Mum to itp sufferer

[Ab36]

Hi , my 9 year old son was diagnosed with ITP back in May.After an emotional rollercoaster of endless appointments and tests we are all learning to accept this crazy thing as part of our lives.

[Arditajtsh]

Hi , my brother was dignosed three months ago. We are also really worried for him. I guess its same for all people with Itp. Every week same tests. We hope that his plt count will increase but it stays the same.

[Ab36 in reply to Arditajtsh]

Yes its just a waiting game, seeing what the next test says. At least I am not wrapping him up i n cotton wool now, he needs to feel he can live his life and if i keep calm he feels better.

[Arditajtsh in reply to Ab36]

Yes its same for our family too . Now we let things just happen normally because my brother has different mood swings if he sees that we are worried for him. Today my mother did a test for his throat and the lab results showed that he has a bacteria-streptococcus pyogenes. Again same worries . We dont know if he can use antibiotics :(. His pediatrician i guess will found whats the best treatment for him. I hope he will through this easily

[Ab36 in reply to Arditajtsh]

Aw I hope it works out ok for you all, it just makes everything more of a worry. My son had very severe tonsilitis a couple of months back got antibiotics to clear it up and bounced back amazingly well. Will hear how it goes.

[Arditajtsh in reply to Ab36]

thank you . I hope that antibiotics will have a good effect on my brother too.

[Heatherjayne in reply to Arditajtsh]

Please be aware that some antibiotics can affect platelets. Please don't ever not give them if they are prescribed though. There are different anti biotics to try and use. We found out that amoxycillin affected my daughter and caused her counts to drop. Ask for fbc before or start of treatment and at end to give you an idea of what affects your brother. Also only use paracetamol for high temperature not neurofen. Good luck!

[Heatherjayne]

My daughter was 9 at diagnosis, she is 15 now! My protective instinct as a mum went into overdrive, when her counts were under 10,000, I would put her mattress on the floor, have fostered out our pet dog because she jumps up and cuddles her and had caused bruising once from doing this. I was almost obsessed with her blood counts. At Alder hey children's hospital they advise to treat the symptoms and not the numbers, I really wish I did this more because. Katie my daughter had a splenectomy in Jan last year which was great and worked but I wish I could have had a more relaxed attitude because now she gets severe anxiety attacks in doing things and we are working through that now with the help of child adolescent mental health team in our local hospital.Itp really is a rollercoaster! ☺

[Ab36 in reply to Heatherjayne]

Thanks for this it really helps to hear from other parents in the same position. I am more relaxed now, we have survived 9 months without anything really bad happening. Mostly manage to put it to the back of our minds but watching a 9 year old play knowing he has ITP can be very hard as you know. It must be hard seeing your daughter suffering anxiety, im glad splenectomy has helped. At the moment apart from some spectacular bruises and nosebleeds my son has no symptoms. I really must try to at least come across as more relaxed.

[2sweetkids in reply to Ab36]

Hi ab36, my son is 7 and has had itp for a year and half now. I find when his counts go very low he is emotional. Last he was tested they were 50 so we are very happy with that as they have been as low as 4. I find that his counts are better in winter time. I feel for him as he has fallen really behind with football particularly and that has gotten him down. He is a very sporty boy. Is your son sporty?

[Ab36 in reply to 2sweetkids]

My boy loves his sports, luckily he enjoys running so he is still able to take part. We live on a farm so and he loves nothing more than helping his dad, he is constantly knocking himself but I feel we have to let him keep doing things up to a point. Its difficult when he has to miss out on gym at school if they are doing anything too risky for him but his friends have been great at looking out for him and keep him company if he has a nosebleed. Its funny how their moods seem to be affected but im sure there is a connection. I still hope itp might disappear as quickly as it started but at least I now feel ok if it doesn't we can deal with it.

[Heatherjayne]

Hopefully your son's itp will disappear as suddenly as it came as it often does in the first year to 18mths. Yes these groups really help loads. Have you joined PDSA as in platelet disorder support association? There is heaps of info on there as well as chat! Good luck to you both and God bless!☺

[Ab36 in reply to Heatherjayne]

Yes we are still hoping that it will disappear. Pdsa a huge help for guidance and answers to many questions. Hopefully the anxiety will pass too. Thanks

[Ricksp]

Hi. I started suffering from ITP when I was six... now I'm 29. I used to have steriods which in my opinion didn't do anything apart from make me put weight on. Now in on some medicene called eltrombopag, it's excellent! ITP isn't as serious as it was when I was young. They have really good meds now and you can live a normal life. Good luck xx

[Ab36 in reply to Ricksp]

That's good to hear thanks, so far he has not needed any treatment, fingers crossed it stays that way.