Discussion Series: Would you peel the scalp of a two year old?

 

Twenty years ago my journey with Alopecia Areata started.  My son, then 20 months old, had a chicken pox that rested at the hairline on his forehead.  Within days his hair had fallen out and was starting to receded down the center of his scalp.

With no knowledge of the cause and no visible sign of hair regrowth, off we went to the dermatologist.

On inspecting my son, the conclusion was Alopecia Areata. After the general questions probing what that meant, came the question from me “so how do we treat this”.

I’ll never forget the following words.  “There are 5 treatments that you can opt to undertake”. My immediate emotion was relief, but then he continued: “ So your options are;

• Ultra violet light treatment – here a series of sessions are used to target the skin cells, the risks are severe burning for young skin, increased risk to develop skin cancer:.
• Cortisone injections into his scalp.  He would need a series of 5 treatments initially of 50 injections and based on his age would need to go under a general anaesthesia  each time and there is a risk that it will interfere with his normal development.
• Next we can apply a chemical DPCP directly to his scalp, here the scalp becomes allergic to itself and once the blisters heel and peel, is when we will see if there are results. The risk here is that it is very uncomfortable, prone to infection.
• Steroid treatments can promote hair growth, but could also make him sterile taking them from such an earlier age.

The final options is to put a hat on his head and get on with life. So which option do you want to go with?”

My feeling of relief immediately disappeared after I heard the words “severe burning” and had turned to total disbelief.  I was shocked that he would convey this information so bluntly, but also astounded that these were the options presented.

Still with a ray of optimism I asked “so what treatment has the best outcome?”.  He responded “Well, which treatment are you leaning towards?”.  I said, none, they are all horrific.  Quite smugly he replied, “That is a common answer from parents, and that is why we don’t have any meaningful statistics on treatment for children and youths”.

I spent the next four hours researching for support groups, specialists with addressing handling of emotional situations.

My next appointment was with a Psychiatrist, and the outcome of this appointment gave me confidence and strength that I could manage my sons journey with Alopecia Areata.  And from about the age of 14 he did treatment number 5 and engaged in wearing a hat.

 

What was your first experience with treatments for alopecia like? What would you have done if you had been in my shoes?

Chel Campbell – AAAF President

The Discussion Series is a new format we are trialing here on Love, Alopecia. Consider it an open invitation to get in and get involved. We know that our community is at it’s best when we’re sharing stories and advice and experiences – that’s why we want to hear yours. Got an opinion on this post? Pop down to the comments and let us know – we love hearing from you! Let’s get this conversation ball rolling!