18 yr old with ITP after 17 yrs without it

Hi all,

My name is Kelly and my 17 yr old son (will be 18 next mth) has ITP and we live in western NC (about an hour west of Charlotte). He has had a relapse of ITP after going almost 17 yrs without any episodes.

When he was 11 mths old he was hospitalized for 3 days and had gammaglobin treatments. His first episode was after a virus and this episode seems to be the same since he had a 24 hr stomach virus the week before his petechaie showed up. He did have the flu last year, but no symptoms of ITP afterward. Makes me wonder if his platelets have been low since he had the flu.
Since he was so young when he first had ITP he doesn't remember it and thank God he said something to his dad’s girlfriend when he noticed the petechaie or we wouldn't have known. He also had it in his mouth, which he didn’t have the first time. This really scared me because he had black spots all over his mouth, inside and some on his lip.

The ER didn’t even know what it was, so luckily his dad knew and told them what it was. They wanted to send him to Charlotte, but we told them that he was treated at a hospital about 20 mins away when he had it the last time. The ER dr called the oncologist on call for his hospital and the oncologist on call at the hospital he was treated at when he had it the last time, they had two different treatment plans and the ER dr asked us which one we wanted to use.

His platelets were at 2,000 and he was given 2 units of platelets in the ER to try to get them up to at least 20,000 before they let him go home. The first unit brought them up to 17,000 and they went down after the second unit to 14,000, but they let him go home anyway and had to see an Oncologist then next day.

The Oncologist gave him an IV treatment of Wen Rho and made an appointment for the next day. At that appointment his platelets were between 13,000-14,000. They started him on 60mg of prednisone and Nplate (I'm not sure of the dosage on the Nplate). His oncologist does NOT want to take his spleen, which I tend to agree with, especially since he is so young.
That was on Thursday and when he went back on Monday his platelets were at 56,600. We thought that we were going in the right direction, so the decreased his prednisone to 40mg and told him to come back on Thursday for another Nplate injection.

When he went back that Thursday, his platelets were only up to 57,000, so they gave him the Nplate and told him to come back on Monday. On Monday his platelets were down again to 43,000, they didn't change anything and told us to come back on Friday for his Nplate injection and another platelet check.

He went back yesterday and his platelets were down again to 34,000. They decreased his prednisone down to 30mg and doubled his Nplate injection and told us to come back next Friday.

I have some questions, any advice would be helpful.

1.Have you tried the Nplate or heard of anyone else who has?
2.If so, how long did it take for the Nplate to stabilize the platelet count?
3.How long should we wait before seeking a second opinion?
4.Has anyone dealt with a situation where the parents were divorced?
5.If so, how did you handle the diagnosis and treatment the parents don't always agree?

Thanks,
Kelly

1.Have you tried the Nplate or heard of anyone else who has?

I have used Nplate for 3 years, after trying 6 other treatments.

2.If so, how long did it take for the Nplate to stabilize the platelet count?

Several months for me. My count would go up for a couple of weeks and then crash down, so we increased the dose and up it would go again. Eventually got stable on a dose and then had to gradually decrease the dose again to stop the count going too high. There are 10 doses for Nplate, I got to dose 5 before coming back down to 1 and I now use it once a fortnight instead of weekly.

The idea of Nplate is to get a count of around 50. Too high and they worry about clotting conditions.

3.How long should we wait before seeking a second opinion?

Get a second opinion if you feel the doctor you are seeing isn't helpful. I liked to take some decisions about treatment myself and wouldn't have liked a doctor who didn't allow that, but what you look for in a doctor may be different.

4.Has anyone dealt with a situation where the parents were divorced?

I am divorced and when my son was ill, not with ITP, I took all the decisions as I was the parent with care.. my son lived with me, and just let my ex know what was happening.

Your son's care sounds fine to me, but I am not a doctor but a well informed patient. It doesn't sound as though the prednisone is doing any good so if it were me I'd taper off it as quickly as possible. Counts such as you describe, 43 and 57 are fine and perfect for Nplate treatment. The 34 is a bit low and an increased dose was the right thing to do. It sounds as though your doctor knows what he is doing.

Good luck.

That makes me feel so much better. I basically just wanted to get an understanding of what to expect with the Nplate.

Thanks! Kelly