Replies to This Discussion

Permalink Reply by Joshua on January 29, 2011 at 3:27am

Hi Jen,

I'm sorry to hear about your daugther's diagnosis and its always frustrating for a child to endure alopecia. I can safely say that the only predictable thing about alopecia is being unpredictable. I've known people with spontaneous regrowth with absolutely no treatment at all and many of them like me, even after treatment there's no significant improvement.

My advice is that as long as your daugther is comfortable, do not shut down all options but be aware the disadvantages of each option carefully. Always hold on to the principle that "There is NO CURE for alopecia YET" but it doesnt mean that "There is NO CURE for alopecia FOREVER".

As in support and parenting, I am not qualified to comment to give advice but I am confident that you're the best mum your daugther can ever have, so keep up the good work.

I have written several blogs on alopecia areata. You're welcome to read it online at my blog...

http://joshuablogspace.blogspot.com

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Permalink Reply by Joshua on January 29, 2011 at 3:42am

and answers to your questions:

1. Tiny/ fine/ weak/ broken hair as you observed is usually normal in a patient diagnosed with alopecia areata. The hair development is however "arrested" or "stunted" by our own WBC (Lymphocytes that aggregates around the hair follicle). That is the reason why many scientist and medical professionals believe AA as an auto-immune condition.

2. The only predictable thing about alopecia is unpredictable. I have alopecia since 1 or 2, then after treatment. I had a full head of hair until I was 10, treatment again. Then, my alopecia only confined to two spots which can be covered my hair (I use to keep long hair) and until 17...95% fell out in about 3 months time...and I'm 26 now...I still have 5% on my head and I need to shave like everyday now....sound very bizzare?...I can assure you that there is least another hundred of different stories related to alopecia areata.

3. I always have a low normal haemoglobin level...but so far I have not come down to any condtion with it...the word I want to emphasize would the word NORMAL. as for the LOW---it means that you should have regular checkups to make sure that the level is still within the normal range.

Do keep us updated though. There are plenty of curable hairloss condition, so it would be the duty of the dermatologist to rule out all other curable hair loss conditions (e.g. ring worm, zinc deficiency, hormones...etc) before coming to a diagnosis of alopecia areata (+ biopsy)

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Permalink Reply by me on January 29, 2011 at 10:59pm

Hi Jen,

I started losing my hair in the beginning of April 2010. I was 16 years old, just about to turn 17. I noticed it falling out in the shower, while brushing it, and on my pillow in the morning. Around the end of May, I had to start wearing baseball hats to school because the bald spots and thin hair was getting somewhat gross. In July, I had no choice but to shave it. So, to answer your second question, my hair basically thinned out until there was barely any hair left. This took about 4 months. (I had long, straight, somewhat thick, brown hair.)

For your first question, I started to notice regrowth a couple weeks after shaving it. Granted, I was using DPCP treatment from May-August. (FYI, I do NOT recommend that route--awful treatment, it may have started the regrowth, but the itch and oozing was dreadful.) Now, I have the "swirl" in the back of my head like babies do. It's pretty thick and a good few inches long. But, I don't have regrowth around the sides of my head yet. Also, I do have this weird white patch of hair growing in the back of my head. Now, I am beginning to get cortisone shots in my head, after extremely good results in my eyebrows. Although they are really painful, they work for me, so I'll take it.

Growth and loss differs between every person, but I thought I'd share my experience. Being a junior in high school and having all of this happen was pretty stressful, but I remained positive. This must be tough on you, because I know my mom took this much harder than I ever did.

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Permalink Reply by KATHLEEN B. on January 30, 2011 at 1:55am

Hi Jennifer....

Every case of Alopecia is different. Everyone reacts differently to treatment as well. I found it very interesting that your daughters iron is so low. In order to for your hair to properly grow normal iron levels should be over 70. I`ve had AA for over 4 years now. My AA was thinning overal hair with the most thinning area`s on the crown of my head. Ive tried cortisol shots, herbal remedies. But last year my doctor found out that my iron level was super low and under 10 so I was told to eat more iron rich foods and placed on iron pills, that didnt work or raise my iron level. My doctor then recommended I try liquid iron that you can buy at health food stores. I tried that for another 4 months and my Iron level only was at 20 after 8 months of taking iron supplements. Appeartly my body doesnt "absorb" iron properly

Last summer my doctor referred me to get iron infusions done at a local hospital. They take about 2 hours. Had the iron infusion 3 times. The infusion raised my iron levels instantly and has kept them high and steady. My iron is now at 96 :). My hair has made such improvement too, most of my hair shedding has stopped and my hair is stronger and the areas that were super thin are thickening up. Just this month I am now able to wear my hair with just extension in it, no wig. Ive worn a wig for almost a year because the hairloss was bad, but finally improvement ( knock on wood)

For over 3 years my hair would fall out in handfuls. Increasing my iron levels have made a world of difference for me. Everyones different tho, and every case of AA is unique. I would try to increase your daughters levels. Theres lots of ways, increase iron food, or iron pills, or liquid iron, or iron shots, or iron infusions. Anyways thats my 2 cents. Hope it helps.

KAthleen.

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Permalink Reply by Angie, Gracie's mom on February 9, 2011 at 11:32pm

Hi Jennifer:
My daughter has had AA since she was 13 mo old. She is now 37 mo old, so we've been at it awhile! I was interested in the iron stores, are you referring to her "ferritin" levels? My daughter has had consistently low ferritin levels, and then we will treat that with a high iron dose until it gets raised up (we've been told that 40 is the base number for good hair growth, and hers has been down in the low teens, 11, ect). Her ped has said to just try to give her iron rich foods, but after the second set of drop off, she agreed to a maintenance dose, and she gets retested every six months. I went and graphed what I remembered of her hair loss, as she has had a few cycles of loss--lots of loss in patch form, and times of regrowth. Then I went back to the labs, and low and behold, there was a direct correspondence. She has been on this maintenance dose for about 9 mo now, and her hair has never looked better. She takes it in liquid form to get her dose accurate for her weight, and pairing it w/ vit C helps. She has only one small spot that I noticed on New Year's--but instead of it spreading like crazy it has stayed very small, like a pencil eraser size.

We see a well respected hair specialist who has been part of the NAAF scientific community. I feel very lucky we are able to see her. She says that there has been no direct link between iron and AA, but she is amazed at how Grace looks, and maybe it is a contributing factor--like an extra stress on the system? However, we have also found out that I am low in iron, and my son has a low ferratin level as well. Maybe we don't retain it well? The frustrating thing is even the specialist will say there is no known causes, and it is unpredictable. But she feels positive about a biological cure coming in the next 10 years--wouldn't that be awesome, to get it before middle school? :)

As to the steroid cream, I would be very very cautious. We were seeing a derm who prescribed Betamethasone--a steroid to Grace at about 18 mo. I tried it as I wanted to see if it would work, and she did get regrowth, but she might have gotten regrowth anyways. However, a few months later she had a dent in her head. Her ped thought it could be her plates not aligning right, but it was thinning of the skin from the steroid--the ped didn't know this but the derm did. Our current specialist says that this med was way too strong for her, though the first derm (who was also a hair spec) said it was relatively benign. She has currently been prescribed Protopic, which is super expensive, but our insurance covers it. It has a black box on it, which means it has been linked w/ cancer, but our current doctor says that the studies are flawed and she feels it is perfectly safe in a topical form. I went a long time w/o treating her AA, and instead used ShaBo hair cosmetics for special occasions (it worked incredibly well and they are awesome there). I just thought if she doesn't know about it, then why introduce something that may have lasting effects. Her doc says that really 4 is when they get an understanding of it.

As to regrowth, since we weren't treating it, she had one spot that took about a year to grow back. Others took far less time. She has the ophasis pattern which is more stubborn. When they are getting their hair back you will see tiny little white hairs, really only noticable in sunlight, then it starts back in. And once it starts growing, even if the hair is short, it is much less noticable because you don't see the stark scalp against the hair.

As to the gluten, I am on the fence. My grandmother has celiac, and Grace also had failure to thrive and frequent stools when she was btwn 9-24 mo. She was biopsied for celiac, and it came back negative. You can have a blood test for celiac, but it is less accurate than the biopsy, but the biopsy requires surgery. I thought for sure there would be a link, but she eats wheat now and is doing great. I was more worried about her failure to thrive. While she is still thin, she is up in the 25th percentile now.

I hope any of this helps. I feel like I've been through a lot with her trying to figure it out, and it is a long road that you have to take. Watch this years Miss America when you are feeling down. It was awesome to see Kayla Martell out there representing! But I too have cried most days in the beginning. I get through it now pretty well, but I check her hair all the time. Take care, Angie

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Permalink Reply by madhu on July 8, 2011 at 2:59pm

Hi Angie,
This is my first post in the alopeciaworld website. My daughter is 3 1/2 and has alopecia totalis. It sharted out as alopecia areata and has progressed to alopecia totalis (no hair in scalp). Reading ur post was like reliving the last 8 months of my life. We are following the same treatment with betamethasone and protopic. Her iron level was very low(21) compared to normal level of 40-90. after 2 months of iron medication her ferritin level is now 62..thank god. I can see peach fuzz hair (can be seen only in sunlight). Hope it grows back, but we keep her spirits up by telling her she is beautiful.

Since we are new to US and have been here only for a year (her hair loss started 4 months after we moved to US), i have no idea if she is allergic to some food and if that could be aggravating her alopecia.

Can anyone suggest how to find out if she is allergic to some food and if that could be worsening her alopecia?

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Permalink Reply by Jules1984 on July 12, 2011 at 8:19pm

We took our daughter to see a Naturopathic doctor. He had her take a vitamin/mineral defficiency test as well as a food allergy test. We did this test about a week ago... so we still don't have any results (could take up to 2 weeks). It costed us about $600 to do the test so I'm hoping we get something out of it. Most GP's wouldn't consider doing allergy testing (well in Canada anyway) and so we had to go the naturpathic route. Hope that helps... maybe you can try to find one in your area.

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