On Wed 19 th Jan we took Reagan to st Georges to see Dr Pelidis.
We talked about putting Reagan onto steroids in the next mth or so, we will go back in 3 wks, check her blood, probably transfuse her then start the steroids a coup,e of wks after that. This allows the HB to drop a little and allow the steroids some room to boost it back up but not too low that if the steroids don't work she'll be in need of a transfusion again.
So she will initially start on a high dose which is likely to give her mood swings (although it might not....we can hope) it will increase her appetite and she will likely gain a fair bit of weight in a short time period. The trial will be unto 8 wks long, after some time the dose will be reduced gradually until either she is on allow safe dose and her HB is at a good level or the steroids are deemed a failure in which case it's back to transfusions with a view to doing a transplant in the next yr or two.
Before starting the steroids she has to have all her immunisations and a flu jab. We've also decided to immunise against chicken pox because it can be rather serious for her to get them while on steroids.
We also spoke about putting a port of cath in, so she doesn't have to have a canula put in every time and while on the steroids she will need weekly blood tests. This will be discussed on more detail at the next appt.
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