Hi Renee. I saw in one of your comments you mentioned that you were using Rogaine on your son. how long did you use it for? I also saw that you mentioned that resulted in some unwanted hair growth. Did it go away eventually? I have a daughter, 10 yo, and we've been using menoxidil on her. I'm starting to see some growth down the nape of her neck but not much on top where we want it! I'm thinking to stop the treatment and am wondering what your experience has been.
I am brand new to this site, and was very happy to get my first friend request from you! I have a son with alopecia universalis. His name is Austin and he will be four in February. He has an identical twin brother named Kyle, who has no form of alopecia at all. Austin's hair loss started much the way you described your sons. We took him for his first haircut when he was a year old and afterward, noticed a small bald spot, but like you, we assumed it was just from the clippers. He began to lose his hair soon after that, and within about 2 weeks was completely bald, including eyelashes and eyebrows. It is s VERY scary and uncertain thing to see this happen to your baby. I will say though that it gets easier with time. At first I felt like everywhere we went people were staring and I would get very upset and want to protect him from peoples stares and judgement. Now, almost three years later it seems so much more normal. There are full days that I don't even remember he has no hair, because it is just him. We have always been very open with im about it. Luckily he has not gotten teased yet, but he has been going to the same preschool since he was two and a half so the kids just know him this way. I am scared that when he begins kindergarten in a few years with new kids it may be a hard time for us all.
I see you live in Denton. We are right down the road from you in Saginaw. I would love to be able to get the kids together sometime and play. It would be so neat for the two of them to see someone who is also bald and under the age of 80! haha
Have a wonderful day, and hang in there. It is ok to be sad and mad about this situation, but always remember how lucky we are as well to have amazing, healthy, beautiful children! : )
Hi Renee, thanks for adding me! You have such a beautiful kid! :)
At 8:43am on September 29, 2011, MAT´S MOTHER said…
Good morning Renee, how are you an litlle Elliot doing? He is so beautiful, whith this two drops of ocean in his eyes.
Renee,its the first time in almost 2 years that i can share my feelings whith someone that truly understand me.My husband and family ,try not to talk about, and when it happens, say that its emocional because of school,and that will pass soon.But i know its not true. At this point Mathew is getting tired from cortisone shots, its not working at all. Iam trying very smooth to make him understand that will never have his lashes, brows or hair like before. But he is healthy, and thats what matter.Thanks for your support.Hugs, and have you both a nice day.
At 6:46pm on September 28, 2011, MAT´S MOTHER said…
Hello Renee,i just find out about ALOPECIA WORLD,and looking the profiles i find your case, and as a mother of a 17 years-old son i decide to share my experience whith y.June 2010 his eyelashes start to fall, and first we thougth was an eye problem,or my be allergy.But no, not this time, we visit lots of eye doctors, whith no diagnose. Time past , lots of eye drops but not a lash back. after almost 4 months one of the doctors diagnosed him whith Alopecia. We start to try a dermatologist, i think the best in Alopecia in Brazil.He decide to give him cortisone shots, one a month. He had 5 alheady, but nothig happen.I start my lonely researche alopecia , but not one case of alopecia only on lahes or brows.
When you say the way you feel, i agree, and share, because it hearts so much on me. He still have his hair, but now even whith the shots ,litlle spots shows on the eyebrows and faceburns. The more i ead , worst it is , because i can find an real answer and solution to his case. Elliot., is a beautiful boy, and as it start so early my be y can find the best way to control it.
Hugs to you both,
Claudia
Hey Renee, Sorry it took me forever to get back to you. We've been busy with T-ball & school events & the like. We are doing good. Sam had to shave off the Mohawk, just couldn't keep it. But he handled it well. I was up there for lunch on the first day & a kid from another class announced Sam, you're bald headed. He just casually replied, Yeah I know & went back to talking to his friend. We've always tried not to make too big of a deal about it & that really seems to be how he is trying to act as well. How is Elliott doing? Hope all is well with you & yours. klv
Hey Renee, I didn't realize you were in Denton; I'm in Keller. If you ever want to get coffee & chat in person, let me know. My sis goes to UNT so I'm up there often.
Renee, I think you are right about keeping him off the steriods. Good luck with it...you know, alopecia is unpredictable and it could grow back at any time, or not. There's no rhyme or reason. But the good news is that scientists have isolated the genes responsible, and hopefully within the next ten years we will see a cure.
Hugs to you both.
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Renee (Elliott's Mommy)'s Comments
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New pics are cute. We are trying to get together a alopecia play date with other kiddos. Are you guys interested?
Thanks. Elliott is a cutie as well. Jackson saw his picture and said "Is that me?" Kids are too cute sometimes!
Oh, and I love the new pictures too! He is such a cutie and he reminds me so much of Austin with that sweet little bald head!
I am brand new to this site, and was very happy to get my first friend request from you! I have a son with alopecia universalis. His name is Austin and he will be four in February. He has an identical twin brother named Kyle, who has no form of alopecia at all. Austin's hair loss started much the way you described your sons. We took him for his first haircut when he was a year old and afterward, noticed a small bald spot, but like you, we assumed it was just from the clippers. He began to lose his hair soon after that, and within about 2 weeks was completely bald, including eyelashes and eyebrows. It is s VERY scary and uncertain thing to see this happen to your baby. I will say though that it gets easier with time. At first I felt like everywhere we went people were staring and I would get very upset and want to protect him from peoples stares and judgement. Now, almost three years later it seems so much more normal. There are full days that I don't even remember he has no hair, because it is just him. We have always been very open with im about it. Luckily he has not gotten teased yet, but he has been going to the same preschool since he was two and a half so the kids just know him this way. I am scared that when he begins kindergarten in a few years with new kids it may be a hard time for us all.
I see you live in Denton. We are right down the road from you in Saginaw. I would love to be able to get the kids together sometime and play. It would be so neat for the two of them to see someone who is also bald and under the age of 80! haha
Have a wonderful day, and hang in there. It is ok to be sad and mad about this situation, but always remember how lucky we are as well to have amazing, healthy, beautiful children! : )
Hugs, Claudia
Renee,its the first time in almost 2 years that i can share my feelings whith someone that truly understand me.My husband and family ,try not to talk about, and when it happens, say that its emocional because of school,and that will pass soon.But i know its not true. At this point Mathew is getting tired from cortisone shots, its not working at all. Iam trying very smooth to make him understand that will never have his lashes, brows or hair like before. But he is healthy, and thats what matter.Thanks for your support.Hugs, and have you both a nice day.
When you say the way you feel, i agree, and share, because it hearts so much on me. He still have his hair, but now even whith the shots ,litlle spots shows on the eyebrows and faceburns. The more i ead , worst it is , because i can find an real answer and solution to his case. Elliot., is a beautiful boy, and as it start so early my be y can find the best way to control it.
Hugs to you both,
Claudia
Hugs to you both.
How are you and your little boy today?
Leslie Ann
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Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.