Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on November 26, 2009 at 12:34pm

Mr. Gonen is all advertising and no proof. Buyer beware and be smart.

Give systemic steroid and hair can regrow. At what cost? I would never give it to my own child to grow hair. Stop the steroid the hair will stop growing....unless the AA was going to turn itself off anyway. In which case the hair would regrow had nothing been done at all.

When some doctors ( and even some dermatologists) sometimes cave in to pressure from parents to " do something..ANYTHING" they will prescribe things like systemic steroids. They are motivated to give the stressed parent something to do to 1) keep them busy and feeling like they are doing something and 2) can say we've tried everything that can be used.

All the most respected clinicians are writing the same thing over and over. You can regrow hair at least temporarily, but the trade offs of systemic steroid are a risk not to be taken lightly.

The other side issue is having a strategy for rational discussion with the ex.

Thea
www.baldgirlsdolunch.org

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Permalink Reply by Jess (Jordyn's Mom) on November 26, 2009 at 12:56pm

My daughter Jordyn goes to a pediatric dermatologist at Johns Hopkins in baltimore and he mentioned that some doctors use prednisone for hair regrowth. He also stated that is was a temporary thing..The side effects of prednisone are horrible take it from me a person with severe asthma and breathing problems it makes me ill and gain weight could you imagine what it would do for a child..Some parents are so focused on the cosmetic look of there child that they dont stop to think that some of the things doctors want to "try" arent good in the long run, they will do anything for there child to look normal. Jordyn has had AA since the age of 2 and I personally think it has made her a stronger person. Parents of children with AA need to be more concerned on helping there child cope with the AA and explaining to them that this is something that comes and goes, and that maybe they will never have regrowth. It sounds harsh but those are the facts with any form of Alopecia. I have focused my sights making Jordyn a stronger little girl so that she blossoms into a even stronger woman. Some parents also need to be greatful that there child is not Ill and that its just hair loss and nothing more severe. Alopecia is a disease that my daughter lives with everyday and fromher blogs that she posts on here it doesnt seem to bother her at all that she doesnt have hair and if it doesnt bother her it sure doesnt bother me..I love my baby for who she is a smart beautiful bald little girl!! And Lorraine it sounds to me that your husband is one that is focusing on Sammy's looks rather than thinking of the long term ill effects of prednisone..If Sammy is coping well with the AA then let nature take its course. With AA no one knows what the future holds as far as hair regrowth. There is nothing out today that is a cure or a tremendous help for alopecia..If so there wouldnt be a need for this wonderful place we call Alopecia World!!

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Permalink Reply by Loraine and Sammy on November 26, 2009 at 4:54pm

Thank you all so much for your responses - these all go along with what I firmly believe and I will stand firm on it. Helping Sammy continue to cope is my priority - she is happy, healthy and beautiful and I'm not prepared to give medication which is going to be to the detriment of her well being. I really am so glad to have found ALopecia World, the support from you all is priceless. I will keep in touch and post some photos of my girl.

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Permalink Reply by Lauren Simpson on December 4, 2009 at 3:03am

I would defintely not reccommend going on a steriod treatment. i went on one last year and i wish i never did it. it only provided a temporary solution with really bad side affects. i deveped depression,I gained a lot of weight, my face became puffy, the cortizone steriod i was getting thinned my skin and i now have very noticable strech marks covering my hips butt, thighs, and calfs,that will be there the rest of my life. And overall i grew my hair back, but I eventually built up a tolerance to the steriod and i lost all my hair again. now im completly bald and wear a wig. I wish i could go back and choose not to put harsh medicines in my body.

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Permalink Reply by Lee on December 4, 2009 at 3:40am

I don't like prednisone either. I had to take it recently for breathing problems, and my whole body ached because of it. Its a temp fix to regrow hair. You cant stay on prednisone for a long period of time. I was also told by my Dr. that it can cause diabetes and high blood pressure.

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Permalink Reply by Jaime Murphy on December 12, 2009 at 11:34pm

I don't know if this helps but I was on a steroid pill for an extremely bad sinus infection a few years ago, and while I did notice that my scalp got super itchy and there was a small bit (hardly noticeable, but I could feel it) of regrowth it fell out/stopped growing once the steroid was out of my system. I do have to say the steroid does not have so many good side effects, one of which is mood changes. I am normally a happy go lucky person who doesn't get pushed to the edge too easily, and I was constantly snapping at people. And I was only on it for about 10 days!

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Permalink Reply by Loraine and Sammy on December 12, 2009 at 11:45pm

thanks Jamie - that was one of the side effects I had heard about and really didnt want to be responsible for making that change in Sammy - the very limited and only potential chances of it helping really dont seem worth the negatives. ALl the best

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Permalink Reply by Dielle on December 29, 2009 at 1:39am

At this point in time there is no miracle cure that is going to permanently get rid of her alopecia, and all the treatments currently available are like everyone said only temporary fixes that might not even work. Your gut instinct is totally correct in not wanting to put her through it. I personally have had alopecia since I was 12 and even at that age I knew that I didn't want to do any treatment because the side-effects scared me. My parents gave me the option, but I know they were glad I opted not to try all of these treatments that the doctors try to push on us. I personally went to the leading doctor in the world in alopecia a year ago and he said that while they are making progress in their research none of the treatments available will guarantee hair regrowth and that all of the treatments right now stop working as soon as you take them and all of them have some kind of side effect. Steroids are extremely dangerous pills that doctors generally don't even want adults to be on long term because they can cause organ damage and a lot of other serious side effects, so I think you need to find yourself a new dermatologist if they would even suggest somethign like that for a 10 year old. We all wish we had our hair back and we all have different lengths that we are willing to go to so it really is a personal decision but if you don't feel comfortable with it then I wouldn't do it. If you feel like your daughter is mature enough for you to be able to discuss it with her then you could try that and see what she really wants but only if you think she can fully understand the risks.

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