This is the story of my son Max. On the 2nd of June, 2011 Max had a stroke and was admitted to the ICU at the Royal Childrens Hospital. On that day he was also diagnosed with Idiopathic Thrombocytopenic Purpura (ITP). At the time he was only 10 weeks old.
Sunday, 26 June 2011
A word about platelets
This is what happens when a baby on steroids needs to fast
I've spent the last few days deliberating about what to write to bring this story up to real time. We've been at the hospital for nearly 4 weeks now. Since Max got out of ICU he has made me so proud every single day. He is focusing with his eyes again, his neck is getting stronger, he's moving all four limbs and he is looking straight ahead a lot more then he was (he still really struggles looking right though). Max had his first bottle the day after arriving on the ward. At first he didn't remember how to drink and he cried in frustration. The second bottle he wolfed down in record time. By and large the most annoying problem his had over the last few weeks is his platelets. Max's blood has perplexed all the haematologists as he has not responded to all the usual treatments for ITP. The normal range for platelets is 150-400. When Max arrived here, he had 6 and they haven't improved. He's had platelet transfusions a couple of times a day and the odd blood transfusion here n there. Funny how before this all happened I was nervous about giving him panadol but now he has transfusions for breakfast, lunch and dinner. The usual treatment for ITP is steroids 1-2mg per kilo per day. For awhile, Max was on 30mg per kilo! It worked a bit but made his blood pressure high and his appetite HUGE. One day he was going for an MRI and he cracked it in the waiting room because he was due to eat- the whole scan had to be postponed until after he had his bottle. Every time his platelets drop below 10 he is at risk of further bleeding and that isn't something I could go through again. Nearly one week ago we started treatment that has been used in ITp but only a handful of times in babies his age. It's scary stuff and I worry that he'll grow a tail. Today his platelets were 125 and it's the first time in nearly 4 weeks that he hasn't had a transfusion. I don't want to be negative but I'm scared of getting my hopes up.