Re: (unknown)

October 15, 2000

Bonnie,

Actually Propranolol is for high blood pressure. None of the meds you mention

are for Parkinson's. The side effects you mention could be caused by the meds

you are on actually any of the meds you are on. Have you told your doctor about

the problems you are having with the meds? It would be best to tell the

doctor. They can try different meds.

Take care, Bill and Charlotte

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

Bonnie Curlew wrote:

> hi there:

>

> I've been reading your letter hopefully to get anwers for myself to.

>

> Too start of my name is Bonnie and diagnoised with Parkinsons 2 weeks ago. I

> wrote before terrified but now I am at the can't read enough stage.

>

> Maybe someone can explain the drug compination I have

> Wellbrution, celexa, propranolol( I think for tremors)

> The Propranolol is making me very nausea and dizzy plus extremely tired.

> I'm at the beginning stage of Pd. I would truely be gratefull.

>

> The sounds of this group most are the caregivers of there spouses and a view

> pd.msa people.

>

> Talk to you later.I always read my mail and this forum

> thanks Bonnie

>

> The Propran

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

October 15, 2000

Bonnie,

Actually Propranolol is for high blood pressure. None of the meds you mention

are for Parkinson's. The side effects you mention could be caused by the meds

you are on actually any of the meds you are on. Have you told your doctor about

the problems you are having with the meds? It would be best to tell the

doctor. They can try different meds.

Take care, Bill and Charlotte

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

Bonnie Curlew wrote:

> hi there:

>

> I've been reading your letter hopefully to get anwers for myself to.

>

> Too start of my name is Bonnie and diagnoised with Parkinsons 2 weeks ago. I

> wrote before terrified but now I am at the can't read enough stage.

>

> Maybe someone can explain the drug compination I have

> Wellbrution, celexa, propranolol( I think for tremors)

> The Propranolol is making me very nausea and dizzy plus extremely tired.

> I'm at the beginning stage of Pd. I would truely be gratefull.

>

> The sounds of this group most are the caregivers of there spouses and a view

> pd.msa people.

>

> Talk to you later.I always read my mail and this forum

> thanks Bonnie

>

> The Propran

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

November 2, 2000

Hello ,

I don't understand how this could have happened by mistake. The log file from

the Shydrager mailing list clearly indicates that

you or someone with access to your email account requested to be subscribed.

11/1/2000 8:41pm scherereh@... Subscription requested via email

11/1/2000 8:47pm scherereh@... Subscription confirmed via email

In order for this to have happened someone would have had to send an email to:

shydrager-subscribeegroups from your account. Then a message would have

been returned to your account asking you to reply to confirm your

subscription. According to the logs this is what happened. If you look in

your outbox you should see these sent messages unless they have since been

deleted.

I thought you should know that if you did not do this yourself then there is

someone else using your account.

I will remove your email from the subscription list immediately.

Regards,

Pam

Scherer wrote:

> At 09:43 AM 11/2/00 -0400, you wrote:

> >Please take my name and email off your list. There has been a mistake. I

> >have no interest in shydrager disease. I am getting thousands of these

> >emails daily. Please forward this email to otherpeople, so that they

> >won't email me. Thank you.

>

> Scherer

November 10, 2000

Suzanne,

My daughter does not have any allergies that we are aware of. We

live in Colo and go to a hospital near our home but are considering

Children's Hospital for any of her further care. I am so sorry to

hear about your son. I thought it was hard for me to look at my

daughter in so much pain...I just can only imagine what you are going

through. Have they made the link of allergies to the pancreatitis?

They have no idea why my daughter has it. It would be nice to keep

in touch as I know of no other child who has pancreatitis. Thank you

for responding to me and sharing your story.

>

> I'm very sorry to hear about your daughter. I have a son, who is

now

> 11-years-old. He had reflux when he was a baby which was caused by

> severe food allergies. He also had constant stomach pain and

vomiting.

> He had a Nissen fundoplication when he was 16 months old. He also

began

> having symptoms and was diagnosed with pancreatitis when he was

> 5-years-old. Unfortunately, he has had a rough time since then.

He has

> had to spend hundreds of days (each year) in the hospital, as well

as

> months at home on TPN, unable to have anything at all by mouth. He

has

> had procedures for pain control. I'm sure you've heard that this

disease

> is extremely rare in children. I have never heard of another child

that

> developed pancreatitis after a fundoplication, until now. Does your

> daughter have allergies? What hospital do you go to for her care?

>

> Suzanne

>

> On Fri, 10 Nov 2000 14:36:13 -0000 clipp6422@a... writes:

> > Hello. I do not have pancreatitis, my 7 year old daughter has

been

> > diagnosed with it. I am searching here for some support,

answers,

> > advice, tips etc. Here is our story:

> > My daughter has had medical problems her entire life. She has

a

> > hearing loss in the left ear as well as hypothyroidism. When she

> > was

> > 3 she began to have chronic stomach pain combined with vomiting

and

> > diarrhea. After some testing she was diagnosed with chronic

> > esophogitis and had a nissen (stomach wrap) which stopped the

reflux

> >

> > or heartburn. At the age of 5, she started having stomach pain

> > again. The GI doctor ran some testing and her amalyse and sed

rate

> > was elevated everytime she had the stomach pain. She had a

battery

> > of tests including an ERCP, HIDA scan, CT of the stomach as well

as

> > an abdominal ultrasound. The only thing revealed was

a " slightly "

> > inflammed pancreas. He diagnosed her with chronic pancreatitis

when

> >

> > she was 6. She was placed on Creon, the pancreactic enzyme and

we

> > were told to go on a low fat diet. Everything seemed to go ok,

she

> > finally started to gain weight and the stomach aches were mild.

> > Last Friday she had her first attack. The thing that I do

not

> > understand is, it is only her amalyze that elevates. So, the

doctor

> >

> > in the ER put her on IV Fetinol. He said he doubted it was a

> > pancreatitis attack since her lipase was not elevated (which it

has

> > never done). He sent her home several hours later on 24 hours

clear

> >

> > liquids. The day we started her diet back up she was in severe

pain

> >

> > that radiated into her back. She described it as a pain that

went

> > through her whole body. Again we go to the ER and get a doctor

who

> > agrees she is having a pancreatic attack and placed her on IV

> > Nubain. She was admitted to the Pediatric floor. The

pediatrician

> > on call for the hospital that night said it was not her pancreas

> > since it was only her amalyze that was elevated. He took her off

> > the

> > IV Nubain and just put her on anti-nausea medication. She had a

> > horrible night. The GI doctor on call the next day looked at her

> > and

> > said the spots she was pointing to on her stomach and her back

were

> > exactly where he would expect pain with a pancreatic attack. It

> > seems to be where the tail of the pancreas is. Well, after the

> > attack her amalyze level goes back down.

> > Has anyone ever had just the amalyze level go up and not the

> > lipase? Her GI doctor says she has chronic pancreatitis and

treats

> > her with the enzymes, but I do not understand why other doctors

do

> > not believe this since her lipase remains normal.

> > I am just looking for a little support. This has been hard on

> > our

> > family and watching my daughter in pain just breaks my heart.

This

> > is no way for a child to live, but she has accepted it and lives

> > with

> > it. In two years of having chronic pancreatits, this was her

first

> > attack. The GI doctor seems confident with an increase in the

> > enzymes and avoiding the fatty foods hopefully this will be the

last

> >

> > attack she has for a very long time. Her ERCP was normal, no

> > calcifications or stones. Her pancreas has no damage, just the

one

> > ultrasound which showed it " slightly " inflammed and the elevated

> > amylase.

> > Any advice, tips or other stories would be greatly appreciated.

> >

> > Thank you for listening,

> >

> > -------------------------- eGroups Sponsor

> >

> > PANCREATITIS SUPPORT NETWORK

> > Online e-mail group

> >

> > To reply to this message hit " reply " or send an e-mail to:

> > Pancreatitisegroups

> >

> > To subscribe to this e-mail group, simply send an e-mail to:

> > Pancreatitis-subscribeegroups

> >

November 10, 2000

I'm very sorry to hear about your daughter. I have a son, who is now

11-years-old. He had reflux when he was a baby which was caused by

severe food allergies. He also had constant stomach pain and vomiting.

He had a Nissen fundoplication when he was 16 months old. He also began

having symptoms and was diagnosed with pancreatitis when he was

5-years-old. Unfortunately, he has had a rough time since then. He has

had to spend hundreds of days (each year) in the hospital, as well as

months at home on TPN, unable to have anything at all by mouth. He has

had procedures for pain control. I'm sure you've heard that this disease

is extremely rare in children. I have never heard of another child that

developed pancreatitis after a fundoplication, until now. Does your

daughter have allergies? What hospital do you go to for her care?

Suzanne

On Fri, 10 Nov 2000 14:36:13 -0000 clipp6422@... writes:

> Hello. I do not have pancreatitis, my 7 year old daughter has been

> diagnosed with it. I am searching here for some support, answers,

> advice, tips etc. Here is our story:

> My daughter has had medical problems her entire life. She has a

> hearing loss in the left ear as well as hypothyroidism. When she

> was

> 3 she began to have chronic stomach pain combined with vomiting and

> diarrhea. After some testing she was diagnosed with chronic

> esophogitis and had a nissen (stomach wrap) which stopped the reflux

>

> or heartburn. At the age of 5, she started having stomach pain

> again. The GI doctor ran some testing and her amalyse and sed rate

> was elevated everytime she had the stomach pain. She had a battery

> of tests including an ERCP, HIDA scan, CT of the stomach as well as

> an abdominal ultrasound. The only thing revealed was a " slightly "

> inflammed pancreas. He diagnosed her with chronic pancreatitis when

>

> she was 6. She was placed on Creon, the pancreactic enzyme and we

> were told to go on a low fat diet. Everything seemed to go ok, she

> finally started to gain weight and the stomach aches were mild.

> Last Friday she had her first attack. The thing that I do not

> understand is, it is only her amalyze that elevates. So, the doctor

>

> in the ER put her on IV Fetinol. He said he doubted it was a

> pancreatitis attack since her lipase was not elevated (which it has

> never done). He sent her home several hours later on 24 hours clear

>

> liquids. The day we started her diet back up she was in severe pain

>

> that radiated into her back. She described it as a pain that went

> through her whole body. Again we go to the ER and get a doctor who

> agrees she is having a pancreatic attack and placed her on IV

> Nubain. She was admitted to the Pediatric floor. The pediatrician

> on call for the hospital that night said it was not her pancreas

> since it was only her amalyze that was elevated. He took her off

> the

> IV Nubain and just put her on anti-nausea medication. She had a

> horrible night. The GI doctor on call the next day looked at her

> and

> said the spots she was pointing to on her stomach and her back were

> exactly where he would expect pain with a pancreatic attack. It

> seems to be where the tail of the pancreas is. Well, after the

> attack her amalyze level goes back down.

> Has anyone ever had just the amalyze level go up and not the

> lipase? Her GI doctor says she has chronic pancreatitis and treats

> her with the enzymes, but I do not understand why other doctors do

> not believe this since her lipase remains normal.

> I am just looking for a little support. This has been hard on

> our

> family and watching my daughter in pain just breaks my heart. This

> is no way for a child to live, but she has accepted it and lives

> with

> it. In two years of having chronic pancreatits, this was her first

> attack. The GI doctor seems confident with an increase in the

> enzymes and avoiding the fatty foods hopefully this will be the last

>

> attack she has for a very long time. Her ERCP was normal, no

> calcifications or stones. Her pancreas has no damage, just the one

> ultrasound which showed it " slightly " inflammed and the elevated

> amylase.

> Any advice, tips or other stories would be greatly appreciated.

>

> Thank you for listening,

>

> -------------------------- eGroups Sponsor

>

> PANCREATITIS SUPPORT NETWORK

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

> Pancreatitisegroups

>

> To subscribe to this e-mail group, simply send an e-mail to:

> Pancreatitis-subscribeegroups

>

November 11, 2000

In a message dated 11/10/00 9:40:24 AM Eastern Standard Time,

clipp6422@... writes:

<<

Hello. I do not have pancreatitis, my 7 year old daughter has been

diagnosed with it. I am searching here for some support, answers,

advice, tips etc. Here is our story:

My daughter has had medical problems her entire life. She has a

hearing loss in the left ear as well as hypothyroidism. When she was

3 she began to have chronic stomach pain combined with vomiting and

diarrhea. After some testing she was diagnosed with chronic

esophogitis and had a nissen (stomach wrap) which stopped the reflux

or heartburn. At the age of 5, she started having stomach pain

again. The GI doctor ran some testing and her amalyse and sed rate

was elevated everytime she had the stomach pain. She had a battery

of tests including an ERCP, HIDA scan, CT of the stomach as well as

an abdominal ultrasound. The only thing revealed was a " slightly "

inflammed pancreas. He diagnosed her with chronic pancreatitis when

she was 6. She was placed on Creon, the pancreactic enzyme and we

were told to go on a low fat diet. Everything seemed to go ok, she

finally started to gain weight and the stomach aches were mild.

Last Friday she had her first attack. The thing that I do not

understand is, it is only her amalyze that elevates. So, the doctor

in the ER put her on IV Fetinol. He said he doubted it was a

pancreatitis attack since her lipase was not elevated (which it has

never done). He sent her home several hours later on 24 hours clear

liquids. The day we started her diet back up she was in severe pain

that radiated into her back. She described it as a pain that went

through her whole body. Again we go to the ER and get a doctor who

agrees she is having a pancreatic attack and placed her on IV

Nubain. She was admitted to the Pediatric floor. The pediatrician

on call for the hospital that night said it was not her pancreas

since it was only her amalyze that was elevated. He took her off the

IV Nubain and just put her on anti-nausea medication. She had a

horrible night. The GI doctor on call the next day looked at her and

said the spots she was pointing to on her stomach and her back were

exactly where he would expect pain with a pancreatic attack. It

seems to be where the tail of the pancreas is. Well, after the

attack her amalyze level goes back down.

Has anyone ever had just the amalyze level go up and not the

lipase? Her GI doctor says she has chronic pancreatitis and treats

her with the enzymes, but I do not understand why other doctors do

not believe this since her lipase remains normal.

I am just looking for a little support. This has been hard on our

family and watching my daughter in pain just breaks my heart. This

is no way for a child to live, but she has accepted it and lives with

it. In two years of having chronic pancreatits, this was her first

attack. The GI doctor seems confident with an increase in the

enzymes and avoiding the fatty foods hopefully this will be the last

attack she has for a very long time. Her ERCP was normal, no

calcifications or stones. Her pancreas has no damage, just the one

ultrasound which showed it " slightly " inflammed and the elevated

amylase.

Any advice, tips or other stories would be greatly appreciated.

Thank you for listening,

>>

Hi , I am so sorry for your little girl. Pancreatitis is such a

painful disease and when an adult has it is bad enough but for a little child

to have it, well it is just horrible. I want to let you know that if she is

having pancreatitis pain she is really suffering. Don't ever take her pain

lightly. If she says she hurts she is having terrible pain.

I do know that one can have a pancreatitis attack and many do without the

amalaze and lipase going up. I would think the GI is right and she is having

a pancreas attack.

I have heard thru this support group and also from my church of children

having pacreatitis attacks. Have they looked for a gene that would cause

chronic pancreatitis? The boy in my church had hereditary pancreatitis so

they removed his pancreas and transferred the islet cells in the pancreas to

the liver so he would not have the attack again and the islet cells in the

liver would keep him from becoming a diabetic. I know of a little girl from

another support group who is 10 years old and she had her pancreas removed

with the islet cells transferred to the liver.

I am going to have this surgery done on Dec. 8 if my medical ins. will cover

the transfer. One can only have this surgery if one is not a diabetic. I am

going to MN to have it done since they have been doing it since the 1970s. I

would never go to another hospital and have it done. Many hospitals around

the country are starting to do this surgery but I don't trust them since they

are new to it. The most important skill the doctor has to have is knowing

just how to remove the islet cells from the pancreas. They are very fragile

and it takes someone with a lot of experience to do the extraction. I will

send you a web site to read. I think it would be wise to keep the web site

for the future just in case your daughter continues to have attacks. If she

continues to have attacks you should talk to Dr. Sutherland in MN before she

becomes a diabetic. I don't want to scare you I just want you to have an

alternative if she does have chronic pancreatitis. If she ever becomes very

ill with chronic pancreatitis expect her doctor to be against the

pancreatectomy and islet cell transfer.

The web site is....http://www.insulin-free.org/stories/rebello.htm

I hope and pray that your dear little girl gets well and doesn't have to have

any surgery. I don't mean to frightened you with the thought of surgery. I

just wanted you to be informed about what is being done today that many

people do not know about. The islet cell transfer is becoming a procedure

with hospitals all over. In Cincinnati, where I live they just started it a

few months ago and have had three successes.

Please let me know if you have anymore questions or just need to cry, vent or

worry. Good luck . Shirley

November 11, 2000

---

Shirley,

Thank you for all the information!! I do appreciate it and I am sure

I will need to cry and vent. Good luck with your surgery, my family

will pray for you.

In pancreatitisegroups, shirlf3542@a... wrote:

> In a message dated 11/10/00 9:40:24 AM Eastern Standard Time,

> clipp6422@a... writes:

>

> <<

> Hello. I do not have pancreatitis, my 7 year old daughter has

been

> diagnosed with it. I am searching here for some support, answers,

> advice, tips etc. Here is our story:

> My daughter has had medical problems her entire life. She has

a

> hearing loss in the left ear as well as hypothyroidism. When she

was

> 3 she began to have chronic stomach pain combined with vomiting

and

> diarrhea. After some testing she was diagnosed with chronic

> esophogitis and had a nissen (stomach wrap) which stopped the

reflux

> or heartburn. At the age of 5, she started having stomach pain

> again. The GI doctor ran some testing and her amalyse and sed rate

> was elevated everytime she had the stomach pain. She had a

battery

> of tests including an ERCP, HIDA scan, CT of the stomach as well

as

> an abdominal ultrasound. The only thing revealed was a " slightly "

> inflammed pancreas. He diagnosed her with chronic pancreatitis

when

> she was 6. She was placed on Creon, the pancreactic enzyme and we

> were told to go on a low fat diet. Everything seemed to go ok,

she

> finally started to gain weight and the stomach aches were mild.

> Last Friday she had her first attack. The thing that I do not

> understand is, it is only her amalyze that elevates. So, the

doctor

> in the ER put her on IV Fetinol. He said he doubted it was a

> pancreatitis attack since her lipase was not elevated (which it

has

> never done). He sent her home several hours later on 24 hours

clear

> liquids. The day we started her diet back up she was in severe

pain

> that radiated into her back. She described it as a pain that went

> through her whole body. Again we go to the ER and get a doctor

who

> agrees she is having a pancreatic attack and placed her on IV

> Nubain. She was admitted to the Pediatric floor. The

pediatrician

> on call for the hospital that night said it was not her pancreas

> since it was only her amalyze that was elevated. He took her off

the

> IV Nubain and just put her on anti-nausea medication. She had a

> horrible night. The GI doctor on call the next day looked at her

and

> said the spots she was pointing to on her stomach and her back

were

> exactly where he would expect pain with a pancreatic attack. It

> seems to be where the tail of the pancreas is. Well, after the

> attack her amalyze level goes back down.

> Has anyone ever had just the amalyze level go up and not the

> lipase? Her GI doctor says she has chronic pancreatitis and

treats

> her with the enzymes, but I do not understand why other doctors do

> not believe this since her lipase remains normal.

> I am just looking for a little support. This has been hard on

our

> family and watching my daughter in pain just breaks my heart.

This

> is no way for a child to live, but she has accepted it and lives

with

> it. In two years of having chronic pancreatits, this was her

first

> attack. The GI doctor seems confident with an increase in the

> enzymes and avoiding the fatty foods hopefully this will be the

last

> attack she has for a very long time. Her ERCP was normal, no

> calcifications or stones. Her pancreas has no damage, just the

one

> ultrasound which showed it " slightly " inflammed and the elevated

> amylase.

> Any advice, tips or other stories would be greatly appreciated.

>

> Thank you for listening,

>

> >>

> Hi , I am so sorry for your little girl. Pancreatitis is

such a

> painful disease and when an adult has it is bad enough but for a

little child

> to have it, well it is just horrible. I want to let you know that

if she is

> having pancreatitis pain she is really suffering. Don't ever take

her pain

> lightly. If she says she hurts she is having terrible pain.

>

> I do know that one can have a pancreatitis attack and many do

without the

> amalaze and lipase going up. I would think the GI is right and she

is having

> a pancreas attack.

>

> I have heard thru this support group and also from my church of

children

> having pacreatitis attacks. Have they looked for a gene that would

cause

> chronic pancreatitis? The boy in my church had hereditary

pancreatitis so

> they removed his pancreas and transferred the islet cells in the

pancreas to

> the liver so he would not have the attack again and the islet cells

in the

> liver would keep him from becoming a diabetic. I know of a little

girl from

> another support group who is 10 years old and she had her pancreas

removed

> with the islet cells transferred to the liver.

>

> I am going to have this surgery done on Dec. 8 if my medical ins.

will cover

> the transfer. One can only have this surgery if one is not a

diabetic. I am

> going to MN to have it done since they have been doing it since the

1970s. I

> would never go to another hospital and have it done. Many

hospitals around

> the country are starting to do this surgery but I don't trust them

since they

> are new to it. The most important skill the doctor has to have is

knowing

> just how to remove the islet cells from the pancreas. They are

very fragile

> and it takes someone with a lot of experience to do the

extraction. I will

> send you a web site to read. I think it would be wise to keep the

web site

> for the future just in case your daughter continues to have

attacks. If she

> continues to have attacks you should talk to Dr. Sutherland in MN

before she

> becomes a diabetic. I don't want to scare you I just want you to

have an

> alternative if she does have chronic pancreatitis. If she ever

becomes very

> ill with chronic pancreatitis expect her doctor to be against the

> pancreatectomy and islet cell transfer.

>

> The web site is....http://www.insulin-free.org/stories/rebello.htm

>

> I hope and pray that your dear little girl gets well and doesn't

have to have

> any surgery. I don't mean to frightened you with the thought of

surgery. I

> just wanted you to be informed about what is being done today that

many

> people do not know about. The islet cell transfer is becoming a

procedure

> with hospitals all over. In Cincinnati, where I live they just

started it a

> few months ago and have had three successes.

>

> Please let me know if you have anymore questions or just need to

cry, vent or

> worry. Good luck . Shirley

November 13, 2000

In a message dated 11/10/2000 9:40:32 AM Eastern Standard Time,

clipp6422@... writes:

<< Hello. I do not have pancreatitis, my 7 year old daughter has been