My Apologies But Im Not Sure Where To Start!!

Im so sorry, but im rubbish on a computer. Ive registered of course but i dont know where to type what I need help with or how to find someone in my situation!

Just start typing below my post (hit reply) and tell us your story.

thankyou

My son complained that he had rashes on his body over 3 months ago now. I thought they looked like what i sometimes get when ive been gardening as he is always out in the park with his friends. when they hadnt gone after a couple of weeks i took him to the doc who wasnt concerned at all and said to have a blood test just in case.
Cut a long story short, his platelet count came back below 10, hospital apps, lots of blood tests.
they increased to 11 in August then they wanted to leave him 6 weeks as they thought things were on the way up.
they have now gone down to 7.
i have been so confused by the doctors reactions. They vary so much. They tell me not to be over protective and that he can lead a normal life. He has just turned 15, a mad football player and was always on a BMX track. Not any more!
When his count was this low before they said to keep him off school, which i did.e is back at school now but he is so fed up of staying in at break time. Im on my own with 2 boys and finding it very tricky to know how protective to be.
He went back to football training last week as the doc said he was ok to join in practising passes but not to ply a game (this was before the blood results which showed they had gone down). He came home tonight and he played a game which the doc said no way to!!
im so sorry if this sounds muddled. i havent heard from the doc since the results came back and feel i have no support on what i should allow him to do, apart from sports

Hi Claire. I'm glad you found us.

You will find varying responses from doctors because some are familiar with ITP and some are not. Usually, the doctors who are not will be the ones who tend to panic more. In the past 10 years or so, thinking has changed a bit and we now know that low counts are not always critical. However, I do not think he should be playing football with a count that low. Football players are getting head injuries without having ITP and a head injury to someone with low counts could be very serious. My guess is that counts should be above 100k, but there is a sort of guide that you can use. I'll post it in a minute.

Has he been treated at all? If so, what did he use? If he hasn't been treated, that is an option so that he can continue with his activities. Some parents prefer not to because of side effects, and some prefer to treat so their teen can do their normal things. Your son is old enough to have some input as far as that goes.

How are his symptoms with low counts? Symptoms matter because some people can handle the lower counts and some have bleeding symptoms. That can also help determine the course that you take as far as treatment. Counts of 7 and 15 are not that much different and platelet counts fluctuate a lot, so you could see that sort of change in a day.

Playing sports is an important part of having fun and living your life. Having ITP should interfere as little as possible. Just keep in mind smart play such as wearing helmets, elbow pads, wrist guards and knee pads or any other protective equipment that is recommended for the sports you wish to play and try to avoid injury.

What sports can I play with ITP?
The following is a list of sports you can play or should avoid based on your platelet count. Just remember to have fun and be safe.
DISCLAIMER: There are no formal national guidelines for sports and activities with ITP. We've modeled these suggestions on those used by the National Hemophilia Foundation for other types of bleeding disorders.

Sports and outdoor activities can be pretty easily divided into three groups.

Sports that are safe for anyone, even with a bleeding disease. Walking, swimming, tennis are examples.
Everything else: basketball, soccer, baseball are examples.
Sports that are potentially dangerous for anyone, even without a bleeding disease. Hang gliding, tackle football, ski racing, wrestling are examples. For many patients, an important choice is whether it would be better to avoid some riskier contact sports, or to be treated to raise the platelet count in order to play. This question doesn't have a single best answer. It is important to consider this choice with your hematologist. The answer for one child may be quite different from the next. Always check with your hematologist if your platelet count is on the low end of any of these parameters for any serious sports playing. Normal platelet counts are >150,000/mm3. As long as your platelet count is over 75,000, it is usually safe to play most sports, just be sure to protect yourself as any athlete would.

If your platelet count falls below 75,000, it is best if you do NOT...

play ice hockey with checking, field hockey (because of the sticks), or street hockey
box
dive competitively
go hang-gliding
play tackle football
play rugby
play lacrosse
ride a motorcycle
play racquetball (because of potential eye injury from racquets in close quarters)
go rock climbing
wrestle

If your platelet count is less than 75,000 but greater than 30,000 to 50,000, it is usually okay to...

play baseball (just not catcher; wear a helmet on the bases)
play basketball
go bowling
dive in the pool (just no high dives or competitions)
practice gymnastics
go horseback riding
go ice skating (wear a helmet if you're unsteady!)
practice karate, Kung Fu or Tae Kwon Do (no kicks to the head!)
go mountain biking (wearing a helmet of course)
go river rafting
go roller blading or roller skating (with protective equipment)
go running
go rowing
go skateboarding (with protective equipment)
go cross country or downhill skiing or snowboarding (be sure to wear a helmet) Ski racing demands a higher platelet count.
play soccer
play tennis
compete in track and field events
play volleyball
go water skiing
practice weight lifting

Most people with ITP can...

go water skiing
practice weight lifting
go for a bike ride (with a helmet of course)
go fishing
play frisbee
play golf
go for a hike
practice Tai Chi or Karate
go for a walk
go swimming
go jogging


www.danafarberbostonchildrens.org/conditions/blood-disorders/immune-thrombocytopenic-purpura/itp-kids.aspx

he seems pretty ok. Just quite tired but unsure if thats just a teenage thing!
He has had Tranexamic Acid tablets when his gums bled and when he went to the toilet and passed some blood.
what would you suggest for school? They said lads that age muck about and couldnt guarantee his safety so he needs to stay in a class at break but it makes him feel even more excluded.

he hasnt been treated as they say they are moving away from treatments as they usually do more harm than good and that we just have to sit tight and see what happens

Treating is a double edged sword. Many people do, but they all come with risks and side effects. They are moving away from treating mostly in children; adults are treated most of the time unless they choose not to. Your son is right in the middle of that and I'm sure you could choose to treat if you wanted to. It depends on how much he wants to participate in sports. Some teens accept the limitations and some resent them.

I don't know why he'd have to stay inside for break. Did he wrestle around or get hurt before he had ITP? If they agreed to allow him to pass the football (and an injury could occur there), they could allow him to go outside at break. Your son is old enough to have some common sense and understand what is acceptable.

Some treatments can induce remissions, so if he gets to the point where he is getting tired of waiting it out, he does have that option.

Claire, I definitely remember thinking that the risks to my sons mental health were probably worse than the risk of bleeding at times. But my just 17 (today!) year old has never been kept in at break or lunchtime regardless of his count - that sounds like the school over reacting? If that's the case the hospital may be able to talk to them about what's appropriate. We did try limiting activity in the years when my sons count was under 10 but he generally went and did what he wanted to anyway - there isnt a lot you can do to stop a teenager sometimes! His doctor seems resigned to the fact that he plays soccer regardless of his çount but officially he is only supposed to do so if his count is over 20. He's had itp for about six years and he says it's permanently changed the way he plays football because he's tried to avoid hard tackles and heading for so long. Good luck.

Thanks for the advice. Maybe im being over protective. I guess i need to find a balance. I have some time off today so ill have a look for others with teenagers having ITP as it doesnt seem that common and like you say, the doctors vary in their advice.

it has been 4 months now since diagnosis, and his platelets are up to 35. they have not risen as expected but they want to give it another 3 months before doing other tests to see if it is something more serious.Its such a worry and i want them to start now. Is this reasonable?

ITP is usually diagnosed by looking at a blood smear on a slide. The next investigation would be a bone marrow biopsy and I don't think we've ever seen anyone's diagnosis here change after a biopsy unless there was something else in the blood that wasn't right.

Four months is no time at all to expect even an acute ITP to have resolved so the doctor's expectations are a tad unrealistic. For the count to have risen at all on its own is great and with a count of 35 he can do pretty much anything.

Are you in the UK or the US or somewhere else? That would make a difference with the football thing, UK football is much safer with low counts than American football. Also who is treating your son? Haematologist or GP? There are specialist ITP paediatric haematologists in the UK itpsupport.org.uk/itpforum/centres.htm . The US and other places I don't know about.

Claire:

I have rarely ever seen ITP end up being something more serious. Maybe a handful of times in the past 17 years. Usually when that happens, there are physical symptoms or something else in the blood work. Try not to worry.

As Ann said, it can take time for ITP to resolve. A year is about average. If it doesn't resolve by then, it's probably chronic. Chronic does not mean for life since many people go into remission.

thank you for your responses! Im in the UK. Every time we go to the hospital we see a different doctor and they differ so much in their thinking. Im trying to get referred to Sheffield where there is a prof Vora who is a haematologist. The last doc i saw, said to give it 3 more months and if no dramatic improvement they will refer me for more tests. Its a long time to wait not knowing what is going on!

More than likely, what is going on is just ITP. I've never really heard a doctor use a timeline for tests and honestly, most people do not have a lot of testing for ITP. Again, try not to worry. If he is feeling well, that is all that matters for the moment.

Your GP should refer you to whereever you choose. See what Sheffield say about more testing. Good luck and let us know how you get on.