He's been off medication for 15 days now. Up until yesterday we were on a stable roll. The numbers weren't going up but they weren't going down really either. Then yesterday not only did his platelets drop to 29,000 his infection fighting cells dropped below normal for the first time in months. Punched in the gut...that's exactly what it feels like when I get the call with numbers like that. Then I spend the next days looking over tons of websites on the iPad and digging out all his test results for something we've missed. A clue. Answer. Something. Anything.
The doctors at children's thankfully still want to continue med free and see what happens. They just make sure to repeat the risk that comes with this..bleeding or brain hemorrhage if he falls or gets hit. Unlikely but a risk especially the closer he gets to 20,000. We agree but each week I get more nervous especially with him being on the move. He has the most adorable army crawl I've ever seen.
He still isn't pulling up on things are getting up on his knees. Normally I would be worried about this since he's just shy of 10 months (Mahala was walking at this point BUT she looked like bad fruit with all the bruises from not being very steady on her feet!) Him staying lower to the ground and not pulling up on things and falling are fine by me!
Now on the other hand, put that boy in his walker and there is no stopping him. He RUNS. At night there is a constant scream from one of the girls every few minutes because he is bumping them in the knees or running over their toes. He proudly throws everything on the fridge he can reach on the floor and laughs. He just found the wine rack and yesterday I found him rolling around the kitchen island with a bottle of Chardonnay on his snack tray.
He has 8 teeth and a new found love of string cheese, yogurt and now pasta.
Most exciting right now though, he has grown one inch since the move to every other day meds til now. One inch! He's back on the charts at 9% He has finally outgrown his 6 month clothes at almost 10 months! That's so crazy to me considering he starting wearing them at 4 months and was huge for his age. That tells you the halt that medicine put on his growth.
So. That's where we are. Finding the positives in a negative situation.
Everything you read on his condition has a different time span on a acute/chronic case of ITP. Most kids counts return to normal with 6 weeks. Most kids numbered don't ever fall as LOW as his did/do. Anything after 6 months is considered chronic. I found one site that says 80% of kids recover in 6-12 months. NIH actually. I can't tell you how many times a week I read that one paragraph. Somehow it makes me feel better. 3 months ago I thought for sure at the 6 month mark we would NOT be dealing with this but we are. Now 12 is my goal. By 12 months he WILL be better.
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