Alopecia World
www.alopeciaworld.com
I'm new to all of this
im new to all of this, and i really need some support emotionally! my daughter is going thru this, at first i was really strong but since more and more of her hair is going, i find myself loosing strength, is this normal?
Replies to This Discussion
-
Permalink Reply by Laura on
-
Hello, I am exactly the same, my daughter is 3 and the patch she has at the moment is the first, but the unpredictability of alopecia makes it very hard as a parent as all you want to do is protect your children from everything, and make it better! I find myself constantly looking at her hair and think it is thinning, when deep down I know i can do nothing to save it if more does fall out.
-
-
I know I am trying to be positive but cannot stop crying and thinking the worst
-
-
Hi guys. I totally sympathize. My daughter is 9. She had her first bout of hair loss when she was 7. It had finally all grown back last fall and then it started falling out again. Right now she's completely bald. Its REALLY hard! At first I was devastated but I'm getting used to it. I try to focus on the fact that she's a beautiful and terrific kid with or without hair and that in the big picture of bad things that could happen to your kid, this is not the worst by far. I figure the more positive I am, the easier it will be for her. Its a lot easier to say than do sometimes though.
-
Permalink Reply by Allison Miller on
-
Hello,
So I just found out that I had this...but I had it all my life not knowing. My hair all fell out when I was five years old and then grew back. I still remember how I felt without my hair. It was really hard. Gretchen, I get what you are saying about staying more posotive, trust me it does help! It sounds like you are doing everything you can for your little girl. My grandmother raised me and I never thought about how hard it was for her to see me that way. I was totally bald too. Also know though, from my experience sometimes it feels even better for the kid to know that it is okay to feel bad sometimes, not to dwell on it but know that you can be upset. My grandma always seemed so happy and acted as if it was no big deal so I felt like I could never tell her how I really felt. Your daughter will appriciate knowing that you are genuine with her, do not be so worried for her to see you hurting. The best thing my grandma ever did was finally cry with me about it. It gave me closure. I was able to understand I was going through something and I was able to feel that way, and that it made me a stronger person and that I was even special. It was no secret I was differnt.
I never realized what it may have felt like fore her to be going through that. Your girl is really going to appricate your being supportive of her. I am so grateful to my grandmother!! Oh...and she will be okay. I am fine. That happened to me when I was little, and it is happening again. Yeah sometimes it is hard, but it makes all the differnce to know I am surrounded by people who love me.
-
-
Allison, its really nice to hear you say our kids will be OK! To me, thats the hardest part--worrying what's coming down the road for my daughter as she gets a little older. Thanks for pointing out that some balance is good in dealing with this. I try to let her know that its OK to be unhappy about it and to talk about it. Hard to know exactly what to do though! I really am so scared for when she gets older and has to change schools and deal with new kids and new situations. Kids can be mean sometimes!
-
-
Boy, the "falling out" part is the WORST. I don't know why its so hard--maybe because you just see it happening and you can't stop it. My daughter is old enough to comb her own hair and sometimes I would see her comb it and then she'd look at all the hair in the comb. The expression on her face was so bummed--gosh I thought my heart would break! Its even harder because she just loves hair in general, ever since she was little. She loved to put it up in all kinds of crazy ways and wear barrettes. It is a little easier now that its all gone.
I saw a thread I think in the parents group by a woman whose daughter had just started kindergarten. I think there's lots of stuff you can do to help and protect your daughter when the time comes. For me I've found that the best strategy seems to be to focus on right now and try not to worry too much about what might be coming. It gets too overwhelming, and there's not much we can do about the future except to make sure our kids know how much we love them and how wonderful they are.
Kristen, you did not do anything bad!!!!!!!! Look at all the wonderful people here with alopecia--none of them did anything bad, you know? Hard not to think that way sometimes though--keep reminding yourself its not true! Is that your daughter in your avatar, BTW? She's beautiful! I have to get a good picture of Aidan. I'll let her choose--hat or bald :-)
ITA--its really good to have other people to talk to about this. It helps a lot.
-
-
I think the important thing for a young girl is to know that she is beautiful no matter what. Something I like to do even now is look at pictures of celebraties like Natalie Portman when they shaved thier heads. She looks beautiful and compleatly unafraid to walk down the read carpet bald, she does it in style. Kids can be mean. When I was five, I was made fun of by boys. I will not lie and say that I did not. Honestly though I think it was because I had not been prepared to handle it. I never had a wig and I just wore big bows on my head, I was always exposed. I saw a video of a little girl with it who told her whole class about it, even went around spreading awarness and it really empowered her.
It all depends on the kids personality too though. I think it is a really good sign that she is talking about differnt wigs. Why Not? I mean really how cool would it be for a kid to be able to choose a different hair cut every day, have total fun with it! Wear cool scarfs, pretty hats. Other kids may even be jelous. I am sure your little girl is absolutly beautiful Kristen, Gretchen you too! As a girl it makes all the differnce to know that you are gorgous and that while not having hair can suck, it can also be really cool depending on how you look at it. There will be good days and bad days, but your little girls are going to come out on the other end much stronger than most kids. They will also be very grounded, and not materialistic and non judgemental.
-
Permalink Reply by Jen J. on
-
Hi Kristen,
I don't know what it's like to HAVE a child with alopecia but I do know what it's like to BE a child with alopecia. I had my first patch at age 9 and I still remember my mom telling me time and time again how she wished it was her and not me, as I'm sure you are doing right now. As parents all we want to do is take away our child's pain and suffering, even if it means going through it ourselves instead. As a person who has literally grown up with AA, AT, and AU the best advice I can give you is to do all that you can to help make your daughter a confident person who is accepting of the disease, instead of insecure about it. Help her to realize that it won't stop her from doing ANYTHING that a person with hair can do. Tell her that it's what makes her special rather than what makes her abnormal or different. And most of all, help her to be open and accepting of it now because, trust me, it's much healthier than trying to hide from it her whole life. I am 36 years old now and, sadly, I've spent most of my life trying to hide my bald spots and, when it came time for a wig, trying to hide the fact that I wore one. I remember being in middle school and knowing that all of my friends knew I wore a wig but I still didn't want to talk about it or admit it. I am just now starting to be open about it with friends and people I know. And to my surprise, it was much easier than I thought it would be to talk about. Not one single person judged me or thought any less of me. I didn't lead an unhappy life by any means but I truly believe that if I was a bit more open and accepting about my AA when I was younger it would have been that much happier. So, in a nutshell, just try to look at it as something that makes your daughter special and makes her stand out from the crowd, not something debilitating. Everyone has hair...she gets to be the unique little girl who doesn't have any but doesn't need any because her beauty will radiate from within. Unfortunately, there will probably be some ridicule along the way because kids can be mean but as long as she has the self-confidence, through you, to just laugh it off, it's all you can ask for. Trust me...she's going to grow up a stronger person because of her alopecia. I can finally say now that I am a better person because of it. It took me a long time to get here but here I am... :)
-
Permalink Reply by Gale Moorman on
-
Hi, I know exactly how you feel. Going to a doctor is the first thing. At 10 I went to a general doctor and he gave me B-12 shots which made the hair come back for a while and the lost subsided. Years later after the spots soon coming and going I went to a dermatologist. Tests will be made for nutritional purposes as well as biological thyroid malfunctions. Your first step before panicking is to see a dermatologist. The 2nd step is to go to a support group to stay strong emotionally and to hear other people's bouts with Alopecia. This may give you more insight into what route to go next after the dermatologist. Where do you live? NYC? Another state in the US? You need to seek out dermatologist and a support group and go to them in conjunction with each other.
-
-
Hi. Being that you have seen a derm and used some treatment methods (of which she hasn't responded to any of them), attending a support group most likely would be the answer in being with other people with the same situation and hearing what other treatment plans (if any different from yours) they have used whether it helped or not. By uniting we may get to the core of what works and definitely what doesn't to see some clear cut result in curing alopecia.
-
Permalink Reply by Jen Deletto on
-
have you looked into The Children's Alopecia Project? They are wonderful for the children and also for the parents! I have found a lot of comfort with CAP for myself as well as my 5 year old daughter. This summer we are attending their 3 day camp! Our whole family is very excited!
© 2024 Created by Alopecia World.
Powered by
