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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 alopeciatwinsmom on
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Matt - we are experiencing something similar. One of our identical twins starting losing her hair when she was 12 - it took about six months and she has universalis now. That was over a year ago. Her twin sister started losing patches of hair a little over a month ago. It is slow and painful and we did injections but don't see any regrowth - only more loss. Its excruciating to experience a second time. I blogged about it when it was super fresh here - http://melissaspoelstra.com/persevering-in-parenting/
I'm so sorry - your story makes me scared for our other two children.. One day at a time.... Blessings - Melissa in Ohio
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Permalink Reply by Matt (Mikayla's Dad) on
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Melissa...thank you so much for that blog post. I can't tell you how much I needed that today, and I plan on sharing it with my wife as soon as I get home. If it weren't for our faith, and the love and prayers of those around us, we would never have made it as well as we did the first time. This morning on my 45 minute commute to work, I was angry...that's the only way to put it. My wife cried herself to sleep last night, my little buddy has no idea yet, and I was just SO angry. All I could say was that I didn't know what to pray...I didn't feel like praying...I just wanted God to know that I was angry and I don't understand. This morning...and even now, I just feel broken...that's the best way to describe it. Thank you for sharing and reminding me of what I already know to be true. :-)
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Matt I can so relate to the anger and your wife crying herself to sleep! I have done all of the above. So glad we serve a God who welcomes all that emotion. I will be praying for your family today. Thanks for sharing your story on this forum. Clearly there are many of us....
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Permalink Reply by Kojak on
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Aww, that sucks!! But it's a fact, and it's a part of each of their life story.
Have you looked at their nails? A lot of people with Alopecia have tiny pin-prick dots in their nails, it's a clinical sign.
It's not an absolute science, but you could check if your youngest has the same nail markings as her siblings, and maybe you or your wife have them too? I noticed them well before I developed AU- nail techs used to comment on them but I never knew about the connevction to Alopecia. It doesn't mean she will or won;t get it, but it might be a little reassurance if they're not there- I know I was relieved to see my son didn;t have tme (even this is no guarantee he wonl;t get alopecia at a later time)
So I don;t know if that little nugget of info will be a help or a hindrance, but I reckon the more knowledge shared, the better.
Your kids are blessed to have parents who will support and care for them through this- the main thing is that they are loved and accepted just as they are- that'll help foster the resilience they need :-)
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We have heard about the "pin-prick" nails, and our oldest does have that, and always has...we just never knew when she was younger what it could mean. The other 3 do not...they all have smooth nails. We thought the same thing originally...when we found out about the nails, we looked at all our kids, which gave us hope. Like you said though...it's not a guarantee.
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Permalink Reply by amym on
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Wow, I am so sorry. Hard enough to emotionally deal with 1 child, let alone mutiple children with alopecia. Has the dermatologist asked anything about possible environmental triggers? Seeing as you have been through this for a while with your oldest, have they been tested for any other autoimmune disorders? Allergies of any sorts? Grant it no one can pinpoint the cause of alopecia, but hopefully the Dr. is checking on these things for you. Will be thinking of you.
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We had another friend talk to us some about environment as well. It's certainly something we plan to checking into.
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Permalink Reply by edie1122 on
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Hi Matt, Sorry to hear your family is going through a hard time. I have 3 children. 2 of which have bouted with AA for about 10 years now...the other is 24 and has never had any episodes. .I have AU for 14 years now!. All I can tell you is that no one's path is the same and I don't believe this means they will all have AU permanently. In my family, my AU has been a blessing in that the children see "the worst case scenario" and that for the most part, I'm happy and just fine! It is something I think about daily. Reasurrance and support mean everything.
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Permalink Reply by Liz on
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Hi Matt,
My heart goes out to you. I developed AU 4 years ago and recently went on a gluten free diet. I'm growing very fine hair on my face. I was tested and results came back that I am not gluten intolerant. Either way, I'm staying on the diet.
Not sure this is helpful to you as I realize it's another challenge to undertake however the more I learn about it, the more I believe it's worth it for the health benefits.
Wishing you aLl the best to you and your family.
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Permalink Reply by Amyann on
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Hi Matt,
I know having multiple children with Alopecia is a lot to take in. Of course your natural reaction is to worry about how much each and every one of your children will have to through. It's bad enough having to watch one child deal with this disease.
However, all I keep thinking about is how much your children can now be a support for each other. I was diagnosed with Alopecia when I was 10 yrs old, and I come from a family of 4 kids. I can only imagine how much different my journey would have been if just one of my siblings had been diagnosed as well. It is hard enough being the only person in your family living with this disease, let alone a school, or the community you live in; but now they have each other. It's an instant support group.
I know it can be difficult to imagine anything positive coming from this situation your family is now in, but perhaps there are some possible benefits (such as the fact that they are less likely to feel alone in their battles with Alopecia).
Trust me when I say that I am not the most optimistic individual, perhaps the opposite, but I can't neglect the fact that they may find strength in each other now.
Best wishes to you and your family.
Amy
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