Re: Daughter's diagnosis

[Guest guest]

I should clarify. She left Waldorf school at the end of 5th grade and went to

another school. As far as when her behavior manifested, there was never a

time when she was normal. She never bonded with us. She never learned

empathy for another. She always had rages, never outgrew them, she was

always very manipulative. She was way too smart, she knew how to lock up

her baby sitter when she was 4, fortunately, I caught her! She never learned

delayed gratification or how to work for a goal. She always had trouble with

keeping friends. She always thought she knew everything and any class she

was in should watch her to see how it was done. She would do something

that she regreted and sit in her room berating herself and talking to herself

and then turn around and do it again. i caught her in about the third grade

using scissors to cut little snips out of her leg, fascinated with it all. i

don't

know what I said to her, but she never became a cutter. She can not stand to

be alone, needs other people to play off of. I could go on and on, the point is,

she has always been alot to deal with. How many three year olds come in in

the morning and pull your covers off and say " Get up, I'm hungry. " As she got

older, the behavior got bigger and more explosive. We really didn't try for a

diagnosis until into 5th grade. The councilor we saw said she was fine and I

must have undiagnosed problems. After that, I tried music therapy, then we

went to Spokane to see Lawrence Weeks. BIG MISTAKE. He has written a

book about how to take control of your family and some friends had gone to

him, so we tried. He decided to experiment on us. Without our concent. If you

want particulars and feel they are neccesary, write to me directly at

jeanscranium@.... We finally opted for therapuetic boarding schools

and they had the same diagnosis as Dr Amen's clinic did. But they were using

behavior midification to try to reach her. No luck. We only went to the Amen

clinic two and a half months ago. A friend gave me " I Hate You Don't Leave

Me " and I found my daughter so many times in that book. And now i am here.

Jean C

[Guest guest]

Dear Mark;

I am so sorry to hear about ne's diagnosis of PSC, but glad that

you found us. Yes, it's very frightening to read about PSC. I was in

your shoes 5 years ago when my then 18 year-old son was diagnosed

with PSC and UC. The future seemed so bleak. But looking back, he has

really had very few health problems in the last 5 years, and his

liver function tests are now the best that they have been in 5 years.

He's on a cocktail of drugs and supplements (Asacol, ursodeoxycholic

acid, rifampin, fish oils, vitamins and extra folic acid), and this

combination seems to be helping [at least as assessed by improving

liver function tests]. I can provide a rationale for why he is taking

each drug and supplement, but will defer that to another post if you

are interested. The main point is that 5 years ago we didn't have

much hope, but here we are 5 years later, and his health is still

very good. He graduated from college, and is now in his 2nd year at

medical school (Indiana University) in the MD/PhD program.

Five years ago, my wife and I were determined to do something

positive for the PSC cause, and so we set about collecting the

world's literature on PSC, IBD and autoimmune diseases. We now have a

collection of over 93,000 abstracts and 50,000 full papers. I dare

say that this is one of the planet's best collections of PSC/IBD

articles? It's a huge database that is constantly being added-to and

updated. I can't yet claim that we have found a cure, but there are

certainly some interesting glimmers of hope ... and its these

glimmers that keep me going on this project.

We also got involved, along with many other members of this support

group, in helping the PSC Partners Seeking a Cure foundation get off

the ground and running. The foundation has now had 4 conferences, is

getting to know all of the top PSC researchers world-wide, has

contributed funds to support the North American STOPSC research

initiative, and will soon begin to fund PSC research directly via the

PSC Partners Seeking a Cure grants program. All of this has been made

possible by dedicated individuals volunteering their time and energy,

and a network of their friends, colleagues and family members

contributing dollars to support research. I have to conclude that

this is very positive progress indeed.

I would like to encourage ne and you to think about coming to

the PSC Partners Seeking a Cure conference in Chicago next May.

ne will meet several PSCers of her own age, sharing the same

health issues and concerns. You will meet an incredible bunch of

caregivers who can share valuable information and provide support.

Diagnosis is a terrible time, for sure. But hang in there, keep hope

alive, and ask lots of questions. Someone will try to answer them.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

www.psc-literature.org

www.pscpartners.org

[Guest guest]

Mark (and ne),

Hi! Welcome to the group. I'm so sorry you have to be here, but so glad you've

found us! I'd encourage you to think about Dave's advice and consider attending

the next PSC conference in Chicago, May 1-3. We're a very friendly and informed

group and it really helps to be able to discuss things with people who know

exactly what you're going through. I went for the first time last year and can

honestly say it's made a difference in my life. To be honest, I wasn't sure I

wanted to go. I thought it would be very depressing, frightening, etc. and, at

times, it was a little scary to hear the information. But more than anything,

the conference gave me a peace I didn't have before, the ability to share things

with people who understand, the confidence/knowledge that I'm not all alone out

there in the world fighting this disease and I even made some great friends as a

bonus!

You mentioned ne isn't doing too well with her diagnosis. I'm so sorry to

hear that, but it's completely understandable. I'm in my 30s, not my 20s, but

if she'd like to talk to me about anything, she's always welcome to contact me.

In addition, a friend and I have started a PSC support group on Facebook for 20

to 30 year olds (and those around those ages). It's very informal, discussion

boards, places to ask questions, make friends, share stories, etc. If ne's

interested, we'd love to have her join us. If she doesn't have a Facebook

account, it's free and easy. She just needs to go to www.Facebook.com and

follow the prompts to set up a free account. Once in Facebook, she can either

search me out (Sandi Pearlman) or search PSC Partners to find the group.

Again, I'm so sorry you had to join us, but I'm glad you're here. Don't be shy

with your questions, feelings, sharing...one of the things this group is best at

is being here for each other!

Best of luck!

Sandi in VA