Alopecia World
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Hi, new here, not even an official diagnosis yet
My 8 year old son started out with a quarter-sized bald spot on the left side of the back of his head the last week of September '08. 3 years ago he had one similar but only the size of a dime and it was soon covered with surrounding hair and it filled in sometime (we didn't really notice when as he was growing his hair out from a crew cut). This time however, within a week he had lost large patches on the back of his head on both sides, somewhat asymmetrical. We took him to his primary Dr. and had blood tests run which returned with no abnormalities. We are now waiting 3+ weeks for an appointment with a pediatric dermatologist at Phoenix Children's Hospital for an official diagnosis. He continued to lose hair and by the 12th of October 70% of his hair was gone. Now, (21 October) 90-95% of his hair gone and the remaining hair appears platinum blond. I guess this is either aa or telegen effluvium? Does anyone know if this type/speed of loss is indicative of one or the other? I'm kinda going nuts having to wait so long for the derm appt.
He's taking it really well, we let his teacher know and he wears a baseball cap to school. He has other issues (he was born with a tethered spinal cord which caused reduced nerve function in his bowel/bladder and left leg) that may have already helped him realize that being different doesn't make a difference in who he is. whew kind of nice to write that all out. Thanks for being here.
He's taking it really well, we let his teacher know and he wears a baseball cap to school. He has other issues (he was born with a tethered spinal cord which caused reduced nerve function in his bowel/bladder and left leg) that may have already helped him realize that being different doesn't make a difference in who he is. whew kind of nice to write that all out. Thanks for being here.
Replies to This Discussion
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Permalink Reply by Margie on
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Hi There, My 9 year old son lost about 75% on his hair this last summer (in a couple of months) and he was dianosis with aa. It can go either very slowly or very quickly as this is one of the things that has it's own mind and likes to surprise us all (for better or worse). We had resigned ourselves to the fact that we would need to shave his head a couple of weeks ago. A couple of days before the big "shave day" we found regrowth. It came out of nowhere (well actually out of his head LOL ). In the last couple of weeks he has regrowth covering almost all areas. We know it might fall out again but are happy with the reprieve, regardless of how long it lasts.
Keep in touch with those on this site as without my finding all of these wonderful people with all their supportive information I think I would have lost it :)
You and your son are in my thoughts and prayers.
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Permalink Reply by gymtee on
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Hi Margie, Thanks for your support and sharing. My son told me today how he told one of his friends what's happening to his hair, having a 9 year old boy you can probably relate. He said that it's like in Star Wars, during the clone wars and there are T-cells, like droids, that are attacking his follicles, who would be the clones of the analogy, causing the hair loss. Seems like he's taking it better than I am, which allows me to take it better, too. All the best to you and your family.
jimt
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Permalink Reply by Rhoda on
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Gymtee, Sir. I am guessing you seldom go (or probably stopped going) to this site anymore.
It was very clever of Goose how he described to his friend what was happening to him. I love Star Wars. :)
I hope he, and all of you are doing well. God bless you. :)
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Permalink Reply by theantichick (Shannon's Mom) on
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My 11 year old daughter started with quarter-sized spots (3 of them) right before school started in August this year, and at this point she's got about 70% hair loss. We also had to wait over a month to get in to the dermatologist, but we still don't have a diagnosis. I'm giving the derm one more appointment (1st week in November) to get his act together. He's theorizing anything BUT AA, because he says AA doesn't start with a huge fall-out, contrary to EVERY bit of evidence I've found online and in my research. He's saying either telogen effluvium (which is usually caused by some sort of physical trauma - a serious illness, high fever, surgery, etc; or a huge emotional trauma like a loss of a parent) or trictotillomania (which doesn't fit because she's got a positive pull test). So we're STILL playing the waiting game.
Good luck with all of this, I can tell you this has been a GREAT community with the friendliest and most supportive people!!
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Hi There. Our Primary care doc had given the telogen effluvium code on the sheet when he ordered the blood tests, but wouldn't give us a diagnosis one way or the other. Since Goose (our son's nickname) had the quarter size patch a few years ago and that's how it started this time I'm pretty convinced it's AA, but that's not my profession. The TE diagnosis does have a small percentage, I suppose, as in the last 3 months he's been having what he calls 'electric shock' sensations in his leg that has reduced nerve function from his tethered spinal cord condition. It's possible that this was received by the brain as trauma and caused TE, but it was summer time and the first month of school, and like you, we know there were no traumatic events.
I found a rather technical document on AA that is rather comprehensive, if you haven't seen it already:
http://www.emedicine.com/derm/fulltopic/topic14.htm
Good luck to you as well and thanks for your reply. I feel like I'm a little bit better each time I read and reply here.
jimt
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Hi tamgirl,
I'm very happy to have found this site and receive replies from nice people like you that have gone through this and are willing to share with others. It must have been hard for you and your parents when you were young as there wasn't this wonderful world wide web to scour for information! Thanks so much for your support. Take care.
jimt
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Permalink Reply by Kathleen Smith on
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I think you may find that sometimes the doctors can never figure out why alopecia starts. All my life I had quarter size spots that would come and go. 3 years ago I lost about 75% of my hair within a month. After going from doctor to doctor and trying everything they suggested I decided to go to a naturopathic doctor (that was about a year ago). Today I am finally going wig-free!!!! The area that has regrown first came in white and very thin, (much like baby hair) but is now starting to fill in and change color. It seems like all the steroid injections didn't help because it just kept falling out. Plus they are painful. I almost think that it's a cycle and the best way to control it is to stop inflammation in your body and make sure you get all your vitamins. Keep seeing your doctor, but read all you can on alopecia. Hope it helps.
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Hi Kathleen,
Congratulations on going wig free! I think the world needs to continue to learn to accept (and eventually not even notice) differences in peoples' appearances whether it be smooth/hairy, race, etc. I've read elsewhere on here about the pain of the steroid injections vs. the benefits and I'm not sure we would take our little Goose down that path. Thanks to you and others like you sharing your experiences, we are more informed about everything than we could be without you. Best wishes.
jimt
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Permalink Reply by Gina on
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Hi,
My alopecia didn't really "show up" until I was 30, so I'm not sure how I would have taken this as a kid. But I'm a mom, so i have an idea of how you feel about this and it's good you found this site to at least vent.
While reading your post, something my son said last night came to my mind. He is 9 years old and complained about him having too much hair on his arms ( he doesn't have much by the way). My jaw dropped and I said "honey, I have no hair at all, remember?" and he said: "I know, I wish I could be like you, it would be easier for me cause I'm a boy...I could wear a baseball cap and that'd be ok, I really don't like all this hair on my arms and legs".
So, I guess kids take this kinda things better than we adults do.
With your support, your son will be fine. All the best to you and your family :-)
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Hi Gina,
Thanks for the post. As a male it might be easier for him if he were an adult as it's more socially seen to have a shaved head today than it was when I was a kid. When I was in high school, punk friends of mine were labeled as hate filled skinheads on sight when they were nothing of the kind. From what I've read here, it's still much harder for women, so here's to you. Thanks for sharing and helping others. And remember there are people that know you are not your hair. Best wishes to you and your family.
jimt
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Permalink Reply by rach on
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hi there,
you will meet lots of nice people here ,and it is nice to talk to someone who understands what you are going through, my son is four , and has alopecia ,he too started with patches and while waiting for hie dermitoligist appointment which was also 3 months or so lost it all, that was 12 months ago and he is still totally bald , he did have a small patch of regrowth for a couple of months and then lost it again he has lost his eyebrows twice and his eyelashes once.
dr dont know the cause , and I have avoided treatment due to his age as I dont want him to go through any pain, dr 's have told us he has less than 5% chance of getting his hair back , but he too like your little boy is very positive ,always telling me everythings going to be ok,they are amazing kids, hope to see you on here again
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