Replies to This Discussion

Permalink Reply by Karen Leffingwell on February 21, 2011 at 7:58pm

Believe me, we've all felt the way you do. Unfortunately, there is nothing that you can do to stop it. My daughter is 10 and started losing her hair last September. The best thing you can do is keep upbeat and positive. Make sure he knows he is loved whether he has hair or not-- his hair is not what makes him so special.

Permalink Reply by Jennifer on February 21, 2011 at 9:00pm

Hi Renee - We have been in the same position since mid-December. My 2.5 year old daughter developed a quarter size spot in mid-December; misdiagnosed by our pediatrician, diagnosed correctly by my dermatologist at AA in early January. By early January the hair on the top of her head began to thin and then really develop bald spots. Then we proceeded to develop about four more nickel size spots. We have gone to an amazing pediatric derma that has been patient and understanding with us. She said this is the worst diagnosis to give parents with healthy children. We have run the gamut with blood work. It all came back fine. We are currently using a topical steroid ointment twice a day. Both our derms recommended the same one. In early February our regular derma wanted to start Lilah on oral steroids, but we discussed this with our pediatric derm and decided not to - as we are more "in control" with the ointment.

I believe the diagnosis is very difficult no matter a girl or boy - but I have finally (7 weeks later) become a little more rationale and do not cry when I see my friend's daughters with all their beautiful hair and bows, etc. I have had my moments of complete hysterics since January, but as I said right now I am in a good place. I have read (and re-read) the internet so much. I am much more comfortable talking to other mothers and fathers of young children that have been going through the same thing. The best is reading some posts where the hair grows back :) and then nothing happens for years! This is my hope. However, I am going to accept whatever is going to happen - and yes - I have a healthy child (thankfully).

On our last visit to the pediatric dermatologist - she said that we should have a come back for people that are rude or ask if our daughter is going through chemo. So I am ready if this happens with my one liner. However, all my friends have been supportive and want to know how Lilah is doing. Again - hoping for the best!

Best of luck to you and your son!

Take care,
Jen (Lilah's mom)

Permalink Reply by Renee (Elliott's Mommy) on February 21, 2011 at 10:30pm

Hi Jen,

Thank you for the thoughtful and compassionate response. It really does sound like we are going through the same thing at the same time. I'll be looking forward to seeing how Lilah and Elliott progress.

I was almost hoping for our blood tests to show something. Then, I would have an answer to why this is happening. When the test came back normal it brought me back to square one. Should I try a gluten free diet? Should I try to reduce his stress? Should I get him outside more? I decided that I am just going to wake up every morning with a bright perspective that whatever will be will be. It's exhausting waking up with Alopecia as the first thing on my mind. My Aunt told me the other day that it's not worth the effort to worry about the future, just worry about today. I am going to try to practice that.

I am sorry that it saddens you to see your daughter's friends hair all done up in bows. It's hard to believe that this is even an issue. Would you have ever thought when you were pregnant that our kids are having hairloss problems? I read an excerpt of an article online the other day from Christopher Reeve who played Superman. He said he had to have steroid injections during the filming because he had Alopecia. I never had heard of this issue before. I asked a girlfriend of mine about it and she said she worked with two women in the past that had it. I am hoping for Elliott's hair to come back but like you, I am going to be thankful I have a healthy child and accept whatever is going to happen. I have a one year old son who is quite the little bruiser and I think he will be Elliott's protector if anyone tries to bully him :).

I don't think I will choose to do oral steroids if they become and option. It seems to evasive for a little child. My mother in law has Lupus and took oral steroids and it really took a toll on her body.

I'm so thankful this website is here. It's so nice to be able to empathize with one another.

By the way, what is your come back for people that are rude? I had a coffee shop employee ask my son what he did to his head. He's three, why in the world would he ask a three year old that?

My thoughts and good spirits are with you and your family.

Renee

Permalink Reply by Amanda Crichton on February 21, 2011 at 11:04pm

Hi Renee,
Know that our thoughts are with you and your wee boy, it is hard for all those effected by Alopecia.
I have not long been on this website myself - have a daughter 15yrs with AU, diagnosed Feb 2010 I was told that steriod creams help at first, but the hair does fall out again, if you don't continue using it. otherwise it is an unpredictable condition, no known cure as yet, and very unpredictable, also it effects everyone differently. I believe it is caused by an immune deficiency -0 vitamins can't hurt, & if you choose to go healthier in diet, I don't think it would hurt either... but don't know that it is necessary unless you see good results from it. :)
Unfortunately stress just adds to it :( It is really yours and your wee boys choice what you choose to do in regards to treatment available where you are, and whether you cover his head with a hat...or choose to shave his head. I think with shaving it is still obvious that there are patches...a bit like a guys 6 o'clock shadow you can see where hair was, and where it isn't is very smooth no hair look.

It is hard - not only for you but for you wee boy, find support through family & friends, & on this site,
look for others in your area/country on this site, that you can talk to/ met up with and get support.

I was told not long ago, it gets better, it does take awhile to get your head around it (excuse the expression) & some days if feels like it is all consuming... try to keep things as normal as possible and know it does get better as time goes on! Try to brush off rude comments - easy to say & hard to do...
Try not to let it pierce your heart, they are ignorant, & often don't think before they speak!

Try to find something in your day each and every day to do something for you to put a smile on your face, and help relieve the stress.

Hugs
Amanda

Permalink Reply by Amanda Crichton on February 22, 2011 at 3:49pm

I meant to add yesterday about the dullness of the hair... My daughter's has also done that...I was told it was due to the hair dying...maybe trying a better quality shampoo & conditioner to see if it helps? I haven't been able to try this due to hardly any hair, and she keeps a hat on 24/7. But I am thinking it may help? I also have found not thinking about it 24/7 has also helped us... but you do need some answers, and it does take a toll - I like the way Sara & William put there message to you...very well put! Hopefully you will get some answers from this site to help you along your journey!
If your able to go back to some threads of conversations...there was something there not long ago about Parents informing schools to help their child in this situation.

Blessings
Amanda

Permalink Reply by Sara and William on February 22, 2011 at 1:00am

Definitely been there. The most important thing I think I can say to you at this point is this: You won't feel this way forever. It gets better.

I would like to tell you that it gets better because the hair comes back, but I'm not God, and I can't say that. Boo's hair comes and goes, apparently. He went from a quarter sized patch in November of 2008 to completely bald by the time Christmas break was done in 2009. He was universalis, no brows or lashes, pitted fingernails, the whole thing. He started school bald in fall of 2009, and somewhere along the way all the hair came back. November 2010, a quarter sized patch. Right now we're at about a palm sized patch in the back of his head, but I figure we'll probably end up bald by the time this round is through.

I would also like to tell you that it gets better because the comments stop, or because it gets easier to have people whisper, or stare, or ask you when he was diagnosed with leukemia, but I'd be lying about that, too. You do get used to it, but that's about all I can say for that.

I wish I could say there was something to do to stop it, but then I'd really be lying. I can say there's a wide range of how obvious it becomes, and whether it's full time or comes and goes. However, since you don't get to pick it, nor do you know in advance where it will end, knowing that it MIGHT be one way or MIGHT go another is almost worse than just having the "worst case" outcome. Some people do have some success with various treatments, but it's never really clear if the treatments just happen to occur at the same time as improvements. IE, because the hair comes and goes for many people, it's hard to say if the treatments have anything to do with it. Some people swear by shots or steroids. We've never tried them, so I'll leave that for people who have.

What gets better, though, is the panic, the fear, the angst, the not being sure if you're going to burst into tears, the feeling that no one knows what you're going through (they don't, but we do, so come here when you need to hear from someone who knows what's going on). Life really will get better. I will go out on a limb here and say, "I promise."

And for me, the absolute hardest part was the "At least your child doesn't have cancer." Thank you, OBVIOUSLY I am glad my kid is not dying. That doesn't mean that watching them be different than every other child their age is easy. But then you think you're a bad person because you're not focusing on the good parts, or you're not thankful for your blessings, or the irrational superstitious nagging thought that by not being more thankful that something worse isn't happening that you're going to be in some sort of cosmic readjustment and something worse will go wrong.

All of that is normal. We all go through all or some of that. We all cry. We all worry. We all hope, and we all pray (or whatever our personal belief system all that gets channeled into).

I'll tell you the obvious, try to cry only at night, when your son isn't around. Try to be matter of fact. Try to make sure he knows that you love him just as much whether he has golden, curly locks down to his knees, or is bald, or has fuzzy patches on one side of his head. When you answer questions, try for matter of fact. Figure out what works to tell coaches, teachers, other parents, and practice it in a mirror if you have to till you don't wince. And don't beat yourself up when you aren't perfect, none of us are.

We're here. We'll listen. You're not alone. You will feel better.

Hang in there!

Permalink Reply by Kinsey Valdivia on February 22, 2011 at 2:41pm

SO much wisdom has already been shared. I'll add my two cents worth. My son, Sam developed alopecia at 20 mos and has run the gamut of completely bald to complete regrowth a few times now (he is 6). It is hard, but having people in your life & online to share the highs & lows with helps tremendously. There doesn't seem to be much rhyme or reason to his regrowth. Sometimes I think treatments just provide us with an attempt at controlling things that are out of our hands. I will tell you that the other 3 year olds probably don't notice &/or don't care if they do notice. They are much more interested in playing dinosaurs than what Elliot's hair looks like. And I think that Alopecia help shape my Sam become the caring, empathic little guy that he is.

Permalink Reply by Amanda Crichton on February 22, 2011 at 3:44pm

I love the way you have worded this...well said Sara & William.

Permalink Reply by Sara and William on February 23, 2011 at 10:59am

thanks:)

Permalink Reply by kristine Wilson on February 26, 2011 at 2:25pm

Hi Renee! We were in the exact same spot this time last year. My son Benjamin started off with that classic, quarter sized spot on the top of his head. My husband had a very difficult time coming to terms with it. I just took it day by day and did whatever the dermatologist told us to do. We have switched dermatologists 3 times, and we are finally with a hair loss specialist. Unfortunately, they don't have any concrete answers, which is what we were looking for. Every case is differant, so it's hard for them to say. We have switched medicines many times (and every time it got more expensive!) Right now we are using a Dritho cream, and it seems to be helping. He has new growth all over his head. His hair is very light so sometimes it's hard to see. But any progress is good. I look at it this way, he doesn't really understand right now. He lets me put on his medicine and is so patient. Our friends and family are very supportive. He is happy, healthy and active. So it is what it is. I have been approached with the question of him going through chemo and everyone is thrilled to know " that's all it is". Best of luck to you and your son.