How did you make out at Duke?

Good luck!! When is your apt? Please let me know how it goes and write anytime...I am going through it too..Just be patient. Where do you live? CAP is having a conference in PA this Aug. It maybe something you'd like to attend. It will all be geared towards kids. It does not hurt to contact them. You never know, there could be another child in your area to connect with...Cindy

Well, the fuzz takes some time to change color so watch it. the more fuzz you see the better..Sam gets a dry flaky scalp too and i use a steriod cream on her head when it gets real bad. Feel free to write any time with questions..It is great that you are referred to a doctor that access and more knowledge of other treatments..Did you contact CAP? Cindy

Hi, We started the process in December 2007. Let me tell you my story so far to put you at ease..Trust me it will help you..Sam had her arm sensitized in Nov, broke out in the rash a few days later. 10 days later the spot blistered and it was painful. When we saw the doc two weeks later we had to put all these creams on to heal her arm before touching the scalp. We saw the doctor about every 2 weeks for about 3 months. After the new year in Jan 2008 the doctor put .02% on a quarter size area of the scalp. The spot got the rash and then her arm picked up the signal and got red too. We had to wait almost a month before they would try it again. This time a smaller spot. She did fine and then about 3 week later they let us do it again and again it was a very small spot. We gradually increased the area size. By March of 08 we were on 1x weekly treatments and I did it on Fri so she would have the weekend to recover. Sam wears a wig..In April or May we increased to twice a week. The end of May she broke out in a full body rash. Took her to the doctor and she said the bad news is your have a rash, but the good news is she has seen great results when the body responds this way. We don't want it to, but it is. She told Sam that her body was mad her for making it do something it does not want to. Low and behold a month later peach Fuzz. That was June. By Sept the hair started growing in color and more and more hair was coming in. Fastfoward a year later and she has a layer of hair that is getting thicker on about 70% of her scalp. She still gets an occaisonal rash on her arms or legs, but the dr is fine with it and the bald areas are filling in slowly. My point is to stick with it. In May the doctor cut the dose in half to .01% and I know do about half her scalp or a little less. I basically put the stuff on in the bald areas. I write everything down and once her hair started growing I started taking monthly pics. The pics help me see the change i her month to month...I have posted a few pics of different stages, but not every month. Please don't get discouraged. I was giving it a good 6-8 months before deciding if I'd continue. Be a bit patient and it may work..Where do you live? My daughter goes to Childrens Hospital in Boston and I have a lot of faith in her doctor. I took her to 3 doctors before I found a doctor who would be more aggressive. I refuse to do cortisone shots or anything related to that. I know of people who have used Rogaine. I think it is harmless. I also give SAm aloe vera juice, biotin and cod liver oil and multi-v..Good luck with it all..Please stay in touch.Cindy

Hi KL..My daughter is also doing squaric acid..It has been a year and she started it and her hair started growing about 5 months later. The pictures on my page are different stages of regrowth. Her most recent pic taken int he purple. I would love to hear how thing are going for you and exchange our experience. We apply it twice a week at home and use .001, but we started at a higher dose and had to decrease it due to her bodies reaction. Sam handles it all very well and tolerates the itchy scalp and everything else. I would love to hear how it is going for you. I have not met anyone with a child going through it..I am hoping her brows and lashes will come soon. we saw some brows in the fall, but they did not stay..Please write soon!
cindy

Hi KL..Welcome..My name is Cindy and my 7 yr old has Alopecia. How is your child doing?

Thanks for asking about the book -- I think you will really like it ! By the way, "If Your Hair Falls Out, Keep Dancing!" is now a finalist for ForeWord Magazine's 2008 Book of the Year, a national award!
There's a link on this site, under "Bookshelf," or you can get it at Amazon.com or any other online book store. If you want to get it from your local bookstore, they can order it for you. Will you let me know how you like it? Big hugs!