with me every night and taught me my prayers,a man who stood up to

ignorance and bigots,a man

who was decent and god fearing. It hurt down to my soul and still does.My

fathers

death was finally diagnosed on the autopsy table as Cjd. Thank god there is

support out there today and hopefully through activism answers will come

forth.

Thank you all for listening and god bless all our loved ones.

[Guest guest]

Dear Jackie,

Thank you for your message it was very thoughtful of you.I am very saddened

that you lost your father in the same way.I think that was beautiful that

you were with your father until the end that was wonderful.At the time my

father died he died alone,and that haunts me each day.Twenty years does not

take it away,you see at the time we were told he would live forever in that

state,how I wish I could go back in time.By the way Arnold is my mothers

name,God Bless,

(no subject)

>Date: Monday, January 18, 1999 1:57 PM

>

>Hello to everyone I am new on the list and wish to introduce myself. My

>name is

> and my father Rice died of CJD in august of 1979. I was 17 years

>old

>and he died on my first day I was to enter college.My father was dying

>through my

>sixteenth year and succumbed finally at the age of 43. He was young,a head

>of

>brown wavy hair and in beautiful shape.My father was humble,hard

>working,generous,devout catholic and a fine example of living the word.My

>father

>lived through the affliction for too long and held on because of his

>determination and strength. He did not know when to let go.Twenty years ago

>few doctors

>ever heard of CJD.He was misdiagnosed by the finest neurologists.My father

>was on psychiatric ward,he was in nursing homes,the finest hospitals and

>finally the VA hospital.We were told he would live forever in his condition

>and were told at other

>times he had the DT's. We had no support ,answer's,or help. My mother knew

>though at what point to arrange the funeral she saw it coming,I refused.

>Finally the night before he died I prayed to the Virgin to take him,it just

>hurt too bad,and if

>he would not let go he should be taken.Daddy died a sack of bones. He was

>ridden with bed sores,he shook so bad he cut his chest up daily,he was on a

>feeding tube,could not speak,and his eyes were wild and at times sad and

>questioning.After he had one visitor they never came back.He had a

>congregation

>full of friend's but mom never really reached out for help. My brother and

>sister

>never visited but mom was a angel of mercy and we both visited and tended

>to

>him.Words cannot express the deep sadness and hurt I still feel today.I

>yearn

>for my father and the day that I can hold him again.I have never seen such

>destruction like that of this affliction.It has taken 20 years for me to

>reach out for answers and help. I was a child then and it devastated me

>horribly.I could not believe God would let that happen to the father that

>kneeled with me every night and taught me my prayers,a man who stood up to

>ignorance and bigots,a man

>who was decent and god fearing. It hurt down to my soul and still does.My

>fathers

>death was finally diagnosed on the autopsy table as Cjd. Thank god there is

>

>support out there today and hopefully through activism answers will come

>forth.

>Thank you all for listening and god bless all our loved ones.

>

>

>

>

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

>

[Guest guest]

Wow what a story!!!!

I can relate. My 35 yr. old brother just died of CJD Dec. 30, 1998.

He was strong and healthy also. A sack of bones, that couldn't eat,

walk, or talk, (or breath on his own) when he died. We had to make the

decision to take him off the ventilator. Horrible. He has a 4 yr. old

son, and wife left. I hope I am not feeling the effects of this

horrible disease in 20 yrs., the way I am now. God Bless.

Annette

[Guest guest]

Marie,

Do you specifically want horror stories or positive ones as well? Except for

the usual difficulties arriving at a correct diagnosis at the early stage of

my mother's illness, most of our experiences were positive throughout her

illness and death in regard to the professionals that we had to deal with.

Sheryl

[Guest guest]

What you have reported is good. We are interested in the difficulties.

Thank you

Marie

[Guest guest]

To All,

Has anyone ever seen a TV program that has traced the life of someone with a

horrible debilitating illness? I have,quite a few myself.When I witnessed

what That disease Lou Gherigs(spelled wrong I am sure) I was horrified. I

just feel if I could have shown on TV my fathers uncontrollable shaking,his

bony skeleton,his lips trying to form words,his wild eyes,and the other

horrors associated with it the world would take notice.Someone out there and

someone soon I hope will chronicle the sheer desperation and horror of this

disease for all the world to see.It will scare the hell out of them all.If I

could go back 20 years and do it all over I would.I just think it is

time,take care all..

Dollys statement

From: BBWELLS@... (BETTY WELLS)

Dolly;

I personally want to thank yoou for your time and effort in behalf of

the group. Since I'm only 2 months old in the group my suggestions are

not very much. But I am sincere about " UNITY " . That is the only way to

accomplish our purpose.

I had a doctor who told me the best way to find out what a problem

is...is through the process of elimination. So that is why I think

everyones concerns are important.

Wonder what we would come up with if we asked questions and compared all

the answers.

Such as.......How many paients dead or alive has/had DIABETES? How

many patients had HEART PROBLEMS?.........How many ere on DIALYSIS?

See what I mean? This is eactly what my husbands doctor asked us to do

with his side of the family. Anything related could give some answers

that the doctors are searching for.

Now I hae heard teh good and the bad about the doctors. Let's focus on

what WE may be able to do to help the doctors.

I started giving out the information I found.....before I knew about the

group. So there are people including medical personel who know about

CJD. that didn't.

I haven't given up on my ideas. I WILL put them into action in my area.

I plan to ove into anothre house, so that may slow down my plans a

little, but I will do all within my power to accoplish what I can in

Jesus name. Not on my own, because without HIM I am nothing.

Working Together,

Betty

PS....Will the person who is printing the flyers please contact me?

There wil be a great Gospel Singng here at the beach April 22, 23, 24.

Last year they averaged no less than 6000 a night. Ineed some flyers!!!

Anyone else who wants to help...thanks.

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

[Guest guest]

Marie,

Yes, I have a logo that I am using to print on the new tri-fold brochures.

When are you leaving?...............Pat

[Guest guest]

Pat:

I would love to have a Master copy of your brochures when you get them

printed. I do not mind having some copies made (with your permission).

I HAVE SO MANY PLACES I WANT TO PUT THEM. DOCTORS OFFICES, HOSPITALS,

EVEN PHARMISCIES NEXT TO THE CHECK OUT I guess we could all use our

imaginations and find some unique place to put some. If we would just

take a master copy and pribt just what we need, then the expense would

not be great.

Thanks for your gift of time to do this. Be Blessed.

Betty

[Guest guest]

Pat:

I would love to have a Master copy of your brochures when you get them

printed. I do not mind having some copies made (with your permission).

I HAVE SO MANY PLACES I WANT TO PUT THEM. DOCTORS OFFICES, HOSPITALS,

EVEN PHARMISCIES NEXT TO THE CHECK OUT I guess we could all use our

imaginations and find some unique place to put some. If we would just

take a master copy and pribt just what we need, then the expense would

not be great.

Thanks for your gift of time to do this. Be Blessed.

Betty

[Guest guest]

Pat,

Could you email it to me as soon as possible? Also could you email it to the

gentleman in England who will have it put on our presentation? His email

address is MSin5@....

Thanks,

Marie

[Guest guest]

Marie,

Here is the logo. I hope you can open it. What is the name of the gentleman

in England?

[Guest guest]

In a message dated 3/16/99 10:23:20 PM Eastern Standard Time,

mmatheny@... writes:

<< When is your appointment with Dr.? I have an appointment with him

for April 22. Is yours for that date or around then? I may have to go in

to see him sooner, though, 'cause I've been having problems lately. >>

Malisa:

Clayton's appointment is a week later - Tuesday April 27th at 9am - unless we

end up there sooner - and we may as I think his mic-key may be going soon. he

has had it since AUgust and it looks like it is dying.

Love,

Sharon

[Guest guest]

Hi Malisa --

DO you have EG or EE?

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

Thanks Suzanne!

[Guest guest]

Not CJD related, but good to know.

Sheryl

[Guest guest]

There are some - but there are some ways around it if your chilod is

medically diabled or fragile as NJ does not have a medically fragile only

waiver.

Love,

Sharon