Dougie

Just thought I would share this because I am not sure what to do about it. Also it made me laugh, although it probably shouldn't have done!

After nearly two years of ITP, in which he has consistently held that the doctors, myself and his dad are all worrying about nothing, Dougie came downstairs at bedtime today to ask me if I could phone the hospital tomorrow. Because, in his words, his bruises are "freaking him out". I guess there's a first for everything!

He has a lot (10+) of big fist sized bruises and all of them are raised and hard in the middle which is what is bothering him I think. He was getting a lot of smaller bruises at the end of last week too, but not so many today. I think its just because his count is so low again because I think I remember him having this type of bruise before when his count was 5 or so - starts off bright blue and gradually spreads and goes black over a couple of days. He is also covered in marks where he has bled under his skin, and an enormous patch of petechiae mixed with bruise on his thigh where he got hit with a football in the match this morning - thats just weird because you can see the pattern of the stitching on the ball!

I'm tempted to see if he's forgotten about this request tomorrow and just wait until his next appointment in May. Mostly because I don't want to have him get treatment but also because I could really do without another trip to the hospital. But, on the other hand, its his body, and we keep telling him that he's got to be responsible about the whole ITP thing. I guess I will sleep on it.

Ali

Tim has, at time, done the same type of thing, when I would not be concerned at all. He'll tell me he's low and needs to see the doctor, and he's usually right about it.

Oh, ok then, I'll phone and see what my favorite nurse thinks - she's always very non-alarmist about things. Thanks.

Before we had stable platelets we also let Luke be our guide. It's amazing how well these guys know their bodies.

I hope to hear that Dougie's count isn't too low! That's great that he is aware of his symptoms and doesn't ignore them entirely! Caitlin used to ignore and try to hide her symptoms so I wouldn't notice. She got better last year about telling us if she had more bruising than usual.

Hi Pauline

That is what is so strange. Dougie never tells me about bruises. Like Caitlin, he mostly hides them - I am always suspicious when he starts wearing long sleeves!

I spoke to his paediatrician today and he agreed to not doing another blood test unless Dougie starts to have bleeding; he is getting a bit when he cleans his teeth, but he says that is all. I think his count is definitely under 10 because of the type and number of bruises he is covered with.

Annoyingly (for Dougie anyway) the paediatrician has also said no contact sport again until the symptoms disappear. Its just as well that Dougie is doing tennis at school for the next 6 weeks! I am hoping that all the bruising is gone by the weekend though, or we are going to have another big upset about not playing football. I imagine you must get a similar reaction when you have to tell Caitlin no competition - not fun! I was reading in your other post about having to threaten Caitlin with no sport to get her to have her injections - it rang so true with me because I go through something similar getting Dougie to wear his bike helmet (no helmet, no bike!). It must be just their age!

Ali- I do think it's their age, unfortunately! Caitlin is now a teenager! (Not looking forward to it bec shes my baby and I dont want them to grow up!). Talk about trying to threaten Cait...maybe she learned a lesson earlier tonight. At the gym, she was on the trampoline and she fell off after doing a double-full and landed on the ground mat, directly on her neck! She came out half-laughing, half-crying because she was shaken up by it. When I gave her the lecture about how she could be paralyzed by something like that, she really started crying and wouldnt get back on the trampoline. (Good thing!). Then immediatly reminded me tonight after we got home to give her the shot so this really scared her. I just hope she's able to move ok in the morning but I suspect she'll have a stiff neck. No petechaie or bruising (just redness) on her neck so I know her count is good, whew! THIS is why my little daredevil does treatment!

I sometimes tend to worry more then my mum about getting more petechia and brusies and ask her if we should be ringing our contacts in the hematology day ward or just riding it out. She usually just tells me if i am that worried, i can give them a call, otherwise she would just leave it be till we have the next blood test or appointment, so i wouldn't be too concerned if he is getting more worried. It just probally means he is starting to have a better understanding of ITP and what it means and what it can do if you are in an accident of any kind.

Oh dear!

I took Dougie to get a count today, mainly because his bruising has been so bad over the last couple of weeks. We went at 4pm and the nurse said that I should phone tomorrow lunchtime for the results, and that they wouldn't phone me unless they were "severely abnormal". Haha, I thought. We'll get a call tonight then. Well, its 10.45pm, and we just got that phone call - his count is 6.

That puts our plans for Easter holiday activities into significant disarray..........

The other bad thing is that Dougie actually looks better today than he did all of last week, so I am thinking that he might have got down to 1 or 2 then.

I am bored of ITP, someone make it go away please?

Ali,

I'm really sorry Dougie's count is so low. I know that you just get sick of talking about it, dealing with it, worrying about it, but hang in there! As you've mentionied, Dougie seems to bounce back on his own, so hopefully this will be a bottom and he'll begin to rise.

I know that you don't treat, but I'm thinking you maybe mentioned that he took prednisone for a short while at the beginning of diagnosis - is that right? If that worked quickly, would you consider doing it again to boost counts for your Easter holidays? We hated prednisone and it didn't work for Brady, but I can't remember what you've said about Dougie.

I'll keep my fingers crossed for Dougie that his count rises soon and on its own!

Hi Beth

I don't know how you've managed for so long. You must have the patience of a saint! I think I cope really well with Dougie's count anywhere above 20, but prolonged periods under that start me worrying - and thats not a good combination with the fact that anything under that number makes Dougie a) tired, and b) grumpy due to lack of exercise!

I did actually phone the doctor this morning and suggest another course of steroid, but I am not holding out a lot of hope. The consultant that I think might ok it is on holiday, and the other bloke isn't keen on treating at all. Dougie's had prednisolone twice - the first time got him up to a high of about 50, but the second only got him to about 30ish. It wasn't a great experience but not horrible either.

Ali

Hi, Ali,

My boys would beg to differ with your comment about patience - ha! I know there are times when I just can't bear to think about ITP any more and times when I feel worn down by it all but then the next day dawns, something good happens and we carry on. I need those times when I can be in denial and take a break from thinking about ITP, but you can't do that with counts under 10 or 20k. When Brady's counts get low like that I worry also (and Brady gets tired and grumpy too!)

I hope you're able to work something out with the consultant. Keep us posted.

What a great week this week has been.......NOT!

Monday - phone call from school to say that Dougie had broken his front teeth after being hit in the face by a door. Trip to dentist, trip to hospital for platelet count - 6K. Really good bruises on face.

Tuesday - another trip to dentist to mend broken teeth. Dougie had a bad nosebleed at bed time.

Wednesday - phone call from school to say that my youngest son had fallen over and hurt his face - he's a complete wimp when it comes to seeing blood, and had been sick and then fainted, and could I come and get him :ohmy:

Thursday - Dougie had a bad nosebleed when he got up. Stopped it, sent him to school, phoned doctor, told to come in to hospital. Dougie had another nosebleed in the car on the way to the hospital. Just spent 6 hours getting reacquainted with the joys of the children's ward - there aren't many positive things to say about it! First blood sample clotted, second took 2 hours to process - 10K. They are not going to treat him - in fact, I am now wondering what it would take in the way of symptoms to make them do that.

Dougie had NEVER had heavy nosebleeds before - just a little bit when he wiped his nose or something. I am a bit perturbed by it.

I've just had a chat to my husband about easter. We've decided Dougie can do his adventure activities next week - it seems unreasonable and unfair to say that he can't. I've just got to talk to the people doing it about safety and helmets and stuff. I might need tranquilisers next week, especially on the rock-climbing and river kayaking days!!!! Then the weekend after, Dougie's got Scout camp, so I've been to talk to the scout leader about that, and we've decided he will be ok to do that too - they are pretty good at looking after them, as they also have kids with severe nut allergies and diabetes too. I am just not going to tell the doctor Dougie's been doing any of this stuff.

The rest of this week just has to be better! Ali :laugh:

Ali, please forgive me, but I don't understand these doctors that won't treat. I do understand watch and wait, within reason, but for crying out loud! If you son had diabetes he would get insulin. Insulin doesn't cure the disease, it treats it! If he had hemophelia, he'd get factor 8 when he bleeds. Any other disease, they would treat it! Why the heck to do some doctors refuse to treat low platelets with ITP?!

Sorry, that's my rant...please forgive me. It just really irritates me. If he's that low and you and he are concerned they need to treat him. BAH! (sorry again).

Hi Donna,

I am still a great fan of not treating. Left to my own devices, I would simply wrap Dougie in cotton wool in front of the PS3 or the TV when his count was low. My issues are there because Dougie just won't comply with that approach - probably not unreasonably!!!! I know that he continues to play football at school and do other "banned" things when his count is low. And that's just what it actually does - his count is way out of line with his real aspirations for his lifestyle which include BMX, skiing etc.

I went to the UK ITP conference last week and spoke to a leading paediatric haematologist, and his view was that there was a case for treating given Dougie's love of the active and dangerous. I am going to try to get the local hospital to refer Dougie to him. Thats only because I want to explore the options on Dougie'. s behalf. However, I personally still haven't found the treatment that I would actually be happy to let him take, so I might be no further forward really......

Anyway, this week, he isn't bruising anymore, and he looks like he might be in the teens or twenties. And he's having a great time kayaking, canoeing and bike riding, so life is better again!

Ali

Hi Ali, I was at the conference too. Shame we didn't say hello.

I was particularly interested in the research that's been done on fatigue but sounds like that isn't a concern of Dougie's!

Good luck with the referral, the paediatric guy seemed to know his stuff.

Hi Ann

I only decided to go at the last minute. I did actually think of you when I was there, but couldn't catch sight of any name badges that said Ann!

I also thought that the fatigue person was really good; Dougie does actually get exhausted in a way that my other kids don't, but its not consistent, nor can I correlate it particularly well with low platelets, so I am assuming it is unrelated. I wasn't that impressed with the food intolerance presentation but to be fair, I don't think she was actually doing the study herself. A lady in the session I was in mentioned that she had raised her count by cutting out yeast and sugar - Dougie was horrified when I mentioned the possibility of cutting out sugar as a trial though, so I don't think we will be trying that one!!! As for the other people, I think I was "out-scienced" by a lot of it, although the bits I understood were very interesting.

On the whole, well worth a day and a 300 mile round trip - I might see you next year!

Ali

Oh my Ali - I can't believe that they did not treat Dougie when he had such bad bruises. I can understand the watch and wait approach, but when his count is under 10 and he has nosebleeds and bruising, then what the heck - I say treat and get his count up to a decent level before things get even worse.

Never the less, I am glad things worked out in the long run.

by the way, love your picture!!! It is so "calming"

Ha! Let me tell you, it wasn't calming at the time - its Dougie tombstoning off a 6 metre high cliff into the sea off Greece last summer. Where he jumped from is actually higher than the picture shows because I had to crop it to make it fit. With the benefit of elapsed time though, it is a lovely picture.....