What can we expect?

Ryan's counts are very low again. The last draw was 23,000. His bruising is getting worse and worse though.

We are going Thursday to the clinic at Johns Hopkins for his 3rd round of ivig. We've only ever been hospitalized when getting this. They orginially wanted him to go in tomorrow (Tuesday), but my insurance company said NO... it has to be Thursday. Lovely.

If this doesn't work, they are going to do steroids. So my question is... what can we expect? Any general rule of thumb as to how long they keep him on before seeing what happens when he is off of them? Months? Weeks? Days?

And side effects... what are we looking at here? Ryan is already an active boy. I mean... really really active. A monkey, pretty much :lol: I heard it can make people feel like they are on speed? Weight gain? Hair loss? I've heard a lot of different things.

Brandi -

I'm sorry that Ryan's counts are low - hopefully he will soon find a way to be at higher numbers. We didn't have a positive experience with Prednisone but many people get great counts with it and it's quick and easy. Just thought I'd share Brady's info:

Brady was first diagnosed at age 5, count of 2k, 10 years ago. At that time steroids were a typical first treatment. That, combined with the fact that we had a trip planned for the following week, made steroids the hematologist's choice for Brady. I'm pretty sure he was on 50mg/day. His count rose to about 60k within the first week but never went any higher than that and was dropping, even on that dose after the first few weeks. He had some side effects and since it wasn't wildly successful, the hematologist started tapering him within the first month. THe taper was slow, but Brady's total time on Prednisone wasn't more than 10-12 weeks, including taper time.

For Brady, the main side effect was that he was absolutely ravenous. At first it was kind've funny but then it actually scared me. The minute he woke up he would ask about what we had to eat, what was for lunch, dinner, etc.and he would be angry if we didn't have something he wanted. Our doctor really hadn't told me much about it and I've learned from this site that we should have really made an effort to cut down on salt, offer more vegetables, etc. I guess we felt badly for him and we indulged him too much. His face really puffed up within two weeks and he gained a bunch of weight. He also had some difficulty sleeping and the prednisone bothered his stomach (even with taking something like Prevacid). For Brady, other treatments would be our choice.

Like we always read on here, everyone is different and Ryan may respond well to steroids so you just have to weigh everything. Every treatment decision is difficult but hang in there and I hope we read about his high counts soon!

Hi

My son had steroids for a two week period when he was about 11 - 1mg per kg I think, so 35mg per day????

Anyway, he didn't have any noticeable side effects - no hunger, no hyper-ness, no stomach problems.............unfortunately, not much of an effect on his platelet count either though! I kept good snacks round the house just in case, but he really didn't seem to be any more hungry than normal.

Good luck if you end up going down that route.

Ali

Thank you for your replies. Tomorrow is the big day, last ivig treatment before seeing what (if anything) we need to do next. Here goes... :blink:

Just wanted to wish you the best luck!!!