Good luck Ali and Dougie

Today is the day you go to see the doctor is it not? Hope things go well, and I will be waiting to see your next post.

arrr, thanks Michelle.

I had a whole day of taking kids to the doctors today - very boring, but they are on holiday and I am catching up with a whole load of things I should probably have done months ago.

a) took Dougie to see the GP to get a referral to a podiatrist - he is getting a lot of pain in his ankles that is probably caused by the fact he has flat feet. Just got to wait for an appointment now, could be months!

b) took Lol to see the GP because he STILL has a cough after two rounds of antibiotics for a chest infection. The doctor thinks he is getting slowly better, but we've still got to go back again in another couple of weeks. He also came out with a prescription for a nasal spray for allergic rhinitis.

c) Took Roger to get a blood test to make sure that he's got over all the blood problems he had last year - low white cells and lowish platelets. I assume he must be ok, although he still gets petechiae round his ankles quite a lot, which worries me.

d) then we had the appointment with the haematologist this afternoon. Got well told off because I hadn't taken Dougie into the hospital when these nosebleeds were happening. I blame his grandmas - the first time, my mum convinced me I was panicking about nothing, and the second time, my mother in law was staying while we went away for the weekend, and she virtually ignored it - in fact, if I hadn't noticed the blood all over his pillow, I think she might have forgotten to tell me at all, despite the fact that he had bleeding slowly for two days at that point! Anyway, I have got to take him in for anything lasting longer than 15 minutes in the future. His count has bounced upwards to 17 again, so the doctor didn't want to do anything today, but he has given Dougie a prescription for transemic (sp?) acid to take if he has a slow nosebleed again while we are on holiday. For anything major, he has given me a letter (which the hospital are also going to send to me translated into Greek) which explains the issue and the treatment protocol they suggest (IVIG) in an emergency. So I think we should be ok.

My mum just said to me that, with days like today, its no wonder the NHS is in such a dire financial situation. She reckons my family are draining its resources - unfortunately I can see her point!!!!

Hope Danica is still doing well. It must be great to have those sort of numbers.I was wondering though whether her cleaning frenzy had disappeared along with the increase in her count? If so, what a shame!!!!!

Ali

Oh my - you are very busy with your kids.

I hope things are okay with Roger. A little scary isn't it?

I can't believe that they did not give Dougie any IVIg. Our criteria here is that the count should be under 10, BUT -- it can be given if symptoms of bleeding exist.

Has he ever had IVIg. IVIg only lasted a short while for Danica, but maybe Dougie would get six months of good counts out of it, who knows? I know that it is expensive, but it is not THAT expensive that they can't give it to try to help his symptoms.

And yes, Danica does still clean so I am happy about that.

She seems to be doing well except for still being tired, but she has been through a lot, and she is 13. She looks good, and I think her hemoglobin should be back into normal range next time we check it. (I thought she had a repeat test this week but it is next week)

I think all of those visits are totally justified. So don't let your relatives get to you. My family is a lot like that. My father was a doctor and we never saw other doctors. He also always pooh-poohed our complaints. This is a problem because now as adults we never know when we should go to a doctor and tend to put things off too long. And you're not wasting resources, because let's face it, it's a lot better to catch things early before you need hospitalization or other expensive treatments.

And I must say that Dougie so far has been a very cheap ITP patient. I think most of us have cost our healthcare systems thousands in treatment, or spent it ourselves.

Lily

Michelle, I think that you have to be having significant issues over here to be given blood products - the UK has had a load of transfusion related problems and doctors are rightly quite cautious. Dougie has been down to a count of 1 before now, so 17 seems quite good to me.

Lily, I was meaning to thank you for the fantastic idea of getting the hospital to provide the translation - they were very happy to help. My parents were teachers but they definitely seem to have similarities with doctors. When we were kids we had to be on the verge of admission to Intensive Care before we were allowed a day off school, because they couldn't easily take time off to look after us. My normal reaction to illness now is that it is mild and will go away if I leave it well alone. It works most of the time, but not always!!! I am going to take Dougie into hospital if the nosebleed happens again anyway, a) because it was horrific, and b) because I don't want to get told off again!

Ali x

Michelle,

When I went to the UK ITP conference this year, there was a session on fatigue and ITP -http://www.itpsupport.org.uk/conventionppt/showjulianewton2011.htm

Anyway, I think I remember them saying that fatigue from an autoimmune condition can continue even in remission - so even ITP patients with normal counts sometimes reported significant fatigue. I hate to think thats true though, because it would mean that people might be stuck with it ad infinitum????

I have my fingers crossed for a good result for Danica next week anyway

Ali