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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

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Friday, November 5, 2010

Alopecia areata and Meghan

Yesterday, I told Meghan she looked pretty, she said; "I am not pretty" and I said yes you are, and she said, "No, not pretty Mom".

It is her hair loss that is making her sad. I noticed her looking at her head in the mirror for a few weeks, since Buddy Walk. One of the moms asked me what was wrong with her head, and Meghan's hand flew up to the bald spot. Before that she did not seem that concerned about her hair loss, but now, I guess she feels it makes her ugly?

We have never said anything about it making her less beautiful than she is, I am very sad that my girl has become self-conscious about it now.

Meghan lost her bangs this time, this side is always pretty bad, but this was not the worst hair loss she has had because of alopecia, and it is regrowing here. See the fine hair? It is pretty long now, but now she lost all the hair of the same area on the other side, looks similar to receding hairlines of men with male pattern baldness. She also has two 3 inch circular patches of hair missing from her left and right parietal regions.

Meghan 2006

Alopecia areata is a hair-loss condition which usually affects the scalp, for Meghan, it also effects her body, she has no hair on her arms and legs. Her pediatrician and her dermatologist fear she may eventually lose all the hair on her head. She has kept her eyelashes and eyebrows this time, they have fallen out completely before.

Alopecia areata typically causes one or more patches of hair loss, the nape of her neck has been hairless for a couple of years, we do not think that hair will grow back again, but we don't know that for certain. Her condition has gotten progressively worse, she had quarter -sized patches at first, now she can lose all the hair on one side of her head. People stare at her sometimes, lots ask what happened. or what is wrong with her hair. She is noticing their stares and comments now. It breaks mommies heart to see her getting self-conscious about it.

Alopecia areata tends to affect younger individuals, both male and female, Meghan was a baby when she lost her eyebrows the first time. We honestly believed her sister had shaved them off, she was a bit jealous of Meghan and well, there was that time she cut off all the cats whiskers...Julia points out that ha ha, it was not her, how many times can we say we are sorry? :P

Alopecia areata is an autoimmune disorder, in which the immune system attacks hair follicles, that is what is believed, but researchers are not 100% certain. At one point one of her doctors told us that her impaired immune system may make her more prone to leukemia, however I have also read that people with autoimmune issues have less of a chance to get cancer. Since Meghan's maternal great grandfather passed away from leukemia at age 82, we feel there is some reason for concern, but do not dwell on it, why borrow trouble? He was also exposed to nuclear fallout like me, and it is likely that caused his cancer, and my grandmothers too, well, probably all of us. Look up RECA if you want to know more about downwinders.

For most patients, the condition resolves without treatment within a year, but hair loss is sometimes permanent. Meghan has had alopecia since infancy, so obviously it is not going away, and it is getting worse, will she lose all her hair? No one knows.

A number of treatments are known to aid in hair regrowth. Multiple treatments may be necessary, and none consistently works for all patients. We did squaric acid treatments for a few years, it helped. The idea in a simplified way; the squaric acid would be an irritant that would cause her white blood cells to go to that area and try to heal it, leaving her hair follicles alone. It seemed to work, her hair grew back, but after a time, her skin adjusted to the acid and we would increase concentration slightly, we eventually got up to 2% solution, at that point Meghan failed the protocol and we had to choose another medication to fight it. The next step was steroids, we refused them, we do not believe steroids are safe for children and alopecia is not life-threatening, she has not had any treatment for about 18 months.

Many treatments are promoted which have not proven to be of benefit. Since it is an autoimmune issue, there are very few safe treatments, the medical world wants to shut down the over-reaction of the immune system by giving medication that significantly alters a persons immune system, making them susceptible to cancer and infections, we say a big no thank you to these.

We cut out gluten, her skin cleared up, her hair grew back on one side, but fell out on the other. She has thick misshapen toenails from her disorder. They are hard to cut. So far we have not found a good way to combat this using nutrition.
If it is genetic, there is nothing we can do with the current medical knowledge of auto-immune disorders. About 10% of children born with Down syndrome have alopecia, and the alopecia gene is on chromosome 21, hmmm. to read about this.

Hair is not necessary to live, but if you ever lost yours, you would know how badly it feels not to have it. I lost mine because of chemotherapy, but it grew back in pretty quickly, sure it was a weird shade of green, but it grew back (it did return to normal). I have two sons with different types of balding, one with male pattern, and the other has thinning all over his scalp. My husband is losing his hair exactly the way his father did. My maternal grandfather was completely bald and I think Meghan simply had bad genetics where hair loss is concerned.

Kris and Julia, June 2003

Mommy and Meghan November 2003. My hair was about 1 inch long, growing back after chemotherapy. I understand how it feels to be bald, how people treat you differently. I wore a wig so I did not have to answer questions, or have people look at me with pity in their eyes. Meghan cannot wear a wig, she is not bald enough, wigs hurt and itch, I am going to try my hand making her some hats with a circular loom. One of every color! With crocheted flowers!

I am grateful that it is all that is wrong with her, I know it could be much worse, for Meghan though, it is difficult, she will likely never have a full head of hair again.


GoldenAngelsWorks said...

Meghan is a sweetie and needs to realize she is beautiful inside and out!

My offer to make her a hat still stands strong. I love you Meghan.

NDMom said...

She IS so beautiful! I am so sad that people are mean and stare....and now she is self-counsious. Bless her little heart. Thanks for sharing this information; I really didn't know all the details or that you are a cancer survivor. What a blessing you are!!!

Linda Meg said...

Oh, Kris, so sad to hear that Meghan is feeling self-conscious. She is so pretty and deserves to feel that way. I hate it that our society places so much emphasis on looks. Why can't we just look at a person's heart and see the beauty there?

Michelle said...

I'm sorry she is now self-conscious due to comments she's overheard ... too young to be self-conscious and worried about being pretty or what others think! She is a beautiful girl and I'm sure the support of her family and friends will help her to see that!

PS thanks for your comment regarding Joe and my father!

Anonymous said...

My daughter was diagnosed with Alopecia, she was losing her hair, and at first we thought she had cancer. Tests were taken and sent to San Francisco for lab testing, the doctor there prescribed steroids and a cream, then her hair stopped from falling and regrew, although the she has maintain hair,it is thin and has not fallen since. I am just writing this to let know persons with children that there is good medicine and good doctors, and sometimes we do have to take their advice.

Arizona mom to eight said...

Hello Anonymous, we will not use steroids for hair loss, there are far too many side effects and we do not feel it is safe, I am glad it worked for you, we saw a doctor for 3 years for this, when we failed our protocol, they suggested harsher medicines, and we walked away. Not my child, sorry, not ever.

Anonymous said...

I had Alopecia and seem like salt water from a clean beach help to cure it. try it ;)

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