Re:/Dr. Fox pain & enzyme levels

[Guest guest]

Beth

When we saw him Cassie had already been suffering from acute attacks for 2

years. I had that time in which to educate myself on Pancreatitis. So.. I was

full of questions, 3 1/2 pages worth. As he talked with us we went way way

back in Cassie's medical history. Back to birth actually, did you breast feed,

when did you first inttoduce solids, what was her reactions what know

alergies etc. He took it all in then we talked about childhood illness and

such.

Finally got around to stomach aches, vomiting that type of thing. Well Cassie

has always had tummy aches for as long as anyone can remember. Dr's atributed

it to ADHD, many who suffer have bad indegetion for some reason. Then 2 or 3

times a year she's get what we used to call

the mystery ick. Fever vomiting, lethargy, 24 to 48 hour she was up and

going again. I always keep her hydrated so no med care needed. Dr Fox says

Mrs.

Hurst Cassie has had pancratitis all her life. At that point I ask him about

pain with out elevations and handed him a copy of s Hopkins wed info. He

didn't even look at told me they are 100% correct and untill we dr's can go

in and do biopsies we can's say how much damage has really happened.

So since Will can't tell you what he feels how do you know how long he's had

pain and problems you don't. Read up a little more on Pancreatitis. read

everything you can get your hands on and then think, think back all his life and

see if you can't figure out when his problem started. I can tell you exactly

when Cassie's did,, age 10 months, when I stopped breast feeding her and solid

food became her main source of nutrition.

I'm so sorry to here about your little one, your life must be shear hell

right now. I know if my 3 yr old was in bodycast I'd be in the psyc ward. give

your self a hug you deserve it. I'm so glad you have the help of your family

they can mean everything in a time like this. Dont forget to take time for

you. God bless & hugs

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Patty,

The thought has already crossed our mind that this may very well NOT

have been Will's first attack. Will has had GI issues since birth,

appx 85% of kids with his syndrome have reflux, so it's hard to sort

out that with this new info.

However, there have been a few instances in the past few years

specifically where he has become so ill, and we have had him examined

for bowel obstruction and found nothing..so they chalk it up to a

stomach bug. Never have they tested his pancreatic enzymes until

this episode(which was by far his sickest).

He has certainly had lots of unexplained pain in his life and we

always seem to be going through all the systems in his body to rule

out various causes. In the last year or so he has taken up self

abuse behaviors like biting himself and head banging. It's been so

frustrating to figure out. Now we have one more piece of the puzzle

to work with!!

It's been interesting sharing these events with the foundation for

Will's syndrome. Asking them the question " have other kids with the

syndrome had pancreatitis " ? made them look back into their files and

realize that several kids have had it now. I think they may write an

article in our newsletter to warn parents about this possibility and

the next time their child is suffering GI problems to check the

pancreatic enzymes.

Beth