My daughter is 2.5 years old, 2 years post transplant. She has never been a great sleeper, I think she spent too much time in hospitals from 5 weeks of age to 2 years old to develop any kind of good sleep pattern.
We thought this might improve with time, finally getting all her teeth in and fewer hospital stays........but it hasn't and we are all fairly exhausted.
She has no problems getting to sleep, has a good bedtime routine (reads books, has a story, a lullaby and drops off) but she just can't stay asleep. She wakes every 1-3 hours crying and very upset, now that she is older she says 'I've had not a very nice dream'. About once a week she will wake with night terrors too.
There seems to be a link with her Tac level, her sleeping is notably worse when her levels are even slightly higher than normal. They are currently at 6ish but when the Tac level was at 3 she was sleeping much better.
She does have a crazily vivid imagination, could this just be 'normal' sleep issues?? She does seem very sensitive to Tac, she also suffers a long list of food allergies thought to be caused by it.
I'm convinced the Tac is playing a big part. We've spoken to Leeds but their first option would be to lower Tac and introduce MMF but she can't have MMF due to it giving her neutropenia previously. So I thought I'd ask if anyone found similar problems?
from a very tired mummy zzzzzzzzzzz