Hereditary Pancreatitis

[Guest guest]

I'm new to the group. My son and I both have pancreatitis. I was

diagnosed at the age of 2. I have not had many attacks. I have been

hospitalized 3 times and a few small attacks in between. My son was

diagnosed last year at the age of 14 months. He is now 28 months and

has been hospitalized 3 times. He has had a small attack this week.

My mother, uncle, sister and my nephew have all been diagnosed also.

My nephew has had genetic testing from Dr. Whitcomb and his is

hereditary. I'm sure all of us are as well. My question for those

that read this post is...What are your enzyme levels when you have

an attack? This week my son's amylase was 1053 and lipase 1840...in

the past when he was hospitalized both have been over 3000. He does

not seem to be in pain when he is sick, just uncomfortable. I

appreciate any responses. Our pedi is boggled by this...we are

trying to find a pediGI that takes our insurance, but seem to hit

roadblocks along the way.

Sorry for the long post!

Mindi

[Guest guest]

<What are your enzyme levels when you have an attack? This week my

son's amylase was 1053 and lipase 1840...in the past when he was

hospitalized both have been over 3000.

Mindi,

Your son may be one of those fortunate ones who doesn't experience the

severe pain of an attack. Does he become nausiated or vomit when he's

having an attack?

You shouldn't place much emphasis on enzyme levels, especially other

people's enzyme levels, during an attack. They are as different from

one person to another as their hair color is....some are in the high

thousands, others only in the hundreds and with some, there's no

elevation at all.

I personally think that all too much emphasis is placed on enzyme

levels, those numbers aren't important for any reason, except for the

fact that it's been taught that they indicate a pancreatitis attack.

We've learned by experience that a person in advanced CP can have a

valid acute attack and show no enzyme elevation at all. During my

last hospitalzed acute attack, my A&L's were both under 50. My

pancreas is burned out, so there are few, if any, enzymes to record,

but it is similar with anyone else in the advanced stages of the

disease, you will see lower and lower enzyme elevation. IMHO, it

should not be a diagnostic indicator at that point, the patient should

still be treated with hydration, pain control and NPO, since the

attack is no less severe than one where their numbers were in the

thousands.

I would think that your son's lower numbers could mean one of two

things. Either the inflamation wasn't as severe as during the other

attacks, or his condition is becoming more advanced, and there's less

enzyme activity, thus lower numbers.

I hope this opinion explains what you were asking about.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

www.health.groups.yahoo.com/group/pancreatitis/

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.

[Guest guest]

Mindi,

my enzymes no longer elevate when I'm having an acute attack these days

as my pancreas is burned out, though I still have daily pain. This is

actually quite common with chronic pancreatitits. I have a note from my

GI explaining this and it even lists a reference to the Hopkins GI

website if they don't think it's possible. So far, I hven't had too

much trouble over it.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Kimber could you give me that Hopkins reference? My lipase was 9900

last week with a whopping cp attack. I am still suffering--not able to

eat. My MD on Friday said to me well you don't look toxic so we'll send

you home. I am so discouraged when I feel so bad and it is like they

don't believe you. My cp is caused from my cystic fibrosis--first attack

last July. How do you all handle this? I was doing so well able to eat

at least pureed food. Now I'm back to liquids again and very thin.

Please write back. Thank you Deb

[Guest guest]

Kimber,

I've read that the enzymes are only elevated in the

beginning of pancretatits when it's accute

pancreatitis. when it finally reaches the stages of

chronic, the enzyme levels are no longer elevated.

I see by what's happened to you that this is true.

my amalayse was high back in 2000. Not anymore

though.

I didn't know I had accute back then.

I did wind up in the hospital for what I thought was

food poisoing after eating out a restuarant. On the

way home from the restuarant is when the pain started

and it shot to my back.

they kept me overnight at the hospital and gave me

pain meds. but they never determined what was the

cause.

I just happened to have at the same time an ovarian

cyst and the remains of it bursting. the gyno said it

wasn't the cause of all the pain and pushed my case

onto the gastro dr.

we never followed up that event.

I now know that it was an accute attack.

that was the worst pain I've ever had. the nauseua was

the worst thing I've ever experienced.

one of the nurses on staff that night in the ER made a

bag of microwave popcorn and burnt it.

you know how strong that smell is and it remains in a

room for hours after? to this day I will never forget

that smell.

No one on the unit should be cooking food anyway. not

even a bag of popcorn.

it made me want to throw up everysecond. plus having

to deal with the pain and they couldn't give me pain

meds till a dr. came in to evaluate me and find out

what the cause was.

I felt I was tortured.

S.

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[Guest guest]

Yes, the pain and nausea of this disease are the worst things I've ever

experienced too and I've had a heart attack and bypass surgery. Even the

heart attack couldn't match the pancreas pain and I know that women

who've had kids say it's worse than labor pain. It's really hard

sometimes to get this through to people who've never experienced this.

I'm lucky in that I don't always have the nausea and vomiting that many

others have. I do get the nausea sometimes and I've got Reglan for when

that happens. I can't take Phenergan because for some reason it just

doesn't work for me. I just keep vomiting if they give me Phenergan. I

also have an aromatherapy mixture that helps stop the nausea, but you

have to keep sniffing it the whole time. So I just use it to cover until

the Reglan starts to work. Because the Reglan is in pill form it takes

about 30 minutes to start working, so I use the aromatherapy until the

Reglan hits my system. I keep a small amount of the oil in a small

bottle on a necklace that I wear all the time so I always have some with

me, no matter where I go.

I'm sorry that it took so long for the doctor to evaluate you before you

could get any pain and nausea meds. I have that happen every tme I go

to the ER. They won't give me anything unitl the doctor sees me.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Deb,

here is the webpage address to the reference you are looking for:

http://www.hopkins-gi.org/

do a search on chronic pancreatitis. Then under the menu on the right

hand side (menu shows when you roll your curser over it), it's in the

Diagnosis section, right nunder the Biochemical Measurements.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.