I really feel for all of you - it can't be easy to have such young children with ITP and very low counts. Young children are more likely to grow out of the condition, and fingers crossed I really hope that this happens to all of them.
Brandi, I totally agree with Crystal, I find it really useful and interesting to get reminders and updates on Ryan. Its definitely not boring. We all get a lot of value out of reading how other people cope with this condition.
Phil, my experience is with a teenager not a young child. But with the benefit of time, maybe the following observations are useful just in case it doesn't go away quickly.
- Most children have no problem with ITP, its their parents that do! Its us who can't keep our worry under control and its us who sometimes end up letting ITP make life worse. Try to keep your worry in check qnd life as normal as possible. Live for the day and don't worry about the future. Party on the good days, and try not to panic on the bad ones.
- Try not to obsess about counts, bruises or petechiae. Look at counts in multiples of ten rather than single digits. Look at trends rather than individual counts. Upwards is always good, sustained upwards over a few counts is even better.
- Get as educated as you can about the condition and approaches to treatment. It makes it easier to stand up to doctors. Consider ALL treatments, and don't allow yourself to be rushed into anything without considering your options. I would recommend that you at least consider not treating as an approach even if you discard it. It is the standard approach in the UK for children - the outcomes are no different and it will save a lot of side effects.
- If your kid is outside the home for any reason, make sure that the people who are in charge understand when to call you or the hospital. Yes, it is very unlikely to happen, but it will make you worry less and therefore make life more normal.
- Don't say no outright to activities your kid wants to do. If counts are very low and you are worried, try to think of ways of letting your child join in.
- If you can, tell yourself that ITP is a condition not an illness. You can live with conditions!
It really is possible to have a nearly normal life with ITP - there are a lot of parents on this board whose children have that almost normality. ITP can be a nuisance, but it doesn't always have to be anything more than that.
GOOD LUCK, Ali
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so if you'd like to hear it, or have any questions please feel free to message me.