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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!
Replies to This Discussion
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Permalink Reply by Leenda on
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My son was diagnosed nearly a year ago when he was 7. I, too, felt like the doctors didn't have any answers or options for him besides the steroid ointments. Unfortunately, those didn't do much for his hair growth even though i was religiously putting it on twice a day. I looked up every option there was from herbal to spiritual; anything and everything. His poor hair just kept falling and falling. I finally came to a point where I accepted what he had. Instead of trying to find a cure for his alopecia, I focused on making sure he knew how handsome he was with or without hair and making sure I was helping him build his confidence as a little man. His hair did eventually grow back but just a few weeks ago we discovered a quarter siZed area of baldness so here we go again! I had my moment of heartbreak and cried but now I'm ready to be his number one cheerleader again:) it definitely seems like a life long journey; I just hope to help build him into a strong man so he will have the courage to tackle life with or without hair:)
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Permalink Reply by CMG2 on
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I read your story Leenda- how is your son doing now. I have twins one with AU and one with AA.
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I am so sorry you and your daughter have to go through this.I can understand how diff it is,I couldn't stop crying when my 7year old lost some of her hair for the second time.The first time was when she was 1 and it was in patches.The second time was last year and the doctor told us to be ready as she will probably lose it all.With my little one I realized it was stress triggering it.We put the cream on every night,even changed schools(first day we met one teacher in her school with Alopecia), and tried to build a better relationship with her father so I can remove as much stress from her life.It's hard to believe kids have so much stress nowadays at such a young age.I also started giving her some vitamin D as well.We talked as much as we could about it to get her ready but her hair started growing back.For how long and what's going to happen ,we don't know.We can only hope for the best .I really hope you and your little girl stay strong through all this.
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Permalink Reply by JEANETTE on
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Thank you so much for sharing your experiences, I guess im still in the early stages of not handeling it to well, especially considering how long n thick her hair was. Im crying it all out at work,so wen im home for her im good to go with a smile and always letting her know shes beautiful. I guess I need to work on accepting it sooner or later! than k you Leenda. @Ruxi, thank you so much for still letting me hang on to hope with your story, so far from what I read on all blogs its a matter of time..whether it comes or goes, I need to stay strong for her and make sure shes strong enuf to fight whatever comes her way. God bless you both and god bless you n ur loved ones~
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Permalink Reply by Jennifer on
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My daughter was diagnosed at 28 months old. I never handled it well. We have been on many topical ointments and were successful with them. However, it would take about 8 to 10 weeks to notice hair and by the time it happened, we had a new spot. Luckily, not sure if this is the right word, but her hair would fall out on the top, then the bottom, sides, etc. So it was never in the same place - so we were able to use headbands to cover the front - which was our most problematic area. On the positive side, we are now 2.5 years in and have had a lot of loss, mixed emotions, but a fantastic pediatric dermatologist who is amazing! There is hope - my daughter has not had any loss since December 2012 and has almost a full head of hair. We still use our topical steriods daily - and throughout her whole head. Not sure if it is the steriods or we are in remission - but I will take it. Although it breaks my heart to know that she can lose again and this time we will have to explain it to her - as she will be 5 in August and starting kindergarten.
Good luck - it is not easy!
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Thank you Jennifer, i truly appreciate you sharing with me. The part that kills me is not knowing and will it work, or not! I see patience is key when dealing with alopecia, and patience is something i never had. I wanted results last month. Reality is patience is something i need to work on cuz last thing i wanna do is jump from cream to cream, praying and hoping for a miracle, and i know it times times to see results. Still working on relaxing and sticking to one treatment. Wish i knew however which ones had a higher percentage rate of effectiveness over the treatments that waste my time and money?! Is there such a page that do evaluations, statistics on what actually works and what doesnt?
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For about a year and a half we used a lotion, but switched last july to foam - it is very expensive (about $300 per bottle) but i love the way it coats and does not leave my daughter's hair sticky. We also use two levels - one super strong one - for three days, and a lesser one for four days.
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Permalink Reply by Angie on
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Don't ever lose hope. Since so much of this condition is unknown, it means that something at anytime could make the difference. Concentrate on the immune system (since this is auto-immune)to be as healthy and natural as possible. My son was diagnosed at 18 mos and lost all of it by age 3 (including eyebrows and eyelashes). He is six now and has lots of fuzz. His eczema and digestive issues have cleared up. We are just patiently waiting for his hair to come back (if it wants to...no pressure).
Angie
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Hi Jennifier, thanks for the info, whats the name of the foam your using?
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Thank you so much angie, that is defin bin a problm since she was born. her digestive system, cuz she doesnt eat healthy, when she is in the care of others which sucks. So i spoke to all care takers involved including daddy, that gives in too easily, and advised them we all need to be on same page regarding a healthy lifestyle of fruits n veggies!
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We have had my daughter tested for every type of disease and everything comes back normal. She has no digestive issues. She is not the best eater, but luckily does not eat junk food. Will check on the foam names - and let you know.
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