Re: $2500 letter/ Patty

[Guest guest]

Karyn,

We're one step ahead of you . My husband and I have an appointment with her

PCP on the 9th to discuss these findings. We're working on a lettter and a

long list of questions were sending ahead of time. I'm also printing off

information from various on line sources everyone here has supplied us. If I

can't back what I have learned they don't want ot hear it. The fact that I

have access to many people who have experienced pancreatitis for years and

can point me in the right direction reall makes them angry. I have invited

all her Dr's to come join the site and see what people with CP are really

experiencing. Also suggested it to school.

I also intend to ask him if he still wants to treat her. She had urine tests

in November and I still don't know the results. I've called Twice and no

response. I also had questions regarding her diet after discovering she had

SPINK1.

After the visit with her PCP I'm going to start the same thing with GI Dr.s.

Answer my questions here are the fact that I have found to back things up.

Karyn do you know of any organization that would be able to come up with

dietary guidelines for her. We went to a nutritionalist here and it was a

total disaster. Dietician did'n't know what pancreatitis was. Had to wait

25 minutes for the Dr to get done with his patient to explain to her what it

was. Then for 15 minutes she read out of a book. Told me to reduce Cassie's

fat to only 25% I had already done that on my own and it didn't help so...

taking it down to 25% made no sense to me, I keep her between 10 and 15% a

day. Also never mentioned at that time any nutritional supplements at all,

not even anti-oxident therapy. With this SPINK1 thing now and what I I

understand about the processes of it I also have to reduce her protien, So

know what do I feed her.

As far as her pain goes I have been trying to get her relief. Today things

have started to act up again, She has her period. They want to send us

back to Boston so we can go to pain management down there. Big talk about

bio feedback therapy, also I should think about psyciatric(sp) help for her

if her levels aren't elevated she must be faking. We don't really want to

take her down there, besides being very time consuming, for all of us, she

misses enough school with out haveing to go to Boston. The big city scares

her quite a bit which makes her ADHD that much more obvious. I was 1st told

that there were no pain mgmt Dr's specializing in pediatric pain. Then no on

here experienced with pain associated to CP. I've proved them wrong on both

counts and have found two different Dr's with experience with CP and they are

both ore than willing to review her records and if they think they can help

her, they'll treat her. Only thing is, they won't do it without a referral.

We try our best to releive her pain any way we can. I have these heating

packs filled with rice and lavender that we heat up in the micro way.

Doesn't take her pain away but it does relax her enough that she's not

writhing in pain.

Karyn, thanks for your reply. Hugs

Patty in Bangor ME