Reagan had what we hope to be her last transfusion on 16th December 2011. She has had her flu, and a repeat of her MMR immunisations (her bloods showed she didn't have antibodies against measles, despite have the jab!)
Peyton also has had the chicken pox vaccine, even though Reagan has too it could still be dangerous for her to be around anyone who has it just incase. This is only the case while she is on the trial, a high dose.
She is on 2mg/kg which amounts to 22mg per day for 4 wks, after for wks the amount will be weaned down over another 4 wk period until she is down to no higher than 2mg per day. On the highest dose, around 80% respond, so we should see it working at first at least. By the end of the trial around half of those who respond will no longer be responding and it is deemed a fail! So she has just under a 50/50 chance of it working.
If she responds then it will mean no more transfusions, although at tough times such as bad illness, puberty and pregnancy she will most likely need to have a transfusion.
Today is day 4 of the trial and so far so good. The main side effects at this dose are mood swings and insomnia. Reagan still doesn't sleep through the night, although she only wakes for milk and feeds herself but still......however, we have only had one bad night so far, so fingers crossed it won't get any worse! As for the mood swings I thing yes maybe she is suffering from this a little but nothing to major.
She's having wkly blood tests for the first 4wks, the day before she started her HB was 12.3 so we would hope to see that rise a little by next wk.
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