Tiredness

Hello,

I haven't been on here for a while,but I was wondering if anyone could help answer a question.

My daughter's haematologist has said that a low platelet count shouldn't make her tired, but I know lots of people on here have said that their children can be very tired when there count is low, but I'm starting to worry that it is something else with my daughter.

She is 5 and was diagnosed nearly two years ago, although has obviously had a low count since from a very young age. It was nearly 4 years ago that I remember her suddenly being very tired all the time. This was just as my eldest started school, so I just assumed it was due to the new routine. However, since then she has still always been extremely tired. Just before she started school some days she would have a 3 hour sleep in the day as well as 12 hours at night and still be tired. At the moment her count seems to fluctuate, but seems to either be between 15 and 34, which is really high for her. Even when her count is high at 34 she is still so tired. She has between 11 and 12 hours sleep every night, but she yawns all day at school is very irritable all the time at home and this last week of term she was even laying on the school playground on her coat to try to fall asleep each day when I was talking to another parent after picking her up. Her concentration is also terrible which I am assuming is because she is so tired. I thought that maybe when her count is slightly higher (at 34) she would not feel so tired but it has made no difference.

Do you think this sounds normal for ITP?

Thirty-four is not a very high count when it comes to fatigue, or so I find anyway. I will know when I'm below 100 because the exhaustion starts to set in. I suffer a lot with fatigue, so much so that I took a part-time job because I can't cope working full-time.

We've always thought that Dougie got exhausted in a way that our other kids didn't. Its hard to put your finger on sometimes, not so hard othertimes. Sometimes its just irratability, or difficulty in thinking straight - some days he says he just can't cope with maths lessons! Other times, he goes back to bed halfway through the day. Its difficult to correlate exactly with his count; like your daughter, his count is nearly always low.

It was most noticeable when he had a temporary high from IVIg and even he recognised that there is some connection. He didn't so much notice that he was better when his count was higher, but as it started to drop (probably below about 100 as Ann suggested), he commented that it must be going down because he was tired again. And as he felt tired again, he recognised that he hadn't been for a couple of weeks. There is DEFINITELY some kind of connection.

P.S. Dougies consultant says that there is a recognised connection between ITP and fatigue

Thank you for your replies. That puts my mind at rest. I just can't believe that some haematologists say there is no link when so many people with ITP say there is.

Grasshopper, thanks for your question. My soon to be 5 year old son was diagnosed in September. His hematologist also told me there is no correlation between fatigue and a low platelet count. However, I definitely notice a change in behavior when my son's counts are low. He's a lot less cooperative and transitions are very hard. I see this symptom prior to seeing the physical symptoms. Bizzare that the doctors don't want to say there's a link.

my daughter also suffered from tiredness...Her Dr also told me it wasn't the ITP. She also got extreme leg pain, took her to the emergency room. Hemo never even came down. go with your gut, I truly believe the medical professionals do not know enough about ITP to over rule a Momma's feeling.

butterflygirl wrote: She also got extreme leg pain.

Ryan has extreme leg pain often. He's had it his whole life (nearly 5 yrs ) and his doctors always brush it off.

My son has experienced several episodes of sudden onset of fatigue and even vertigo. Counts are generally 30s to 40s. Hematologist said no link with ITP. Whatever...I know better because I live with it.

Hi, My 15-yr-old daughter has ITP (diagnosed 4 yrs. ago). She often notices that she gets very tired before we notice that her count is down. Her doctors/clinic have agreed that ITP is connected to her fatigue. So maybe your doc is up-to-date on the current info. Either way, go with your gut feeling - parents are almost always more in tune with how their children are doing than a doc that only sees them every few weeks.

I also asked my daughter's hematologist about this because she seems tired a lot, even when her counts are pretty good. The doctor said there was no real link between ITP and her fatigue. It's hard for me to quantify or put a finger on, because I have two older boys who are much more physically active than my daughter, so I chalked it up to that for awhile. The only real physical activity she has is dance class once a week (it's two hours long), and that wipes her out.