Not sure if this is the best place for this particular question but it seems to fit, apologies if I’m in the wrong place. I haven’t been on MN for donkey’s years but it was a lifesaver when the girls were little.
DD2 age 9 has just been diagnosed with PNH, an auto immune disorder where her red blood cells destroy themselves. It’s also combined with aplastic anaemia. It’s not life limiting unless she doesn’t respond to treatment, but will need treatment infusions every two weeks for the rest of her life, and potentially if the anaemia doesn’t resolve, she may need a bone marrow transplant. The medical treatment leaves her vulnerable to infections, particularly meningitis. If her temp goes above 38 she will have to come back into hospital to be checked out. She’s just had two blood transfusions to get her haemoglobin back towards normal levels.
It’s not so much the health issue itself I’m looking for help with, I know we are in excellent hands, but how to deal with the psychological effects on her and DD1 age 11. This has all come about incredibly fast, DD2 has been looking pale for a while so last Friday I took her to the GP to get checked out, and here we are less than a week later starting on a lifelong treatment regime that will affect the whole family. How do we lessen the impact this will have mentally on both girls?
DD1 is a lovely big sister and has been missing DD2 all week since we came into the hospital on Monday. It’s a massive thing to have to take on board for her though, just as she’s getting towards all the changes of puberty. I’m not really coping with the fact that all of our lives have been changed overnight. DH has type 1 diabetes and was diagnosed in his early teens, so at least we have that example of someone living perfectly well with a chronic disease, but I really am worried that this will change DD2’s life dramatically. She has very low platelets, and so isn’t meant to do anything that could risk bleeding, but she’s naturally very active and loves throwing herself around the gardn doing gymnastics etc. If she can’t do that, it’s one of the activities she and DD1 love to share taken away from them.
Basically, does anyone have advice on how to make this kind of diagnosis not be the complete end to normal life?!