TOPIC:

Just wondering if anyone elses kids experience itchy skin when there platelets are low....this seems to be a pattern with Devyn when his counts are really low, he starts to get really itchy at night. When his counts are higher (above 50,000 usually) he doesn't scratch. Just curious to why this might happen??

Thanks,
Deanna

Haven't noticed this, but now you have said it, I am going to ask Dougie! The thing that I have noticed most often about him recently is how physically tired he gets when his count is low - yesterday he asked if he could go upstairs to get his pyjamas on and then stay there rather than coming back down to watch the TV as usual, because he was too tired to walk up the stairs twice!!!!

This morning, his skin is an exact visual map of where he itched yesterday - everywhere he has scratched is covered in purple lines with petechiae. Its an interesting look but not a good one! I phoned the Children's Centre at the hospital this morning and am taking him in for a blood test tomorrow. I am really hoping the symptoms are a fluke and he has a count in double digits at least. Just wish it would get a move on and bounce back up again........

I hope that Devyn has an ok count at the moment and that the itching doesn't signify anything too low. Everytime I think I've got a hard job with Dougie, I remind myself that there are mums worse off than me having to explain activity restrictions to toddlers!!!! I don't envy you at all.

Ali

Good luck tomorrow Ali.....lets hope for double digits!!!


Deanna

I haven't been diagnosed with ITP long enough to know all the symptoms with low counts.. But when I think of it, the last couple of times my counts were low I had trouble sleeping cus my skin was itching.. I only get it at night..
I have had it for the last week as well.. Have a doctors appointment tomorrow.. If my counts are low, maybe the itchy feeling will have something to do with it.. I'll keep you posted..

Xx

I do tend to get itchy a lot, but i have never really thought to keep a note on if it is when i have low platelets. Without treatment my platelets are never higer then about 24 and i have only started treatment again since december. I might have to start keeping notes on when i am itchy and see if it is when my platelets are low.

Tim gets itchy when he comes out of a remission. He's been low so long that he doesn't really have new symtoms anymore. But before when he had fairly long remissions/partial remission, he had itching, asthma, fatigue, he gets pale and dark circles under his eyes.

Ali, Tim often gets the scratches and petechiae even when his counts are normal. If he had any change. It sure does sound like Dougie's low, though, with the fatigue. Hope he gets a decent count tomorrow.

Donna

He is VERY tired today too. We got home about 6pm and he said could he go to bed! Then he sat down at the bottom of the stairs and told me that he was too tired to go up them to actually go to bed. And he stopped eating his tea after half of it becuase he said he was too tired to finish. After a rest he did get out to Scouts this evening, but he is just really having to make an effort. Its very similar to how he was when he got a very low count in late January.

I've got to work tomorrow, so my friend is going to take him to the hospital for his blood test. I hope it is ok, but realistically, I think it might not be. Even I feel sorry for him at the moment, and I am not the most sympathetic mum on the planet! So I am thinking it will be good to have a record of his count and how he was feeling for when we go to see the haemotologist again in April. All of our family have learnt to live with the low platelets, but I think that this overwhelming fatigue is actually worse. If he had it all of the time, even I would be pushing for some kind of treatment.

Hope Tim is still getting on with that school work - tell him to get on with it from me. LOL - I spend so much time trying to get my 16 year old to do some, that it just seems natural to nag ALL 16 year olds now - sorry!

Ali

Ali,
That's terrible that he feels so badly. It does seem like some treatment might be in order for him if he is still low. I know the kids can "live with" low platelets, but if it is affecting their quality of life like that, it might be time to do something about it. I know for Tim, it has really made a huge difference in his whole attitude and quality of life to finally have a break. He's much more positive than he was, and he does seem to be feeling much better.

I hope you come to a good decision for Dougie. Poor guy needs a break!

My son hAS NOT BEEN DIAGNOSED YET, BUT HIS PLATELET COUNT HAS BEEN CONSISTENTLY DECLINING HE IS ALWAYS VERY ITCHY AT NIGHT AND ALSO HAS A BURNING SENSATION IN HIS SKIN HAS YOUR CHILD HAD THIS PROBLEM!

i'M JUST TRYING TO PUT THE PIECES OF THIS VERY FRUSTRATING PUZZLE TOGETHER.

I haven't had an itching problem until earlier this week. And my count is up to 123. Well it was on Monday. I'll get it checked tomorrow again. It drives me crazy! I thought it was just dry skin, but I'll pay more attention to it now!

Greeneyes0011,

Devyn seems to be itchy only at night but i have never noticed the burning sensation and nor does he complain about that....i think that my observations are right because we had his bloodtest done this mon and his count had dropped to 32,000, we go to the hemo this upcomeing wed so i'm going to ask about the itchy skin. One thing i have definitly learned from this sight is that every childs symptoms definitly do vary.

Deanna

Hi Deanna,

I've been wondering how Devyn was. Sorry to hear that his count wasn't great.

How come we get the kids with nuisance symptoms of a low count - itching and tiredness - not manic cleaning????? Its not fair! Mind you, a manically cleaning 2 and a 1/2 year old might be a bit difficult to deal with.........

Hope that it goes ok with the haematologist

Ali

Thanks Ali,

I think your right a 2 year old cleaning might be more of a disaster then anything...although he likes to help me vacume.

I really didn't think that he was that low but after reading some of the posts on here about how kids bodies can adapt to the low platelets it all makes sense. That makes me a bit nervous because i use to be able to tell for sure when he was really low....OH ITP!!!

How is Dougie doing? I beleive you siad that he has an appt coming up soon? If so I hope the results are good numbers!!!

Deanna

Hi Deanna

When Dougie goes for a count, I continually hope for the best, so I used to get really disappointed when it was low, but like you, I think I now just hope for OK. OK is OK, good enough. All the same, I hope that when Devyn goes for his next test, the numbers are better for you both. It must be so difficult given his age and how accident prone I remember my kids being at that age - permanent scraped knees!

Dougie has just come back from his grandma's where he'd gone for a visit all week. He's been telling me all week on the phone that he is fine, no symptoms at all. So I've not been worrying about him which has been great. However, he is really about the same as he was before he went, so I am totally expecting a count on Monday that begins with a 2 or a 3 and only consists of 2 digits not 3!!!! His count at the moment seems to have lost the rollercoaster effect he had a few months ago and is moderately low all the time. I suppose that at least it is consistent. I'll let you know anyway.

Your question about where to get bloods done. Dougie has only once had it done at the GPs - it took about a week to get the result back. Most of the time I take him into the children's centre at the local hospital about 20 minutes drive away. They will just give me an appointment whenever I ask, and I phone up later in the day to get the result. When he goes to Manchester Children's Hospital, they do a thumb prick when we get there and then we wait for about 1/2 hour to see the doctor and they get the results in that time which is brilliant.

Hoping for a good week next week anyway, Ali

I itch every night. I thought it was just dry skin, or reaction to Tramadol, or withdrawals, but now I suspect ITP. My platelets are usually 110,000, though. I also have anemia, low rbc, and low thyroid.