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Multiple children with alopecia?
Our oldest daughter, Mikayla, started losing her hair in patches when she was 11...she lost everything within 6 months, and has now been dealing with Alopecia Universalis ever since.
Last year, we started finding patches on our second daughter, Jenna, took her to the Dermatologist and she's been getting Kenalog injections with new patches and it has worked for her...nothing EVER worked for our older daughter. This daughter is 13.
Last night, we noticed a very small patch on our son, Jonathan, who is 10. Needless to say, my wife and I neither one are doing well today, and we haven't talked to Jonathan about it yet, but we will have to soon because we'll need to take him to the Dermatologist.
We have one other daughter who just turned 8. We haven't seen anything on her, and she's asked us before if she would lose her hair like Mikayla did. We've always told her that it's very unlikely, but now we just don't know what to say or do!
Anyone else have multiple children with Alopecia? We've found NO family history of Alpecia in my wife's family, or my own. We are at a total loss at how to deal with this. It was hard with the first one, but we learned as we went along...we didn't know what to expect. It was much harder coping with our second daughter, but we're hopeful because at least she's showing good progress with threatment. Now, our son...you all know...there are just a lot of emotions that go with this, but to think that ALL of our sweet kiddos will have to go through this...it's a lot to think about.
Replies to This Discussion
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Permalink Reply by StephaniePA-C on
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Hi Matt
We only have one child but she was diagnosed with AA at 12 months old. Looking back we suspect she probably had it since 6 months of age. She lost about 40% of her hair. She had probably 10 - 12 patches at one time. Miraculously she is doing fantastic. Her patches are all growing in. We found a very small patch last week but I am unsure how long it has been there. As far as family history, we certainly have it but Maeve is so far removed. Her great-grandfather had it at age 16. It resolved on its own. He is now 85 with a full head of hair still. She has a great uncle who didn't develop it until his late 50's. He progressed rapidly to AU. Kenalog injections nor any other treatment worked for him. For the first time in almost 10 years he has a full head of "peach fuzz" which he relates to being started on two cholesterol medications (simvastatin and Zetia). Maeve has a great-aunt who developed AA in her 50's as well. Her hair has regrown with Kenalog injections. Both her great aunt and uncle have the pitted nails. Maeve and her great-grandfather do not.
I don't know why Maeve's hair is growing in. More than likely it is coincidence but we did make some dietary changes for her. She has had an intolerance to dairy since transitioning to formula. She always required Soy. When she started eating, dairy would make her breakout. We have completely eliminated dairy. We then had heard about eliminating gluten. I am not one to jump on diet bandwagons but I was willing to try anything. Maeve has been gluten free now for 8 months. She quickly developed "peach fuzz" but it just stayed that way forever and I was getting very discouraged. My good friend from childhood is a Naturopath in Seattle. She told me to give it at least 6 months to allow the gut to heal. About two months ago her hair started growing rapidly. All of her spots are full (with the exception of the very small spot we noticed last week). We have also started her on a daily multivitamin and Omega-3.
My heart goes out to you. It is so difficult to be so helpless. I will and am, trying anything I can to help her. At the end of the day, I know my efforts may be pointless. But I will fight for her as long as I have to.
I am very encouraged by the recent breakthroughs made at Columbia University. I do believe our kids will see a cure! I would encourage you to enroll your kids in the alopecia registry. My entire family enrolled. They are very excited to get patients where multiple family members are involved. I was told my the registry these patient's information has played a vital role in the recent breakthroughs made at Columbia.
Good luck to you and your kiddos!
Stephanie
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I keep hearing about the Gluten-free diet's curative affects on Alopecia. I'm willing to try anything! Has anyone else out there achieved successful hair regrowth from eliminating gluten???
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I feel like such a young age your daughter began alopecia pitiful. Maybe someone like her in the school situation maybe people would be laughed at. How do you not take her around to see it! If you really cure, then I can give you a suggestion you may want to try her wig ah! Some real wig is not apparent. I used to have in EOZY where you bought for your daughter you can try to look for.
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As parents of a child you will bear to let their children into a bald yet? You would not think for them to find some real wig it? At least this way your child will not be other people laughed.
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A thoughtful explanation you can send to others helps everyone because explaining this to friends and family is not always easy.
I've followed Thea Chassin's accurate science updates and spot on advice for years and now she writes the blog.baldgirlsdolunch.org ( The best is to sign up for the free weekly updates). Last week she covered "Understanding Autoimmune Diseases: Is Alopecia Areata Hereditary?"
She wrote:
As we all struggle to understand and cope with alopecia, it's important to know what it means for your family as well. http://hub.am/1gloatD Please share so others can know the facts too.
I hope her approach to alopecia education will be as much a source of comfort and support for your family as it has been for me when I've needed to talk about new things going on with my AA.
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