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Explaining hair loss to my 3 year old daughter, i'm desperate for answers

(17 Posts)
alopeciamum Tue 15-Nov-11 21:32:23

my daughter has gone to bed tonight upset despite reassurances from me she is beautiful sad

i just dont know what to say, she developed sudden hair loss 4 months ago and it gets worse every day.

she is missing around 1/5 of all her beautiful hair and it is obvious she has a problem to a stranger, but up until recently she didnt notice it.

it started on the top and back of her head so she couldnt actually see it herself but now the patches are getting so bad she is now visually aware when she looks in a mirror.

tonight she pointed at her head and said 'mum, my hair, its... er, its, funny'

i responed by saying 'its not funny, its shiny and special and beautiful'

10 mins later she said 'mum, look, my hair, its gone' and burst into tears sad

i just dont know how to handle it, what to say, how to explain it.

the obvious 'you're gorgeous, special, beautiful, smart, bright' is easy but how do i answer 'why is it falling out' or 'where has it gone'

how do i deal with other people asking, looking, staring?

what do i do if it continues to fall out? cut it? cover it? talk about it? ignore it and carry on?

she is only 3! girls love bobbles and clips and rapunzel...

i'm in tears myself now, there is no help online, the childrens section of alopecia on line is closed down due to lack of funding, there are no groups in my area.

the hospital who have done basic tests say 'its one of those things'

no treatment, no cure, no prognosis, no future predictions, might grow back, might not,

anyone have experience of this?

alopeciamum Tue 15-Nov-11 21:59:12

bump

Flossie69 Tue 15-Nov-11 22:09:41

I'm so sorry, no experience, but bumping for you, and crying with you - I would be as devasted as you are if this happened to my DD. Sending you hugs.....

workshy Tue 15-Nov-11 22:25:18

hi, no personal experience but I went to school with a girl with alopecia so just wanted to let you know how she dealt with it

little girls do like pretty clips and rapunzel hair -but they also like pretty scarves and hats etc, the girl in my school had a huge collection and actually some of use were quite jealous that we weren't allowed to wear them

sometimes her hair was thicker than others and she had varrying degrees of hairloss at different times, like your daughter there wasn't a specific reason -just 'one of those things' -and I can understand how frustrating that is, my daughter has severe scarring on her arms and legs from eczema that is 'just one of those things' no allergies or anything so there is little I can do to 'fix her'

anyway I digress....

the girl at school (and also an adult friend of mine who's hair has thinned dramatically) found that keeping it around shoulder length or shorter looked the best -tempting to grow it long but it tends to exaggerate the hair loss

in terms of what you should do about talking to her etc, you need to do what we all do and that is do what you think is right at the time, if she asks a question I do think you should answer it and the best answer I found with my DD is that we are all different

and when people stare I have two approaches (because people do stare at DD, especially in the summer when I refuse to hide her away) I either stare right back, or I say 'Can I help you?' with a big smile on my face -most people are horrible embarassed by that question

big virtual hug to you and your daughter smile

alopeciamum Tue 15-Nov-11 22:25:31

Thanks flossie,

I'm so worried about her future,

Will it be total loss? Will she be bullied? Will she have confidence issues? sad

lingle Tue 15-Nov-11 22:26:35

you poor thing. I've had alopecia since I was 20 and it is very upsetting.

my instinct would be to craft a simplified "medical" explanation and to make it as matter-of-fact as possible. I wouldn't pretend it's not an issue because it clearly is for her now. She might search for a reason and maybe come up with something scary/something that makes her feel bad.

it's a sort of auto-immune response isn't it? when the follicles go dormant? or even if that's rubbish, can you saying something like "your hair's a bit poorly, your body isn't recognising that bit of hair is yours; silly old body, let's hope your body gets better and recognises it again".

This may be useless, and is almost certainly technically incorrect! but it's a start - and it would give her something to say to other children if they commented.

I guess you've got a tricky balance to strike. On the one hand, you need to accept that it's upsetting for her. On the other hand, it isn't the same for her as it would be for an older child so you'll be trying really hard not to project....

good luck to you both.

alopeciamum Tue 15-Nov-11 22:36:13

Thanks workshy. I did think about hats ect and we will need them in the summer for burning I guess but I dont want to 'hide' it without her prompt iyswim. I guess there are many conditions in childhood which are going to impact on their lives in one way or another.

I do think honesty is best but struggle with detail because of her age. I guess I will learn to deal with the questions just as she will.

People do look, I often think they assume she has cancer, and thank god she doesn't, it's so difficult to protect her from it all.

Thankyou for answering

stickyLFDTfingers Tue 15-Nov-11 22:37:52

she's going to need a lot of support from you, for sure. Have you contacted a trichologist? The hospital's answer is crap, very angry on your behalf about that. OK it's not life threatening, but it is very upsetting, of course. I really want you to have a better answer than that.

If it helps, this is "my story":

I had hair loss as a kid (stress related - bad thing happened when I was 8 which I won't go into now!), alopecia areata they called it. I went to a small school and the teacher got the whole of us together and explained how sticky had this hair loss issue and wasn't to be bullied. It was tooth-grindingly embarrassing at the time, but it worked.

When I got to senior school, it had largely grown back but was not good at certain angles. It got to me, certainly. I also decided to half starve myself, which I'm sure was linked. Fortunately I got help at the right time, and got turned/turned myself around before it impacted on my life too much.

Once I grew up, it was OK. I don't have fabulous hair, but I have other good points! smile

lisad123 Tue 15-Nov-11 22:41:27

Maybe ask if she would feel better wearing a scarf or hat. She may not want to ask, kids are funny things.
Someone I know had hairloss as a teen and so we had a hat party for her.

Is there any books on it at all? Hopefully that can help explain it

alopeciamum Tue 15-Nov-11 22:42:51

Lingle. Again thank you for answering and really helpful to hear from other with alopecia.

I though too about a simple medical answer but can't find one she understands at the moment. I might say it's just a bit poorly for now. I want to tell her it will grow back but dont want to get her hopes up sad

Have you changed anything about you/lifestyle/diet since the onset?

I read something about cutting out/down wheat?

There are no other children at her nursery like her. I would like her to meet other girls with hair loss so she knows it affects others too.

stickyLFDTfingers Tue 15-Nov-11 22:49:23

My DD2 has a prominent strawberry mark on her face, which people notice and will ask about. I always explain friendlily and non-defensively. We were a bit concerned it might be an issue once she started school, but it doesn't seem to be. It's her "thing", she knows other people aren't the same, but she really doesn't seem to give it a second thought. She is confident about it, and I hope my way of dealing with other people has helped her with it.

madwomanintheattic Tue 15-Nov-11 23:02:25

she's just 3, so you need to make it really 'normal'. no weeping or wailing or hushed tones. it's just hair, and like lingle says, you just need an age- appropriate explanation, and to minimise the stress for both of you. i'm pretty certain that nursery will handle it fine - there's lots of work on 'difference' all the way through to yr 1, and tbh it's not really something that will worry her peers - they might ask why, but they'll be satisfied with the same age-appropriate explanation.

dd2 has cp, and is 8 now. she walks like a drunk and drools a bit, and falls a lot. and went through a stage where she wanted to know the ins and outs of why she was different. so she knows that her brain was poorly when she was born and there was a bit damaged that affects her muscle control. but she also knows that this doesn't diminish her in any way within her peer group. i don't doubt we'll have ups and downs on the way through, but i would say at this point that the way you treat the hair loss will affect how dd reacts to it. and the nursery staff, and her peers.

as others have said, i would cut it reasonably short, and have lots of fun hats, scarves etc around if she wants to wear them. and try not to make a big deal out of it. at 3 she shouldn't be worrying about what her hair looks like, she should be in her wellies stamping in the puddles and having fun with her friends. grin

madwomanintheattic Tue 15-Nov-11 23:04:08

i should also say - dd2's interest in her own difference waxes and wanes. so if she has a particularly bad day and i start to think about calling the child psychologist, she often wakes up the next day and ignores the fact she has cp for weeks. grin

lingle Wed 16-Nov-11 10:25:46

hi, no, I've no tips to offer I'm afraid. The trichologist thinsk mine is an oestrogen imbalance so totally irrelevant to a pre-pubescent child.

I suspect the key to this is holding on to that thought you wrote down: "I guess there are many conditions in childhood which are going to impact on their lives in one way or another." Not always easy to do that though is it?

UrsulaBuffay Wed 16-Nov-11 11:05:13

Hi

I'm sorry your little girl is so upset by this, I have a dd almost the same age and I had alopecia areata myself at the age of 25. I lost two palm sized patches of hair and I was extremely depressed and worries by it.

I was referred to a dermatologist who prescribed dermovate in lotion and cream form which I applied twice daily, the lotion was smellier. It did work though I was also given thyroxine for an underactive thyroid around the same time and left a stressful job. Stress almost certainly had an impact on my loss.

I regained all the hair I had lost though I have much thinner hair than before.

I suppose all I can say is that it can grow back, it isn't necessarily permanent although it could be. There are online support groups and charities although I found most people involved obviously were those who had very extreme and long term loss so it could be quite scary.

I don't think you should brush it under the carpet or say it is just hair. It really isn't, it's very very difficult to explain how considering a life as a bald female is not 'just hair' but it's so much more. I'd tell her at this stage that it happens sometimes and the Doctor will help her and you can get special cream and it will come back. Kids can't really think long term so I don't think she'll think you lied if it doesn't return.

Anyway,

please ask to be referred to a dermatologist & I hope everything works out well.

alopeciamum Wed 16-Nov-11 22:13:49

Thank you all for your kind messages. It has really helped to get some perspective. Today has been better and passed by without mention of hair loss after all the tears yesterday.

Nursery are helping out by putting me in touch with some health/support workers who may offer advice. They are also trying to source reading material for me/her.

Also I contacted someone from alopecia uk and am hoping to meet up with her next week.

A friend of a consultant paediatrician has been in touch saying the believe it is rare in such a young child and suggested contacting Alderhey in Liverpool to seek an appointment with someone more specialised.

Slightly calmer tonight.

Jellycat1971 Mon 12-Jan-15 15:45:08

Hi

I was sorry to read of your daughters' condition. My son has started rapidly losing his hair and I suspect it is alopecia areata. I wondered if you could tell me what happened with your daughter's hair - what treatments did you use and did it grow back? I am very anxious, but realistic that this may be a long term problem. Any advice would be much appreciated.

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