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what to tell them?
hello everyone,
my son lucas is four and has alopecia he hasnt had any hair for over a year now, lost his eyelashes and eybrows which came back earlier this year, but in the last couple of weeks his eyebrows have started to get patchy again,
he usually isnt to bothered with the fact that he has lost his hair lately though he has been asking the heartbreaking questions we hate to hear, like why is my hair all gone mummy, when is it coming back, why havent i git hair like daddy and darien,it really sux when all you can say to him is you know what sweetie i dont know when your hair will come back,
the best way i have heard of to explain to children as young as him is to say you are alergic to hair and thats how we have explained to him.
it just breaks my heart to just be so helpless ,unable to help my child, i dont want him to have treatments that will cause him pain or possible bad side effects, i dont know ethier if it has some kind of connection with the alopecia but my son is also fairly hyper , he dosnt stay still for a second , does anyone also have this with thier child, i love my son so much and hate to see him suffer what do we do ?
my son lucas is four and has alopecia he hasnt had any hair for over a year now, lost his eyelashes and eybrows which came back earlier this year, but in the last couple of weeks his eyebrows have started to get patchy again,
he usually isnt to bothered with the fact that he has lost his hair lately though he has been asking the heartbreaking questions we hate to hear, like why is my hair all gone mummy, when is it coming back, why havent i git hair like daddy and darien,it really sux when all you can say to him is you know what sweetie i dont know when your hair will come back,
the best way i have heard of to explain to children as young as him is to say you are alergic to hair and thats how we have explained to him.
it just breaks my heart to just be so helpless ,unable to help my child, i dont want him to have treatments that will cause him pain or possible bad side effects, i dont know ethier if it has some kind of connection with the alopecia but my son is also fairly hyper , he dosnt stay still for a second , does anyone also have this with thier child, i love my son so much and hate to see him suffer what do we do ?
Replies to This Discussion
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Permalink Reply by rach on
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we do tell him and reassure him that is okay to be different, I have bought story books on alopecia , showing peoples differances which have been good for him, I always tell him that he is a gorgeous person inside and out which he is ,hes my hero.
as for seeing other children with alopecia I am pretty sure there are no other children in our area suffering from this, but he has seen photographs of kids with alopecia on the internet,his daddy also regularly shaves his head , and tells him its because he wants to be just like him,
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Permalink Reply by Rose Marie' on
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Hi
My daughter was a little older than your wee fellow when she was diagnosed so it was of course slightly different for us.
I also found it heartbreaking that I couldn't seem to help at the beginning. Then I realised that I was helping by being proactive and helping her find solutions to her worries about this condition. As a parent I think that's what helps the most - guiding them to be the best people they could ever be. Listening to their needs. Just take it one step at a time with the overall plan being to move onwards and upwards. Every challenge will have a solution, sometimes they are a little harder to find than others but you will get there.
Angela has suggested that you find other children and support groups and introduce yourself and lucas to them. This is a really good idea. I was increbibly fortunate to be introduced very early on to many people dealing with this condition. The company (Freedom) that we bought my daughters wig from was quite instrumental in this happening. First I meet a lovely lady that helped me understand that my daughter was going to be ok then I was introduced to many wonderful people dealing with the same condition. Now, I work with people with alopecia and everyday I contact those with alopecia and many visit with me. It's just about abnormal if you don't have alopecia in my house :). This has really helped for my daugher to understand she isn't alone and as many people that have this condition is as many people that deal with it to suit them.
You are doing a great job - you are here asking questions and reading as much as you can. All these things help to find answers to the worries you have.
I will say that your son will be challenged by this condition but not so much that it won't be ok. There are many wonderful, strong, productive people here that have been dealing with this for most of there lifes and as you know they are just fine, as your son will be.
Catch you again soon.
Rosy
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Permalink Reply by JOSE CHARQUENO on
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Hi my name is Angela and my son is Jose. He has had alopecia totalis since he was 3. He too was losing his eyebrows and eyelashes, but it stopped. He used to blame me for him being bald because when he had big patches missing I would shave his head. Then one day I took him to the Dr. and she told him that it was not my fault. That his blood just didnt like hair. His blood thought that the hair was sick or bad. I always tell him that he has a beautiful bald head. Just keep assuring him that he is gorgeuos and thats the style. Have him wear hats to protect his head. The only thing that gets hurt on my son is his head. Your son isnt suffering. Make sure you reasure him everyday. If he knows that it affects you then it will affect him more. He is beautiful bald. Its just hair, its not a deadly illness or bad illness where he has to take meds all of his life. Dont worry ya'll will be just fine. His story sounds like my sons. He is soooooo cute. Hang in there.
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Permalink Reply by estrella on
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Hi rach:
I have a 6 year old daughter with alopecia areata, she does not like to cover her
bald head (I have to beg her when is too sunny), she has totalis one time already.
What I have explained to her is that she is alergic to hair and that is why her hair falls down. I also has told her that her condition is something that is not going to stop her doing things, make friends, swimming etc. But what was more important in my experience is that I told her that she was not going to be harm seriously by alopecia, that she is not going to die, that she is safe. Sometimes kids have asked her if she is going to die. I was there two times and I try to not panic and explain to the kid in front of my daughter that her condition is just hair that is falling down, that is not cancer and that she is going to be fine, and I was surprised when the kid just asked my daughter if she wanted to play. They had a playfull day in the park.
Alopecia challenged us all the time mainly because kids ask questions which we do not expect. I try always to be proactive about information with my daughter. I try to be a little bit ahead and it works. Wher I take her to weddings, or birthday parties where she is not known I try to explain to her the situation. She understands very well the situation. She knows now that her hair is going to grow and fall down in time, and she is coping very well in school, she has a lot of friends and she is able to make friends in the park. When kids ask what happened to her hair, she explained to them that she is alergic to hair and then the just play.
Undrstanding is a process for the kid and the family, just keep in mind that in life they can be very happy too .
Jacinta
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