Alopecia World
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Just diagnosed
My hairdresser, who also cuts my five year old daughter's hair, found a dime size completely bald spot on August 7, 2010. This original spot has not changed at all since then, but on this past Friday I found two more. I took her to see her pediatrician yesterday and he confirmed the diagnosis. He basically told me that I must have patience as the hair could take a year to grow back or worst case scenario she could loose all hair including eyelashes and eyebrows. I was fully aware of this since this site was part of my research on Friday night after panickin there were more spots. I was so upset at first, but this site was so uplifting. It was great to see all of the stories and blogs of different circumstances and phases of Alopecia. It helps knowing there is group I can turn to no matter what direction this takes us!
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Comment by Diana Carter on October 13, 2010 at 1:52am
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Oh, man! I am so sorry! I am new to this site, as of a week ago, and also newly diagnosed..but wow..it would be harder for it to be my child. YOU hang in there. This IS the greatest site for support, and you will find other moms just like yourself on here. God bless you, and your little angel. Hugs!!
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Comment by Sarah Eisenhardt on October 13, 2010 at 6:09am
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I know how you feel I found my sons after my husband gave him a haircut and I thought for a long time that he must have got to close with the clippers. what state do you live in? I would also see a pediatric dermatologist. and join the Children's Alopecia Project they can offer support in ways that will touch your heart! Take care and keep us updated
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Comment by Kirsten Phifer on October 13, 2010 at 12:58pm
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Thank you Diana! It is not easy to think there is any possiblity of my daughter losing her hair. There has always been something special about her personality that I can't quite put into words so if that's the case I know she'll be strong and embrace it. My only fear is the teasing from other children. Thank you too Sarah! I live in Florida and was given two referrals of dermatologists, but not sure they are pediatric. I will look into Children's Alopecia Project...thanks for the info. How long ago was your son diagnosed?
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Caden is now 5 and just started kindergarten it has been 3 years now he sees a regulat dermatologist and a pediatric dermatologist specialist. Caden has had up to 90% hair loss and 1 missing eyebrow but with treatment right now he has only 1 spot about the size of a nickle. So I am not yet ready to stop treatment with him yet. that is a very touchy subject with many it's sad that we have no right or wrong way to do thing just be as supportive as we can. The Children's Alopecia project can offer so much, help with school letters and information, a penpal program for when your daughter is old enough to be interested, they can help provide your with a komfy kid doll that actually comes with a wig but the point is that the doll is still the same with or without hair, they can even provide your daughters school with several books about alopecia donated in your daughters name the books are good for kindergarten and up! I hope this is helpful and I wish you and your daughter the best of luck.
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This is very helpful! Kahlen is also five and just started kindergarten. So the treatment he is on has given him regrowth of that 90%? I was told at this point it was kind of a waiting game unless I find further loss of hair. I have also heard that treatments like steroid injections and Rogaine help with regrowth, but they hair falls back out.
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Comment by Dominique Cleopatra on October 14, 2010 at 2:09am
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What treatment gave 90 percent regrowth?
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We have never given steroid injections, we have used dermajet at every single dermatologist appointment and that is a pretty old fashion method I guess but for us it has proven itself so far here is a website link
http://www.newcastle-hospitals.org.uk/services/dermatology_treatmen...
I am going to take pictures of my sons hair this morning and post them and I will post photos of his hair from December of 2009 so you can see the growth he has had. Now this has never been permanent and we have to continue treatment on the bald spots even after growth around them begins we continue meds. we also use topical corticosteroids. I have not met anybody yet that has used dermajet, I would love if somebody else has a story to share about that, oh I should also add that we only get the dermajet at the regular derm, not our ped specialist we only see him every three months to see that his treatment is going well and Caden is not showing any negative side effects. I have a lot of children to send off to school so I will post the pics on my profile by late morning and if you have any more questions I will be happy to answer. but please remember I am not his doctor and I can't tell you that the dermajet is what is working for him it might be the meds it might be his own body, I still worry that Caden may have universalis one day and I worry if I am making the right choices by using meds. I am a normal parent who has to make big choices like the rest of the world. I just hope I make the right ones for him! Remember like I said this has never been permanent for Caden. Please see the pics and ask any questions you want.
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Well we don't get cortisone injections never have and that will be up to Caden when he is older if he does. You sound kind of offended in your post. Please know that I said I do NOT know what causes his hair to grow back and it is not as simple as 3 years period, Caden has had 100% regrowth multiple times this last time is the longest that he has had all of his hair but now, we have a new "spot" that is about the size of a nickel. However Caden has lived a life that is complicated to explain and I have NEVER met another child or adult with alopecia who has had to experience the hardships in life that Caden has experienced in his short 5 years. I have not had a choice in treating his AA at some points I just had to do whatever was recommended and he went about 5 months with no treatment at all at that point he only had 1 very very small spot but with no treatment in 5 months he went from 1 small spot to almost 100% bald as soon as he started being treated again his hair started growing back within 2 weeks. So in my experience with him and his treatment it has proven to work. Now he may just respond well to treatment just like every single medication known to man some people respond very well some people have side effects some have no response. For my son... so far it works so why would I stop when he stopped before he lost it! My point is simple right now he has a lot of hair dermajet is an older treatment plan and as of right now today it seems to work to help his hair grow but I never know what tomorrow will hold it may all fall out but I need to be prepared to help my child cope with whatever his fate may be. Ok one more thing is that most of the meds side effects are hair growth so I don't agree 100% that they don't make hair grow and the injections are supposed to (I say that loosly because I never tried them) aid in stoping the hair from falling out more ant to grow it or ANYTHING else just so a spot won't get larger. Dom, I think you and I could have a good lond conversation about this... I am very happy to know that your hair will grow back on it's own my neighbor has had the same exact fist size spot on her head for YEARS and never 1 sign of even 1 single new hair!
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p.s. my pics are up! and please feel free to leave my little boy a nice comforting comment he really enjoys them! That's why I am here for him! Take Care
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I agree it's not easy as a parent to know what is the best decision. We just have to follow our guts and our hearts as we want what's best for our children. I have heard that all treatment options work differently for everyone and by reading these comments that seems to be very true.
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