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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 maeva78 on
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I read somewhere that brothers andsisters have a 7 per cent chance of getting it...
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Permalink Reply by Dorothy on
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I am really sorry your kids are having to go thru this and of course your heart breaks for them. I know I cried when the doctors told me it COULD be genetic and I could have passed this along to my daughter, then the second daughter and our son. While none of my kids show signs of Alopecia, and they are all adults now, It is something that breaks my heart to think they might some day. No one in my family except myself has AU, aunts, uncles, grandparent, cousins etc. Just by your post I know you will help your kids thru this and to me that is the most important, a supportive family. That is all we can do, that and pray for a cure, not just a treatment, but a cure. In the meantime, love them and let them know just how much they can do, don't let this be the thing that holds them back.
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You are in my thoughts and prayers. Until coming to this website, I did not ever know anyone else with Alopecia. My fraternal twin never has developed Alopecia. I had a great grandmother that had Alopecia Universalis. It is not always easy to deal with this disease, but I have dealt with it since I was seven. There are ways to live with it and not let it stop you from enjoying life. I will pray for your family and for healing. May your children be a blessing and support to each other.
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Permalink Reply by Kaylee Mitchell on
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Sorry to hear about your kids, I've had alopecia areta since I was 3 and been going through multiple different methods of regrowth for all my patches, I am the only person in my family history that has alopecia and I have a brother who's 22 and has never shown signs of alopecia but his hair thinned out
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Hi
This is a very difficult situation for you all to manage, but from what you have written, you are managing things as best as possible at the moment. I think when you are faced with this diagnosis for your child or children, there has to be a period of adjustment and grieving. So, please don't be too hard on yourself. Give yourselves time to work out what you want to say and how you want to handle this. There is no right or wrong way just the way that suits your family.
Some of the things that helped me when my daughter was first diagnosed was being in touch with others dealing with the same situation (like here). Also, being engaged with organisations where my daughter could meet and get to know those that were dealing with their alopecia in very positive ways. This helped a lot.
If I can be of any support please feel free to contact me.
Rosy
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Permalink Reply by Francie on
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my sister and i both have alopecia alopecia. mine started a 7 and it falls out about 90% for 2/3 years and then grows back for 2.3 years, I'm 23. my sister developed hers when she was 14 and just gets large patches, she's 21. No one else in our family has it that we have ever known of. but we do have other auto immune diseases like type 1 diabetes and hypothyroid. i believe it is related. and that this is genetic..
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AA is emotionally devastating, after 4 years I am still trying to find recovery for my DD. She is 14 and has AA since 10yo. Her AA was triggered by the h1n1 vaccine. I am wondering if your children with AA have any issues with strep, vaccines, or viral infection prior to the hair loss. It seems that AA people have underlying gut issues, which may be precipitated by taking antibiotics. Btw, we've tried gluten free diet and all kinds of supplements - they dd nothing.
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Permalink Reply by Jennifer - Mom of Scott on
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Hi Matt,
I have had the same experience with my boys. My son Scott is 11 years old and we have been on the alopecia roller coaster since just before his 4th birthday. Scott has lost his hair and regrown his hair 6 times in the 7 years since he was diagnosed. Scott is a fraternal twin and although his twin has not shown signs of alopecia, my older son has. My older son is 13 and shown some signs of "shedding" on three different occasions after Scott was diagnosed. The first two times were mild and it all grew back within months. The last time which was the summer of 2012, he lost a noticeable amount on both sides of his head and we took him to the dermatologist who confirmed what we already knew in our hearts that he too had alopecia. Both my boys have the pitting in their nails as well. We always noticed the pitting in Ryan's nails but also never made the connection until Scott was diagnosed at the age of four. So two of my three boys I know for sure have alopecia. Scott (11) is more severe than Ryan (13). My older brother also had alopecia. His did not come out until he was in his 20s and only appears as patches in his beard. It never affected his scalp. There is definitely a genetic link in our family. We too take it one day at a time. I have cried an ocean over this disease and there is not a day that goes by that I am not thinking/worrying about what the future will bring. Ryan has had his three little episodes and I pray it never happens again. Scott has cycled from bald to full regrowth 6 times in 7 years. Right now he has 80 percent of his hair so life is good until the next time. Each time it falls out, we always wonder if it is the end. We take it one day at a time and try to stay positive. I find the uncertainty of the disease most challenging. Not being able to reassure or prepare my boys for what will happen next is very difficult.
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Permalink Reply by montyone on
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Hi Matt and Jennifer.
My fraternal twin boys have developed AA since 14 (they are 23 now) at the different times. They also have developed Lupus and one even started Nephritic Syndrome and it recurred twice in the last three years. They are good academics and elite athletes now but still struggling to cope with the "look' of AA and also red rash on the face caused by Lupus. As we know, if you have one autoimmune disease, the likelihood of having another is very high. Dr says they should be more concerned with their Kidney than the hair, but that's what bothers them most.
Still, it's a relief as a parent that they have each other who understands their feelings although they never discuss about their problems at all, being boys!
It is difficult to manage the competitions overseas that requires traveling for 4 months of the year and a proper diet and medication as nobody knows what recurres when and travel insurance does not cover pre-existing medical conditions. They also get frustrated and angry at doctors who can't produce the solution to their problem.
As parents, we just have to be supportive of them.
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I have alopecia but I know of a few members of my family that had it also (one of my grandmother's sisters and my great grandmother). If there is no known history of alopecia and all of your kids are showing signs I would recommend having the soil and water tested where you live. It could very possibly be something environmental.
With me it skipped a couple of generations so it is also entirely possible that it is hereditary too but you just do not know it. If the hair loss patterns are similar, it is more likely that this is hereditary. It may be difficult to pin down the cause but I do not think that testing could hurt.
I am so sorry that you are dealing with this. I know that must be heartbreaking to see your kids going through this. So far my kids have not had any issues but my issues started around 18 years of age so we still have to wait a while and see....
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Wow! I have identical twin sons & they both lost all their scalp hair by the time they were both 25; but that was normal male-pattern baldness. Neither one of them had any patchy bald spots. Interestingly, they recently invested in full-spectrum DNA testing and found a lot of genetic markers for alopecia & baldness in their genomes. As far as I know, I am the only one in my family with alopecia.
Mine started in my late teens and the only thing that helped was steroid injections directly to the bald patches. I tolerated those injections for about 20 years. Then about 10 years ago, one of my dermatologists gave up. He said that he didn't think my hair would ever be normal again. I stopped treatment for about 10 years. I decided to try again about a month ago. I'll let you guys know if my monthly injections in my scalp bring on the hair...
Meanwhile, I'm donning wigs & hats. Someone mentioned the pitted fingernails. I have pitted finger and toenails. I also have autoimmune hypothyroidism & severe environmental allergies (hayfever). I wonder if cord blood would ever help anyone with this disease. There's all kinds of treatments that "MAY" help. Until they find a cure, I'm sporting some pretty wigs.
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My daughter is 14 and has AA, since the age of 7. Didn't get any help from doctors. Tried to find out underlying causes throug the alternative pathway. Throug EAV- electroacupuncture after Dr Reinhard Voll's method, we found that she had multiple things stressing her immunesystem. Rubella,measles after vaccines.Bad gut bacterias.Function of small intestines on only 10 percent, borrelia.... We have cleaned out her system, and are now following Rob Swierski's diet without gluten and milk,pluss probiotics for her gut. Started with the new diet in August. It has helped on the regrowth for her. Do not believe in cortison. Only mascing the problem.
Did you cheque out www.healingalopecia.com?
Think of you!
Liv
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