The worse outcome...

Has anyone else experienced the worse outcome imaginable?

To me, the worst outcome imaginable would be to lose my child to ITP (or more likely, as a side effect or reaction to a treatment for ITP). I truly hope that is not what happened to you! If you are only thinking about how common that outcome is, there is an article that I've posted beforeon here, called "Can I Die?". It was written by a couple of pediatric hematologists that said there was less than a 1% chance or dying from hemorrhaging to death. It was reassuring for many. Since I've been on this site for a number of years, I think I remember hearing about only two people dying. One was an older man who had multiple, severe health issues and was on numerous medications. The other one was really sad--a young mom with two small children. I read that she died, but don't know of the details, but it was alluded to that her death was in reaction to a treatment. Either case, a tragedy to their families. But, very, very rare.

Of course the worst outcome would be death, but as April said, that is very rare. There are many variables here. If your daughter responds to treatments, any treatment, the likelihood of anything bad happening is nearly non-existent. Of course there are bad reactions to medications, but that is even more rare.

Can you give us more details?

Here is the article I was referring to:

Can I die from ITP?
By James. N George, M.D., Oklahoma City, George R. Buchanan, M.D., Dallas

www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf

Gracie, age 8.5, was diagnosed August 22, 2011. December 4th started a two day journey. She showed no signs of having dangerous bleeding. I harassed an expert in Texas regarding her treatments. She had a world renouned Dr here at Seattle Children's. November came a lot of pain for Gracie. She was no longer able to sit cross cross apple sauce, she thought about how often she would have to need to go upstairs to her room. The pain got so bad we took her into the emergency room Wednesday, November 30. Hemo never came down stairs. The er did a cat scan but found nothing. She was released within an hour of arrival.

Saturday December 3rd was her last full day of life. She woke at four am Sunday morning with a pain (happened just about everyday for weeks) At 11:15 am December 4th, I called 911 because Gracie could not move her body, she could talk, knew some information but was paralyzed. Her eyes were very spuratic and wild not focusing.

Longer story short Gracie passed away December 6, 2011 at 2:51 am. She still showed no signs of dangerous bleeding, even as she died.

I'm so sorry to hear about your loss, that is just awful. What did your daughter die from?
Erica

I guess I left that part out. She had a bleed in her head. She is in that rare less than 1%.

On the old forum, there was a mother here named Christine, who lost her daughter, Casey, soon after diagnosis, in 2007. She founded a charity, Casey's Cause. ITP deaths are rare, but that was a big fear for me when my daughter was diagnosed. When it is your child, the 1% becomes 100%. I am so sorry for your loss.
Norma

I am so sorry to hear this. That is indeed the worst outcome.

Lily

Dr. Buchanan is who I contacted. He read Gracie's file. He wasn't concerned at all. I fear they just don't know enough to fully say her leg cramps where not related to ITP.

I'm so sorry. Did she have a platelet count done at any point?

She averaged below 5000 at most of the four month illness. She was in the hospital tree times.

I am sitting here crying after reading your story. It touched me so much because i have been fearing this outcome for my 12yr old daughter. I could only imagine the pain you and your family are going through. Im am so sorry for your loss on a beautiful daughter. We have been battling I.T.P. for over a year now.

I don't mean to brin anyone fear or tear. I just want to talk with someone else who hates ITP for the same reason.

Hi Butterflygirl

I am very sorry to hear about your daughter. Do you Facebook? If you go onto the PDSA facebook page there is a lady whose little girl died from ITP earlier this year. I think she last posted in mid July.

Ali

I, too, am so sorry to hear about your little girl. There was another little girl who's mother posted on the PDSA f/b site (I think she lived in Texas). She was the same age as your daughter when she passed away. It's so very hard to understand what goes on and why they can help some, but not others. Did they try different treatments for your daughter?

I meet one older man whose platelets have been below 10,000 for about 5 years and he still seems to be okay.

So very sorry,
Dee Dee

She had IVIg twice and winRho once. She had very bad reactions the first IVIg but the other one she did fine. I the other My husband and I never had peace about Predinose (sp), so she was never put on it. IVIg treatment only provided increased levels for a max of two weeks then 8 days the second time. The best treatments success rate is 80%

So sorry to hear of your loss!!!

There are so many parents of children who use to do a wait and see approach and sometimes their platelets would go back up spontaneously.

I feel so bad for you to have lost your little daughter. Most doctors probably don't think this will happen to a child and may think that their platelets will go back up on their on. Do you belong to a support group to help you through this?

Yes for our grief but not ITP. My hope was to find someone here however I am glad for others that it appears I am it, at least on here. Take care and good luck everyone.