Untreated pain - how long can she go

[Guest guest]

Hi all

Sorry I haven't been around the last few days, my computer is acting up and

so is Cassie's CP.

For the last week 1/2 she has started to experience pain any time she eats

anything. At 1st it would last an hour or 2 and then subside, yesterday it

never went away. Had he to PCP yesterday. She had to see another Dr as

her's was on duty in PICU and can not leave. He drew blood to check levels

and is scheduling her for another ultrasound. Never got anything for her

pain. waited up till 11:30 last night for results...nothing. Called this

morning and got answering servive, 4 hours later call back, levels are

normal. What about her pain...just watch her. well I've been watching her

for days, that's why I took her in yesterday. I know this is not just in her

head I watch and listen to her as she sleeps, she moans and cries out in

pain. And we are so helpless. Locally we have nowhere else to turn. I

tries recently to get her into a GI group her in our town but they only see

adults. Doesn't matter that she's 5'2 " and 150 lbs ..the size of the average

adult female. Receptionist told me the DRs in the group didn't care if she

was on life support..they weren't going to see her. never

even got to a nurse, let alone a Dr.

How are we suppose deal with this, we tell her have faith in medicine don't

give up but yet they do nothing for her . my baby is saying I wish I was

dead so I wouldn't hurst any more. Hell she's not even 13 yet. Oh yes we

have been over and over with them about pain without elevated levels and they

agree but that couldn't be Cassie. She's only been sick since October 2000

they say, not long enough. Even after we got SPINK1 diagnosis and Dr Fox in

Boston to agree that she has been sick since birth they don't agree here. We

are so very helpless.

In front of her, I try so very hard to be strong but my heart is breaking for

I am the one who gave her SPINK1 and as her mom I'm suppose to make things

better and I can't. Nor can I find anyone that will help her. I envy those

of you who are adults and at least have attemps made to ease your pain.

she is not given that same opportunity. As Dr they are sworn to do no harm,

yet every hour that goes by they harm her alittle more not just by making her

deal with the pain but also the phycilogical well being of us all. Even her

little brother is effecxed by this, he always wants to give blood to make his

" Sissy better " .

How much longer is she expected to endue this. what do I do feed her Fried

chicken, Mashed potatoes - lots of butter and gravy etc.. till her levelss

elevate enough to make them happy... What happens if they don't?

Sorry to bee so long winded, but my frustration is extreme.. God bless you

all

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Patty,

Your message about Cassie's pain just infuriates me. I think it's

inhumane that the doctor's won't help and give her something to

reduce the pain. It seems so hopeless, and I can understand

your frustration and anger. I know I would feel exactly the same

way if it were my child, and my heart hurts for both of you.

I wish there was more I could do than offer my sympathy for such

a distressing situation. It's a very rough life for poor Cassie and I

know you want to make it so much better for her, it's so unfair.

I'll be thinking of you both, and praying that Cassie has some

relief.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

PAI, Intl.

Note: All advice or comments are personal opinion only, and

should not be substituted for professional medical consultation

[Guest guest]

Patty...I haven't been on long enough to know all of Cassie's

history, but I am wondering if she also has elevated lipids,

especially triglycerides with her Panc attacks> The reason I ask is

the elevated trig's HIDE teh amylase and lipase levels so they appear

to be normal...so I would think it would not matter her age!

Have you got doctors in a town nearby who would treat her? I know the

frustration of finding a doc for a child her age...in between child

and adult. My daughter was suffering from chronic migraines/tension

headaches and not one of the neurologists would see her ... I had to

drive miles and miles from home to take her to a pediatric

neurologist.

And just so you might feel a little better, not quite as annoyed at

the doctors...it isn't just the " size " of the child that has to be

taken into consideration when treating her but the maturity of the

child's body systems and the organs etc...things just work quite a

bit differently in kids. For example ...children experience migraines

in the crown of their heads while adults experience them in the

temple region. Drugs for ADD/ADHD (ones like Ritalin)are amphetamines

which are " uppers " for adults, but work as " downers " in children...

there are others but I can't think of them all...oh, kids unders 18

shouldn't take aspirin because it can cause Reye's syndrome, but it

doesn't affect adults in the same way...so you really would prefer to

have a pediatric GI doc working with her so you can feel confident

they are knowledgeable about how CP happens in children...

Best wishes....

Jeannine

> Hi all>

> Sorry I haven't been around the last few days, my computer is

acting up and > so is Cassie's CP. ......snip.....

> Oh yes we > have been over and over with them about pain without

elevated levels and they > agree but that couldn't be Cassie. She's

only been sick since October 2000 > they say, not long enough. Even

after we got SPINK1 diagnosis and Dr Fox in > Boston to agree that

she has been sick since birth they don't agree here. We > are so

very helpless. ........snip........

> How much longer is she expected to endue this. what do I do feed

her Fried chicken, Mashed potatoes - lots of butter and gravy etc..

ill her levels elevate enough to make them happy... What happens if

they don't?> > Sorry to bee so long winded, but my frustration is

extreme.. God bless you > all > Patty Hurst

[Guest guest]

Patty,

have you thought about talking with Dr. Sutherland about

having the islet transplant surgery? If Cassie is not

getting the help she needs regarding her pain levels, this

might be something you want to consider. I know Peg's son

has done very well after the surgery. It's one

possible solution to help her. I wish I knew some doctors in

the area who would be able to help her, but I don't since

I'm in CA. Give Cassie (and yourself) a big hug. Have you

thought about looking up organizations that help kids with

severe health problems? They might have some ideas on how to

help Cassie get the healthcare that she needs, especially

the pain relief? (i.e. make a wish foundation, etc.)

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.