ITP question/advice... please.

[Ana84]

Hi, so I'm new to this. My son has been diagnosed with ITP just over 2 weeks ago. He had severe bleeding and the typical purpura rash all over his body. He ended up in hospital for a week and was given a blood platelet transfusion and some antibiotics for a infection. His bloods did rise but not high enough and since then we've been referred to Birmingham hospital. He's a very pale child prone to brusing and has suffered terribly with mouth ulcers for the past 18 months. I now know these are all symtoms of ITP. How ever he's had more bloods test done and both his platelets and his white bloods are still very low. He's now having bone marrow biopsy this Wednesday at bh. I'm trying get to be brave and think positive but I can't help but feel it could be something else. He's ok in himself apart from feeli g tired and a few headaches and leg pains.

Has anyone one else's child with ITP had the same experience and if so what was the outcome?... 😟

[sailor]

Hi Ana84. Sorry to read about your son. He has certainly been in the wars. I am surprised his mouth ulcers and bruising were not picked up by his doctor or nurses some time ago, before he suffered a bleed. Take heart, Birmingham is one of the centers for treatment of ITP with specialists in this condition for both adults and children. I feel sure they will get to the bottom of the problems. As to iTP. You will read this is a rare condition, but one you can live a normal life with providing certain rules are observed. Good luck and keep us informed of how he develops.

[Ana84 in reply to sailor]

Thanks sailor, I have heard fantastic things about Birmingham hospital. I did get my doctors to do a blood test last may, but the hospital only did a crp check wich came back positive. Wich yes, would of been the case as he had severe mouth ulcers at that time but they didn't do a whole blood count. So I think it's been a underlying issue for some time now. Hopefully once tomorrow is over with we'll know what's what asap.

Thanks for your reply.

[Bellazac1971]

Hi Ana84

How old is your little man? We are 8 months down the road with our 13 year old daughter so understand how you will all be feeling and can imagine the questions that are running through your head. It's scary, there's no denying that but now it's identified we can start to take steps towards getting things under control.

Our daughter has had the same typical signs and also had lots of mouth ulcers although as I suffer with them badly we thought it was a family thing.

Bella has had steroids and Rituximab infusions and has now had 3 weekly counts that have sat in the 30s which for Bella is brilliant. Eltrombopag is next if they drop below 30 and stay there.

She also had a bone marrow biopsy which confirmed that her body was producing platelets.

She is constantly jiggered and also has the joint pain. We've negotiated a shortened day with school and she manages about 3 out of 5 each week.

Ask any questions and be reassured that whilst we may never meet in person, everyone on the forum is there for you , your son and your family. 🙂

[Ana84 in reply to Bellazac1971]

Hi bellazac1971,

Aw thank you for your message. Although it's not nice to hear of your daughters diagnosis it's reassuring to hear from someone who has been through the same thing. How is your daughter now? That's good the school has been understanding.

So my son is 8. He had the bmb today. He was so brave. And all went well. The consultant was really good. Very reassuring and answered all my questions I had. His bloods have been up and down. Both the neutrophils and platelets so he's going to be having blood check ups weekly until we go back to Birmingham. And then hopefully we will know results BM results asap.

I do feel some relief now, we've just got to wait.

Thanks again for the message. All the best with your daughter. ❤

[mazda3]

I go to the queen Elizabeth hospital in Birmingham every wk.friday clinic xx