My 5yr old daughter was diagnosed with alopecia and Dr. pretty much gave me no hope

Once he gave me diagnoses i started to ask for treatments however he pretty much advised me on wigs.To be honest i didnt know what questions to ask can their be alternatives etc? her father has Universal Alopecia. Im guessing thats why dr. pretty much said its heriditary and no guarentees in treatments, thats it..to be honest i didnt know what to say or do? What to ask? So, they have my daughter on Fluocinonide Topical solution.Has anyone used this product? Has anyone gotten results? I read a blog that someone had also treated younger children with Rogaine. I was told Rogaine was for adults not for children my daughters age. Every time i read sites or related blogs i read about how there is limited ointments for 5yr olds and the ones that are do not do much for hair regrowth. I have only used this ointment for a month,and i see more n more hair fall i feel like i should abandon ship n use something else asap to keep whatever hair she has. My daughter is so scared. I tell her everyday how beautiful she is with or without hair but to a 5 yr old thats bin in school since 3yrs of age she is already worried of being different from the other children. I dont know what to do where to go. Single mom trying to hold it together, but as healthy as many say this illness is, which is great dont get me wrong im so blessed to have my babygirl, it doesnt make things any easier to a 5 yr old exploring the world around her and in her princess stage,scared of going completely bald and having to go to school. I read so much about wigs but older kids, then other 2 sites that supply it free, is from ages 6 and up, denied- in NY cuz she doesnt meet the age requirements.WTF? is that about? She still needs to go out in the world and deal with people. Maybe looking for a group she can meet with of 5-6 pre schoolers dealing with same issue so she knows she isnt alone. I looked into getting her a psychologist so she can emotionally deal with this however they have an age cut off too. My 5 yr old talks to people as an adult, i guess as a single mom i spoke to her as a person and she acts alot older than 5. She doesnt eat healthy at all and after reading about the nutrition part, not enuf vitamins or Iron, im looking into checking in with an allergist to see if something triggered it at home. Im looking for anything and everything. However, her father gave up n just advised me to deal with it? I guess cuz he has had it all his life, but then he is always negative bout everything. Im just trying to find alternatives, treatments that actually work, and because she has never eatin healthy wenever she stays weeknds with dad, that it can also effect hairloss?~ Am i in denial? Or can i find hope in other treatments? I just cant sit there and have my 5 yr old handle this best way she can! Is it wrong to look for hope in every area, whther its meds, nutrician, herbs,natural ointments? Everyday just watching more n more hair fall, is like not being able to swallow because i see how its affecting her. Any and all advice is what im lookin for.Just trying to keep it together!

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Replies to This Discussion

Permalink Reply by JEANETTE on August 15, 2014 at 3:08pm

I tried fluocinonide and it never worked for my Jazzy. I saw her eyelashes and eyebrows started growing in when I started to make her health shakes of few leaves of  spinach and kale...bananas, strawberries and shot of vitamins in the bullet. The problem is she goes thru numerous care takers that they change her eating habits again and again...that her eyebrows and lashes fell off...I have hope...I have gotten better outcomes than the meds!

Permalink Reply by Daphne on August 21, 2014 at 8:24pm

My seven year old daughters journey with Alopecia started exactly a year ago. By Christmas, she had lost 80 percent of her hair, and by February it was all gone. She was fortunate to still keep her eyebrows and eyelashes. We have been applying cream from the dermatologist, but more importantly in my opinion, we have been going to a naturopath since October. After extensive hair, live blood tests, and food sensitivity testing, the naturopath has eliminated gluten, dairy and eggs from her diet. Gluten being the key in my opinion, as well as added B12, Zinc and a few other minerals. We started to notice peach fuzz by the middle of March. She now has short, dark hair covering 80 percent of her head, and the few patches that are left, are beginning to fill in. It has only been a year since our journey began, and we are well aware, this might be a life long process, but we are thrilled with the progress we have seen thus far. We had done a great deal of research on gluten and really feel for us, this has been an avenue worth pursuing.

Permalink Reply by ChristiYahna'sMama on May 22, 2015 at 11:30am

My daughter is currently 4 and will be 5 in July. She too is currently having a hard time as she is losing more an more hair. I have caught her in the mirror trying to cover her bald spots with what hair she has and it kills me. I tell her everyday that she is beautiful but she still worries that other kids will make fun of her. we used the topical cream when she was first diagnosed a few years ago and although it did make hair grow a little bit in her bald areas, she complained that it burned and she would try when I used it so we stopped. As far as I know other than that cream their aren't any other treatments for our little girls at this time. I myself am a single mother as well and just recently found out that her father has a form of alopecia himself but nowhere near as severe. My daughter's father has 5kids and only my daughter has it, I'm not sure why that is but he wants me to start using the cream on her again but I don't feel like putting her in any unnecessary pain is the answer. Even if the cream does help some of the hair grow back it is my understanding that she will still continue to lose hair regardless until her body decides otherwise so why make her suffer physically as well as emotionally? This is my first experience dealing with this and I don't have all the answers and am trying to find her and I a support group in our area that can help, no luck so far. But in regards to the whole nutrition thing I don't know if that has a direct affect on their alopecia or not. My daughter loves fruits and veggies and eats plenty every day and still loses her hair like crazy I wish we knew more and could better help our kids but the truth is doctors just don't know enough about it and new parents dealing with it are clueless.. :(

Permalink Reply by Debra (twin mom) on June 10, 2015 at 10:17pm
I have done lots of research and trust our derm. To the contrary of what it found on the internwt, there is still no known cause, cure, or understanding of the behavior pattern. While there are clinical trials being conducted, I would not trust any of them on my boys. So while many might feel like they are not getting any answers....there really aren't any. This is a condition....not a disease. My personal opinion is just let them be. Many of these controversial options are outright painful to children. So why would we want our kids to hurt....when alopecia is not physically hurting them to begin with?

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