Alopecia World
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Madison's intro
Hey Miranda, My name is Sharon & I have 4 kids. 3 boys & 1 girl, Madison. Madison was diagnosed with Alopecia when she was around 2. When she was a baby and was starting to get her hair, we noticed she always had this "thumbprint" shpared spot in the front that never filled in. We didn't worry about it too much as she was still getting hair. By the time she was around 2, he hair was well past her shoulders and that spot had still not filled in. We took her to her pediatrician and he told us that it was Alopecia. I had no idea what the was, so he wrote the name down for us so we could look it up and find out more about it. We looked it up and i was surprised at what I saw!! I thought, this couldn't be right, she only has 1 little spot!! Over the next year she developed a few more spots, about a quarter size. Her Dr. gave us some lotion to put on the to stimulate hair growth. At this point she still had all of her eyebrows & eyelashes, it was only affecting her head. Well, the lotion worked and those spots filled in!! Within a few months the new growth fell out, and she started to lose more & more hairs. Her hair was getting very thin. Then one day, when she was around 3 1/2 I noticed her eyebrows were uneven, so I looked closer and found that she was starting to lose her eyebrows. It was weird how it happened, she lost them from the inner part first, and it just worked it way to the outer end, on both eyes. A little bit later her eye lashes did the same thing. Her hair was getting so thin, and it was starting to get to her, she knoew it was falling out. One day, when she was 4, she asked her daddy to take it off. We buzz the boys heads in the summer, and she wanted him to do the same to her. We debated about it for a while, not sure if we should do it or not. Finally we did it, there wasn't much to take off, but I think it made her feel a little better. She has not had hair since. SHe has had a few little spots that will have growth (about a dime size) but it usually falls out when it gets about 1-2 inches long.
We have had some ups & downs over the years. More for me than Madison. I was so upset over it. I had 3 boys and finally had my girl!! We had our girl times when after her bath I would take her in my bathroom to "fix" her hair, blow dry it, or curl it........she loved it......and now it seems we lost that time and I was so heart broken. When she was about 4-5 she went through a little depression, I guess that's what it was, but she just wasn't herself, not her happy, cheerful self........We were in the car and I am a HUGE Bon Jovi fan, and I was listening to their new album Have A Nice Day, and a song came on that changed both of our lives....It's called Welcome To Where Ever You Are"......It's about how everybody is different, and a miricle and to not to listen what others say about you.......... the last few lines......brought tears to my eyes....it says.....When you wanna give up and your hearts about to break, remember that you're perfect, God makes no mistakes.......I lost it!!! I was trying not to cry, but I couldn't hold it back any longer......i looked back at Madison and she just had the biggest smile on her face!!!! It was like she understood what the song was saying.
We haven't tried any treatments, most have too may side effects. But she is in a study at MD Anderson in Houston. They are doing a study to see if genetics plays roll or what, and if they do find something out and develop a treatment/cure, she'll be one of the first to get it b/c she's in the study. The study is being done all over the U.S. in about 5 other major hospitals. They said it could be 5 years....and she did it when she was 4, so a few more years.....hopefully.
We have had some ups & downs over the years. More for me than Madison. I was so upset over it. I had 3 boys and finally had my girl!! We had our girl times when after her bath I would take her in my bathroom to "fix" her hair, blow dry it, or curl it........she loved it......and now it seems we lost that time and I was so heart broken. When she was about 4-5 she went through a little depression, I guess that's what it was, but she just wasn't herself, not her happy, cheerful self........We were in the car and I am a HUGE Bon Jovi fan, and I was listening to their new album Have A Nice Day, and a song came on that changed both of our lives....It's called Welcome To Where Ever You Are"......It's about how everybody is different, and a miricle and to not to listen what others say about you.......... the last few lines......brought tears to my eyes....it says.....When you wanna give up and your hearts about to break, remember that you're perfect, God makes no mistakes.......I lost it!!! I was trying not to cry, but I couldn't hold it back any longer......i looked back at Madison and she just had the biggest smile on her face!!!! It was like she understood what the song was saying.
We haven't tried any treatments, most have too may side effects. But she is in a study at MD Anderson in Houston. They are doing a study to see if genetics plays roll or what, and if they do find something out and develop a treatment/cure, she'll be one of the first to get it b/c she's in the study. The study is being done all over the U.S. in about 5 other major hospitals. They said it could be 5 years....and she did it when she was 4, so a few more years.....hopefully.
Replies to This Discussion
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Permalink Reply by Miranda on
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Wow! I love this site, because it makes you aware that you're definitely not alone. My daughter right now is having the hardest time so far. She is pretty scared about kindergarten, but I think it stems from me. I also think it is the hardest for me, opposed to her.
That song sounds amazing, I'll have to get it and listen to it, or find it on the net.
We also aren't doing any treatments right now. She was using a topical steroid and Protopic and one of them thinned her scalp too thin, so bad that it caused discoloring of her skin and was tested for cancer. Since then, we haven't done anything because we are too scared and would much rather have our little healthy girl with no hair, than a girl struggling for her life. Now we research any and all suggestions from our Dermatologist before we try it. He doesn't even want to do anything just yet. I really don't think he is that educated on pediatric alopecia.
Well, thanks for joining this group, and I hope we can share more stories! -
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Permalink Reply by Madisonsmom on
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Miranda, Madison's hardest time was starting school. She was starting Pre-K the summer we took the rest of her hair off. She NEVER went without a hat to school. She would freak out if it fell off or if someone took it off. She goes to a small school and most kids & teachers there know her and she is very comfortable there. Towards the end of her Pre-K year she really started coming out of her shell. She would take some children's books about Alopecia to school for the teacher to read. I think that helped alot with the other kids understanding what was going on with her. Madison had used Protopic before, but it was prescribed to her for her Ezcema, she used to get it really bad on her arms. But when they found out that that had a link to cancer, we stopped using it! I can't believe it thinned out her scalp! I know it's hard to know what to use or not use. I figured that when her body was ready, it would do it on it's own. Though at times me & Madison both would like it to hurry up and make a decision and stop teasing us with the "little" growths.
Thank you for posting that song! I have seen it many, many times and even just now it brought tears to my eyes. I love it! And thank you for making it our theme song! That is so cool! -
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We just recently cut Della's hair really short. I think it has been the best thing we could have done for her. I think that our girls are amazing and that they are going to be fine, with or without their hair.
You know, both of my twins had ezcema under their arms and behind their knees. I read that a good number of people that have alopecia have experienced ezcema as well. They both are related to the skin.
What does the study require of Madison? I would love to have my daughter on the list when they find a cure too, haha. We live in New Mexico, so I don't know if there is a city that is close that offers the study. You said that it was offered in a few hospitals? -
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Permalink Reply by Cindy on
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Hi Ladies, I was reading this thread and I just want to say the we are all very lucky to have daughters with such a great spirit and attitude towards their Aleopica. Madison's Mom, I can relate to your story so well. I miss the days I can brush Samantha's hair and do things to it. It is so hard to watch the hair just fall out and not be able to do anything about it. No too long ago, Samantha noticed that her other eyebrow was falling out. When I said I know, she told me "mom just worry about yourself." Samantha just continues to amaze me by her upbeat attitude towards her AA. It is really hard for me to understand why this is happening to my beautiful daughter. She has no symptoms that are commonly associated with the development of AA. With that, I do hope she will regrow her hair..I have taken to her to endless doctors and like both of you had been given protopic..I was very dissappointed in that treatment and stopped after a few weeks since I did not like the grease ball it made. After taking Sam back to the doctor to discuss something else (at that point she had 50% hair loss if that) he did not want to try anything. I took Sam back to my doctor who referred her Children's Hospital. Her doctors have been wonderful and we are trying SADBE now..The harsh side effect is a rash for a few days after application. Samantha has not been bothered by the rash to my surprise and refuses to put anything on it if it bothers her. We are a month into it after a slow start and it takes about 3 months before we may see any results. In the meantime she wants to do this treatment and if it does not work we will have concede to AA and hope her hair follicles turn on again. I have noticed a halt in her lashes coming out so I hope that is a good sign.
Miranda, I know you have a lot of worries about Kindergarten. Samantha did start school with hair so our situation is different. But, you know my feelings about announcing it the class. We live in a small town and I am not open to share her medical situation. We have not had to thus far. You will be surprised how well Della will be accepted by her peers despite AA. Samantha has come home and said X noticed I had no lashes or X noticed no brows and the sentence always ends with "but it does not matter because X is still my friend." Keep her spirits high, let her teachers know of her AA and do what you need to make her feel confident and beautiful!!!
Madison's mom, I too am interested in the study that Madison is part of. What states are participating?
Cindy
PS: On a side note, we should get a parent chat time going???? -
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The study is being conducted at MD Anderson in Houston Tx and university-based medical centers in Denver (University of Colorado), Minneapolis ( University of Minneapolis) , New York City ( Columbia University) and San Francisco (University of Cal in San Francisco). You don't need to go to those centers to participate. Just contact the person at site closest to you and they will get you the correct info you need . I think all you will need to do is send in a few vials of blood.
Here's some links that will help you:
http://www.mdanderson.org/departments/alopecia/dIndex.cfm?pn=80D50D...
http://www.mdanderson.org/departments/alopecia/dIndex.cfm?pn=E57C5D...
Here's the regisrty toll free number: 1-866-837-1050
That 2nd link gives all the contact info (phone, email) for each site and explains the entires study.
Hope thst helps you and y'all are able to participate!
Sharon -
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