Re: SPINK1 / Patty

[Guest guest]

In a message dated 12/30/2002 4:58:13 PM US Eastern Standard Time,

Rattpack1@... writes:

> >>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.<<

That is part of the point of the Pancreatitis in the Schools Project: They

won't come to us---we'll go to them. I'll be sending out a questionnaire

soon.

> >> I also had questions regarding her diet after discovering she had SPINK1.<

> <

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

> guidelines for her. We went to a nutritionist here and it was a total

> disaster. Dietitian didn't know what Pancreatitis was ... never mentioned

> at that time any nutritional supplements at all, not even antioxidant

> therapy. With this SPINK1 thing now and what I understand about the

> processes of it I also have to reduce her protein, So know what do I feed

> her. <<<

I don't have a clear understanding of the processes, actually. Would you mind

sharing some of your resources. All I know is the basic definition and

relationship of SPINK1 to Pancreatitis. I have read the research and

abstracts stating the findings of the genetic mutations, but I have not read

how that affects the day to day dietary habits, other than the obvious. I

will keep researching and will share anything I come up with.

> >>>We try our best to relieve 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. <<

> Patty in Bangor ME <<

I have one of those. I love it. The aromatherapy is great, the warmth is

soothing. The other day I bought one of those heat patches that are activated

then placed next to the skin for 12 hours. They are used for muscle aches.

They have some out that are marketed for menstrual cramps. I found them just

great. They actually stayed warm. We have had long threads about the

relationship of the menstrual cycle and Pancreatitis. There is nothing

documented, but our posts support a strong risk of exacerbation of

Pancreatitis during various stages of the menstrual cycle. For some it is

ovulation others menstruation.

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-