Question about fatigue

For those of you who feel fatigued with ITP or who have children who do, please can I ask you a couple of questions!

Dougie has been complaining of feeling exhausted for the last couple of weeks. He also says he feels nauseous, and to be fair, he's not eating that much at the moment, and he keeps complaining he has a headache. BUT..............he doesn't seem as bad at weekends, so I can't decide whether or not its just something going on at school (he says not), whether its to do with ITP, or whether I should be taking him to the GP.

If you feel fatigued,

a) is it constant, or does it come and go? (Dougie seems to get these phases of feeling exhausted but its not all the time by any means, he can go for months feeling ok)

b) is there a link to whether your count is high or low?

c) do you get other symptoms like nausea and headaches with it?

Maybe I should just be taking him for a checkup? I am trying to stay clear of doctors in between consultant's appointments, but I might be going too far.

Thanks, Ali

My opinion...if he doesn't seem as bad on the weekends & it's only on school days, something is probably going on at school. Kids at this age aren't always wanting to share things with their parents. Caitlin went through a really bad period last year where something was going on with one of her teachers and she "held it in" until one day, she texted me from the bathroom saying she was crying so hard, she couldn't go back in. I knew something had been bothering her, but she always said everything was "fine". Anyways, she had reached her breaking point that day and I took her home and she told me everything. I turned right back around and went to the school and talked to the principal and the counselor. I will not share what went on, but it was not good. During that period, she was also VERY fatigued...but it was because of her emotional instability at the time, not her ITP. However, since ITP is well-known for causing fatigue, I wouldn't wait to take him to get his counts done, especially if he also has symptoms. Caitlin had the nausea, almost on a daily basis, but she did not have the headaches. (I thought she was getting ready to start her period so dismissed it as cramps.) Her meds that she is on really seems to keep the headaches away.

Both very common with my daughter. (Sometimes) it has to do with her counts. Emma is 6 so I don't know if she knows what nauseated is yet but she says her stomach hurts and lays down. Most of the time a headache comes with it it seems. I havn't ever seen the headache with low counts. Mostly when she is trying to go up. She gets exhausted when she gets super low but then she has been sick at the same time most of the times. But, yes, I have let the hematologist know countless times and her response is " I wonder if something else is going on" ??????? And never tries to figure it out. Emma can go a couple months with no headache or tiredness and then we get a little run of it. Headaches can make your stomach feel really bad. This is going to sound absolutely nuts but Nplate is like the protein your liver makes to make platelets. If you look at the side effects they are headache, tiredness, stomach ache, etc.... I dont know if that may be why some itp kiddos get these symptoms or not but it does seem that when Emma feels this way is when she is getting a bit higher in counts. Maybe her liver is in overdrive making this protein. I dunno.. Just a thought. I would still take him to the doctor just to make sure it's not a vitamin problem or something. Sorry you and your child are dealing with this also. Some days I just want to scream!!!

When Luke's counts were below ten (especially at zero) he could barely function he was so tired. He definitely had headaches with lower counts. His skin was very sallow looking. Almost yellowish/grey when was below 35K.

Thank you for your replies.

Dougie's count has been permanently under 20K since the beginning of the year - low but consistently so, which is why I can't understand these phases of exhaustion, you'd think it would be all the time if it were linked.

And I think that Dougie, myself, and his dad have all forgotten what the pre-ITP Dougie was like. Dougie says he's always "tired in his head" but sometimes he is physically exhausted too, which has been the case for the last couple of weeks. Maybe if he had higher counts he wouldn't be like that, I just don't know...... I honestly can't really remember what he was like before all this ITP rubbish came along, its been a long time.

Pauline, he keeps saying it isn't school, but I am still a bit suspicious - although maybe he is better at the weekends because he generally does less and he gets up later and slower. Again, I just don't know!

Thanks anyway

There's also a psychological element to fatigue in that when I've got something nice to do I can go on much longer than otherwise. It then tends to be when I stop that it hits me. So it's not really surprising that school is more exhausting than the weekend when he's doing more fun things.

I like the description "tired in the head" which describes the difference between fatigue and simple tiredness exactly. It sounds like he knows what he's talking about.

Ann,

I find he is very good at describing intangible symptoms - right at the beginning of ITP he once had ridiculously low blood pressure and he described the resulting dizziness as feeling like he was standing still but the world was swaying around him.

Mind you, thats how I feel when I've drunk too much as well!!

Alison

hi,

My daughter is 3 and has had ITP for over a year. Her platlets are permantley low they never seem to rise above 30. But i find when they go very low (her lowest count was 2) she cannot survive the day without a nap. she says how tired she is and will ASK to go to bed. She would also comment on her head being sore at times and this always seems to coincide with her bruises getting worse. she currently has counts every week. I definatley see a difference in her when her count is higher.

Rebecca

Hi Alison
First of all you are in England aren't you? I am clarifying this because it makes life easier for you from what I understand of the American system.

By all means make an appointment for Dougie and the GP can check him over. May be the Heamatology consultant be more helpful though from what I remember of what you posted before, perhaps not? I hope you have a better relationship with GP

I am not a parent with a child with ITP but have been diagnosed with ITP since 1994 and this year has been my hardest year and am greatful for everything that has been posted on here because I could knew what has happening was normal.

This year, I would get a different kind of tiredness before ITP drop. Fatigued is the word. I was okay if I kept busy but if I stop then it was kind of draining like one is in the heat. You want to and you can do it but one has to push oneself hard to do it and for what I was doing, I coped quite well but I did have to make myself.

I started doing a teaching assistants training course and was so pleased that we started in May because I thought would get the first half term in infection free and could prove myself etc. Huh. Little did I realise that how long a day is in the first place. Then my platelets kept dropping and yes getting minor migrains with it though never connected them to ITP as didn't have them before septicemia. I fought through one school day with migrane and happy enough because if I hadn't have gone my attendence by the end of last term was looking poor through ITP.

Without knowing your son and knowing what children can be like, I think he is probably genuine. Write down all the times he actually comments so you can see if there really is a pattern. Ask his teacher to see what he is like in class those days. Some teachers can recognise when a child is paler etc of which we don't see ourselves.

But because you are in England, it would help ease your mind if you took Dougie to the GP and ask for help and advice of how to handle the tiredness.

All I know is that it sounds normal for ITP but for your own peace of mind take him along though ask at school to how he seems there

Rhiannon

Really good idea about asking school how Dougie is there, I am going to contact them tomorrow. Its difficult now he's at high school and has numerous teachers, but worth a try I think.

Also a very good idea about keeping a note of how things are to try and see a pattern. Until last year, I used to keep a diary where I noted down symptoms, counts etc. I gave up because it was making me a bit obsessive - maybe I need to go back to it.

Oddly enough, since mid last week, Doug has been symptom free in terms of bruising and spots, and he's also got rid of the fatigue - I asked him today and he said that he isn't at all tired. Who knows! They might both be connected with something else entirely. He is seeing the haematologist later this week, so along with all the other questions I have for the guy, I think I will add the fatigue to the list.

Thanks for all the replies

Alison

I don't know if it's different for kids but I find myself very tired when my platelet counts are low. My theory is that the platelet destruction sucks up the energy from the body. Also dull headaches + tiredness are usually a signal for low counts

No problem - as 'er' the americans say. We are here to try and help each other and heamatologists don't always know the answer.

Without knowing him and only knowing what you have written, My instinct (which is alarming in touch)I do reckon Dougie is being quite genuine when he says he is tired etc. It could well be the school week is quite tiring compared to the weekend for him and fatigue is no joke no matter how mild one experiences it.

I only know how tiring the school day is because in May I started training as a teaching assistant and yesterday was my very first full day I got through without tiredness etc. (Quite literally and I only do mondays;) ). I had a poor first term due to ITP and yes he could be tired/fatigued before his platelets drop - that is my pattern from what I observe about this year.

I hope you work it out for Dougie because he will be much better when not experiencing low platelets.