Does anyone have experience with a chlld with Hereditary Angioedema?

Question

My grandaugter was just diagnosed with Hereditary Angioedema. She's only seven. Anyone have experience with this disease?

Answer 1

Hi, i have a lot of family members with HAE including myself & there isnt anything they can actually do for kids that i know of, my nephew was put on danazol when he about 8 but his mother took him off it not long after because she didnt like the side affects (and there are many!). your grand daughter should be seeing a specialist at a childrens hospital for this illness, i was diagnosed with HAE when i was 8 and im now 31 & on danazol. its a terrible painful illness & i understand how your grand daughter feels when she's sick.
feel free to contact me anytime :)
Love Melanie xx

Answer 2

I'm not sure how they treat children for this, but adults are given the drug Danazol or prophylactic treatment with tranexamic acid. Antihistamines, cortisone steroids and epredrine doesn't work. Interestedly the anabolic steroid Stanozolol has been used in treatment with adults. I would take her to an immunologist at a teaching university that have experience with this.