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Two year old with Alopecia
My two year old has aggressive alopecia areata. I am at a loss and trying any sort of treatment possibilities. Please let me know ANY methods that you have tried on a two year old which have worked. We have no family history of alopecia. I do not believe there is no cure. I dont understand how everyone just accepts the easy answer that there is no cure. there just has to be. OR if there is no permanent cure there must be some sort of treatment that works. So, please let me know of what has worked and how We as a collective group can pressure organizations to find a cure. I understand that no one is dying but the psychological aspect is devastating. I think that the organizations which make wigs for kids are cute but that is not solving the problem - in my mind it is only helping the fact that there is no research in this area. I
Replies to This Discussion
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Permalink Reply by Alo-mom on
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As the mother of a daughter with Alopecia I suggest you contact the National Alopecia Areata Foundation. They will provide resources and answers to the questions you are asking. Find them on the web, call them and they will be happy to share what is being done as far as the research and clinical trials etc.. Also they have a conference this year in Phoenix and it would be a good thing if you could attend. We do not accept the easy answers and this organization is spear heading this mission for all of us. We are not standing still but talking to the FDA about medications that are in clinical trials and what emotional effects the condition has on the person as well as the family and friends. I hope this information was helpful. They also have information on how parents should address this condition with other families and the schools. Best of luck.
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Permalink Reply by Hope4mySON on
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Yes, I looked into it and the Form 990 for 2016 only shows $400 K in grants in medical research- in this day and age that is nothing. $400 K is not getting anyone a cure. I dont understand why this is disease is so poorly funded. I know im sounding so harsh I really just want the best for my child. There needs to be a better way of raising funds and getting the $ to finding treatments
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In a few years maybe there will be pediatric use for some biologics... researchers are looking into it.
It's underfunded and we are missing data. The community is better than it was... 10 years ago even doctors were looking at us like we were freak.
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My son responded well to narrowband uvb (search my posts here) when he was 5.
Work on psychological treatment for now, it’s the most important and really the only thing guaranteed to help. Kids don’t notice differences in appearance, so don’t put the idea in his head that it’s a big deal
When he’s old enough to take the good drugs they will be ready for alopecia treatment
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Hi Chris is this similar to a phototherapy booth for psoriasis. We actually have one for my husbands psoriasis. The dr was concerned abt goggles that no guarantee two year old would keep it on. I actuaally proposed my husband to just go in w him? I'll push again next visit
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good luck! the best (only) advice is to try not to freak out about it. some people respond to some treatment, some respond to other, some don't respond. some kids grow out of it. we let my son get really patchy before we did narrowband uvb, in hindsight he would have looked better if we'd just shaved it all down.
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