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Permalink Reply by Betsy Rachel's Mom on July 27, 2008 at 12:18pm

hi Abby's Mom, I am Rachel's mom.

Rachel is a little younger than Abby...she is 10 and started losing her hair in December. The shedding process has been long and slow. At this point she has lost about 90 percent of her hair. It used to be extremely thick and ran all the way down her back. Rachel is a pre-teen and the youngest (and only girl) of my 3 children. She has also had serious food allergies her whole life....she is one of those peanut allergy kids, but she is also allergic to eggs, mustard, sesame seeds and other tree nuts. She refuses to wear any headcoverings whatsoever, even though we have purchased a wig (which she wore once) and countless hats and bandanas. She doesn't like brushing her remaining hair and she also doesn't love showering and seeing her hair collect in the drain. So these are things that I have had to help her with.

When I found Rachel's bald spot, i started to become very proactive like you. I downloaded an article off the internet about a girl named Kayley, who is the runner up Miss Delaware and is very involved in the Miss America pagent. She is bald and incredibly beautiful. Rachel found the article about Kayley highly inspirational. We also read a book called Something About Enya by Margaret Peterson Haddix. We read it together every night before bed until we finished it. This is a book written for middle schoolers about a girl who has alopecia so it would be very appropriate for Abby. Rachel LOVED the book because Enya went through all the stuff she was going through. After reading these things, Rachel got up in front of her class with the school nurse and told everyone about her alopecia. She preferred this method to dealing with questions all the time. She didn't like having to answer individual questions in the school yard ("its annoying" was her way of putting it, so she preferred to get it all over with at once).

We then traveled for at least an hour to a CAP Kids support group meeting that was held closer to our home in NJ then their usual meetings in PA. We also went to the NAAF convention in Kentucky in June. Through all this, Rachel has been introduced in print and in person to some VERY positive role models, and, at least for now, she is doing great. She is away at sleepaway camp right now and every adult that has come into contact with her says that she is amazing. My belief is that if you treat this condition with matter-of-fact directness and without shame and you act to the world as if its not shameful, then people will treat you with respect and love. Even kids. I've been told that Rachel's friends at camp are extremely supportive and protective of her.

I mean, really, the only thing that every human being has in common, is that we all feel different and we all have something we don't like about ourselves. How many famous movie stars wear wigs, hair extensions and have plastic surgery? How many people are insecure and depressed about something in their life? Rachel and I talk about this all the time. We talk about what you see on the outside vs. what you don't see on the inside of other people. She knows that her "issue" is a little more obvious and maybe unique, but everyone's got something they have to deal with. We have a lot of fun reading people magazine and looking at makeovers of people who want to change stuff about themselves. We read an article in Ladies Home Journal about Dolly Parton who has hundreds of wigs and hasn't shown anyone her real hair since she was 19! It's a very positive message to see that someone like Dolly Parton, who has had sooooo much success in her life, manages just fine despite the fact that she hates her sparse, thin hair.

So, i think support groups are incredibly helpful. But, so is reading stories and memoirs about other people who have coped with this condition and other conditions, whatever they are. Overcoming adversity is a common theme in memoirs and literature in general. So, if you can't get to a support group, find st

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Permalink Reply by abby lawson on July 28, 2008 at 1:05pm

Hi Bogie, One of my best friends in elementary school had the name Bogie.I will let Abby tell everyone how her camping trip goes.I am sure she will make alot of friends. Thanks Tammy

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Permalink Reply by Betsy Rachel's Mom on July 27, 2008 at 12:42pm

this is rachel's mom again...it looks like my post got cut off and i can't figure out how to edit it, so i will just complete the thought here:....find stuff to read together and talk about it. You can also look in the library for memoirs written by parents of children with special needs...whether its autism, learning disabilities or any physical/medical challenge. I have found these books inspirational and i always learn something that i can use. Being a parent is the toughest job in the world, ain't it!?!?!?!

Best of luck to you,
Betsy

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Permalink Reply by Betsy Rachel's Mom on July 28, 2008 at 1:07pm

oh my gosh tammy -

i just read your post and i don't think any of us is free of worries, so try not to be too hard on yourself. this is something that is VERY hard. not a day goes by that i don't worry about rachel and her future. but, doesn't every parent? even parents of kids without special needs? all you can do is take one step at a time and it seems like you and your family are trying very hard. you are being flexible and you are trying everything. that's all any of us have done. every road is a reasonable road to try. some people cope well hiding it and others cope well by not hiding it. one can only tell what works for oneself when one tries it and you are making many roads available to your daughter...i think that maybe when abby meets other kids at the kids camp it will help her to see that she is not alone. has she tried to email or speak to other kids? that was all rachel wanted to do when she first got this...she wanted to meet other kids.

i just reviewed some of the other posts and realized that i missed some of what you said about her depression and thoughts of suicide and i agree with everything that everyone else has said on that subject. i see also that you said she wouldn't speak with the therapist, so the therapist told you to explore other options. that doesn't sound like a great therapist to me. do you think its possible that her depression stems from other things besides just the alopecia and that alopecia was the straw that broke the camel's back?

i hate to say this, and others may disagree with me here, but you might consider seeing a psychiatrist and doing a trial of anti-depressants to see if that lifts her spirits enough to handle this challenge. i tend to look at things very analytically. i know there is lots of bad press on kids and anti-depressant medications, but you have to look at each individual situation and judge it on its own merits. there are times when anti-depressant medication is absolutely warranted as insulin is required for a diabetic. its just a thought for you to consider.

stay strong and know that you are doing your best.

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Permalink Reply by abby lawson on July 28, 2008 at 1:59pm

Betsy,
Hi Abby's family doc is exploring the possibility of putting her on some type of medication ,but we don't won't to do this without careful consideration.So we are trying some of the helpful hints I have gotten back from everyone before we do this.

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Permalink Reply by abby lawson on July 28, 2008 at 8:02pm

Hi Tamgirl,
Yes its true I don't just think its Abby's hair,but its seem to be the one I cant fix.Abbys father has been very sick for awhile now,she use to have separation issue when she was younger .She was afraid to leave her dad in fear something would happen to him and she would never see him again.Her Gmal past away DEC.22 07 and then I was in a serious car accident in JAN.08.We are kind of use to bad things happening,but mom(I) always fixes things and makes it all better.So I guess in away I might be a little depressed that I can't heal her or make her feel better.I have been in the medical field all my life and it gives me great meaning in life to be able to help people in need so not being to help my own child is killing me,but I don't give up easily.I will do what ever it takes to help her and talking with all of you has given me hope again.As far as Abby goes I wish you all could meet her when she is not thinking of her hair she is so full of life she is caring ,thoughtful,artistic,loving,shy until you really get to know her,she is beautiful with big blue eyes,yes she is sensitive,she is creative,always thinking of others,she is my daughter and I love her.Tammy

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Permalink Reply by Lisa on July 28, 2008 at 10:13pm

Hi Abbysmom--- I'm Lisa, Jillian's mom. Jillian is my 10 year old who has had alopecia since she was 3 years old. At that point I found a quarter size patch which remained relatively the same for about a year. At 4 she lost the entire crown area and had only fringies. I knew nothing about alopecia, but quickly made connections in order to better help my husband and I understand and cope. Fortunately we found a great support group with a good number of kids.
At the pre-school age kids are kids and they knew Jillian as Jillian and really didn't notice her hairloss. There may have been a question here and there; but it was more curiosity than malice. Once I gained my footing and made use of the available resources I thought it best to deal head on. (Of course she was going into kdg-- a new school, so I basically was in the driver's seat.) A letter was given to the parents in the event the kids came home and had questions. Jilly was able to explain it as basically "being allergic to her hair". We gave her hair options, not so she would hide, but so she could choose. She wore a wig to kdg which basically ended up on the crossing guard's whistle or hung up on the classroom door. (We do laugh about that still.)
Her hair regrew in first grade and 7 months later she lost it ALL again. It was heart-breaking to hear her say the hardest part was to have her hair fall out on her schoolwork. I made it a point to never let her see how much this all upset me. This was my burden as a parent to carry, I felt my child needed my support and understanding.
Jillian has a BIG personality. She loves the spotlight. I've encouraged her to do what she loves. While she has many passions, she does love to dance. I've always told her it's important to have things we love to fall back on especially when we are sad or upset. (AND, we all have those moments whether or not we have an obvious physical difference like alopecia or something much less visible.)
We moved from NYC to upstate NY 2 years ago when Jilly was going into 4th grade. As if it is not tough enough to go to a completely new school, she now had to figure out how to best handle letting her classmates know about her alopecia. We attended CAP camp just before school began and it was a wonderful experience which lasted much longer than the 2 days we spent in PA. I did let the teacher know but Jillian took care of the other kids.
She's had a tough time--- how much of it is directly related to her alopecia is not easy to figure out. She sees the social worker at school and we have been seeing a therapist since Feb. She has always been a high energy kid, but her behavior, particularly at home, has been very oppositional and she has issues with impulse control in regard to her emotions. On the other hand, she has the biggest heart and is a great kid. Life would be easier if she were a little bit more to the middle--but who ever said growing was easy???!! (especially for parents!) We intend to attend the CAPkids camp in September with her 2 younger brothers.
I know you've had number of great responses from people with all different perspectives. I've just hooked up on this site and think it truly is wonderful. I share my daughter's story so you can see another picture of a child living with alopecia. I think this is key--living with. We all have been were you are in terms of not knowing what to do. Keeping the lines of communcation open are so important. We all need to know we are not alone, that other people deal with the same "stuff". Our kids do too. Often they just need to see kids like themselves having fun! I don't have any magic words, but I've always told Jillian go for your dreams-----there is absolutely no reason you cannot do something because of alopecia. It continues to be a challenge as she gets older and there are new issues to face.
As other people have said, I would be concerned and seeking help if there is pro-longed depression or any indication of self-harm. We are current

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