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Permalink Reply by BaldGirlsDoLunch.org on May 7, 2009 at 12:35pm

Hi Paul...It's a difficult time right now...but it will be easier as you get more info. There is a parents group here on AW . Many cases just go away with no treatment at all: in fact 80% are that way. The waiting is the hardest part and the not knowing in the beginning is stressful.

Contact Betsy at the Children's alopecia Project today. She is co-founder and has a daughter with aa. Other co-founder is her husband Jeff, who has like you the experience of being the dad of a daughter with aa.
childrensalopeciaproject.org
CAP4U@verizon.net

She will help you right away with info on adjusting and and provide insight and materials...there is a lot that can help via phone, email and info here on AW.

Thea
baldgirlsdolunch.org

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Permalink Reply by Erica on May 7, 2009 at 12:53pm

Hi Paul,

Welcome to the community - I'm sure you'll find lots of help on here. Folks are fantastic and if your daughter does have alopecia, the people who are here should provide you with a lot of inspiration so that you are no longer breaking down at the thought of dealing with the condition.

When I was in the process of being diagnosed, I had my bloods done numerous times. It is normally to rule out things like thyroid problems or iron deficiencies. Apparently some people have a biopsy done on their scalp but this is considered painful and often unnecessary to complete a diagnosis. I have alopecia areata but I developed it in my teens so a little later than your daughter. The way it was described to me by a consultant, who I have a lot of faith in, is that it is like some of your daughter's hair follicles have gone to 'sleep'. This happens on everyone's heads but for some reason for us with AA, AU or AT it happens in patches, or all over our head or all over our body. It is considered an auto-immune disease/disorder because the body is essentially attacking itself. My consultant reassured me that nothing I was doing to my scalp, hair or body would be causing the AA, it's just something that my body has decided to do. His advice was not to engage in steriod injections or apply topical creams because they have not been proven to have any lasting effect and may cause unpleasant, if not painful side effects. This may be different because of the age that your daughter has developed hairloss but I would recommend that you seriously research side effects of any treatment and the chances of success of such treatment before embarking on a course of action with your daughter, if you find a doctor that recommends such a thing. Children are resilient but sometimes it can be better to exert your time and energy towards helping your daughter deal with living with alopecia and enjoying life either in spite of it or because of it, rather than seeking a cure because at the moment one does not exist. This may seem tough but it may also reassure you that your doctor isn't being negligent in not prescribing a course of treatment straight away nor in giving your daughter's blood tests any more priority than those of other patients who are being routinely tested.

There are quite a few people from Canada on this site so I'm sure someone will be able to help out with what might be available in Saskatchewan. Please remember though that if your daughter does have alopecia in whatever form (the term alopecia itself isn't a diagnosis as the word simply means hairloss), then she is still in all probability perfectly healthy. You'll see from many of the inspirational girls and boys and adults who developed alopecia as children on this site that if you are strong and keep your chin up, alopecia is just one of those things that makes us different from other folks and often in a good way. There will be bad days but I like having something a little unusual about myself as long as I can handle it on my own terms, showing my scalp off when I want and wearing my wigs when I want.

I wish you and your family all the best. I'm sure your daughter will at times, find this less stressful than you will, so please try not to pass your worries and concerns on to her. I should tell you now that my Mum found my first bald spot as a teenager and as a hairdresser she recognised what it was and opted not to tell me about it until I noticed it myself. I didn't notice any hairloss for two years after my Mum saw my first spot and I'm grateful now that I didn't need to confront it as a 15 year old but a 17 year old by which time I was a little more comfortable in my skin. Sometimes, we don't always need to know.

Good luck in finding help. Things will get easier.

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Permalink Reply by Jennifer Krahn on May 7, 2009 at 4:52pm

Hi Paul,
I'm from Winnipeg and was just diagnosed this past February. I understand all of the panic, hurt, fear, anxiety you are feeling. Hang in there. Your little girl will be okay. I am always a quick phone call away. The doctor's in Wpg haven't done much for me here. i finished having the steroid injections but they seemed to accelerate the aa. Blood work will not diagnose the aa, the doctors do it by sight and you can ask for a biopsy of the hair follicle for further analysis. All I can tell you is love your daughter and talk about the aa. One of my biggest relievers is telling my friends and family...when I was ready...about the aa. If it doesn't progress further than no worries. it takes (from what I've been told) a few months to a year or so for hair to regrow if that is what it chooses to do. Instilling self-confidence in your little one is the best advice I can give you. hang in there...

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Permalink Reply by Rose Marie' on May 11, 2009 at 8:24am

Hi Paul

I can't really add to the wonderful things already said. I just want to say you aren't alone with this and if I can ever be of any help please feel free to pop in and leave me a message.

My daughter lost her hair at 12 and is now 18. She is living a wonderful live and deals with this well. I just want to try and reassure you that no matter what happens you are all going to be ok.

Take care

Rosy

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