Our ITP Journey of a now 16 year old Boy.

Our ITP Journey of a now 16 year old Boy.

This ITP Story is by Rosie Green from Southampton in the United Kingdom, Rosie is the mother of a 16 year old Boy with ITP. 

Our story and journey started when my son was just 3 years old, we were booked in for an operation to have his tonsils and adenoids removed up the hospital. The evening of the operation my son had some strange type spots on his body, almost looking like blood blisters but flat to the skin. We thought nothing of it, they next day he had a runny nose and I rang the hospital but they said just come in and we will have a look, at 7am we went into the hospital and the nurse and Drs had a look at him. He was covered by this point , with red/ purple spots and they had a look inside his mouth and he had the same but was covered all over his gums. I was only 21 and I had no idea what this was.

The hospital said it was viral and it was due to a cold and he couldn’t have his operation done.

We started preschool, Leo started off as a normal boy with bruises and then these bruises became worse and worse , almost to the point of people staring at him, wondering why he had so many, one of his teachers said to me, I think you need to get him checked out as I was also concerned but I was also scared the Drs would think someone had hurt him.

We went to the DRs and immediately she said these are not normal bruises and referred him to the hospital.

He suffered multiple nose bleeds that didn’t stop, and bleeding from the mouth etc

My son was under a paediatrician, haematologist, and various other people.

He got tested for leukaemia twice, von Willebrand’s disease and lots of other tests he had to do.

He had a bone marrow biopsy and even spent a lot of his Christmas holidays in hospital on the Piam brown ward.

Leo’s platelets were ranging up and down but always under 150, the lowest they were they went down to 6, this was dangerously low but we got sent home. As still no one knew what was wrong.

Eventually after a big battle , we got a new consultant who diagnosed him with Chronic ITP and is now regularly monitored and has medication for when he does bleed, luckily we have not had to have no operations and just manage it at home.

His platelets only go down hill and extremely low when he catches a virus now and this takes him longer to recover . Thankfully, we have always had open access to a nurse and without that , life would have been a lot more stressful.

Rosie Green