My daughter is almost 9yrs old, she was diagnosed at 4 with ET Jak+. She's had an okay few years since diagnoses, she suffers with migraine which can be debilitating. We managed to get them under control with medication. She attends her Hematologist every 3 months for bloods, her platelets are staying 700-800 with out any medication.
Her general health is okay, she picks up the usual viruses and infections in school. Over the past six months or so i have really noticed a change in her energy levels. She gets tired very easily, she is getting headaches 2-4 times a week and has been complaining with pains in her legs.
Her Haem doesnt think its ET related! My husband keeps saying she has 'shin splints' because he did as a child, in the back of my head im thinking maybe bone pain.
I dont know what to do, all the info online say these are symptoms of ET but according to the Haem they are not necessarily symptoms of childhood ET. I feel at my wits end as a mother, everybody keeps telling me she is 'fine'. Yet i feel she is not, it was mothers instinct that got her diagnosed in the first place and i feel something is not right. She has had 2 bmb since diagnosed, it confirmed her diagnoses but also showed she had no disease progression or scaring. She is due another one this summer, im terrified the results will show disease progression.
Does anyone out there with a child/young person with ET or PV have these symptoms?