Comment

Comment by Evie and mom Gail on July 7, 2011 at 11:59pm

Hi Lisa
we have the same approach that you do- help Evie (almost 6) feel beautiful and confident and able to explain it to people when they ask. She also has sensitive skin, lots of rashes and over reaction to bites and at times eczema. We haven't tried any natural therapies or supplements, but I hear some people cut out gluten and othe things

Comment by Lisa Leppert on July 7, 2011 at 9:32pm

My daughter (who also has a twin) was diagnosed @ age 2; she is now 6. We went to several dermatologists with all the treatments having worse side effects than the results; which was nothing. She is totalis. She has kept her eyebrows and her eyelashes come back in they fall out. I know what creams work for her eczema and go to her PCP for refills on those. I know its frustrating, but this is one of those things that if the hair is going to grow back it will on its own. I have just tried to instill confidence in Alex and let her know she is beautiful just the way she is. We have a moto " God only made a few perfect heads the rest He gave hair"

Comment by Erin on July 7, 2011 at 4:20pm

Hi! My two year old daughter Lilly has been diagnoised with having alopecia areata for about a year. We have seen a couple of dermatologists and both recommended we start with Luxiq (betamethasone valerate) foam twice a day. We have used that for aprox. two months and have not seen any results and actually new spots have started. I think Lilly could also have AU I have noticed her eyebrows thinning and she does not have much body hair compared to her twin sister Hannah who does not have alopeica. I have an appointment with dermatologist again July 18th so my question is what should I be asking or any suggestions would be greatly appreciated. This is all really new and it is nice to have a place and people to talk to that understand.

Comment by Renee (Elliott's Mommy) on May 10, 2011 at 2:29pm

Has anyone heard of or tried Nioxin
Follicle Booster? My son's hairdresser at Sports clips gave me a sample today. My pediatric dermatologist took my son off the topical steroids because they were not doing anything. He told me I could keep him on Rogaine if I wanted. I stopped that because it wasn't making the hair loss patches grow. Even if I used a Q-Tip or cotton ball the solution would drip and he would just get hair where we didn't want it. I am still waiting for the line of fuzz to go away from my son's back. He looks like a little Sasquatch. At least he's growing hair somewhere, haha.

Comment by andrea leclerc on April 22, 2011 at 12:52pm

My daughter is 7 years old with alopecia areata, looking for kids and or support groups in our area. We live in newport beach, ca if anyone knows anything please let me know!!

Comment by TONYA HATCHEL on April 16, 2011 at 11:07pm

cindy- bless his heart, that is just terrible! you done the right thing, that is so sad that she was so uneducated and practicing medicine. Im not sure about when we are all going to get together, but i will let u know. im going to try and find all the kids i can in Tn and surrounding area. the more the better. i am going to see if the childrens alopecia project and NAAF can help also. Ill need all the help i can get to get the word out. we are so excited to! maybe we can plan a bowling trip or something fun for the kids.

Comment by Cindy (Duncan's Mom) on April 16, 2011 at 9:19pm

I Agee about lack of awareness. It actually is better today than five years ago though. We actually had a nurse practioner at a walk-in clinic that refused to see my little guy once for a strep tests because she thought something bad was wrong with him. I explained the condition, but she still refused. I called the corporate office and demanded that they educate their providers on alopecia areata. Talk about making Duncan feel like he was too different! When are you all thinking about trying to get together? We are excited! Have a blessed weekend!

Comment by TONYA HATCHEL on April 16, 2011 at 6:16pm

Lisa & Cindy- It is so great to find parents who can relate to what we are going through. I first noticed Payton had a small round bald place when he was on the four wheeler and the wind blew his hair. I ran over to him and could not believe it. I took him to the dr the next day, they did a cbc and checked his thyroid everything came back normal. He told us it was alopecia and was very common. I just could not believe it was common because i had never heard of it! He then referred us to a dermatologist and our first appt. was set for three weeks away. In just a couple days Paytons hair was falling out by the handfuls. I called the dermatologist pleading they see him right away. They seen him the next day and he said the same thing. I could not believe it, how have i never heard of this. I have done so much research and awareness needs to be raised. I knew it would not be long till Payton was teased at school, and i prepared him for this. After the first hurtful remarks were made i worked with the guidance counselor and vice principle and we met with the whole third grade. They were very attentive and asked some very good questions. It seemed to have helped. But I agree the stares from adults really gets to me and Payton. We NEED to get something in TN for our kids, i think it would be wonderful! thank you so very much!!

Comment by Cindy (Duncan's Mom) on April 16, 2011 at 1:42pm

Lisa, Duncan first reacted that way of not wanting to meet others with alopecia. He is now okay with. I think it is important for him not to feel like he is the only one. I am excited about meeting you and Tonya and your children!

Comment by Lisa on April 16, 2011 at 11:24am

Hi, Tonya and Cindy! We r in Nashville, and would love to connect...my daughter is 10 and was diagnosed in December..it's happened so fast, it's unreal sometimes. She's got a great headband with hair piece and just deals with it...went to the dermatologist last week at Vanderbilt..(a different one) to have some bloodwork done just to rule out thyroid, anemia, etc...have some more steroid foam to try to start using, and we just take it a day at a time. She knows no other kids with alopecia, nor does she really think it's great that I'm looking for some!...lol...anyway, would love to chat...lisa :)

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