Replies to This Discussion

Permalink Reply by Sara and William on March 29, 2009 at 10:17pm

We are in a somewhat similar situation. Our 7 year old started out with a patch around Thanksgiving. For us, it became pretty clear a month or two ago that it was getting worse. I don't know if there's any research backing this, but I watched for his eyelashes and eyebrows. Once they started going, we shifted from assuming it would grow back to figuring out how to help him adjust to the change. AA with patches is MUCH more common (and likely to regrow) than AT and AU. The basic rules of thumb are: Younger is more likely to be an ongoing problem (though it may be more or less pronounced at any time), and the more hair you lose the less likely it is to permanently regrow. However, the hair follicles remain undamaged, so there is always a chance that you will get regrowth.

I can't help you on doctors. We've drawn a blank there. More precisely, we've decided that the limited treatment options are not for us at this time. I know there's at least one parent/child around here that is doing regrowth treatments of some sort, so probably she could help you more on that front.

I'd be happy to chat with you any time, but I have just told you pretty much everything I know:)

--Sara

Permalink Reply by Karen( Mom) on March 29, 2009 at 10:37pm

This is a great site for questions and hopefully answers from parents who have been there. Not sure about re-growth ( we are not there yet) But as for Doctors, in Dec when I discovered AA our family dr. wanted to find a Dermatologist he fliped open a big book and said take your pick, I don't know anyone. So not impressed by this I phoned the Childrens Hospital in our area and asked the receptionist for some names of pediatric ones. It worked, we have a great derm. and so far the cream we are using for the spots is working.

Side note, we have also seen a naturapath. Now I am fairly traditional when it comes to drs and skeptical of the natural stuff but I thought what the hell. He has tested her and she shows that she is lacking iodine in her body. which can cause loss of hair, We just started the iodine so no info yet.

Karen

Permalink Reply by Michelle & Kyra on March 29, 2009 at 11:27pm

Hi Karen who did you see for a dermatologist? Kyra was sent to one at the Stollery Childrens Hospital but we didn't really find her very helpful. We had decided on doing no treatment and so far that is working great(Kyra has had tons of regrowth). I know that this may be temporary so I'd like to keep our options open.
Michelle

Permalink Reply by Lillian (Tracy-mom) on May 14, 2009 at 12:34am

My 8 year old daughter Lillian was diagnosed two week ago with AA. I discovered two large spot 5 cm by 10cm on each side of her head from her ear to the back of her head. I started her on the cortizone shots and hydrocortizone topical within 2 days in a desperent attemt to stop her hair from falling out. She has suffered from food allergies, evironmental allergies and asthma for years. I stopped all her medication and allergy shot right away and started her on some stuff that was recommended at my local health food store. I also got list of NP and we saw him today. It was so nice to spend more than 5 minutes with a doctor. He has order two tests. One a GI to make sure her stomach is working right. and a blood test to check for more food allergies. He told me what I had already learned, that this is an autoammune disorder. He also said the autoammune system has a long memory and will always see the hair follicles as a threat. He said the key was keeping her immune system healthy and in balance as much as possible to try and prevent future attackes. avoiding all food allergies was a part of that.

We'll see if it works. It's all expensive but anything that helps is work it. She hasn't lost anymore hair yet and she is symptom free from her allergy and asthma so I think I may be on the right track.

Permalink Reply by Beth Breslow on March 30, 2009 at 7:51am

Hi Lauren,
Our situation sounds very similar. My daughter is almost 3 and around January started with a patch on the back of her head that was 4 cm. by 4 cm. Within a week it was shedding like crazy and she started with circles on top of her head. We went to my dermatologist who prescribed some foam that was for ages 12 and up. I decided not to use it because I was scared. All the research i've done shows that a lot of these foams are not even proved successful. Her pediatrician scheduled bloodwork and it all came back normal. We are in PA so it took until mid March to get into the children's hospital to meet with a pediatric dermatologist. In the meantime I would just watch it fall out every day. It's hardest for moms because you just don't know when it's going to stop. I would cry every day but I wanted to be sure my daughter never saw me cry. While we waited for the appt. with the pediatric dermatologist I started seeing a chiropractor/wellness dr. At that point I had nothing to lose. She sent me home with all of these natural supplements and I would see her weekly. She also told me to cut gluten from my daughters diet because it's not good for my daughter's digestion. About 1 mos. before I noticed the first bald patch my daughter was sick and was put on antibiotics. I still think that the sickness is what got her hair out of wack. After being on these natural pills for a month my daughter's hair stopped falling out.....it was a miracle. Until that day I really thought she was going to go bald because everyday it would just shed like crazy. Since it stopped I've been using Nioxin folicle booster - it has all natural ingredients and you can find at most hair salons. About a week later I started feeling little whiskers on the top of her head.....since then she is getting peach fuzz on top. It is such a slow process but I am just relieved that it has stopped falling out. It has been a roller coaster since it all started in January but I hope this gives you hope that maybe your story will end up the same as my daughter's. I still get scared that this is all going to happen again but I have to be positive and just believe for the best. Good luck with your daughter!!!

Permalink Reply by Angie, Gracie's mom on May 4, 2009 at 12:30am

Hi Beth, has the naturpath been a good avenue for your daughter? We've thought about it, but haven't tried one yet.

Permalink Reply by Lillian (Tracy-mom) on May 14, 2009 at 12:41am

Hi Angie,

My 8 year daughter with AA and I went to see a Naturpath doctor. One thing I liked right off the bat is that he was looking a the root cause not the symptoms. Convetional doctors just don't do that. He wanted a couple of test done to check for food allergy since my daughter is highly allergic and a GI test to check for gut. I will know more in 3 weeks. Of course, he did tell me one piece of information that was a bit disheartening and that is that her immune system will always have the memory that the hair follicle is a threat. So it could happen again no matter what. His course of treatment to get her immune system as healthy and balance as possible through diet and supplements.
Tracy

Permalink Reply by Danielle & Lilly on March 30, 2009 at 8:25am

Lauren,
My dd has had aa for 3-4 years. she has about 25% hair left on her head. she has no arm or leg hair. It started with a patch just likeyour daughter's. We went to a derm. in town. We used anthralin and the patch regrew & didn't show up again unil 2 years later and it has progressed quickly. We saw the specialist at Duke Hospital or Clinic. Dr. Elise Olsen. She was helpful. However, Doctors can only be helpful to a certain extent since this disease is unprdictable. When docs say it will grow back or it won't grow back or things like that, those are the docs you shouldn't see. They are trying to tell you the future of a disease on your child that is UNPREDICTABLE!!!! There is not a single doctor that can predict the future. I never knew that my daughter's one little quarter size spot would have turned into what it is today. We are getting a biomatrix from HCK. And there is not a single doctor out there who could have predicted this accurately. Good luck with all that you do. And one piece of precious advice that I have for you is to find another person, preferably a child, that has aa. Set up a meeting for the children and your families. It will change your world and comfort you in ways you can't imagine. We did this last weekend and I feel a lot more at peace, as does my daughter.

Permalink Reply by Mom Jennifer, Son Joaquin on March 31, 2009 at 12:31pm

Hi Lauren, our son, Joaquin, also started with patches of hair loss. Now, he has alopecia universalis -- total hair loss all over the body. I would suggest that you attend support groups in your area which is a very good source of information on various treatment and other information about AA. This way, you & your daughter will also get to meet other people experiencing the same. We just attended our first Greater Toronto Area (Canada) NAAF chapter support group meeting last Saturday and boy, did we get a lot of information esp. from the doctor that they've invited. National Alopecia Areata Foundation (NAAF) started there in the US. Here in Canada, they have a treatment called DPCP, not sure if it's available in the US. But accdg to the doctor last Saturday, this is a good treatment to start for those with only patches of hair loss, not for my son who now has total hair loss. But, had we known at that time, we won't even consider that for our son since he was only 3 when diagnosed with AA. DPCP, an external treatment, is extensive, 1x a week you'll have to go to the hospital and there are side effects. Anyway, after all that said, we stopped with any medication and we're still hopeful that our son's immune system will someday leave his hair folicles alone and let him grow back his gorgeous hair. By the way, this does happen and apparently, someone shared a success story during the NAAF conference last year. And in the meantime, we're taking one day at a time. And if that day doesn't come, it's His will and not ours, and we'll just make the most out of our lives esp our son's. Hope this helps.

Permalink Reply by german mama in NY on April 1, 2009 at 2:48pm

Hi Lauren, sorry , but how a doctor can say it would grow back?????? Can he see in the futures????
I'm tiered when I hear that " it will grow back", wrong way to give hope, yes, the hair can come back or maybe not, or she will loos them again, this is AA!!! My dauther have a few big patches ( what I shave) those spots grow like crazy, but still the most of here had are bald, she keept here hair in the nose and in the ears, and she lost one time here 1/2 eyelashes and here eyebrow got thiner, but both grow back, and she keep them now for over a year, but we never know for how long it will last!!!! What hurts but it is like it is, we can not change it, and NO doctor can help, I believe our kids are to young for treatments, there are to healthy for get something what make them maybe sick!!!
PS: Sorry for my english!!!!! Stay strong for your child, Sabine

Permalink Reply by Tammy -mom of Ramsey on April 2, 2009 at 12:47pm

I have gotten more information from this site that from any doctor! And if one more person tells me it is only hair, I may KILL them!

Permalink Reply by Diane Hernandez on April 19, 2009 at 10:00am

AMEN

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