Friday 3 February 2012

4 weeks in

So today Reagan has her 30th day on steroids. Yesterday we went to see Josu for a review and to make a plan about the weaning process.

As I said she has had weekly blood tests to monitor her progress. FYI reagans bone marrow doesn't make enough red blood cells, when blood cells start out they are called precursors and the name for the amount of precursors is called the reticulocytes (retic). So usually hers is below normal, normal being between 25-85. HB should be between 12.14. Here's how her blood test have gone over the last month
Start. Wk1. Wk2. Wk3. Wk4.

HB 12.3. 11.3. 10.5. 11.7. 11.6
Retic 17. 94. 86. 390. 167

So it looks good so far as we would hope. Now the weaning process begins. Her current dose is 22.5mg per day and now we have to spend 1 wk giving 19mg every other day, then the following week it's still 22.5mg one day and alternate days 16mg. This continues to go down by 3mg per day until we see him in 4 wks time. Again she will have wkly blood tests to monitor her. So this is the real test!!!!!

So I bought a wkly pill box organiser to help me!!! He also prescribed her some sporanox, the steroids have given her oral thrush. It has a lovely list of nasty possible side effects!! Most of which I have no clue as to how on earth we'd know if she was suffering from them. So an even closer eye on her now.

And then this morning she woke up with a cough, cold and temp of 39.1!! So we took her to frimley hospital and she has pneumonia again!!, so more meds. 2 sets of antibiotics.

One set made her gag till she was sick, so I didn't give her the other set yet, then when I gave her her sopranos! She spat it all back out...so it's going well so far.

Sunday 8 January 2012

Steroid trial

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.