ITP fatigue

[grasshopper2000]

Can anyone suggest anything to help fatigue? My 9 year old daughter manages the first two weeks of a half term at school and then really struggles. She is dyslexic so really struggles anyway but with the added fatigue she is often tearful thoughout English and by the time she gets home we have a proper meltdown. I was hoping that a week off school now would help, but she is still exhausted and there have been loads of tears. She gets 11.5 hours sleep each night, but always looks so tired and pale. I'm worried that she is going to go back after Easter just as exhausted as before the hols.

[Jaybee736]

Fatigue is a challenging symptom to manage - my daughter has struggled with it since she was diagnosed age 4 and she is now 11. It definitely gets much worse when her platelets are very low (below 10) and she too has missed a lot of school but more frequently related to other issues of ITP. Are your daughter's levels generally very low? 

[grasshopper2000 in reply to Jaybee736]

Thank you for your reply. My daughter has had ITP since she was 2. Her count has never been above 30. It's normally around 15ish but sometimes as low as 5. 

[Jaybee736 in reply to grasshopper2000]

Sounds very similar. I do think there is a strong connection between the symptom of fatigue and low mood which definitely happens with my daughter. We have just had a few weeks of 0-2 levels and it's a big issue. Also sleep/wake cycles badly affected. We have all sorts of strategies for dealing with this - some helps some less so, it's very much trial and error. We are currently working with her school to put in place extra support as she has fallen way behind which makes her anxious - she is now having Romiplostim for the first time so will be interesting to see once (if!) she gets to her 'normal' coping level (around 50) how much the other aspects improve. Please feel free to pm if it would help

[JJMcLaren in reply to Jaybee736]

The mood and fatigue is definitely connected to lower platelets. My daughter was 2 when she was diagnosed and is now almost 9.

[grasshopper2000]

What sort of sleep/wake cycle problems do you have? My daughter can become so tired she can't get to sleep. What strategies have you found help? I'm not sure I have found any yet.

[JJMcLaren]

My daughter has the same problem. What happens with child fatigue is that it mimics attention deficit hyperactivity disorder. With the use of my daughter's developmental specialist and hematologist we started treating with a low dose of adderall extended release and now Addi is doing much better with less melt downs. Her grades have also improved due to not being so fatigued.