new to group

[Guest guest]

Jacki, welcome to the list. I don't know much about the hair loss yet. I am

only 2 weeks post op. I am sure some of the others would be happy to tell

you all about it.. Ask Stevie, she seems to know a lot.

2.9.00 MGB

[Guest guest]

Jacki et al,

More on the hair loss issue, I forgot to mention. The hair loss for me

started about 4 mos post-op and has finally stopped. I am 8 mos post-op

and my hair is getting thicker, new growth coming in... I've lost 121

lbs so hey , a little of that was bound to be hair!! *LOL*

TTSP (this too shall pass)

Cheryl

MGB 6/17/99

[Guest guest]

Hi Jackie, This is and I am fine now. I have had no hair loss so

far. My surgery was 1 10 2000. I didn't take take my Carafate correctly

from the beginning. It is supposed to be taken on empty stomach 4 times a

day. Well I only took it once a day. I was just going too fast, or

something. But anyway I am taking it once again. It is liquid and easy to

take. It helps the new stomach heal and prevents ulcers. Also I have had

to lay off my Premarin as it was making me nauseated. I am down to 196

lbs. So I still have made great progress even though I am sort of screwy.

I am really enjoying eating tiny strips of raw carrots dipped in fat free

ranch dressing, yummy. Good luck to you. MGB 1 10 2000 pre

surg wt was 242 lbs.

[Guest guest]

Debbie,

I take Oxycodone and it's working great for me. Unfortunately, it's one

of the medications like Oxycontin that will soon be under review by the

FDA because of massive abuse by drug addicts. I know that a number of

people take different medications. I'm so sorry your whole family has

hereditary pancreatitis. You might want to look up the following

website, which specializes in issues dealing with hereditary

pancreatitis: http://www.pancreas.org/ They have a monthly newsletter

that goes out too.

Kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

hi debbie,

i am very new to the group and i too am very glad to

find this group.

i was diagnosed last week with chronic hereditary

pancreatitis. i just came home from the mayo clinic in

rochester minnesota.

our stories seem very similar, however, my first

pancreas attact was at the age of 10 but

mis-diagnosed. thru my pregnancies in 1997 and 1999 i

had many acute pancreas attacks, hospitalizing me for

months and causing both my pregnancy's to pre-term

babies. both my children are very healthy considering

they were born at 32 and 34 weeks and under loads of

iv drugs.etc.

i've had so many ercp, stents,sphrintrotomies,scans,

etc... it gets old. no one else in my family has any

history of pancreatitis. they haven't been tested for

the gene.. i have but i do not have the results yet.

my treatment now is enzyme support and pain

management. i am taking mepregan and it works.

i hope this info is helpful and i would love to talk

with you more

stay well

michelle

--- dkdemlow@... wrote:

> I'm glad to have found this group. Was wondering

> how many others have been

> diagnosed with hereditary pancreatitis? I have had

> pancreatitis when pregnant

> with my kids and then had it in 1997 and had a

> pseudocyst and had to have a

> partial pancreatectomy. My sister has chronic

> pancreatitis and my Mom has had

> pancreatitis. This past May my 9 year old daughter

> was hospitalized with

> pancreatitis and they tested her for hereditary

> pancreatitis gene mutation

> which came back positive. So my youngest daughter

> (who has never had stomach

> problems) my Mom and sister and I were all tested.

> We all came back that we

> had the mutation. I have been very upset that my

> youngest also has the

> mutation. I have had pain since my surgery, but not

> severe and always

> dismissed it as something else because my surgeon

> told me I was fixed. Has

> anyone ever had pain that seems mostly in the back

> radiating through that

> isn't made worse by eating? I'm so sorry that so

> many of you are suffering.

> My sister that has chronic pancreatitis only was

> given percocet for pain. Was

> wondering if any of you have found other medications

> that work better so she

> can maybe get some relief. Thanks Debbie

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

hi debbie,

i am very new to the group and i too am very glad to

find this group.

i was diagnosed last week with chronic hereditary

pancreatitis. i just came home from the mayo clinic in

rochester minnesota.

our stories seem very similar, however, my first

pancreas attact was at the age of 10 but

mis-diagnosed. thru my pregnancies in 1997 and 1999 i

had many acute pancreas attacks, hospitalizing me for

months and causing both my pregnancy's to pre-term

babies. both my children are very healthy considering

they were born at 32 and 34 weeks and under loads of

iv drugs.etc.

i've had so many ercp, stents,sphrintrotomies,scans,

etc... it gets old. no one else in my family has any

history of pancreatitis. they haven't been tested for

the gene.. i have but i do not have the results yet.

my treatment now is enzyme support and pain

management. i am taking mepregan and it works.

i hope this info is helpful and i would love to talk

with you more

stay well

michelle

--- dkdemlow@... wrote:

> I'm glad to have found this group. Was wondering

> how many others have been

> diagnosed with hereditary pancreatitis? I have had

> pancreatitis when pregnant

> with my kids and then had it in 1997 and had a

> pseudocyst and had to have a

> partial pancreatectomy. My sister has chronic

> pancreatitis and my Mom has had

> pancreatitis. This past May my 9 year old daughter

> was hospitalized with

> pancreatitis and they tested her for hereditary

> pancreatitis gene mutation

> which came back positive. So my youngest daughter

> (who has never had stomach

> problems) my Mom and sister and I were all tested.

> We all came back that we

> had the mutation. I have been very upset that my

> youngest also has the

> mutation. I have had pain since my surgery, but not

> severe and always

> dismissed it as something else because my surgeon

> told me I was fixed. Has

> anyone ever had pain that seems mostly in the back

> radiating through that

> isn't made worse by eating? I'm so sorry that so

> many of you are suffering.

> My sister that has chronic pancreatitis only was

> given percocet for pain. Was

> wondering if any of you have found other medications

> that work better so she

> can maybe get some relief. Thanks Debbie

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thanks so much. I was wondering if there was any kind of a link. This is

such an interesting disease and my aunt has had to do a lot of education with

the Dr.'s and nurses for my uncle, her husband.

I have passed this website on to her so she has access to others that are

coping with the same disease. We continue to learn and appreciate all help.

Thanks again.

Terry

[Guest guest]

Hello,

MY NAME IS JIM, MY WIFE SANDY HAS PANCREATITIS. SHE AND I ARE TRYING

TO GET INFO ON HOW TO BEST TREAT HER CONDITION. SHE HAS SUFFERED

HORRIBLY THROUGH MANY YEARS OF UNDER TREATMENT OF HER PAIN. THIS IS

REALLY CONCERNING AND ANGERING ME!! I FEAR THAT I MAY END UP TELLING

THE NEXT DOC WHERE TO GO.

I HAVE BEEN ALL OVER THE NET, CHRONIC PAIN SITES ETC. I HOPE THAT

THIS SITE WILL BE HELPFULL IN OUR NEVER ENDING QUEST FOR A SOLUTION

TO THE PROBLEM.

HOPEFUL,

JIM

[Guest guest]

Dear Jim,

You are certainly in the right place.

This is a terrific list, and I know you will find a lot of answers here,

some hope, and a great opportunity to vent some frustration and anger, as

well as a great place to express joy at some of the victories that you and

your wife are able to achieve.

Welcome Jim and Sandy, we're happy to have you.

Jump right in, make yourself at home and start asking/sharing and telling

us all about who you are and what you and Sandy are going through and have

been through.

Hopefully by the time you read this you will have found a good doctor

that can help Sandy get what she needs.

If not, feel free to throw out the specifics and see what the folks here

on the list can do to help lead you in the right direction.

Good luck to you Jim.

We're here to help, and I surely hope we can -

I'm confident that we will be able to.

Warmly,

Terry in KC

<< Hello,

MY NAME IS JIM, MY WIFE SANDY HAS PANCREATITIS. SHE AND I ARE TRYING

TO GET INFO ON HOW TO BEST TREAT HER CONDITION. SHE HAS SUFFERED

HORRIBLY THROUGH MANY YEARS OF UNDER TREATMENT OF HER PAIN. THIS IS

REALLY CONCERNING AND ANGERING ME!! I FEAR THAT I MAY END UP TELLING

THE NEXT DOC WHERE TO GO.

I HAVE BEEN ALL OVER THE NET, CHRONIC PAIN SITES ETC. I HOPE THAT

THIS SITE WILL BE HELPFULL IN OUR NEVER ENDING QUEST FOR A SOLUTION

TO THE PROBLEM.

HOPEFUL,

JIM >>

[Guest guest]

Dear Hopeful Jim,

Welcome to our group! I'm sad for the reasons you discovered this

group, yet sincerely believe you will be able to find some answers

and solace from the many wonderful members involved, as I did.

You said your wife Sandy has been suffering for several years with

Pancreatitis. Perhaps you could tell us her story, and address some

of your concerns. If you can share this information with us I'm sure

many of us will be able to provide some anwers for you, for Sandy.

The membership here respresents all facets of the pancreatitis world,

and many members have related problems, so there is a great wealth

of " experience " among the members. Everyone wants to help each other

to make their lives better through their knowledge and understanding

of this disease.

Please share Sandy's story with us and know that we will listen, and

try to help in any way possible.

Keep the hope, your support of Sandy is instrumental, and much needed.

A new friend,

Heidi in SC

> Hello,

> MY NAME IS JIM, MY WIFE SANDY HAS PANCREATITIS. SHE AND I ARE

TRYING

> TO GET INFO ON HOW TO BEST TREAT HER CONDITION. SHE HAS SUFFERED

> HORRIBLY THROUGH MANY YEARS OF UNDER TREATMENT OF HER PAIN. THIS IS

> REALLY CONCERNING AND ANGERING ME!! I FEAR THAT I MAY END UP

TELLING

> THE NEXT DOC WHERE TO GO.

>

> I HAVE BEEN ALL OVER THE NET, CHRONIC PAIN SITES ETC. I HOPE THAT

> THIS SITE WILL BE HELPFULL IN OUR NEVER ENDING QUEST FOR A SOLUTION

> TO THE PROBLEM.

>

> HOPEFUL,

> JIM

[Guest guest]

Welcome Jill,

You will hear a lot about my darling

Cameron so I won’t go into detail, except to say, feeding, low tone and

speech are his major problems. He could not and still can’t eat orally and has a g-tube.

Hope you find a good place to relate

through this group.

Riley

New to group

Hi all~

Just wanted to introduce myself and my family. I

am looking forward to

learning more about all of you. I have two

children who are potentially

affected with a mito disease called cytochrome

c-oxidase deficiency.

Potentially because after their muscle biopsies,

they met most of the

criteria for that disease. , is 4

and will be 5 in early

October. She was born with extremely low tone and

we first realized

something was wrong when she was unable to suck.

To date, she is still a

little pumpkin. 28 pounds at almost 5.

She was g-tube fed until around

3 and we pulled it when she was about 3 1/2. We

wanted to get through the

winter in case she became sick so we could have an

easy means of

hydrating her without ending up in the hospital.

has now

exceeded our wildest expectations. She can

walk, run, etc, all of

course with an extremely wobbly gait, but it is

there. Currently we

don't anticipate any learning problems, except for

maybe some potential

for some hyperactivity issues...but that's more of

my issue than any one

elses. She is very independent and

strong-willed. Her biggest issue is

her speech. It is so difficult to understand

and sounds so

garbled...especially when tired. I feel

sorry for her and it breaks my

heart when her own peers can't understand

her. Our middle child, who

just turned 3, is unaffected. After many

debates, we decided to have one

more child. The Dr.'s told us this disease is so

rare, and because we

don't have a definite diagnosis, it is highly

unlikely to have another

child with this disease. Low and behold,

joined our family last

November...around 9 months ago. During the

pregnancy, I continued

telling anyone who would listen that I thought

that this baby didn't seem

right. Movement was nothing like Alyssa, our

unaffected child, and

reminded me of my pregnancy with . After

my ob. telling me I worry

too much (a different ob. than who had delivered

and Alyssa...we

had moved from the town they were born in), I

finally convinced him that

I wanted to see a high-risk specialist in a

hospital with a NICU. So, I

did...thank goodness. When was born the

neonatologist was there

during delivery, and thought things looked

great. However, everything

went down hill from there. After trying to

get to latch on all

night, by the next afternoon the pediatrician had

agreed with me that

there was a problem, so off to NICU. Anyway,

after demanding to see

other specialist, was able to come home the

day after me. He is not

doing as well as his sister did. While

seeming to have better tone than

his sister, he is not progressing as well at

all. About 6 weeks ago, he

had his first seizure, which never had

and I thought that I was

losing him for sure. He is now rolling over,

but not nearly ready to

sit, has no interest in food, refluxes through his

nissan, and basically

it just breaks my heart. Last week we drove

to see 's old

therapist just to get her input on the

situation...she didn't say much,

except she doesn't remember 's arms being

so atrophied, but his

legs are stronger than hers. currently

has therapy 3 days a week

and we will see 's old therapist

quarterly. She's excellent, has

been in the profession for years, and has

experience that our current

therapist doesn't have...she's just too far for me

to see her on a weekly

basis.

Anyway, looking forward to being part of the

group. Sorry for this long

into letter.

Jill (mom to 4 1/2, 9 months,

cytochrome c-oxidase

deficiency)

Please contact

mito-owner with any problems or questions.

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

;

I'd say you have come to the right place finally!!!

Small comfort, but lots of us have had the simple "Mito" diagnosis for

years and yet have little else in specifics! It is frustrating, without

doubt! You will find, once you have been here for a while, that Mito

is SO UNSPECIFIC that it seems two people with the exact same specific

diagnosis have vastly different symptoms and degree of severity of symptoms.

I wrote an answer this week to another new mom, which I will forward

to you if you wish .... or you can read it in the Archives. Caveat

is that Monday through Wednesday I will be away for doctor's appointments

.... but I can send it to you today!

.... adult with Mito

pumbaspeach1 wrote:

I have a 15 month old with mito/medabolic

disorder that they have not

given a name to yet. Looking for someone to chat with that

understands the frustration.

Please contact mito-owner with any problems or questions.

[Guest guest]

Welcome. My son is 17 months old with mito. He is deaf, g-tube feed. developmental delays, can't hold head up, crawl, sit up, . . .

This is a great group for asking questions or to vent.

Sue Ann in Indianapolis

new to group

I have a 15 month old with mito/medabolic disorder that they have not given a name to yet. Looking for someone to chat with that understands the frustration.Please contact mito-owner with any problems or questions.

[Guest guest]

Paige, I'm so glad you posted. 27# is 2-1/2 weeks! Fabulous!!! My surgeon

never gave me liquid pain meds, but Vicodin tabs. I didn't use them,but

they were there. The first couple of weeks, liquid seemed to be difficult,

sort of a like trying to get through a blockage, but that passed. I had a

friend that said cold liquids at first hurt, so she stuck to warm broths and

tea.

Tiredness!!! Goodness yes! I was flying high until it hit, then for a few

days I felt like a wet noodle. It passed, but every once in awhile it comes

back. The way it was explained to me was that the body senses that it's in

starvation mode, and tries to do something about it by sort of shutting down

and conserving energy. Everyone is so different. Some have this in the

beginning, some later. Mine has been pretty short lived. I'm already on

depression medication, so haven't experienced any differences, until before

my period.....then I became really grumpy! The doctors said many do feel

depression. Just go with it, and if it seems to last abnormally long and

pretty strong, see a doctor. Don't apologies for the questions. They're

always welcome.

Yeah, yeah, yeah....finally I got to 35# lost!!!! Yippee, next I venture

into the 230's. Love those new numbers.

Joan

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282pre-op/275surg/240/140

[Guest guest]

Hi Chocatowaan

I'm glad you found us. All of us have NS, or sarcoidosis of one type or another. I have multi-system, pulm, eyes, skin, neuro-- and have been dealing with it for 15 years or so.

Know that you've found a place where you can ask questions, laugh, cry scream-- and work with this disease with all that comes with it. We all face the problems of our life, our jobs, our relationships being impacted because of chronic illness.

Welcome to the family,

Tracie

NS Co-owner/moderator