New from Northern Indiana

[Guest guest]

,

You wrote, " My daughter was diagnosed in Indianapolis, Indiana, at

IU Medical Center, last December (2003) with Chronic Pancreatitis-

idiopathic. She was in 5th grade when she began to have abdominal

pain. She was treated … for Acid Reflux and stress related IBS.

.... "

I am so sorry to hear of your all too familiar story. That is far

too long to have been undiagnosed. Pancreatitis is a progressive,

deteriorating disease. Time is of the essence to obtain a diagnosis

and treatment. But, additionally, the years of feeling that no one

believes you when you say you are in pain can play havoc on a young

girl's self esteem, for years. I am glad that she had a devoted

mother who did believe her and continued to pursue answers

regardless of the roadblocks you have encountered.

You wrote, " The doctors had a consult with us later that

afternoon and gave us the blow. Her life was definitely altered on

that day. "

I know this has been a hard and long road to get here. The

unfortunate news is that there is another long and hard road in

front of you, as well. I have struggled over the years about how

truthful to be with people who have recently received a diagnosis.

It is hard to say that there isn't a cure and treatments, even

palliative ones, are few and small between. Narcotics make it

difficult to fully participate in life, but so does constant pain.

What is important is that you have found some resources to help you

make decisions.

There are a growing number of children and adolescent members. I

will forward you email to several of them so they can get in touch

with you. As yo9u can imagine, their lives are very busy and they

don't all have time to check the board every day. I think they

can offer you a lot of assistance and support.

You wrote, " I have severe pain every day. " The doctor was shocked

that she looked as good as she did. She is very resilient and he

thought would be her best ally. "

It is amazing how resilient our bodies are. Unfortunately, this

isn't our best ally, because we " present so well " . Many

people

still are not believed when they show up to the emergency room. The

longer I am sick, I am finding that it is all beginning to take a

toll on me at once. Of course, I am older, anyway.

You wrote, " It will be a miracle if Jen can go back and finish.

She was homebound this last year- a teacher came to the house for

about 5 hours a week to allow her to get 2 credits per semester. But

she needs eight to graduate next year. "

The PAI is dedicated to doing what we can to facilitate these issues

through a program called, " Pancreatitis in the schools " .

Pancreatitis is chronic illness and therefore falls within the

parameters of the laws re: chronic illness and public schools. I

will talk with you one on one regarding the resources you have to

pursue help with this. They are based on the much done work by the

American Diabetes Association and the Diabetes in the schools

program. Don't give up.

You wrote, " I have spoken to the nurse at my work, and she

suggested setting her up with a social worker to be an advocate for

her with the school and future job concerns- as well as try to get

her into support groups. Are there any other mothers out there of

teenagers- how are you dealing with this? Are any of you working

with Social Workers or Advocates? Is this covered by the ADA? "

She is absolutely right. Planning ahead is very important to achieve

the optimum outcomes. We can help you with connections in Indiana

and especially at IU Hospital or Riley Hospital. There is a

disability program for children. It is not just for adults who

become disabled. The reality is that she will be unable to

perform " activities of daily living " on a regular basis. This

will affect her insurance as well as income. This is covered under

the ADA.

You wrote, " Jen has been sick most of her life…She was

diagnosed at

4 years old with Common Variable Auto Immune Deficiency- her immune

system did not function. "

I find this very interesting. There is more and more research that

connects pancreatitis with our immune system. As an RN I did

pediatrics for years and often think back on so many of the young

adolescents who had chronic complaints and were just pushed to the

side and essentially not heard.

You wrote, " What do we do when the insurance company drops her

next year. Currently her meds are about $6000-$7000 per month. She

takes the shot every 18 days and it alone is $2800-$3000 each

time. "

There are a couple of avenues to take. Indiana has a catastrophic

health care policy for people who are totally uninsurable otherwise.

I will get you that information. The premiums are high, but no where

near the thousands of dollars my medicine and care is now. It takes

time to process, so it is time to get started now.

I am glad you shared your story. I will be getting you in touch with

other parents of teenagers, 17 – 20. She may even be up to

corresponding with some of them.

Karyn E. , RN

Executive Director

www.pancassociation.org

Indianapolis, Indiana