Very Frustrated & Worried!

My son was 16 when he was diagnosed with ITP. He is 17 now and cannot do any of the physical activities he has been doing since he was 5. He is a great football/basketball player and it is so hard for him to watch his buddies on the high School team and not be able to play. I feel awful for him.
He takes up to 50 pills a day. The Steroids are making him so hungry all of the time. I did'nt know one could eat so much in 3-hours and not get full.
His father and I are very worried for him and frustrated as well. He has had the ivig, winrow. His numbers can go up to 47,000. And we think that is great, we are finally on the right path. And then the next week, he get's a nose bleed that last's the entire day, and go to find out his platelets are at 1,000. It is so scarry for me to think about hemmoraging, brain hemmoraging when his count is so low.
I would appreciate anyone input on my story. I need some kind of support! We want to take Zachary to the Itp converence in Denver, CO. this summer. Does anyone have any experience with going to these conferences? I would like to hear from you about your experience!

How long has your son been on steroids? If it's a while now and they obviously aren't doing any good then you should ask the doctor to wean him off them and try something else. Don't let him stop them suddenly though as that can be dangerous. There are many more things to try.

The newest international guidelines are here..
bloodjournal.hematologylibrary.org/content/115/2/168.full

I've been to some conferences in the UK and found them to be very good. The doctors there are always keen to share their knowledge and it was also good to talk to other people with ITP and share experiences. If you can go I'm sure you'll find it very worthwhile.

Have you ever had a second opinion? If those are the only three treatments he's been offered, maybe it's time for another doctor's perspective. There are other options available that could possibly change his life.

50 pills a day? What are they? A person with ITP shouldn't be taking 50 pills a day. Does he have any other medical issues?

Sandy

They are 40 Amacar for bleeding, they just tapered the Prednisone to 60mg per day and 2.5 6-MP, the Prednisone was started about 6 weeks ago and has varied in dose, the 6-MP started 3 weeks ago (from what they told us it will take up to 4 weeks to begin to see any results. The problem is that when Zacks platelets went to 43 last Thursday the Hematologist told us to stop the Amacar and reduce the Prednisone to 60MG from 80MG per day. The nose bleed started Saturday and I gave Zack the Amacar to hopefully help his nose to clot and was told by the oncall doctor to continue to give it to him at 40 pills per day. Zack was diagnosed as chonic 3 weeks ago and they no longer felt the IVIG's would do him any good so they didn't up his platelets. I actually wrote you Thanking you for your input under the General discussion section ( need help dealing with ITP) and did not realize that Betty was also on the site. It seems we are all going in different directions trying to find answers. I do have a question though Sandy, I recieved a call today from the Childrens hospital concerning Zacks depression, the person I talked to wanted to set up a meeting and in the same conversation talked about putting him on more medication which became really frustrating quick, I told her that I felt the last thing Zack needed was to be taking more medicine. What are your thoughts?

We have a meeting with the Hematologist on Tuesday and the person I talked to today said she would be touching basis with us when we are there.

Thanks
Jeff and Betty Engen

OH - it's you! Sorry - didn't get the connection.

I answered you in the other thread.

Wow 40 pills for bleeding control! I have never heard of that.

That's alot of pills, I would be asking the doc if there is another treatment available for your son.