At 9:37am on February 23, 2009, Paula Bowman said…
Hi, it's nice to meet you and welcome to alpecia world. Ray's started when he was 3. I tried the creams and stuff, but for Ray nothing worked. I always tell Ray theres a reason for it and love he just the way he is. Since I've been on this side, it's helped Ray a whole lot. Im hoping to take him to the CAP meeting in Aug. So he can be around other kids with alpecia. Great to meet you and Hayden.
Hi Monique! Hayden is adorable! I wouldn't do a thing as far as treatments go. We tried a steroid cream on Ella's head when she was first diagnosed at 7 months and all it did was thin the skin on her scalp. I probably only used the cream for a week and decided that was enough, it wasn't worth it to me. There is no cure for alopecia, and until there is I feel there is no point subjecting a child to unnecessary treatments. Yeah, some kids have regrowth, but it can all fall out again too. I think that would be more devastating. As I mentioned in my bio, I truly feel how a parent reacts will determine how the child will come through all this. I have personally decided that there is nothing wrong with Ella, so what's there to treat. She is a very happy kindergartener and she knows she looks different, but she also knows that she's beautiful. She never covers her head up, because she has grown up knowing there is nothing to hide.
I'm not sure where you are located, but you may want to look into Children's Alopecia Project. They are a fantastic group focused just on kids with alopecia. They will be having their first conference this August in Philadelphia and we will definitely be attending. Ella really could care less about it, but I feel it's good for her to see other kids that look like her just to know that she's not the only one. Eventually, as she gets older, I'm sure she'll want support from kids her age. Ok, enough rambling, I hope this helps some. Good luck and I hope to meet some day.
Hi Monique! Connor was having steady regrowth but started to slowly lose starting in July- He still has about 50% left. We only do Moducare chewable -it is a plant supplement(no side effects) and sometimes the Phyto brand serum-also natural. He also has a bit of white in the balding areas-I am hoping some will regrow before more falls out-but really, who knows? So unpredictable this alopecia!
I hope you don't think I am butting in but, I saw your discussion that you posted so I copied and pasted??? that doesn't sound right..hahah...and posted it as a blog...so check out the blogs to see if any one responds...
I haven't written in a while and just wanted to touch bases. We took Helen for the registry. She donated her blood to the study. (Very brave!). The head doctor said our pediatric dermatologist was good and thought her suggested treatments were fine. This was a relief to hear- doctors vary so much it is hard to know if you have a good one. We went back for her third and last steroid shot a couple weeks ago. Now we are suppose to continue with daily sun exposure and rogaine (2x day). We go back in August for them to monitor her progress. She has had some regrowth of white patches and peach fuzz . Some parts are still bare. It is a slow process. Did you decide to try anything else with Hayden?
Hi Monique,
I think my book can help you. I have a chapter on "Doctors and Drugs" that explain all the different treatments and what you can expect. There's also a chapter about kids with alopecia. The book is called, "If Your Hair Falls Out, Keep Dancing!" and you can get it by clicking the web site on my page. Good luck and take care of the wonderful kiddies...
LeslieAnn
HI! Connor's hair is still coming in- I keep watching for it to start falling out-a little paranoid,but I guess I just don't want to get my hopes up-I'll post a new pic soon-We are using Phyto brand hair serum($50 at Sephora) and a chewable plant sterol called Moducare-bought from Vitacost.com-not sure if it is helping but it is natural with o side effects,and he has about 60% of his head covered with hair-talk to you soon
Hi Monique,
Thanks for adding me as a friend. Hayden is absolutely beautiful. Your attitude towards his AA is going to be the biggest factor in how he reacts to it growing up. You asked for what advice you would do if it were us in your position. As a mother, I hope and pray that my children do not get AA. But, if they do, I will definitely NOT be using traditional method treatments. Having gone through the use of oral prednisone as well as cortizone shots and steroid cream on the scalp as a young teen for many years...I feel very strongly that these have all been at the root of the major health and emotional problems that I have been dealing with for the past 12 years. If I could do it over, I would have ran in the other direction. I struggle every day with health issues not related to AA but very likely caused by the treatments I underwent. I would suggest trying anything that has no dangerous side effects and could possibly help him. If he has allergies, look into NAET (www.naet.com) to learn about eliminating them and helping his immune system become stronger. Help him to eat right, exercise, and do relaxation exercises. The only thing that has helped my hair to regrow in the past has seemed to be working on my overall health in a very proactive way. That is, of course, just my opinion and how I will deal with things if by any chance AA shows up in one of my children.
Shannon
Oh they are cute. glad you are here. The funny thing with alopecia is if you have a question to ask here you will get many different answers. Im here if you need any thing just ask.
Oh my Monique I am so happy that you found this site and that I seen it on yours and Sherrys page. I've joined and hopefully we can all learn more about this and support not only you and Hayden, but all the other special ones in this site. You are an awesome Mom and I know you will do well with helping Hayden grow and understand that he is gorgeous not only on the outside but on the inside also. Remember beauty comes from what is inside you. I Love You Guys more than anything and will always be here for you. Love ya Aunt Jan
Hello Monique, My name is Maria and i have a 6yr old daughter who has AU also she lost all her hair when she was 3yrs old. First i want to tell you that your son is absolutley gorgeous, he looks so cute bald, I would recommend you embrace his baldness and tell him how handsome he is everyday. I dont know if you are trying any treatments, myself i dont treat savanna AU, There is No cure for AA, I believe you can try all the treatments you want but it wont grow back until their immune system is ready for it to. I think that is putting more stress on them then they need. I have found alot of parents on this site are trying to treat the AU, instead of just acceping it. Dont get me wrong i wish every one luck with all the diffrent treatments, I do believe if their was a treament out their that would make their hair grow then everyone would be doing it and their wouldnt be so many bald people, I think trying all the stuff is a wait and see kind of thing.
My daughter is comfortable with her hats, her family and friends!! If i knew there was something that was going to make her hair come back i would do it in a heart beat, but i dont want to give her lost hope, makeing her go through treatment after treatment and nothing...I have decided i will let her make that decision....and right now she says "NO". I wish and hope the best for you and Hayden..Maria
Monique,
I called the MD Anderson study/ registry and we will go for an appointment soon- they said it might be possible to be treated by the doctor who heads the study. Seems like she would have a wealth of knowledge and current information. They did say alopecia was definitely genetic but a recessive type of thing. I will let you know what we find out. Lynn
The rogaine is in conjunction with the shots. It is just the over the counter for men. It has tons of warning labels about avoiding use on women, children,etc. I couldn't even bring myself to buy it because it just seemed wrong with all the warnings. My husband had to. We talked extensively with the doctor and she has used it with children and believes that it is safe. The manufacturer just puts the warnings for potential liability reasons. She doesn't seem to have any side effects. As for steroids, we initially had the same hesitancy about using them. She seems fine though and doesn't get sick anymore frequently than before. A friend of mine has had her son on oral steroids for about 8 months ( for something else) and thinks it has actually been great for him. He also doesn't seem to get sick any worse or more often than before. For myself at least, I think I my first reaction is no drugs- I don't even like to take aspirin. But perhaps in some cases it isn't as bad as we imagine. I will know more the next time we go for her last shot. I will ask lots of questions and I guess depending on what happens may or may not seek another doctors opinion. I just wish we would have gone to this one first. The other one seemed to have a wait and see attitude and didn't even recommend a follow-up or to let her know if there were changes, etc. Because of her information we thought there wasn't anything much you could do. That was why we waited so long before trying anything. ( I hope this delay in treatment doesn't prevent it from helping). I wish the doctors would explain more to us all. You might go to another pediatric dermatologist- maybe call the office first to find out how much experience (and success) they have with it before making an appointment or maybe call back to the hospital and see if they can explain better the steroid treatment. Let me know what they say. Monique- thanks for being a part of this site- it is already a help to be speaking to another parent who has a child with it since others don't really understand it quite the same. Lynn
Initially we didn't do anything because the first doctor kind of said there wasn't much you could do and that steroids wouldn't stop it from falling out. We just waited to see what would happen. After waiting for 10 months and seeing no improvement we just recently went to another doctor who said it was important to start treatment right away. She has been working with it for many more years than the first. It is a course of 3 steroid, Kenalog, injections. 1 shot a month in the buttocks and also doing Rogaine ( the OTC for men) twice a day at her suggestion. She said the shots would suppress her immune system slightly and just be careful to try and not be around sick kids. She has done fine and played with others as usual. She was only sick once, a cold, along with me and her sis so not anything unusual. She got over it just like normal. There is slight hair growth on her head in certain spots. We just got the second shot last week so we need to give it more time. This doctor said it was really important to get treatment soon and stressed before the age of 5. She also recommended we have her play outside at least 30 mins a day without any head covering because in her experience the UV exposure has helped growth. I had read someplace ( on the web) that most doctors did not try steroid shots to the scalp with kids because it was too painful. Was your doctor a pediatric dermatologist experienced with alopecia? It is somewhat distressing the idea that different doctors give such different treatment since we trust all of them to know what they are doing and assume it would be a similar course of treatment. Now I wonder if going sooner to this other doctor would have prevented it all from coming out. I will ask about this the next time we go. It might not have impacted it at all but it would make me feel better to know. Has your doctor giving any other suggestions or made appointments for follow-up, monitoring?
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I'm not sure where you are located, but you may want to look into Children's Alopecia Project. They are a fantastic group focused just on kids with alopecia. They will be having their first conference this August in Philadelphia and we will definitely be attending. Ella really could care less about it, but I feel it's good for her to see other kids that look like her just to know that she's not the only one. Eventually, as she gets older, I'm sure she'll want support from kids her age. Ok, enough rambling, I hope this helps some. Good luck and I hope to meet some day.
I haven't written in a while and just wanted to touch bases. We took Helen for the registry. She donated her blood to the study. (Very brave!). The head doctor said our pediatric dermatologist was good and thought her suggested treatments were fine. This was a relief to hear- doctors vary so much it is hard to know if you have a good one. We went back for her third and last steroid shot a couple weeks ago. Now we are suppose to continue with daily sun exposure and rogaine (2x day). We go back in August for them to monitor her progress. She has had some regrowth of white patches and peach fuzz . Some parts are still bare. It is a slow process. Did you decide to try anything else with Hayden?
I think my book can help you. I have a chapter on "Doctors and Drugs" that explain all the different treatments and what you can expect. There's also a chapter about kids with alopecia. The book is called, "If Your Hair Falls Out, Keep Dancing!" and you can get it by clicking the web site on my page. Good luck and take care of the wonderful kiddies...
LeslieAnn
I would really like it if Hayden was part of my project...a Mission for Education and UNDERSTANDING!
Please Read about it under my forumn on my page. If you are interested, email me at bbibby_org@yahoo.com
www.bbibby.org
Take Care
Thanks for adding me as a friend. Hayden is absolutely beautiful. Your attitude towards his AA is going to be the biggest factor in how he reacts to it growing up. You asked for what advice you would do if it were us in your position. As a mother, I hope and pray that my children do not get AA. But, if they do, I will definitely NOT be using traditional method treatments. Having gone through the use of oral prednisone as well as cortizone shots and steroid cream on the scalp as a young teen for many years...I feel very strongly that these have all been at the root of the major health and emotional problems that I have been dealing with for the past 12 years. If I could do it over, I would have ran in the other direction. I struggle every day with health issues not related to AA but very likely caused by the treatments I underwent. I would suggest trying anything that has no dangerous side effects and could possibly help him. If he has allergies, look into NAET (www.naet.com) to learn about eliminating them and helping his immune system become stronger. Help him to eat right, exercise, and do relaxation exercises. The only thing that has helped my hair to regrow in the past has seemed to be working on my overall health in a very proactive way. That is, of course, just my opinion and how I will deal with things if by any chance AA shows up in one of my children.
Shannon
My daughter is comfortable with her hats, her family and friends!! If i knew there was something that was going to make her hair come back i would do it in a heart beat, but i dont want to give her lost hope, makeing her go through treatment after treatment and nothing...I have decided i will let her make that decision....and right now she says "NO". I wish and hope the best for you and Hayden..Maria
I called the MD Anderson study/ registry and we will go for an appointment soon- they said it might be possible to be treated by the doctor who heads the study. Seems like she would have a wealth of knowledge and current information. They did say alopecia was definitely genetic but a recessive type of thing. I will let you know what we find out. Lynn
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