Replies to This Discussion

Permalink Reply by Angie on March 14, 2011 at 12:51am

Hi Cari,

I'm not sure what you mean by "flare-up." Is something physically happening that you can see?

Not sure of your story because I'm new to AW, but have you considered gluten sensitivity? Your post literally describes my son to a "T," and he has gluten sensitivities. I don't think people realize how much effect gluten can have on one's system when they are allergic. The runny nose to me is the dead give away. If you haven't yet, research it some more.

Angie

Permalink Reply by Erin on March 20, 2011 at 3:15am

Hi Cari and Angie,

Starting at 4 years old, my daughter (now 5) slowly and diffusely began to lose hair. IT took 10 months for it all to fall out. At one year she had a strange skin event where after seeing a few pediatric derms at Stanford, they mentioned "her immune system is just not handling this". At 2 years I started noticing pitting in her nails which her ped said was quite common in children--now we know this was the first sign of alopecia. Her whole life she has gone through periods where she is highly over-reactive to situations--big, huge responses to minor things. Easily over-stimulated. Once we learned about the alopecia and it being an "over-reaction" of the immune system we found some irony in that she seemed consistently over-reactive: physically and emotionally. Another instance is when she develops a fever, she hits 104-105 degrees in hours. She had a 106 degree fever a few weeks before the onset of losing her hair. Another, insect bites become huge welts and are unbearably itchy immediately. Immune system overload. I share these details b/c like me, I'm sure you are trying to gather as much info to peice together this puzzle. I'm convinced parents will play a huge role in discovering possible triggers and/or factors in controlling alopecia. I'm sure we are paying the best attention!

Following is what we've done to support my daughter's immune system and how it has worked. I review our approach with every doctor we see encouraging them to make more connections between their patients experiences and work to figure this thing out!

1) Gluten elimination: We went strict GF right after diagnosis. After reading that alopecia is genetically most closely related to Celiac and RA, my intuition tells me diet (specifically gluten) must play a role. after a few weeks, the very dark circles she often had under her eyes disappeared and have not come back. Her "big moods" evened noticably and where once she needed much more sleep than most kids her age, she gave up naps and now has average sleep needs. We are 10 months in to our 1 year commitment to GF, but I don't think we're going back on gluten. 3 months ago we began seeing small patches of sparse new growth--hard to say if it is the GF diet, but with all the other improvements we have hope.

2) Dairy free: we explored this with the gluten for 4 months based on the fact that my daughter doesn't like most dairy foods and had severe acid reflux as a baby. After no new growth to this point, it was too hard also being GF and our ped said we would have seen improvement already if it was the dairy. Thank goodness we are back on cheese!

3) Vitamins and probiotics: Childrens multi, clacium/vit d, omega 3-6-9 oil and probiotic. We do this when I remember...a few times a week. We eat lots of fresh organic produce at every meal, so she has a good base.

4)Acupuncture: once a week for 3 months. I had high hopes for this and it was during this time that we saw the first new growth. My daughter got tired of going (1/2 hr drive to pediatric acupunturist) so we didn't push it. I truly believe that it helps balance the immune system. We may try again when she is older if she chooses. It was relatively painless for her for anyone who is wondering.

5) Switched to holistic ped. who is an MD and specializes in autoimmune diseases. Best of all perspectives hear. Did blood testing (which couldn't test for gluten sensitivity since we had already eliminated it--and if the test was negative I would still try). She suggested probiotic and vitamins and supported use of medications recommeded by ped. derm.

6) Rogaine and ointment for inflammation. A few months after starting ointment is when the new growth appeared.

7) guided meditation and aromatherapy (I would do this without alopecia) a few nights a week at bedtime.

Let me know if you have any questions. I KNOW an answer to managing this disease is near. If we pool our experiences and observations...I think our kids are a sensitive bunch. We just have to find the right balance for their bodies: physically, emotionally, spiritually

Sorry. Sooooo long!

Permalink Reply by Hillary Howard on March 14, 2011 at 6:47am

I agree with Angie- we discovered our daughter had multiple food sensitivities which, when we got them taken care of, alleviated many symptoms- including mood swings, post nasal drip and her hair loss. She is sensitive to wheat, eggs, dairy, peanuts, shellfish, soy, and cabbage. Finding a doctor who believes in food sensitivities is harder.

Permalink Reply by Angie on March 14, 2011 at 10:08am

I'm so happy to hear that it has made a difference with your daughter. There is hope after all!! I'm impressed with your commitment. It isn't easy...my son sometimes makes it difficult, but for the most part he understands...even at 3 years old.

Permalink Reply by Steve Maitland on March 15, 2011 at 8:08pm

I suspect that she's scared, and it doesn't matter what you do, no amount of giving her what she wants is going to satisfy her. My daughter Laura (who is now 23) lost her hair when she was 2, got it back when she was 4 only to lose it again when she was a teenager. She never talked openly about her illness, at least not to me. Heck, your daughter may even feel like she's done something wrong to lose her hair. If you were four, how would you feel about losing your hair?? You know, its really hard to be a parent and there is no easy answer because each child is different.If you feel helpless about the whole situation, I can relate. I would gladly trade my hair for my daughter's/even your daughter's alopecia. One thing I am sure of is that your daughter needs your support and it needs to be balanced against the behaviour boundaries you set as a parent. This can be a tremendous tightrope to walk, and you may even have sleepless nights yourself. I wish you all the best in these trying times. Maybe if you keep sharing your experiences, someone might be able to help or you might help someone else.

Permalink Reply by Cari on March 21, 2011 at 4:14am

Hello & thank you all for your replies! I will "try" to summarize (as you know, it's not always easy to make it short!).

My daughter's hair started to thin around age 2 and she lost almost all of her hair in a matter of 3 or 4 months. Prior to and during, she had a host of ear infections and lots of antibiotics (if I only knew then what I know now) for the first 3 years of her life.

We started with a local derm and quickly moved on to a well-respected derm who specializes in Alopecia. She ran numerous blood tests but only highlighted my d's Ferritin levels, which were incredibly low. The doc rec'd iron supplements, claritin 1x a day, Lidex gel, Rogaine and Dithroscalp. (lots of other little tidbits of info here, let me know if you want me to pass it on).

My d did have regrowth but we quickly began the never-ending cycle of hair growing in, new patches falling out at the same time. The whole thing is so hard to understand but honestly, we never went more than 2 weeks without finding new spots. This brought me to the realization that we were only treating her symptoms and I just wanted to know, like everyone else, what was wrong with her immune system. Anyhow, I took her to a DO and from there...

He did blood tests for food allergies and environmental allergies among other things and we ended up with this course of treatment: Gluten and dairy free, DHA supplements, probiotics, replaced iron with actual ferritin supplements and the only prescription was for yeast (I can't remember the name of it now). I kept doing the other stuff too, just fyi. :)

So, about 2 months after this, we had our first big stretch. Lots and lots of regrowth and no new patches for almost a year. After seeing the derm, we backed off most everything - not eliminated but backed off, except for the claritin.

Now, we're back to lots of thinning and lots of new spots. And like I said, her demeanor really seems off, which can create issues like Steve mentioned. Erin, your experience sounds very similar to mine.

The last year had been nearly void of the "over reactions," fatigue and general unhappiness - along with the regrowth. I'm sure that's why the personality shift (I say that with more love than you can imagine) was so terribly obvious to us this time. She is a different kid.

When I say flare-up, this what I see (in addition to the stuff already mentioned); new bald spots, red areas on head, itching on head, itchy patches on skin, smelly breath and body areas, lack of appetite and major fatigue.

So to bring you up to present day - the DO called to tell me that her ferritin levels have not gone up, even with supplements but I'm not sure what that means yet and also talked to me about immunotherapy drops. I had already read a little about them but I'm sitting on it for now - too much info to process sometimes. The only other change would be the yeast medication but surely that couldn't be a factor?

Erin - what kind of guided meditation and aromatherapy do you do? How did you learn about that?

I am trying to prepare myself in case it gets bad again - no doubt she will "see" it if it does now that she's older and will have lots of questions. We haven't crossed that bridge yet.

All I know is that when we do, I will probably explode with love. (and cry a lot after she goes to bed.)

:)

Thanks guys (and let me know if you would like to publish the novel I just wrote - geesh!)

Permalink Reply by Erin on March 23, 2011 at 7:06pm

Hi Cari,

Interesting how the most common thread I read about alopecia is its unpredictability and "everyone's case is different"--true enough, but I'm finding so many similarities between my d's experience and others. I know investigation of these common denominators will reveal effective treatment. I'm so encourage by the suggestions your derm made. Ours is very textbook, prescribing only lidex and Rogaine. Everything else we are pursuing is on the recommendation of our holistic ped or my own intuition. I hope more and more doctors continue this line of diagnosis and treatment. Yes, I'd love my daughter's hair to return, but more importantly I'd love her body to be in balance rather than attacking itself. I have a long family history of autoimmune disease. I'm fearful my d may develop others if we can't figure out how to reset her immune system.

No one has suggested Claritin. Given it is pretty benign, what are your instincts about the role it played in your d's regrowth? My d has been bald since last October and using lidex/rogaine for the last 6 months. Now we have very sparse regrowth in patches all over her scalp, but she still appears bald. I'm wondering if an allergy med might help that much more.

Are you still Dairy and GF? We went back on dairy and it was after we reintroduced it that we saw new growth...so we've assumed it was not a trigger/ irritant.

About meditation and aromatherapy. I practice yoga regularly and after becoming a parent, the principles of Buddhism resonated with me. After the alopecia diagnosis I've found such comfort and peace in some of the concepts of yoga and buddhism--so have my kids. The emphasis on seeing every aspect of your life as an opportunity for growth has helped our family to recognize and appreciate the positive outcomes of alopecia--and for us there have truly been many. Already, simply by being noticed more, my d has had opportunities she would not have had. And so far, she is happy and the same girl she was with her hair. I almost see her demonstrating her true self more, as the occasion arises for her more often (dealing with staring, questions, etc.)

I HIGHLY recommend the book "Buddha at Bedtime" which has inspiring tales of wisdom. At the end of the book there are a few guided mediations to do with your kids. My daughters LOVE them. As an aside, these are wonderful for everyone, regardless of religious beliefs. I also recommend the cds "indigo Dreams" which are guided meditations your kids can listen to with you or on their own. I got them both on amazon, so check them out. I refer to many of the techniques throughout the day when my d is escalating and needs the chance (and tools) to center herself. One of the mediations is "rainbow", each color signifying something. I can simply say, "find your indigo, feel the gentleness" and she responds. Meditating has been wonderful for her--best proven by her enthusiasm for doing it.

My holistic ped recommeded the aromatherapy noting that there were a few studies finding it beneficial. The recommended oils are thyme, rosemary, lavender and cedarwood, but I use others as well. You can find these essential oils at Whole Foods along with carrier oils (jojoba, grapeseed, etc) that you mix them with. My girls love creating their own combos of essential oils--they sell small dropper bottles to mix/ store them in. Ideally you would message them into the scalp. Given that we are using the lidex, I apply to the temples, their hands and feet and approach it more as an experience. I do this before meditation, so they benefit from the aroma while they breathe in meditation. My d's acupuncturist really supported this as well--she provided more info and I got most of my essential oils from her.

Please ask if you have further questions!
Erin

Permalink Reply by Angie on March 25, 2011 at 2:22pm

Hi Cari,

I enjoy your novels (LOL) I learn so much from them. Also, Erin gave great info below. Not only do I put that exact combination of oils (with one other, horsetail), jojoba as the carrier, I warm a nightcap with the blow dryer and put it on his head. Oh...and every other day I wash his scalp with apple cider vinegar diluted in water. We supplement vit D, omegas, zinc & copper (new one by the naturopath) and Kirkman advanced mineral support. We also do Candex (an enzyme that's supposed to break down yeast). He didn't have any diagnosis of yeast overgrowth, but the ped seemed to think that it would help. We do all this to the best of our ability. Some days when I'm rushing, I do forget and the Candex is not a priority because we're supposed to give it away from food, which is not always convenient.

Anyway, all has cleared up with his skin (occasional rash, but for the most part pretty darn good). He is still moody, but not as bad as before. I can tell when he has some kind of inflammation going on because he gets this intense heat in his body. Not a fever, but you just feel this heat coming out of his body. I never noticed it until the ped pointed it out.

If he gets dairy it is only raw milk or cheese. I drive all the way to PA from Northern VA to get it because it is legal in PA to buy raw milk. Gluten is not as easy. Another reader is using a digestive enzyme that helps break down gluten, even if you're gluten free, some can get into the diet unexpectedly, so I may try this next. Here is the website she recommended http://www.enzymestuff.com/index.htm

My son has done acupuncture and taken Chinese medicine. We haven't continued this because we relocated from NY and not near the one that our ped recommended, who we loved. The Chinese medicine was to reduce his swollen lymph nodes telling you he had infection. That worked. Not sure if the acupuncture helped. He has peach fuzz, but they never seem to go anywhere. This week he came home from school and said that he wants his hair to grow back. He says he wants hair like his friends in school, like mommy and like Arielle (his sister). My husband is bald because he shaves his head. I asked him if he knew that he was still handsome, smart and we still loved him whether he had hair or not. He said yes. He is almost 4.

I recently took him to a far infrared sauna with me. Supposed to be good for detoxing. My dr recommended it for me because he said I had arsenic and lead in my blood. He sits in it for a few minutes before he starts complaining about the heat. But, boy does it make him sweat!

Anyway, I know I rambled on, too. This is where we are in the game. We will continue to build that immune system the best we can and strengthen the hair follicles with herbs. Hopefully, we can keep each other posted on any progress.

Angie