Mother of a child affected – experience report.

Sudden hair loss of the-then seven-year-old daughter. Diagnosis: Alopecia Areata – and now?

The pediatrician referred us to a dermatologist, who prescribed isotrexin, an ointment for the treatment of medium-severe acne. The list of side effects was so scary that we never used this ointment. Recommended age for the ointment was 16 years old!

After the transfer of the pediatrician to the University Clinic Homburg / Saar, our daughter Joséphine was to be treated with Dapson. (Dapson is used, among other things, for the treatment and prevention of malaria and leprosy). The chief physician of the clinic came to talk to us because I refused this treatment. She reacted very provocatively:

“Do you want a child with or without hair?”

I was paralyzed, totally overwhelmed with the situation. Of course, I wanted my child to get hair again, but not at such a price. Am I a bad mother when I do not listen to the doctors but to my gut feeling? A blood sampling followed. Joséphine was afraid, which I could not bear. We sat in the waiting room, she was quietly crying. I felt weak, helpless and desperate. A nurse came by, saw the weeping Joséphine and spoke to her.

“No child must cry at my station!”

Joséphine told him everything, really everything, and that she was afraid of blood sampling. He took her briefly by the hand, went with her to the office room and gave her an Emla magic plaster (local anesthetic) and much courage! Since then she has been more or less okay with blood tests, although still a bit reluctantly. But only with the magic plaster!

For me it was clear, “I do not want that for my child!”

After this day, I decided to contact the AAD by phone. The information they provided about this disorder was very important and very helpful. But the warm words of Mrs. Stenders were the most essential to me. I felt very well cared for, with my worries and my fears gradually going away. At the same time, she encouraged me to listen to my gut feeling and to trust me and my child.

Joséphine is losing her hair, but she will live!

We finished the medical marathon and tried to accept the illness and to live our everyday life. Bit by bit. We got support from a child and youth therapist. She strengthens Joséphine’s “inner team” and offers her a space free of guilt feelings. Joséphine was 7 years old when her hair fell out. She did not understand why I cried so much and why we were desperate. She herself was sad and afraid, but she was hiding it from us. She did not want it to be an even bigger burden for us. Even today it sometimes makes me sad and I wish that I could take my child’s disease for myself, to exchange my health with her. But I cannot change it, it’s not in my hands.