ITP, our experience

On 22 April 2017, we woke up to a 22 month old with a purple rash that looked like he’d been splattered with paint from chin to waist and on his back and arms. It didn’t disappear under pressure so our minds went straight to meningitis. As he was oherwise well and happy with no cold or flu symptoms or temperature, I called the GP and they saw him before surgery opened. Our lovely GP examined him and we were sent to children’s ward. They treated with IV antibiotics as insurance but we all doubted a dreaded blood infection.

Rather, blood tests quickly showed that he had a very low platelet count ~20 (should be 250-400). This is called Immune Thrombocytopenia (ITP) – he’d had a really bad cold with rashes 10 days earlier but seemed recovered. Apparently his antibodies had killed the virus and then gone on to destroy platelets too. We were so lucky that all he had was the purple rash – intestinal and cranial bleeding can occur spontaneously at such low platelet levels.

The doctors continued treating for meningitis until tests confirmed he was definitely negative and then it was just a matter of time.

We had to keep a close eye on him and had lots of blood tests tracking his body’s regeneration of platelets. Until they were over 60 he had to have 1-1 care as bruises or cuts would not have stopped bleeding without treatment. (Of course he chose that weekend to climb out of his cot for the first time and landed forehead first on the floor!)

ITP is usually transient, rare, and unlikely to recur. However, it needs to be diagnosed quickly so that severe cases can be treated and chronic cases identified. We were lucky and things could have been much worse and very scary indeed.

I’m writing this post for a few reasons:

• to raise awareness of ITP
• to let people know that a purple rash without other symptoms still shouldn’t be ignored
• to recognise both my excellent GP (who called to see how we were doing and had privately suspected the diagnosis) and all the staff at children’s ward who looked after us and took repeated blood samples from a wriggly 22 month old with a scared mum.

To find out more, visit the ITP Support Association.