Danica at 4K - starting round 2 of Decadron

We saw Danica's pediatrician last week. I told him that Dr. Devaraj only wanted Danica on the Decadron for three months max, if it did not work, and that it could take up to three weeks to see a change -- THEN, last week he told one of the nurses that it could take a few months to see an improvement. Ugh!!! I don't think that we would want to put Danica through this agony of the Decadron for more than three months - especially if we do not see an improvement.

The pediatrician mentioned Eltrombopaq (Promacta, I think). He read about it in some Pediatric 2010 book that he had. He knew nothing of it, just what he read. He thought that maybe we should talk to Dr. Devaraj about it (hmmm, I kind of thought that maybe HE should talk to Dr. Devaraj).

Anyway, her count was 4 today (day 11 after the last IVIg), and she will take the Decadron tonight, and finish Friday morning.

I will check her counts on Wednesday, Friday and Monday. I am expecting her count to go up while this week, but if it is back down again by Monday, then I will conclude that the Decadron "does not" work. Now, will Dr. Devaraj agree with that? Who knows?

Hi Michelle,

So sorry to hear that Danica's count is that low again. Hopefully this round of Decadron will work! We have an appointment in Regina on Wed with our ped. Zach is now having some vision problems - he loses his sight for a minute or so on one eye, but then it comes back. The optometrist here thinks it may be a type of migraine, because everything else was OK. Needless to say, I am a little bit scared. Hopefully that's all it is. Anyway, I will be thinking of you guys and hoping for a good response.

Take care,
Shelly

OMG Shelly - that is so scary!!!! Does he lose his entire vision in that eye - like total blackout?? You see Dr. Holmes, right?

Let me know how things work out.

Michelle

Good luck with the Decadron! I hope Danica doesn't have as many side effects this time around!

Our hematologist had also talked to us about Promacta and she really didn't seem to support it as much for pediatric patients. She said it was a better drug for adults because it is harder to adjust the dose based on child's weight. (I think that's what she said.) If your child is almost at an adult weight and is stable at that weight, then it might not be a bad option. They also have to monitor their liver while on this drug.

I hope Danica's hematologist will agree with you that if it crashes after this round is over, then maybe it is not a good option for her, especially if it produces undesirable side effects.

Pauline - I am guessing that Caitlin never tried the Promacta? Being that she is so active, she is probably just a tiny little thing - and if Promacta is based on adult weights, then it is probably not an option for her.

I don't think that Dr. Devaraj will want to try it as it has not been studied very well in children. Our ped just read it out of a book, other than that, he knew nothing about it. That is another reason why I thought it odd that he would suggest that we talk to Dr. Devaraj about it. He should be discussing it with him, and getting back to us.

It is nice that I work in the medical field, and it has seriously worked to my benefit at times, but sometimes I think that they take me for granted in that they figure that I can do the work. UGH

Michelle,
So sorry to hear about all the communication issues with the doctors. I hope you get some answers. Maybe promacta will work for Danica, or Nplate? ITP stinks...

I did a little research on Promacta - it is used for bleeding disorders. It works by increasing platelet production. I don't think it will work for Danica because she is producing platelets, she just can't keep them. I would be like running the fawcet more, but the water still goes down the drain just as fast.

No, Caitlin hasn't tried Promacta. And you are right...it increases platelet production. It is a "TPO" drug, just like Nplate. They are administered differently...Promacta is a pill form, while Nplate is the injectable form. Caitlin also makes enough platelets, but at least she has more platelets circulating in her blood at a given time so that she is able to do her activities. Sometimes I wonder if the spleen can actually "overwork" itself because it is busy killing off so many platelets. I have heard that this is the reason for the extremely high counts right after splenectomy...because your bone marrow is still working harder to produce more platelets to compensate for the ones that are eaten up by the spleen. Eventually, the body recognizes that it doesn't need to make as many platelets so it levels off to a normal level.

It was weird when we did the screening...the coordinator asked if Caitlin had started her period and I said no. She said good because then we'd have to do a pregnancy test. Ugh! That really threw me off because she just turned 12 and I do NOT want to be thinking that way yet. The coordinator said you'd be surprised at how many young girls are actually sexually active! I'm not keeping my eyes closed, but at the same time...I feel like I watch my girls enough that hopefully, this won't happen anytime soon! My 13 year old looks like a 15 year old (beautiful girl too)so maybe I've got to have more than just "the talk" with them very very soon. (Caitlin is still more in the "cute" stage.) So NOT looking forward to doing this!

Hi Michelle

You and me both seem to be having mild communication difficulties with doctors at the moment - although for completely different reasons! They use promacta for kids at the hospital that Dougie goes to - as Pauline says I think it works on the basis that the body produces more, but they are only being eaten at the same rate, so there are a safe number still in circulation at any point in time.

I hope this round works better for Danica, and that the side effects aren't as horrible as the first time round. Can't decide whether it is better that she knows what she is going into or not? Good luck anyway

Ali

Michelle,
Both Promacta and Nplate work by producing MORE platelets. The reason it helps (when it does) is that it helps to overcome some of the rate of destruction and thus raising counts. Its not specifically indicated for people who don't produce platelts...its just that the body will make more platelets than normal, and hopefully be able to keep them.