Autoimmune Island Pages

I am not a doctor...Please do not mistake anything you read here (on Autoimmune Island) for medical advice.
Decisions regarding you or your child's health care should be made only with the assistance of your doctor and/or your health care specialists.

Saturday, March 20, 2010

Alopecia Are...whata???

Most of my blogging so far has been about Type 1 Diabetes, but there is another autoimmune disease that has decided to show it's face in our family....

In June of 2009, my oldest daughter - "Queen Alopecia", was diagnosed with Alopecia Areata.  Most people have no idea what those words mean until we inform them.  Alopecia Areata is an autoimmune disease.  My daughter's own immune system, which is supposed to fight off virus and bacteria, is mistakenly attacking her hair follicles.  The hair follicles are the structures that produce hair growth.  When these follicles are attacked, it leads to hair loss.  Hair can be lost not only on the scalp, but on other parts of the body too.  The stem cells that provide the follicles with new cells are not affected, so there is always the potential for new hair growth.  If hair could all fall out again.  Alopecia is different for all people.  Some people have hair regrowth while other people may not...that is what makes this disease so unpredicatable.  There are three main types of Alopecia.

  • Alopecia Areata: described as having patches of hair loss anywhere.  At first, Queen Alopecia was diagnosed with Alopecia Areata when we noticed two quarter size bald patches on each side of her head.  We could easily cover these spots with her own hair.  If you look at the picture can't see the bald patches...we were able to hide it very well.
  • Alopecia Totalis: described as total hair loss of the scalp.
  • Alopecia Universalis: decribed as total hair loss of scalp and body; including the eyebrows, eyelashes, underarm, etc.  Queen Alopecia eventually developed this rarest form of Alopecia.
At first, there were only two spots on each side of Queen Alopecia's head, but slowly....these spots began to grow bigger and then there were more spots that started to develop and these spots gradually got bigger, and bigger, and bigger until they all just started to connect with one another.  The photos below will show the progress of Alopecia Universalis...

At these first  two stages of Queen Alopecia's alopecia shown in the pictures mainly affected her left side and we could still cover it with wide head bands. We used 3" wide head bands and most people didn't realize that Queen Alopecia was losing her hair.

At this point...the patches started to get bigger and gradually connected with each other.  It was at this stage that I also noticed that her eyebrows and eyelashes were thining.  We tried many topical cremes to get her hair to regrow.  I even sent away for a topical cream, shampoo, and nighttime oil (called Calosol) from England that didn't produce any results.  We then started to go to a dermatologist who prescribed "Elidel".  We used that for a while and then I found a case study where Alopeicans used Elidel and not one person had hair regrowth.  We decided to stop this cream and give steriod injections a try.  We went to our appointment and the first time she got injections, she was so scared.  We used emla cream to help numb her scalp.  Thank goodness for this cream....she only felt about six-eight shots, but she must have been given 100 or more shots in her scalp.  She was such a tropper!  We were told that we should see hair regrowth within three-four weeks, but was also told that it may or may not work.....

Queen Alopecia is losing her bangs and it is now impossible to cover the balding with headbands so at this point she is wearing hats to school.  She is worried about losing all of her hair, but she fears losing friends more.  At this time she doesn't want to tell her friends about it.  She said that she wants to make friends first and then tell them all about her Alopecia.  Then she will know if they are truly her friends.  If they are, they will not care whether or not she has hair.  I'm so proud of her for going through this emotional time and having such a positive attitude.  I'm hoping that her self-confidence continues to grow.
We found this picture on her grandparents computer.  It is a drawing that Queen Alopecia created about her hair loss.  Her classmates are wondering if she has cancer and it is at this time that we decided to send a parent letter home informing parents about Queen Alopecia's alopecia and how to answer any questions that their son or daughter may ask.  I also sent the books "The Girl with No Hair" and "Princess Alopecia" to school for all the teachers to read to their students to raise awareness about Alopecia Areata and to understand what Queen Alopecia is and will be going through.

At this point, we decided to give one more round of steroid injections a try.  We wanted to make sure that we tried everything....we wanted to make sure that we didn't leave a page unturned.  That is what parents do right?  We were going to do everything possible to help our daughter.  

Queen Alopecia with Alopecia Universalis...Total scalp and body hair loss.  She amazes me.  The second round of steroid injections didn't produce any hair regrowth and at this point all her eyebrows and eyelashes are gone.  We decided as a family that we did not want to continue with the injections.  She now wears a wig, but at times it can be uncomforable, but she loves being able to wear one when she wants to.  She doens't feel comfortable, at this time, to be out in public without wearing some sort of head covering (the Buffs, the hats, and her wig). 

This is Queen Alopecia wearing her new wig for the first time...she loves that it "looks real"...
I just wish I was better at styling it. 

Besides having alopecia universalis, Queen Alopecia is healthy.  We had blood work done thinking maybe something else was causing her to lose her hair, but everything came back normal.  She is healthy, but the loss of eyelashes and eyebrows and hair in the nose and ears can make her more vulnerable to dust, germs, and foreign particles entering the eyes, nose, and ears.  I'm a member of Alopecia World and its good to talk to other parents whose children have alopecia and who are going through the same kind of problems and frustrations.  I've learned more about it, learned about other treatments that may be in trail phases, and have learned about products out there that we will probably be using when Queen Alopecia gets older.  I think it's really tough for people living with alopecia especially in a culture that views hair as a sign of youth and good health.  We are happy that Queen Alopecia is not going through any physical pain, but it is the social and emotional pain that we worry about.  Will she continue to be strong in her "teen years"?  Will she continue to have self-confidence and stick up for herself? ..........I hope so.

Sunday, March 14, 2010

100 Words!

I was contacted by our local JDRF (Juvenile Diabetes Research Foundation) Special Events Coordinator recently who wanted to know if my family was interested in having The Sugar Princess participate in their annual "Fund a Cure" at this year's JDRF's Beach Ball Gala!  What they want to do is to have place cards at every place setting depicting different children that live within their chapter that are affected by type 1 diabetes.  We of course were happy to help.  They wanted us to send in a picture along with 100 words that would introduce her, tell a little bit about how she lives with Type 1, and how she overcomes it!  I found this assignment very hard.  I could talk all day on Type 1 Diabetes...there is so much information!  There is so much that people do not know about this disease.  It was hard  to limit it to just 100 words....

The Sugar Princess
Diagnosed with Type 1 on 6/12/2007
Current age: 5 years old

I currently attend preschool and enjoy drawing,
 coloring, painting, creating things, and playing with my big sister.

My family and I are thankful that insulin was discovered.
My fingers are poked 8-10 times a day to monitor my blood sugar.
I get 4-6 insulin shots everyday.
Insulin is my life support. 

It is a balancing act between insulin, food, and exercise.
Sometimes we win, but sometimes it is a struggle.
I have a family who loves me.
They help me get through the tough times.
I look forward to saying......
‘I used to have Type 1 Diabetes!”

Please Remember "The Sugar Princess" during Fund a Cure
Dear D-Moms and Dads,
How would you put it into just 100 words???

Friday, March 5, 2010

Happy 9th Birthday My Beautiful Girl!

Today my daughter, "Queen Alopecia", turned nine years old! 
"Happy Birthday" my beautiful girl! 
I love you!

Monday, March 1, 2010

We Got Belly!

Okay....for those of you who might not know what I'm talking about, my daughter, "The Sugar Princess",  has Type 1 Diabetes (diagnosed on 6/12/2007).  Ever since she has been diagnosed, the doctors, nurses, and diabetic educators have informed us how important it is to rotate insulin sites.  The Sugar Princess gets up to six insulin shots every single day.  The best places to give insulin are the abdomen, arms, thighs, and buttocks.  Injections should be moved around within the sites that are used (example: six to nine areas in each thigh site).  If there are swollen areas, injections should not be given into these sites, as the insulin may be absorbed at a different rate.  The problem was that The Sugar Princess would only allow us to give insulin injections in her arms and buttocks.  At her last endocrinologist appointment, her doctor told us that her arms were looking pretty puffy.  We tried to give injections in her thigh and abdomen, but The Sugar Princess was so scared and then  she would cry.  She would wiggle so much that half the time we were unable to give the shot or we were unable to inject all the insulin (some would leak out of the skin).  We gave her arms a rest for a little bit and mainly used the buttocks.

FLASHBACK:  I remember right after she was diagnosed, we went to a cross-country meet (I used to be the coach so I still wanted to show my support) and it was the first time that I had to give an insulin shot in front of a large amount of people.  The Sugar Princess of course was not in the mood for a shot and started to run away from me.  Picture this...a mother holding a syringe running down her two year old daughter...finally catching her....tackling her down to the ground...she is kicking and screaming...I put both my legs across her to keep her from fighting me....and then I gave her the injection!...everyone was staring at me wondering what the heck was going on!!  A fellow teacher responded...."MISSION ACCOMPLISHED"!!  That is exactly what it felt like....A mission!  Every shot, every day...we went through the same routine and then finally she stopped fighting us!

FAST FORWARD: We soon will be transitioning to an insulin pump.  Hoping to start in June because I do not work during the summer months.  We are very excited about this next step forward, but also very scared.  It will feel as if we are starting all over, but it's for the best for The Sugar Princess.  We want to avoid alot of the highs and lows that we are getting....and want to manage this disease a little better with more flexibility.  My husband and I went to our first "pre-pumping" class last week.  The diabetic educators again stressed how important it is to rotate insulin sites.  We want  to give these sites ample time to heal so we want to be able to use all four areas (buttocks, arms, thighs, and abdomen).  As soon as we would say "Sugar Princess, we need to try a belly shot".....instant hysteria!!  I didn't know what else to do.  I then thought if she could see other kids getting shots in the belly area or seeing other kids with their insulin pumps located in the belly area, maybe it would build up her courage enough to try it. 

CALLING ALL D-MOMS:  I sent out an email to 40 of the greatest women (dads too) who also have a daughter(s) or son(s) with type 1 diabetes and asked for their help!  My husband and I are truely thankful for all the support we received from all of was amazing.  It still is amazing.  All the pictures we got were amazing (and the kids in these pictures are truely amazing too...and also are little cuties) and if we didn't get a picture, we got words of encouragement.  The Sugar Princess even got letters from her online friends "who are just like her" (her words)...

Kacey wrote: Hi~  I wanted to let you know that it's ok to be scared of doing shots in your tummy. I was scared too. Once you try it then you will find that it's much easier than you think. I put my pump sites in my tummy and in my hip and sometimes I still get scared and cry. I hold my favorite bear and close my eyes then my Mommy does my shot. I like getting shots in my tummy better than I did getting them in my arm or leg. You are a brave girl and if you ever want to talk to me then you can call me on my Mommy's cell phone.

Ben wrote: (with a little help from Meri): I know it is scary to use a new place...but maybe it will be better than the others. Give it a chance just once. :)

Jada wrote: Hi! My name is Jada. I am six years old and I have diabetes too. I used to be scared to take shots in my tummy too but once I gave it a try, it wasn't as bad as I thought it would be. Now, that is the only place I like.
These little notes to The Sugar Princess just brought tears to my eyes.  Thank you so much for helping!  The Sugar Princess looks at all of these pictures daily!!!  She was still afraid to do a belly shot so instead she allowed us to use her thigh!  It wasn't the belly, but a new site just the same.  We are making progress!  Then the next day, my husband gave The Sugar Princess her first belly shot while I was at work (Go figure...I can't believe that I missed it) wasn't the most willing shot on The Sugar Princess's part.  I wouldn't have pushed it, but my husband got help from his mother and gave The Sugar Princess her first belly shot.  She cried alot before he gave it to her, but then afterwards she said "It didn't hurt!"  When I got home from work, she was so excited to tell me!  I, of course, made a big deal about it and told her how proud I was of her and how brave she is.  At dinner time, I asked her if she would let me give her a shot in the belly.  She said yes and then I asked her if Queen Alopecia (her big sister) could take a picture of me doing the shot.  She was instantly excited and wanted me to share her picture with all of you!  I'm hoping that our picture of The Sugar Princess "being brave" will help somone else get over their fear!
The look on her face doesn't look too good, but I think it was her normal reaction to a "new" place...she was probably thinking the last one was a this one going to hurt?

Easy to distract her when there is something good to watch on TV...Lol!!  Again, she said that it didn't hurt!  So now we are able to rotate all the insulin injections to all four areas....Yeah for our Sugar Princess! 

A Day of Hope!

A Day of Hope!
This is The Sugar Princess's hand...displaying the word "HOPE"!
We (The Sugar Princess, her family, and her friends) all hope for a cure for Type 1 Diabetes!