ITP NEW

My son is 28 years old he has mental retardation and mild cerebral palsy. He has an IQ of 52 and he understands what you say to him, but if it is not simple information than he can not retain the importance. He does communicate with you but it is limited. Well anyways he started getting bruises about a month ago and we took him to the doctor for a yearly tb skin test for his adult day program, we asked them to do labs to check his cholestrol and they called the next day and said, he needed to come to lab to retest, he platelets were at a 0(ZERO)we did not understand all of this but knew something must be wron for them to call him back the next day. After 2nd test he was still at a zero so they said to take him to er. We went to er and they started giving him high doses of steroids, for 4 days he took these meds, and his platelets raised up from 0 to 2 to 6 12 to 24, the doctors said the medicines were working and they should stay in his system for several weeks. They said he has ITP, and we would watch this course over several weeks. He was home for 4 days and was very tired, still had the red dots (peteciah) bruises where they took blood, and starting bleeding in his gums, he had lab work drawn that day and they were back at 0 sat in lab waiting for doctor finally called primary doctor and they said to take him to er immediately, get to er and he has to go to the bathroom, Blood all in his urine doctors panic and do a blood platelet transfusion, start a IVIG and do a bone marrow biopsy. He stays in hospital for another 4 days and his counts got all the way up to 121 unbelievable but to be expected after 3 days of IVIG, we were told this treatment should last several weeks and he may not have to have anything else. We had them to ultrasound because hemocrit and hemoglobin were also low and they kept changing they thought he might be bleeding eternally, the ultrasound showed an enlarged spleen, but that is it, they said that is normal with ITP. Biopsy is showing his bone marrow is producing all the cells fine but they being attacked almost as soon as he produces them. We are afraid of the Reduxin, and removal of spleen because of his disabilities and him being able to communicate to us exactly what is bothering him. We are afaid he will start bleeding ag

we are afraid he will start bleeding again or will bleed eternally and we will not know it. There are things to look for now but it is still uneasy knowing this could happen at any moment, especially since they only want to do blood work weekly. Does anyone have any suggestions? We feel like the doctors deal with this often but they are not taking it seriously. Maybe they are and this is all that can be done.....thanks for your post

Taft:

I think it sounds like the doctors are taking it seriously. They seem to be doing the standard things for ITP. If counts won't go up, they can only do so much, and they are trying. So far, they have used the typical first line treatments and are moving to the second line. Getting counts once a week is okay; they are keeping tabs on him. No point in additional trauma with draws; that can get old fast.

A slightly enlarged spleen might be normal for ITP, but beyond that, it is not common. I'd ask how enlarged it really is. If it is dangerously large, he may need a splenectomy regardless of the ITP.

Although Rituxan sounds scary, it is not much different than IVIG as far as infusion reactions and can be a good treatment to jump start remission (IVIG will not cause remission). I do consider it to be a heavy duty drug, but it can be successful often.

Stick with us and learn as much as you can. Hopefully, we can alleviate some of your fears.

Good reading:

www.pdsa.org/forum/5-newly-diagnosed-a-frequently-asked-questions/118-frequently-asked-questions.html

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Thanks for the information, it is helpful. I am most worried about the bleeding out again, and then during surgery if he has his spleen removed.

They can usually keep bleeding under control during splenectomy. A few people have had it done with low counts. Not to say it isn't scary, but that is when platelet transfusions really come in handy.

It is very, very rare to bleed out with ITP. A lot depends on other clotting factors such as platelet function....everyone is different there and some have more symptoms than others. Keep the hope, sometimes counts go up when you least expect it.

It does sound as if they are doing the right things, at least based on my experience. Rituxan is major league stuff but it has helped a large number of ITP'ers. Were I in your shoes, I would seriously consider giving it a try, since a remission from the IVIG would be extremely lucky. There are other treatments too, of course, and you should talk through them, with the pro's and con's, and then make a decision. Other than Rituxan, Promacta is probably the other big option at this point.

hello went to doctor weds and his platelets were back to 8 put back in hospital through er, did one ivig and 2 bags of iv steroids, counts went up to 12, waiting on doctors to decide what is next???Doctor said he would recommend a second opinion of bone marrow biopsy and ITP labs. It is good that he is not bleeding this time and they check eternally also with a ct. will keep you updated..thanks

I was scared to death letting my 18 year old daughter have the Rituxan....did a lot of research, asked a lot of questions....and so far (knock on wood)it has been her saving grace.....
Went from 4 weeks under 10,000 to right now about 200,000. We are 3 weeks out from last treatment. Ask any questions here....lots of knowledgable people.

Good luck!

Cathy