Hello to everybody!
I want to give you an update on Jan and ask for your help again:
Jan is on 6 mg Anakinra at the moment. We need to inject him twice. Since then
his rash has vanished and he has improved a lot. He started to discover his body
and can sleep when he is well.
Unfortunately he still has bad hives. They seem to develop every 10 to 14 days -
which is still not satisfying as you can imagine. He is very unwell for one day
then (fever, pain, eats and drinks little ...), paracetamol helps him for 2-3
hours.
How often do NOMID - hives occur in your children and how long do they take?
Every 10 - 14 days is too frequent, isn`t it?
Could it be that his hives get less when he gets old better?
Do you have an idea about how we could help him better?
I`m grateful for any advice, perhaps you have made the same experience???
All the best to everyone - esp. to the kids ...
Daniela