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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

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.

Tuesday, November 2, 2010

The magical 3 year mark for Kara

When we decided to adopt there was always one thing I thought about, sometimes fretted about. "Could I love a child not born to me?" and followed quickly after that thought was "Will they ever love me?" I also thought about bonding with my other children and our newest addition, our older children were adults, they could have their own kids the ages of the girls we were adopting. Could they ever bond with the little stranger we brought home?

I had read somewhere in my hours of adoption reading that it took the little one you adopt as long as they had lived in the orphanage to forget their lives there and to fully integrate into your home. That 3 years is almost here for Kara. I have been watching her pretty closely the last few weeks, something changed in her, she seemed to have a serenity I did not notice before, a certainty that she was part of us, a Levario for good. Do I think she contemplates that, no, but I think in her little girl way she knows.

She is a dreamer. Though I do not know yet what she dreams about? Likely yummy food right now. She still loves to eat though she has become a picky eater, I never thought that would ever happen with her.

Kara seems like such a serious little girl, she can stare at you with the saddest brown eyes and make you wonder if she has sorrow in her little heart you cannot reach. Then like someone flipped a switch she will tilt her head to the side, get a quiver in her lip and jump at you in a fierce hug, giggling in happiness. She has the most adorable and contagious giggle. This is a favorite game of hers, trying to look non-chalant but unable to control her little face, and POUNCE. We play this game after I change her diaper. After the 2nd or 3rd time Meghan and Amanda are right there jumping with Kara. Kara is not a fan of sharing her mama. Amanda is not a fan of it either, they are possessive of my attention and time. I guess I would be too if I never had a mama before?

I think Kara does think of me as her Mama completely now, there were times when I felt like she just thought I was a person who got her food, but she is learning what moms and dads do. She makes herself cry so we will come to her side, and she sobs into our necks, and then there goes that switch, she smiles, wipes away the tears and goes about her business. I know that there were two women in her orphanage that may have answered her cries, but I also sat and heard infants hiccuping sobs in the back while I played with Kara in the front room. So I am sure there were plenty of times that our daughter cried out in pain or loneliness and no one was there to kiss her tears away.

I am glad I stayed in Ukraine the entire 6 weeks to bond with Kara, it was sometimes unbearably lonely especially in the middle of the night with no TV to watch or Internet to surf. I think it was important to bond as much as I could with little Kara and lay a foundation for our future as mother and daughter.

It has not been a walk in the park. Kara was a daredevil with destructive tendencies and impulsivity usually aimed at Meghan. Hair pulling, scratching, pinching, biting, things a toddler may do, and Kara was much like a 8 or 9 month old when we brought her home.

There were so many days I could not wait for nap time so Meghan and I could spend quiet time together, I think it was hardest for her to share me with Kara. It was also hard for Julia, as I could not jump in a car and take her things to school or take her places because Kara napped 2-3 hours every afternoon. There were times when I felt like I was babysitting her, especially those first 6 months home. Bringing Amanda home 9 months after Kara also made things hard for Kara and set us back quite a bit in bonding, she was green-eyed with jealousy and so mad at me.

Little by little I adjusted to Kara being my daughter, and Kara learned to be a member of a family. She and Meghan play so well together now, with minimal hair pulling. In the morning Meghan will search out clothes for Kara, help her dress, put on her shoes and take her hand and say; "Come on Kara" and Kara follows her outside. They tour the back yard and watch cars drive by and then come back in ready for breakfast.

When I saw Reece's Rainbow the first time, all I could think about was how sad it was that so many children were left in a hospital, alone and cold, while their parents carried on with their lives (I do not think it was easy for them). I had a dream of a little girl being a sister to Meghan and them bonding for life. I think that magic has happened for those two. Since Amanda is still so much like a baby, they kind of ignore her, she does get into the mix many times, and she is one determined little girl herself. I am sure as soon as she is walking all the time they will begin to include her in more things.

Kara went from a little baby to a girl in the last three years, at age 6 she is very much like a two year old, things will likely move slower for Kara, but she is progressing and that is what is important. She is consistently using three sign "sentences" with prompting, and is vocalizing more and more.

Maybe in three years she will talk my ear off? I sure hope so.

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