ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Friday, September 7, 2012

A "Normal" Life with ITP



Alison is from the UK and her son has ITP. He is a typical teenager and does not want to be different from all his friends. They have been very fortunate in that his wish to be 'normal' has been a reality. 



I 've been really touched by reading the stories on this blog for the last couple of months.  But I have sometimes found them a bit scary, so I thought it might be useful to show a less worrying ITP case.
We live in the UK, and my son was diagnosed with ITP aged 10 after we discovered he was suddenly covered in bruises one Saturday in May 2009.  We were told to take him to Accident and Emergency, where 4 hours later we finally got to see a doctor (those in the UK will probably recognise this as a typical Saturday evening at their local A&E Department!).  He was admitted for the night, and in the early hours of the next morning, a doctor came to tell me he had a platelet count of 5 and they thought he had ITP.  I was told it would probably go away quickly, not to worry too much, but he would have to take care for a few weeks.  Doctors in the UK generally treat ITP in children on the basis of symptoms and not counts - my son was fortunately only covered in petechiae and bruises with no active bleeding at all and so he didn't receive any treatment. The next morning his count was 9 and he was discharged at lunchtime and we went home to watch and wait for things to improve......
His count didn't go over 20 for the next six months so he had a bone marrow test - very uneventful, he was cycling his bike down to school to pick up his little brother a few hours later.  It didn't show anything abnormal. After about 6 months his count suddenly went up to about 120 and we all thought it was over ............ for at least a few weeks until it plummeted to under 20 again!  
This was followed by a fairly good year countwise - counts went between about 5 and 50 but they were mostly around 30.  About 18 months in though, his count went down to about 10 and it has mostly stayed somewhere between 5 and 20 ever since.  He still has very few symptoms - petechiae on his legs if his count is below 20, bad bruising and bleeding gums when he brushes his teeth if it is below 10, and an occasional heavy nosebleed. He's had a few accidents and sports injuries where ITP complicated things but nothing serious. He tried steroids for a few weeks after a run of nosebleeds (didn't do much) and IVIG once (worked, but gave him the headache from hell).  If he has a few nosebleeds now, we give him a couple of days of tranexamic acid which seems to work.  Fingers crossed, he is about to start the Eltrombopag trial, and he hopes that this will allow him to play rugby.
I sometimes read about children (and adults) with ITP who have very restricted lives and a lot of medical intervention. I feel very lucky that, three years in, my son has a very normal life. He sees the haematologist every couple of months and misses school to attend these appointments, but otherwise has missed only a couple of days of school due to ITP in the last 3 years.   I think his doctor is very relaxed compared to others that I have read about and he is happy for him to do pretty much anything if his count is over about 20.  This helps to keep things normal and keeps the worry to a minimum. The doctor has told him to limit activities that may result in head injury, but he is a typical teenage boy and only hears what he wants to hear! 
I 'think' he has understood the message on some of the more risky sports and activities, but I have also resigned myself to the fact that he does pretty much what he wants to do otherwise, and just doesn't tell his father, myself or the doctor about it.  It probably helps that we keep restrictions to the absolute minimum, so he knows that when we say no, it really must be too risky.
He plays basketball, tennis and football (soccer) with our permission, although when he is particularly bruised he doesn't play competitive football matches.  He goes to scout camp where I am told he climbs trees with the best of them.  He playfights with his brothers and friends and he rides his bike (with a helmet on if I see him first!).  He goes paintballing with friends as well as and bombs down hills on a sledge on the rare occasions that we get enough snow. We have just been to a theme park where he rode all the most scary rollercoasters and the photo above is him jumping off a cliff into the beautiful Greek sea a few years ago - his count was about 20 at the time.
Through reading other people's ITP stories, I realise how lucky my son is, and I am thankful every day that he only has ITP.  Every time I take him to the haematologist, I think that my son must be the 'wellest' person that he sees - I even feel like a bit of a fraud taking him at all!  Yes, ITP is a real nuisance and a bit of a bind sometimes, but that's all it is at the moment -  in fact, my son tries his upmost to ignore it! I often hear people describe themselves as ‘fighting’ or ‘suffering from’ ITP and I don’t think those are the right words for my son at least – ITP is just something he has, a bit like I would describe him as having brown hair, or beautiful green eyes!
With luck and a following wind, I am hopeful that it will remain that way.


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