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My daughter was diagnosed in Indianapolis, Indiana, at IU Medical Center, last

December (2003) with Chronic Pancreatitis-idiopathic.

She is 17- going on 18 in July, and has had severe paid for about 6-7 years.

She has been on a range of medicines for misdiagnosis of her condition until

last December.

She was in 5th grade when she began to have abdominal pain. She was treated by

her pediatrician for Acid Reflux and stress related IBS. She was place on

several different Acid Reflux medications - from Zantac to Protonix to

Propulcid, with little relief. She was given Ibuprofen 800mg for pain relief

and also vicodin and darvocet. Since was not able to get relief from her pain,

I took her to Riley Children's Hospital in 1998 (?) and she was diagnosed as

stress related IBS- in 5th grade. She was given anti depressants for relief and

counseling. Her pain did seem to get better for a time- maybe 2-3 months. Then

it would come back. At that time she was only having flare ups every month or

so. This lasted about 6 years and over many arguments with the pediatrician.

He and I actually had yelling matches- and with his nurses-asking him to check

her gall bladder and stating that the current regimen was not working. I had

Partner's HMO and needed the doctor's referral to take her elsewhere. I was

told by other reputable doctors that our Pediatrician was one of the " best " and

I thought maybe I was over reacting.

Finally in early October 2003, the ped sent my daughter to a gastro specialist-

I think he got tired of hearing us complain, and Jen missed about 15-20 days

during the first 2 months of school. Upon our first visit at the Gastro- he

stated she did present Acid Reflux- but rather he suspected her gall bladder- we

had that checked and found she was " full of stones " and had been for many years.

She was having Gall Bladder attacks all along- or so we thought.

She had her Gall Bladder out in October, 2003, and continued to have pain- by

the first week of December she was at I U Hospital in Indy. He talked to her

and prior to performing the EUS, felt that she was possibly stress related as

well. She did not appear as a pancreatic patient. He felt she looked very

healthy and was hesitant to do an ERCP and potentially cause more problems. He

agreed to do the EUS as it is non-invasive.

During the EUS he stopped the procedure and called in another specialist. The

diagnosis was given by both- Chronic Pancreatitis. It appears that she has had

it for years and all areas of the pancreas are affected. She was having daily

flare ups and was in severe pain. Finally, we had a diagnosis that made some

sense- but little did we know what this diagnosis would mean. We thought she

would take an antibiotic and it would go away. The doctors had a consult with

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

on that day.

She was given enzymes and more pain pills and set up with a nutritionist to

modify her diet. She asked when she would know if this was working- he stated

" if you typically flare up every few months -it will take months to find out. "

She replied " every few months?- I have sever 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. She was back in Indy within two weeks with

unbearable pain, nausea and uncontrolled vomiting. We took a 3 1/2 hour drive

at 11:30 at night to take her through the emergency room at IU. She then had an

ERCP and further confirmed the diagnosis. She was then given stronger pain

relief. She now takes MS Contin and MSIR, and Percoset. Usually all three to

get through the pain when she has it. With exercise, diet and enzymes she was

feeling better until early February. Again, another trip to Indy. At that time

she not attending school- too sick. She did not look good- pale, weak, hair

breaking- in bed everyday-all day- with morphine. Simply not thriving. Dr

McHenry-IU- put her on a more aggressive regimen- stopped the enzymes and

started Sandostatin Injections, (at the beginning 20mg every 30 days- now up to

30 mg every 18 days.) and nuerontin 1500 mg per day. She is doing better- still

alot of nausea and pain- but nearly as bad as before- she goes into pain at

about 14 days after the injections, we will probably move them up to 14 days

apart soon- but are trying a heavier dose instead. She was taken again to the

hospital ER, in our home town a couple of weeks ago- after three Morphine pills

she couldn't get her pain under control and needed IVs.

I am taking her to University of Pittsburgh Medical Center- Dr. Slivka-(he is

supposed to be about the best in the US) next week for consultation. They have

already reviewed the records and have stated that they are in agreement with he

diagnosis and treatment- there is nothing more they can offer from that point of

view. They will offer her an educational meeting. We will review the films

together and discuss current and future expectations. I think she is to meet

with a couple of different doctors. We had hoped to get her into school in the

fall so she can graduate with her class. UPMC advised me they have about 40

teenagers and only one can attend school. 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- one in

English and the other in History. But she need eight to graduate next year.

This isn't possible in the homebound program. She turns 19 next summer and

unless she is a full time student - she will loose my insurance-through work.

She had hoped to go on to college and into teaching-not sure yet how that will

pan out.

I have tried to get her to look at this organization and the National Pancreas

Foundation- out of Boston- I think. They have been very helpful-even helping to

get her into UPMC. She is still hoping this will just go away. Maybe soon she

will be ready to accept and gain knowledge. I see her starting to turn now-she

has to take control of the disease- She may not be able to control the disease

-but she can control how she lives with it.--Knowledge is always powerful.

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.

I know this is already a long email- it just feels good to get it out to people

who've been there- done that.

But- Jen has been sick most of her life- first with sinus and ear problems-

starting at 2 weeks old, tubes by 11 months, and again at 20 months. Then

finally in prep for sinus surgery- she was tested for allergies and immune

systems. She was diagnosed at 4 years old with Common Variable Auto Immune

Deficiency- her immune system dd not function. That's why she was always sick

and only well on antibiotics. She had to receive gamma gobuline infusions every

2 weeks for years.

During this time, she was in critical condition in the hospital at 15 months old

with excessively high fevers of 106, every night for over a month. Finally they

found she had kidney infections- due to a Bilateral Ureteral Reflux- when she

urinated most of the urine shot into her kidneys instead of coming out and

infected them. The infection was made worse due to her inadequate immune

system. She was taken to Riley Children's hospital in Indy and treated there

for several years. Both of the above conditions were not " curable.' They were

however controllable. She has since been " cured " of both- or at least the

conditions are no longer present. As one doctor told me " GO home and thank God

or whoever you pray too- nothing medical has happened. " Now, I hope and pray

for another healing.--but try to realistically live in the real world.

She was very athletic, played sports through school, and volleyball in High

School. She had to quit the team in her sophomore year due to degenerative disc

disease and excessive back pain. Now we know part of it was the CP.

Again, I know this is long- I apologize for that- it just feels good to get it

out. I would be interested in learning how people deal with this and how do you

pay for it. Does SSI help? 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.

Her current meds are:

Neurontin

Sandostatin

Lexapro

Tofranil

creone

MSIR -morphine

MS Contin -morphine

Percoset -morphine

Are any of you working with Social Workers or Advocates? Is this covered by the

ADA?

Any help is appreciated.

Thanks.

Norhtern Indiana