Replies to This Discussion

Permalink Reply by Cindy (Duncan's Mom) on November 5, 2010 at 9:29am

Lisa, It is so tough being a mom and watching our kids go through something that we can't fix. Good for you finding this site so quickly -- it took me 2 years before I found it! I have a little boy with Alopecia Universalis, but I know that he has to be so much different with a little girl. For me it did take awhile for me to "calm down." I did not let my fear and anxiety be recognized by him (just as you are doing) -- I think that is huge. I really had to get to the point where I gave it over to God. There was an event that God placed before me (several since) that reminded me how blessed I am. I was at the airport awaiting a flight home when I saw this little boy about my sons age. He had beautiful, wavy, thick hair and long eyelashes. I was envious and jealous. I thought why can't my baby boy have hair like that. Then the little boy sat down in the floor and his pants leg came up -- he had an artifical limb! I teared up and thanked God for the health and wholeness of my child! Just yesterday I saw a 3 year old going into the Children's Hospital Oncology wing for her check-up. She looked very much like my boy, but her hair loss was because she was fighting for her life. Again, I thanked God for the health of my child. We can do without hair. God has also given Duncan such a great personality. I have much confidence in the fact that he is going to be fine and will probably do amazing things with his life!

Hang in there! It does get easier. I hope that the encouragement you get from others will help you get there sooner than later. Your feelings are so real and it is because you love your little girl so much and want what is best. I will be praying for you and your family. Let God strengthen you -- talk to Him about it. He understands (He created us and our emotions) and He can help take some of the fear of the unknown away.

I feel like I have rambled on and on -- so sorry. I look forward to being updated.


Cindy (Duncan's mom)

Permalink Reply by CHARLENE WILSON (Chayenne's Mom) on November 5, 2010 at 11:12am

Hi Lisa - My daughter Chayenne, who turns 2 in December has AU, absolutely no hair left. Her hair loss started in June and by the end of August everything was gone. At first I walked around like a zombie, wondering why her? I cried, I searched the internet for 'miracle cures' and took her to several doctors who prescribed steroids and vitamins to stimulate growth - none of them seem to be working thus far. In the meantime, Chayenne is totally unaware of what is happening to her and continues to be the little bundle of happiness and excitement that everyone knows and loves. Even though I am blessed with a network of very supportive family, friends and co-workers, I realized that I needed help dealing with my emotions and I am seeing a therapist. I am still being treated for depression, but as Cindy puts it, in her post - I thank God for Chayenne's health because I see others who have hair loss from treatment for cancer. I have now accepted that my sweet baby girl may never have hair, but she will always be beautiful and I will make sure that she never forgets it! I count my blessings every day and trust me - it does get better! Continue to be the great mom that you are and everything else will fall into place - YOUR GIRL WILL BE FINE!

Permalink Reply by Matt (Mikayla's Dad) on November 5, 2010 at 11:35am

Hey Lisa! My daughter is older than yours...she turned 13 a few months ago. She didn't start losing her hair until she was 11, and it started with patches, then progressed to her whole head except for a couple patches that still grow. Now she's lost one of her eyebrows completely and the other one is almost gone. I was exactly like you in the beginning...I expected the worse, and in our particular case...we're headed that way. :)

Nobody can tell you how long this will consume your life. My wife let me deal with it mostly because she just couldn't, and at the time, I could remain stronger for my daughter. I can tell you that at first, I read, and read, and read!! I wanted to know everything there was to know about Alopecia. Then, we went to the Dermatologist and tried just about every treatment in the book, up to scalp injections (which were painful for Mikayla), and stopped when they wanted to try oral steroids. Even the Dermatologist said that if the hair started growing back, there was no way to tell if it was because of treatment, or just because of the disease. We decided it was better for us, but especially our daughter if we just let it run its course. There's no reason in making her think that she has something we NEED to treat...it just happened, and we have to learn to cope with it.

Mikayla wanted to start wearing wigs. Remember, she was 11, so she was already in school, had always had beautiful hair, and was not comfortable not having it. We started with synthetic wigs, went to human hair wigs, and then went to a company called Hair Direct and started ordering custom made "hair systems." Basically that's a wig made with human hair on a very thin "lace" base material that we attach to her head using tape. She even did before/after pictures for their website in the hope that she might be able to encourage other girls her age that are dealing with the same thing. Now, we've just taken the next step up...we met a couple weeks ago with a rep from Freedom Hair to have her fitted for a vacuum wig, and we are SO excited that we won't have to tape her hair on anymore, and she can take it off whenever she wants. The expense is a LOT, for us anyway, but it will be well worth it.

I'm not telling you to have your daughter wear a wig. She's young, and I think that's something that our kids need to decide for themselves. Mikayla loves going without her hair when she's not a school. On the weekends, when we go out of town, to church...pretty much anywhere besides school, and I think she's even working toward that as well, but she'll do that in her own time. She loves having hair, but she likes the freedom of not having to have it on if she doesn't want to. :)

You're doing the right things. You have to encourage your little girl. She has to know, without a doubt that she didn't do anything to cause this, and most importantly...there NOTHING wrong with her. You will find, as she grows up, she will be a very strong young lady. Our daughter has taught my wife and I SO much about personal strength. There were times when my wife and I would break down cry about this, and Mikayla would tell us, "it's okay." A great example was when we shaved what little hair she had left for her first lace attachment...my wife couldn't watch, I had to do it and it took everything I had not to lose complete composure, but Mikayla was nothing but positive, and even excited about it! You will see...it gets easier...I can promise that. The biggest obstacle you will face is acceptance. Your daughter will accept it before you do! Let her take the lead, and support whatever decisions she makes, and I promise you...you will accept this too. I know that sounds funny, especially at her age, but these kiddos are strong, and with love, support, and most of all, acceptance from you...they will teach us a thing or two.

Alopecia World is an amazing place...you will find so much support here, and I can guarantee you, that if you have a question about something...somebody here has tried it and can tell you about it. The best way to cope is to deal with it one day at a time. Don't expect anything...ahead of time, because you can't change that. The hardest thing for me to get over is people "looking" at Mikayla when she's wearing a bandanna. I know they're not being mean...they think she has cancer! I just have to tell myself to be thankful that it's NOT, and just get over what other people think. This is not just a "mind" thing...it's a "heart" thing, and you will see, as time goes on...it gets easier, and before long...it's just normal again. Hang in there...you have lots of friends here. :o)

Permalink Reply by Alia Ingerslev on November 5, 2010 at 11:54am

Hi Lisa. My son is 7. He has had AA since the age of 2 1/2 but back then it grew back and we never thought of it until one and a half years ago. It started again with a tiny spot that has been growing and joined by more spots ever since. Now he is having some regrowth while other spots are still coming. Over this long period of different developments and different attempts of treatments (only one conventional treatment otherwise alternative, dietary, herbal ones) one is bound to be consumed by it to an extent where at times you feel it is taking over your whole life. However, what I am experiencing as a parent is that yes you spend a lot of time thinking about it but fortunately a little bit less worrying about it as time goes by. Of course I have been thinking in worst case scenarios as well but I think what really brings us further is accepting each day with your child's condition. Try not to think of what was and what might come or be but accept each day on it's own merits. When you do think about it don't be too hard on yourself. This is a process that is going to take time but both you and your child will come through stronger. Take care and good luck.

Permalink Reply by Theresa Koehler on November 5, 2010 at 1:53pm

Hi Lisa,
I've rewritten this several times. I, too, was consumed with it for the first year. We went to the NAAF conference and we meet others in our situation that helped us through. For the first time, my daughter met other 14 year old with the same condition. It has been tough, but once she lost all of her hair, the waiting game was over. She is a very confident young lady. We deal with issues one day at a time.

Where do you live?
Theresa

Permalink Reply by Erin on November 5, 2010 at 5:23pm

Hi Lisa,
My daughter was also diagnosed at 4 (last May) and after several months of slow/diffuse loss, her hair all came out last month, just after starting kindergarten. Our family, too, is fairly new to this and I can tell you week by week you find your way. The first week of diagnosis I stayed up all night reading every study, anecdotal report, every bit of info about autoimmune diseases. I felt like I had dual personalities--while my daughter was awake I put on a face of enthusiasm, modeling positive curiosity for this new condition and trying to make every connection I could to the idea that differences make us cool, unique, special. Though in my mind I know this to be true, my heart had not (and still has not) caught up. As soon as my daughter went to sleep at night, the flood gates opened and I would break down and then get back online and read, read, read. The loss of sleep really contributed to my depression and inability to even want to accept this. A few weeks in I attended my first support group meeting and for the first time I felt a glimmer of peace. The stories of children who had lost their hair and continued to live the life they had and would have with hair eased my fears. I hope for you that even beyond this wonderful support site, you may find a group or attend a conference. Finding your alopecia family, understanding that so many others have been through this and their children are happy, thriving and such strong, thoughtful individuals because of and in spite of this disease. Before my support meeting and turning a corner on my grief, I had put in place seeing a therapist and still may do so in the future. Right now I force myself to stay in the moment. Right now my daughter is fabulously happy and is the life of her new class at school. I try not to look back or too far ahead. She goes bald most of the time (we are careful to never suggest she need to cover up except for sun protection), but we bought her quite a collection of accessories when she was first diagnosed and she has experimented with how she is comfortable. Many of the other kids want to wear her scarves, a few have worn their own to match. A few of the baby sybs of classmates are charmed by Emma and want to touch her head--it is adorable to see and she is starting to really feel how special this makes her. I am starting to see too.

Your instincts are spot on in my experience that your daughter will flourish and you will slowly start to (through her) accept that everything will be OK.

6 months into this journey I do still have bad days. My heart is broken and this helplessness/devastation/ loss of peace is something I have never experienced before. I know my daughter is fine and will have an amazing life without hair, but I miss her hair. Selfishly, I want that hair back so badly...I want the ease of day-to-day life without explanations or being followed by stares or the burden of knowing people think my lively daughter is dying of cancer.

I also have wonderful days. This experience has reorganized the priorities and mind-set of our whole family. Small miracles happen for us regularly--something else I have never experienced. My daughter's 2nd-grade buddy at school (randomly assigned) has a dad with Alopecia! No need to explain there. Her new best friend at school has a neighbor a few years older who...has alopecia universalis! A parent in my younger duaghter's new preschool class happens to be an acupuncturist who hooked us up with an AMAZING pediatric acupuncturist who then hooked us up with a wonderful holistic M.D. ped who specializes in autoimmune disease. Last month my daughter started gymnastics again (we took a session off at the beginning of school) and the last time we were there she had a head of hair. We were running late and I was stressed about being able to talk to her coach and her group about her condition--we get there and we bump into our support group leader! Odd because she does not live in our neighborhood. Her son (whose sister has had Alopecia for the last 5 years) was one of only two kids in her class--again, no explanation needed. I could go on and on about how the universe seems to have taken us under its wing.

I can't believe I am still typing, but your post brought me right back. Acceptance comes week by week as does the ability to find the magic of silver linings--they are everywhere now! In this respect, life is a bit better--at least has more meaning for us. I did make it a priority to do something nurturing/ healing for myself and am finding great peace and perspective through yoga. It is so important to acknowledge your grief and allow yourself to work through it. Randomly, are you familiar with the musical "Wicked"? My daughter LOVES the sound-track and the story of Elphaba (the Wicked Witch of the WEst) is unbelievably inspiring for anyone living with a "difference". The songs bring me to tears and reassure us that adversity breeds strength and courage. Check it out. :-)

Hang in there!
Erin

Silverlining

Permalink Reply by Lillian (Tracy-mom) on November 8, 2010 at 12:10pm

I felt the same way that you feel now 1 1/2 years ago when my then 8 year daughter developed three patches of bald spots at her ears and back of head. Her AA has so far not gotten worse or better despite trying everything from cortizone shots to naturalpathic medicine. In the beginning and now, I just keep reminding myself that she is healthy and doesn't have anything worse. Since I had a sister that died of cancer at 15, Its east to be gratefull my daughter doesn't have cancer. The hair loss thing though did bring back those memories of my sisters hair loss. We've also prepared my daughter for the worse possible senario and that she can pick out a wig if she wants if that day ever comes. Untill then she pretty much ignores her bald spots. She doesn't even try to hide them when she pulls her hair up into a ponytail. It has gotten easier at least for us. I think it a matter of being gratefull for what you have, a philosophy I struggle with all the time.
Tracy

Permalink Reply by Jack Gs Mum on November 11, 2010 at 8:54am

My son Jack is almost 14 and has alopecia [completed naked] and when it was first diagnosed I was sure as a Healer I would be able to find a cure and change this. However as life goes on [Jack has had it for 13 years now] i realise that he is not defined by having or not having hair but by his actions and this has been the most humbling of journey's for us both. I have learnt a lot through my son Jack's journey and at times it is so hard I used to feel my heart would break but now I know this will make him stronger in life and his journey though I am sure it wont be easy, will be colourful and more, for this condition.
Don't get me wrong if I could give him all the knowledge he needs to deal with the condition and people's reactions to him, I would but I also understand this is not just Jack's journey but mine too as his Mum - I walk each step with him daily and I feel the heartache with him and I KNOW how cruel people can be. I hope, pray and believe that Jack is able to cope with this journey ahead of him. If his hair grows back great - I don't hold my breath and I don't pray for that any more, I simply know that everything in life happens for a reason. He is simply naked from the neck up that is all...no cancer, no terrible disease just naked and beautiful. We are strong enough to cope with this...You will be strong because it is your child and we have carried them before and will do again if we need to. There are no support groups where I live either and this is the first time I have connected to an alopecia group but I hope it will help me understand the difficulties of the teenage years and that is why I have joined this one. I wish you well and would love to give you a virtual hug and say we are strong enough to do this. Be strong... All the best ;-)

Permalink Reply by stacey on January 18, 2012 at 11:28am

hi lisa yousound exactly like me my 4 year old little girl was diagnosed 2 weeks ago and since this has consumed my every thought. I cry myself to sleep and i am so stressed and filled with guilt did i do something , then i feel like it could be worse but then feel so sad and scared what the future may hold. My daughters name is samantha and she is beautiful she has a dime size spot and another one starting has had injections in the dime size one and cream on other smaller one, I hope and pray that it clears and does not come back but on line you do not hear many of thise scenerios which freaks me out even more. I like you also try to prepare myself for the worse and if that does not happen great but if it does i feel if i am prepared i will be able to accept i better. Almost accepting it before it happens. I am 2 weeks in and I am more of a mess than ever. She is such a sweet easy going little girl. Her 8 year old brother has been told what may or may not happen and he has been telling her every day that she is a princess no matter what she has no idea why he is suddenly says that but just looks at him and says I know. I hope this gets better or i can somehow deal with this better

Permalink Reply by tash on December 23, 2010 at 1:58pm

be honest with your kids. it might all fall out. she might grow up and want to shave her head. support her. be her support. be open and truthful. she doesnt become a boy, but she might lose her hair. she needs to be ok with whats ahead. and so do you. you need let her know anythigns possible, but focus on the good, how great she is, and dont draw attention to looks, more so of her personality. thats really what matters. dont let anything get in her way of accomplishing anything.  it is not the end of the world, nor should you treat it that way.

Permalink Reply by Amanda Crichton on December 28, 2010 at 3:54pm

Quick question do you live in NZ? Thanks

Permalink Reply by Debra (twin mom) on January 13, 2011 at 1:40pm

Lisa, I am with Cindy, I have a boy as well. My son started out with patched and within a couple of months, he had Universalis. It is hard as a parent to watch our child go through something that we have no control over. My son is an identical twin, and it hurts that his twin has hair that needs to be cut every other week. You would be surprised as to how well our children take it; much better than we can. Hang in there and remember one thing: there is nothing that you did, and nothing that you could have done to stop it. That was the hardest thing for me and my husband.