talkhealth Blog

…”Might be a bit of a struggle in your case Tom!” I hear you say. However for Rosie things are a bit different. To be honest with you this post doubles up as a cry for help/advice/reassurance as much as anything else.We have started to notice recently that Rosie’s hair has started to thin at the front and a few scabs have appeared in the same area. It hasn’t been until the last couple of days we’ve really noticed she has definitely lost hair and is developing a bald patch.It was difficult to tell for sure how this was occurring until yesterday when our suspicions became evident – Rosie is pulling her own hair out. Karen came into the room and saw Rosie pulling at her hair and noticed a big clump of hair lay out in front of her.As you do (not always the best advice) but instinct often takes you to Google to see what the cause may be. I’d love to say she’s trying to look like me but joking aside it’s clearly more concerning.We had two thoughts initially, one that she may have an irritation on her scalp (hence the little scabs) and she’s trying to attack it, itch it but grabbing at her hair too OR she has some deeper underlying issue. Google took me to something called ‘Trichotillomania’.From www.trich.org: “Trichotillomania (also referred to as TTM or “trich”) is currently defined as an impulse control disorder but there are still questions about how it should be classified. It may seem to resemble a habit, an addiction, a tic disorder or obsessive-compulsive disorder. Most recently, it is being conceptualized as part of a family of “body-focused repetitive behaviors” (BFRBs) along with skin picking and nail biting.”This morning Karen took Rosie to the doctors and both our suspicions were discussed as a possibility. Obviously our hope is that she has nothing more than a rash and the antifungal shampoo she has been prescribed will clear it up, relieving any irritation, however we have to think of the possibility of it being a behavioural disorder of sorts and how we might help distract her, prevent, or teach her to stop before it has a permanent lasting effect on her hair. Obviously the fact Rosie is very young and has Down’s syndrome makes reasoning with her almost impossible at this stage.If you have any experiences of something similar, any advice or better still reassurance it would be very much appreciated!

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The Future's Rosie

I'm Tom, a thirty something father to three beautiful children and husband to my soulmate Karen. I started this blog as a means to talk about stuff, get things out in the open, a bit like an online therapy I guess and to celebrate the progress of my beautiful daughter Rosie who was born in March 2011 with Down's Syndrome (DS) and a Complete Atrioventricular Septal Defect (AVSD). Maybe the experiences shared on here will help others too, hopefully help illustrate the bright futures our children with DS will have if we can break down common misconceptions. When I first found out Rosie would be born with DS I found reading literature with open and honest feelings on the subject, extremely helpful. This is not intended to be a written masterpiece and I can promise you it won’t be. I don’t pretend to have a large vocabulary and to be honest the further behind me my school days become the more my grammar has deteriorated!... however, you will find what is written on these pages comes from the heart.