Re: Fwd: PSC Partners Seeking a Cure Announcement

[Guest guest]

Hi all. My name is Ostos and our nine year old son, Tyler, was recently diagnosed with PSC and Ulcerative colitis. It is so hard for people to understand what he has been going through because at times, he is severely fatigued, literally exhausted and has suffered from severe abdominal pain. Once he stared the Ursodil, the pains subsided and his liver tests stabilized. However, he still is ill frequently, he gets fevers that last weeks on end. His colitis is still active. He has had liver biopsies, ERCP's, MRI's, Cat scans, 2 blood transfusions for low hemoglobins and another colonoscopy scheduled for next week. He has blood tests frequently and has had two hospital stays. Because of the steroids, he does not like to play outside in the summer because it is exhausts him. We do have some friends with pools which is great because swimming he can do and loves it. But, he recently withdrew from baseball because of his fatigue. At least his last game, he got game ball. Things are just really hard and we keep hearing there is no cure for PSC. What troubles me is they know he has the disease, but he now needs to only go back every six months or so because apparently the disease progresses slow. So, what are we to do, just sit around and wait for it to progress????? We feel helpless.. We are devastated and want to help him feel better and enjoy his life to the fullest. I feel for all of you and each individual situation and I am glad to have joined this group. We are going to partake in the Road to JAcksonville and my mom and I are planning to come to the conference next year. We plan on doing some hand outs re: the PSC virtual walka nd will get started in fund raising. So, any advise, comments prayers etc. are welcome.

Our hepatologist is Whittington at Childrens Memorial in Chicago and we have been advised he is one of the best. Any one else know of anyone better or is this really it, just sit around and wait for the disease to progress. One more thing his CA-19 tumor marker test was elevated which can indicate the type of cancer that forms in the bile duct. But, they do not seem to0 worried just to retest it every few months. any clues?

Sincerely,

, , Tyler and McKenna Ostos

Streamwood, IL 60107

sgedgaud@...

leedeubert

leedeubert

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06/15/2007 07:33 AM

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Fwd: PSC Partners Seeking a Cure Announcement

Good news everyone !! Check out our progress on the Road to ville !! We are on our way !!  Thanks everyone, together in the fight ,whatever it takes!

PSC Partners Seeking a Cure is hitting the road and raising money for PSC research.

The Road to ville

The Road to ville is ready for walkers, runners, bikers and any other means of travel you want to do .

Everyone is invited to join us on the road to ville FL.  for our 2008 PSC Partners Seeking a Cure Conference!

Along that road we will challenge ourselves to raise money for much needed PSC research.

We have set a big goal to raise $100,000 by the time we get to ville !!!

Let's pave that road together one mile at a time. Donate or raise $50/mile and travel with us the 2,000 miles from Denver to ville.

Watch our progress, participate and cheer us on !  We need new studies for new therapies that will change the future of PSC care.

Please help us advocate donor awareness along the way. Until there is better treatment available, liver transplants will still be necessary.

To watch our progress and for more details visit our " Road to ville " map at :

http://www.pscpartners.org/RtJ.htm

We are together in this fight, we will back new research for new treatments. 

The answers are out there, let's help start the search !!

On your mark , get set, go !!!!!!

Lee

[Guest guest]

Dear ,You are in the right place. This group helped me survive when my son was diagnosed.Back then I was exactly where you are now in feeling and thought.Then I needed to turn devastation into action.The conferences and this group have made us feel proactive and to know that there are things we can do.For instance, after our 1st conference, I had my son start taking fish oil along with his usro.Because of the data presented there and shared here about high dose urso, I took the studies to my son's Dr. and hadhim put on the higher dose.Also I learned at the first conference about probiotics which are important for my son because he had his colon removed.You can read about these things in our newsletters or on some in the file section.While diagnosed at UM in Michigan, we did take our son to the Mayo in Rochester where they have a reputation for PSC.I'm not sure where the best pediatrics are. Your son is young, there is time to learn about PSC/UC and what will work best for your son.Don't lose heart. Ask your questions here and someone will try to answer.I know that you have found the Partners web site, did you take a look at the "Living with PSC" brochure?My son was diagnosed in 04 when he was 21. He was a junior in college.  He has been in and out of the hospitals, and has also had all the tests and transfusions your son has had and then some. He is now seeing his Dr. every 6 months as well. That awful helpless feeling is now turned into action, I raise money for research, we no longer sit and think about his disease progressing but are more interested in him progressing in life. He has moved to NYC and is struggling to become an actor. Now he is more worried about paying rent then anything else. Thank you so much for joining our efforts to find better treatment for PSC.I am optimistic about better future treatment for PSC and UC. Even now there are new breakthroughs happening.Together in the fight whatever it takes.We will make a difference.My best to your whole family and for your son.LeeQuestion, do they treat his fevers that last so long with antibiotics?Hi all. My name is Ostos and our nine year old son, Tyler, was recently diagnosed with PSC and Ulcerative colitis. It is so hard for people to understand what he has been going through because at times, he is severely fatigued, literally exhausted and has suffered from severe abdominal pain. Once he stared the Ursodil, the pains subsided and his liver tests stabilized. However, he still is ill frequently, he gets fevers that last weeks on end. His colitis is still active. He has had liver biopsies, ERCP's, MRI's, Cat scans, 2 blood transfusions for low hemoglobins and another colonoscopy scheduled for next week. He has blood tests frequently and has had two hospital stays. 

[Guest guest]

Hi ,

It is difficult for others to understand how your son feels, but those

of us here do. Someone here has gone through what you are going

through, and can answer any questions. I know how difficult it has

been to watch my husband who was diagnosed in his mid twenties deal

with everything, I can't imagine watching a child, but there are other

mothers on here who know more what you are going through.

Ask questions. I have been frightened and worried about so many things

over the years, and I come here. It helps just knowing there are

others out there. Sometimes just being told that someone else's

doctor is doing what your doctor is doing helps a lot.

wife of (30yrs old)

PSC & UC 2000 Jpouch 2004 TX Nov. 2006