N-Plate update

Wanted to let everyone know how it is going with N'Plate in case you are ever considering it for your child.

Mia (age 15) has now done 6 weeks of N'Plate. She gets 250 mcg per week. We got to the hospital, get a CBC, then wait for the n'plate to be delivered from the hospital pharmacy. She has no reaction whatsoever.

Her platelets levels are evening out -- she is typically around 80-90K when the CBC comes back. (Prior to starting N'Plate she was under 10K for a few weeks). The hematologist is comfortable with us now doing it at home. They've arranged through our insurance company to have it delivered to our house every week, and a good friend who's a nurse will give it to Mia every Monday. We will get a CBC separately every other week just to make sure her platelets are not either too high or too low.

I realize we are lucky on a zillion fronts, two in particular: 1. Mia's body responds to drugs (not always happily but she does respond) 2. Our insurance appears to cover just about anything (knock on wood - even the hematologist was surprised at how easily this went through)

I worry in a quiet but steady way about the long-term effects of all the various drugs we have poured in my daughter's body. The longitudinal studies just aren't there yet for stuff like N'Plate.

Mia wants to do Rituxan again (3rd time...) in March so that she can hopefully get a "free" summer. The hematologist is definitely raising the topic of splenectomy. She feels Mia would be a good candidate because she does tend to be responsive -- (??) but Mia is, as she put it yesterday at the hospital, "just not there yet." I'm feeling agnostic really, and probably ready to give that a go if it gives her a good chance at beating ITP. Again, I worry about the long-term effects of Rituxan and N'Plate.

That's our news. I don't think a lot of kids/teens do n'plate so just wanted to share our experience. Praying for high platelets for all your kids.

You could try Promacta pills. This is working for my wife she suffering ITP for last 3 years. She is on Promacta for last 1 year

my daughter who is 4 is going 6 months now with only one IVIG treatent for the past 4 months she has been at 2,000-3,000 platelets. the doctors are now suggesting we start on Nplate. how long has your daughter been dealing with ITP? this has been very scary for us. she had such a bad reaction to the IVIG we are scared to do anything!!!

So sorry to hear your young one is dealing with this. My daughter is now 15 and has had it about 3 years. She has trie different treatments, including "watchful waiting." She had 2 very bad reactions to ivig - so I understand your concern -- but Mia has not had a bad reaction to ANY other medication (except for predinsone, which makes her hungry and cranky just like it makes everyone else who takes it.

So Mia has done in order:
Anti - didn't really work
Ivig: bad reaction but gave her several weeks each time
Rituxan: has had 4 rounds of this two times. first time gave her 9 months remission; 2nd time gave her 10 months. (Will probably try one more series of the Rituxan in March 2015 with the hopes she'll be able to go on a student trip this summer out of the country.)
NPlate: since September. Keeps her at about 100K. We are now doing the weekly injections at home.

I think it's difficult to give our kids these drugs. My husband and I -- and our daughter (because she is 15 and also must be on board re: any decision re: her body) have gone through rather long discernment processes for each of these protocols. We aren't just willing to try what's next just to try it, especially with the Rituxan and NPlate. I think every family has to come to their own decision in their own time. I do worry about the potential long-term effects of these drugs (and there are few if any longitudinal studies on this), but we are also so grateful they give Mia a reprieve from the ITP. She responds to the drugs and, in this, we all know she is fortunate.

I wish I could give you more concrete advice, but of course I cannot. This is a hard disease in that there are no absolute answers. Every family just has to do the research and then make the choices that are best for them. For some families this is a decision not to treat. We are all here to support on another, and I will always write you back.

LAST BUT NOT LEAST: please remember that ITP is often acute, esp in younger kids, and can resolve naturally, on its own, within the first 6months to a year. I hope this is the case for your daughter!!1

Keep us updated.