Splenectomy or other options?

[RJanna]

Our 6½ year old son has chronic itp. He was diagnosed with itp at 18 months old. His platelet counts have been all over the place but mostly low. We would be happy to have platelet numbers at 20,000-50,000. He has been on promacta for the last several years also has had many ivig transfusions. He is currently at the highest dose of promacta that is FDA approved for kids which is 50mg. Insurance will obviously not cover a higher dose. At the time, it seems like the promacta is not working for him and with ivig shortage that is not an option either. The hematologist is now recommending a splenectomy. Nplate could be an option. We would have to drive 2 hrs every week for the Dr to give the injection. Or is a splenectomy our best option at this point?

[lmh1959]

Well I was on Nplate a few years & it worked well for me, but I’m not sure how it works on children. I was diagnosed at 3000 & did try lots of treatment options, but Nplate worked best for me. I would say Nplate put me in a safe range of 60-100! Best of luck to your Son!🙏

[RJanna in reply to lmh1959]

Thanks! We are doing a bit more research on nplate...to see if it's an option for us

[Dahle2424]

I was given that option, & flat out refused. The odds are 50/50. Change doctors who are closer. My count is a constant 8K. and stopped all treatment years ago doing just fine.

[RJanna in reply to Dahle2424]

So far we're hoping to find another option besides a splenectomy. Checking out if we can find a doctor closer that will do nplate.

[Dahle2424 in reply to RJanna]

I had my nplate injections @ Weill Cornell Medicine in NYC

[Raven06]

Hi there, my son who is now 14 has had Itp for 4 years now. Revolade or eltrombopag works wonders for him. He has had to have the dosage increased during this time but since he’s grown a lot it’s only understandable. Now his platelets are above 50 which means he can play some sports without me being a nervous wreck.

[RJanna in reply to Raven06]

Thanks for your reply. It's good to hear from someone that has a child with ITP. Since a large percentage of children under 5 outgrow ITP, it feels like there's still a lot of unknowns out there for us.

[Raven06 in reply to RJanna]

Absolutely. As you are saying there’s a lot of unknowns for us. My son’s first treatment was rituximab for four weeks. That didn’t do anything to his platelets unfortunately. Our doctor then suggested revolade since more and more children seem to response positively to this and are now allowed it. She did mention splenectomy as an option but told us about the pros and cons with that. He now has his bloods checked every 4 weeks and so far his liver results are okay. There are rules as to when he can take the tablets and what foods that can impact on revolade. He has been on this for three years and gotten into a routine.

He is now back playing soccer. The latest platelets were 76. But before treatment with revolade he was below 10 at times. Sorry if this sounds like an advertisement it is just that treatment that has worked for him so far😊

[Kerryc]

Hi, I can’t speak from personal experience but if it were me I would try everything before splenectomy. Sorry you and your son have to travel this rough road.

[RJanna in reply to Kerryc]

Thanks for your advice and caring words. I look around and see so many children that have worse things going on in their lives but, yet itp is what we're dealing with and not always easy.

[RJanna]

Well we're back to square one. Insurance has denied our request to switch to Nplate. I guess since it is basically the same drug as promacta (eltrombopag)... platelets are down to 3,000 as of this morning.