Wednesday 7 May 2014

Ever felt like pulling your hair out?

..."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!


8 comments:

  1. Poor Rosie and you! My daughter ( not DS) did this, it worsened when she was nearly 3 and had a new brother. She wrapped her hair round her fingers and then pulled it out.It looked a mess so I had it cut short, this broke the habit as she couldn't get hold of it to pull it out!

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    1. She does need her hair cutting anyway so will consider this! Thanks for you message :)

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  2. My little lad Nathaniel gets those scabs it drives him mad, his doctors give him steroid cream now as they become infected quite easily, do not know how you will detract Rosie as my liitle boy used to scarch n itch even in his sleep, sorry not more help.

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    1. Thanks for you message Melanie. I hope Nathaniel manages to rid the irritation. Must be so frustrating :(

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  3. Oh dear...sweet girl this is not a fun thing to do! I am sorry to hear about this terribly distressing thing! I have neither heard of, nor seen this condition at all. I sure hope the shampoo and medication helps! You guys are always in our prayers too! Much love from Utah!

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  4. Oh dear. Hopefully the shampoo helps. But I know a little girl that did this, especially at night so her Mum put mittens on her when she fell asleep so she couldn't physically grip the hair. It worked as it had just become habit :)

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  5. She is absolutely beautiful still! Sorry to hear about this. Sam occasionally bangs his head against things and it happens when he is bored or frustrated. It hasn't happened a lot, but I know from my teaching experience with special needs children that it is a tendency along with other repetitive and sometimes self-harming movements, like biting ones own hand. Each time I have said a clear "no" and then quickly distracted him with something interesting. I think distraction is good. Keeping a close eye on it to prevent it becoming habitual is good too. I am sure your loving attention will see to the end of this phase. I would be a little cautious with the shampoo as people with DS have extremely sensitive skin.

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  6. I just came across your blog..enlightening since I just found out my friend has a Downs girl too and has moved from India in order to get better support for her education in Europe. I will definitely be sending him this link. On the point about her hair...I had this syndrome of pullig hair. I was a teenager and it continued into my 20s. At that time (I am not almost 40) it was very taboo and I did not know it had a name until a few years ago. Then Google came about and I learnt more about it...Trichotillomania. However I do not remember how it stopped. I do still pull the occassional hair but its not as bad as it was and I guess it was related to anxiety. I shaved my head when I was 20....and continued with very boyish cuts until my 30s when I realised over time that i did not do it anymore...now I have long hair and some patches but nothing worth worrying about. Finally a few years ago I admitted to a few people about what it was as I was so ashamed of it and as I had a huge bald patch in the centre of my head (I had just a fringe and a tail of hair left after the pulling which i coverd with hats or bandanas) that it makes the pulling worse. Its uncontrollable and so satisfying when its done. But the baldness makes the anxiety worse. I hope that your little Rosie does not have this because it was not an easy cycle to break and I cannot image teaching an infant how to stop....maybe gloves? Or shaving the head and she will then just ""learn"not to do it. Its not as common as one might think it is so I would try to get support for her if it is. Most of the time we do not know we are doing it. I do remember one thing though..in any one episode, if i started, then i could not stop. So the key is to not let one hair be pulled...disctraction wont work in my opinon because I was doing it in hidden places/times.....or was able to do it publicly without anyone seeing. I do suggest shaving it...it will give her nothing to grab and she can learn to perhaps vent anxieties in other positive ways...I am not a psychologist so am not sure how to advise on channeling her need to do this. Whatever you discover..I wish you good luck...:-)

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