Mother just fed up with ITP and no cure for son.

My son has ITP,he was diagnosed at 16 yrs old and is now 29. He had it for awhile and it went into a remission and it didn't reoccur again until about 6 years ago when he went through a traumatic event. The doctors have had him try every different treatment available. He even did the chemo treatment and now they have him going to get what he calls his "cocktail" every Friday at the cancer center. I'm FED up with this disease and how its taking its toll on his health and his life. Is there anyone else on here who feels this way and I feel like im watching him die everyday. Its breaking my heart and there's nothing I can do.

What has he tried and what is he doing now? How are his counts without treatment and how are the symptoms?

The treatments can do more damage than the illness over time. People rarely die from ITP, but many treatments over the years can take a toll on the body. Has he tried N-Plate or Promacta? Most patients respond to those with few side effects.

The treatments can do more damage than the illness over time.

So true. And the thing is there is a road you can take to avoid all that suffering. But this path is outside the conventional lines of medical treatment, so most aren't aware or never find a better way out.

Most people who have autoimmune conditions of some kind have them for life. I don't think any of these autoimmune diseases go away completely or are entirely cureable. You pretty much have it for life. But for some who have ITP in particular, there are things that work beyond the drugs and strategies offered by western medicine. You have to look for it. Joan Young (founder of this site) taught me this and inspired me to find other ways to manage my ITP. Soon it will be almost 30 years that I have had it.

I have been to hell and back. I know full well what its like in these platelet crashes. My counts are stable these days and run 200 - 250k. And I feel very blessed.

cheers,

john

This sounds like a terrible situation. One option sometimes mentioned here for refractory ITP is splenectomy. If you haven't discussed that option with your treatment team, it may be worth considering. There are threads in this forum and members here who have had theirs removed, and I'd like to think that they'd be helpful.

There are other potentially helpful options, depending on what you've already tried and what your son's entire situation is. From dietary modifications and supplements to new or less common forms of drug therapy, you may have more things to try, any one of which could help stabilize your son's situation and keep his counts at a safe level.

If you can offer some details about your son's condition and treatment up to the present, you'll likely get more specific ideas in response.