Contrary to the title of this post, Josephine’s Trichotillomania has reared its ugly head. Ironically, it is exactly ONE year ago since her first major pull. Why now? Josephine is a happy and funny little girl with a love for fish, paper and her brother. So what is it about August?
My guess is as good as any, but think it’s certainly a path to consider…
Late July of 2010, Josephine started crawling on her own. New words started emerging. Progress was everywhere. Early August of 2010, Josephine started pulling her hair. She was overwhelmed by what was happening and found comfort in her own hair (and later, mine).
The hair pulling never completely went away, but certainly subsided enough so we could start brushing, styling and cutting Josephine’s hair.
Now we are in August of 2011 and again, we are seeing major progress with her skills – standing independently, cruising and walking independently (when the mood strikes her), improvement on a cognitive level – a lot for a 3 year old to process in a relatively short amount of time (I say relative because everything happens on “Josephine time”, not “the rest of the world time”).
However, while we are seeing great strides, Josephine again is having difficulty processing all these strides and takes it out the best way she knows … hair pulling (Trichotillomania) and hair eating (Trichophagia).
I am very bothered, both in my heart and in my head, that the Trich as come back. I have been told it may never go away, but I have also been told that Josephine is so young, so there is little data available to accurately give a prognosis.
I know another child with Tet 8p that also pulled hair, but that symptom seems to have disappeared for her.
So, is this a new symptom for Tet 8p that needs to be explored? Would she have had this disorder regardless of her chromosome triplication? Who knows and I suppose it’s best not to go there because I have to deal with the here and now and not the what ifs. What ifs will cause ME to pull out MY hair and Lord knows, we don’t need another girl in this house that’s going bald!
My heart hurts because there is nothing worse than watching your baby hurt herself to soothe herself. We try all we can to control her emotions and keep her calm, but when you are in the car on Route 80 in Pennsylvania or on the Garden State Parkway and a major meltdown occurs, little can be done to calm her down. We stop the car, relax Josephine a bit, start driving again and the whole thing happens over and over again.
Do I wish Josephine could control herself and her Trich? Absolutely. Do I wish I could let Josephine’s hair grow long enough to make adorable pony tails? Absolutely.
Do I think hair is what defines her? Absolutely not. Josephine is who she is, hair or no hair. Just trying to ride out this next wave and keep hope that we can find a cure or treatment to help our little girl and this thing called Trich.
