My 4 year old daughter has a rare genetic blood disorder, although we don't know which one yet, but has been prescribed prednisone. It has helped her blood counts, however, her mood swings have become more frequent, intense and violent. Anyone else going through this with their child? Any advice?
At this time, prednisone is the only real option until we know for certain what her diagnosis is. It appears as if it's Diamond Blackfan Anemia, but without the genetic testing her doctor wants to do, but the insurance company wouldn't approve, we just don't know. We will be meeting with her doctor this week and hopefully a psychiatrist, but I just wondered if anyone else had a child on prednisone long term and had any advice. Right now we are just trying to keep her and us safe when she does have meltdowns. It's just very hard to watch her go through them.
Yes, it is quite common for kids and adults to be extremely irritable on prednisone - not really sure what to suggest, but that's pretty much the norm for that med 😕
The 'rare genetic blood disorder' puts this out of my experience and I wouldn't begin to know what to do.
Please talk with her doctor(s) about it - maybe they can recommend trying something else or at least give you techniques on how to cope with her mood swings.
All things being equal - some preschoolers are pretty moody even if they aren't on any meds.
It's hard to gauge what is normal.
I hope things get better for you and your daughter.
My son did about a four to six month time period on them...in first grade...his teacher was a saint!! I thought I would lose my mind with the anger and tantrums.
You have to remember she is just as frustrated as you...not knowing why she is raging, well its a side effect of the meds. When she calms down hug and love on her.
Hang in there and I hope that she can wean off them very soon.
(For me personally I can't sleep while on them...I feel great and my house gets very very clean because I don't sleep I do many many projects.)
It sounds like you need to appeal the heck out of the insurance rejection. Ask the hospital if they have an advocate who can help you.
what does the dr say about this side effect? do they have an alternative med to try?
My friend has COPD and needs a double lung transplant and is on it a lot and it really messes with her but she has very few options as well.
The few times I've had to take it I couldn't sleep...literally. Like for the 7 days I was on it, it felt like I got 4 hours of sleep that week...not joking. It's awful.
I don't have any advice for you but hope you figure it out soon! Ask how much the non-insurance rate would be for the tests. I paid cash for my daughters MRI, it was $277 but if we put it through the insurance it would have been over $400 and we would have to wait for "approval". I paid cash and got in that same day. Unbelievable but true. Good luck!
