Replies to This Discussion

Permalink Reply by Monique (Mom) on August 19, 2009 at 10:35am

I know of a parent that is using it now for her daughter. She did not say whether it scared or not. Is it working?

Permalink Reply by Debbie Lopas on August 19, 2009 at 11:14am

My son is not using squaric acid, he only got sensitized to it because we were thinking about trying it. Now that I have seen the scarring it has left on his arm, I am afraid to use it on his head. He has been getting DCPC treatments for several months with no hair growth so far.

Permalink Reply by Cindy on August 25, 2009 at 7:56pm

I checked Samantha's arm and the mark is gone..But, I do recall seeing it for sometime and wondering if it would go away..Please email me if I can be of any help..Samantha is having great luck with it..Her eyebrows are growing now..Cindy

Permalink Reply by Cindy on August 23, 2009 at 4:03pm

Hi Debbie, I think I am the mom that Monique is referring to. Samantha has been using the squaric acid for a year and a half now and yes it left a small mark where the sensitization was. I do want to say after some time it is gone. The mark on the arm has no barring on the treated area on the scalp. Sam has no marks on her head. You will get a rash on the treated area that will last a few days, but that is it. If you would like to talk to me about the treatment I am happy to share our experience and answer any questions. Monique can vouch that my daughter has nearly a complete head of hair. Sam just had her first haircut in two years..Cindy

Permalink Reply by Jean on September 1, 2009 at 8:26pm

Cindy,
My son has just started this treatment as highly recommended by Dr. Vera Price in San Francisco. At what age did your daughter develop alopecia, and how much did she loose, how long after starting DCPC did you start to see regrowth ?
My son at age 15 started with areata and went totalis by October '08. He has gone through the shots in his head eyebrows we had wigs made for him... He is done with most of the treatments except he is letting me apply the DCPC once per week.
I'd be most curious to hear more about your daughter, it is so encouraging to hear of her progress. Regardless of what path his alopecia will take it's very good information for all of us parents.
Thank you Jean

Permalink Reply by Jean on September 1, 2009 at 8:27pm

Also he has had no scarring...

Permalink Reply by Cindy on September 6, 2009 at 7:32pm

Hi Jean, Samantha is not doing DCP. She is doing SADBE. Samantha is 7.5 yr old. She was diagnosed at age 5 and by age 6 she was completely bald and got her first wig. We took her to more then one derm for help. Sam did not respond to the topical stuff. I took her to Boston Childrens' Hospital and the doctor recommend the squaric acid. She started it just before her 6th birthday. Samantha blistered 10 days after the skin test and we had to wait several weeks before the doctor would start on her scalp. The sensitized spot began to get a rash after the first treatment and the spot started to bubble, but never blistered. We waited again several weeks for application 2. The area treated were very small in size and we gradually increased the size. By March 08 Samantha was on weekly treatments of a silver dollar size spot and we worked up to a quarter of a scalp at a time. By May we were applying 2 times a week a quarter size. In May she broke out in a full body rash and we stopped for a month. A month later, in June her hair started growing and we decreased the dosage. By June 08 her hair started growing on the scalp only. Now just over a year letter you can see Sam has most of her back. All in all it took 6 months from the time we started the process until we saw growth and she did not actively get treated weekly till Mid March. Right now she has a few hidden spots that are dime size and her eyebrows are starting to come in. We treated her scalp 3 times a week and we now do cortisone cream on her eyebrows weekends only. She occasionally gets a rash on her arm or legs and it clears up quickly with some cream. I keep Aquaphor in the Nurses office in case she needs it at school. Sam goes in spurts of mild rashes, but they are small, like spot rashes on a part of her leg or arm. She is no longer wearing a wig. I just started using Nixon Shampoo and Conditioner and I give her various vitamins. How is your son doing Jean? Please write me if you have any questions.

Permalink Reply by Jennifer on September 7, 2009 at 3:50pm

In that year that she went from having all of her hair to having none, did you see changes in her hair texture? Or did she just go from having hair to having none? Did she lose it all in patches or did it thin? I'm curious as to what to expect. I worry he is just going to wake up one day and have no hair. We watch constantly. We see none come out in the bath, we search the towel when we dry his head. I search his bed and never see anything. I mean other than the few random hairs here and there, but it seems to be less than all the hair I lose in a day which is normal/ My son has 2 patches right now, and we have no idea if this will be it. I'm trying to prepare for the worst. The doc says he is going to be fine, but they never really know.

Permalink Reply by Cindy on September 8, 2009 at 12:04am

Hi Jennifer, Sam's hair fell out in patches and I would comb her hair and it came out like butter. I just did not want to comb it b/c I knew it would come out like big lint balls. Her hair thinned and it was in the shower on her bed on her. There was no stopping it. Right now she has most of hair back, but I am so pariond that it is going to come out again. She is one area that has hair with a small spot that is just starting to fill in. I keep thinking that the spot is going to grow b/c it is thin. But, i see no hair anywhere. when i do see a strand here or there I try to keep in mind that her hair has to cycle so it will fall out and regrow like everyone elses. Her texture did not change, it just slowly thinned and formed patches. Good luck. This disease has a lot of unknowns and the doctors can't tell what the outcome will be. I was always upfront and honest with my daughter so she was not shocked. Even today we tell her it can fall out again and she understands. I suggest giving your son all the facts so there are no surprises. Good luck!