Tuesday, January 31, 2012

Short Anagen Syndrome ~ Meet Ava

Meet Ava.  She's a seventeen and was just diagnosed with SAS.  She wrote me an e-mail and has graciously allowed me to share her story and pictures with consent from her mother.  She writes that she was just officially diagnosed a month ago after years and years of wondering why her hair didn't grow.  She further says, "EVERYONE always used to say it will grow wait until you hit puberty and stuff, but nope!"

Her mother diagnosed her with SAS about a year ago, after doing her own research online, but just recently visited a dermatologist for an official diagnosis.  

Ava lives in New Jersey and by recommendation of her dermatologist was asked to be a part of a study for Short Anagen Syndrome in New York City.  She saw about 100 doctors and they all touched and looked at and pulled on her hair.  There were top dermatologists from all over the world and all looked at and discussed her hair.  She said, "There have only been about 10 recorded cases and they are really interested in short anagen syndrome.  They are trying to learn more about it".   {I think her doctors need to meet the facebook group!}  The doctors had a meeting about her hair and all agreed that it was Short Anagen Syndrome.

She further said the doctors believe this to be hereditary and that Loose Anagen Syndrome {which Karley does not have} is more likely to get better with age. 

Ava also said, "There were a few doctors at the study who had patients with Short Anagen and I learned that there were a few cases where they actually used women's rogaine and it helped... only problem is there are side effects and there cases were much worse then mine so they were willing to try anything. The side effects are when you stop using it your hair could possibly thin ( if I remember what the doctor said correctly, it was something along the lines of thinning or falling out) and you can grow facial hair!"  {For my own piece of mind, to do Minoxidil or not, I am going to look into this further.  Also, I am going to call Karley's dermatologist to see if there is any more information from when we were there in September 2011}

Two pictures of Ava when she was little.





Ava commented on a few other things we happen to discuss in the facebook group. 

"I try to cut my hair every couple months only a tiny TINY TINY bit, just to get off the dead ends.  I never had to cut my hair a lot which is obviously a really common described 'symptom' of Short Anagen, but I do notice the tiny trims help with keeping it healthy."

"I don't wear my hair in a lot of headbands, clips, or hair ties anymore because my hair breaks very easily and I feel like it is fragile.  It seems that headbands wear off my hair in the front and clips and hair ties make it break easier then normal.  Of course, I still use them but I try not to leave it in for a long period of time.  I use them when I really need to, otherwise don't."

"I also take biotin and chewable vitamins everyday.  I stopped a while ago and recently started again and notice my hair does feel and look healthier when I take them."

"I have tried everything from sulfate free shampoos, silk pillow cases, coconut oil treatments (suppose to be very good for hair), hot oil treatments, not washing it everyday, not brushing it while its wet and letting it air dry, only brushing it with a wide tooth comb, doing deep conditioning treatments once a week, and the list goes on and on but of course nothing has really made my hair grow."

This is Ava now.  She called this her "fun beach hair"  I think she's absolutely beautiful! 



And for fun she does add extensions and said nobody can tell that she has them.





In her e-mails I believe her to be a very very beautiful and inspiring young woman who has a great attitude regarding her hair and diagnosis.  I honestly don't think SAS defines her.  She is a very sweet young woman!

She has been very helpful to me and I hope that you find this helpful as well.  She has agreed to answer questions you may have for her via the comments thread below, when she can.  Please check back when you can.  And please remember she is seventeen.

God Bless,

Tina

Monday, January 30, 2012

My Memories Software & Shopping Giveaway!

And the winner is.......


H O L L Y


Congratulations Holly!  I'll get the coding to you!

Many thanks to My Memories Suite & all those that participated!


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




I dabbled in scrapbooking after I was first married.  Daphne and I went a couple Friday nights to one of those scrapbook places, but those days just aren't in my reality or my budget anymore.  Plus half the time I was there I spent chasing ideas, looking for products, etc.  Countless hours there only to come home with one page.  Never mind all the time printing pictures beforehand!  So not my reality these days.

But.....

I have discovered My Memories Suite and now I can do all those things and more without leaving my house!  This took all of about five minutes.  No doubt it would have been even less if I was a little more savvy.  Even if you think you aren't savvy, the knowledgeable group on facebook is always willing to help, not to mention the easy tutorials My Memories has provided on their website and the speed scrap on Sunday nights will make you feel like huge sucess!



It's endless as to what I could do with this wonderful digital scrapbook software with My Memories Suite.  I could print just this page or add it to a scrapbook, make a facebook banners, blog banners, whatever you want!  So here is the awesome part the company who makes My Memories Suite wants to make scrapbooking easy for you too!

One lucky winner will win the software package for free!! 

PLUS My Memories Suite has been generous enough to offer this promo code STMMMS16830 that I can share with my family and friends {that’s you!}.  By using this code at MyMemories.com, you can get $10 off My Memories Suite (you get it for $29.95 instead of $39.95) AND you also get a $10 gift certificate to use in their online store! 

To enter the giveaway please leave one comment for each thing you do:


  • Follow this blog {if you already do, just leave another comment saying "follow"}


  • Visit the My Memories Website and tell me which kit you like best

  • Follow My Memories on Twitter : @MyMemoriesSuite

  • Tweet this giveaway

  • Post this giveaway to facebook

I will randomly pick one winner of the software on Monday, January 30, 2012.  Please make sure I can contact you.

Let's start creating memories!

Thursday, January 26, 2012

Thoughts & Answers on Short Anagen / Loose Anagen Syndrome

While I was reluctant to share our journey with Short Anagen Syndrome I can see how it has proven to be a wonderful experience.  Wonderful, because, I have connected with a few wonderful Mom's and one lovely young woman who has SAS.

Today I will address a few questions that I received via e-mail.  Both of the Moms asked very similar questions.  Before I do, I want to say, these are my non-medical opinions based on some of the comments I have seen within the facebook group, friends, chiropractors, and nutritional chiropractors.

It doesn't appear that there was a pattern in what anybody did or didn't do during pregnancy, whether babies were breast fed, soy or non soy formula fed.  Babies were big, little and somewhere in between.  Some vaccinated, some did not.  Some did but delayed, others right on schedule.  I was told that an alternative doctor believed there to be a link to the MMR vaccine.  But I think among the facebook group some didn't give the MMR.   

I have heard that SAS is genetic and I did hear from the dermatologist we saw that LAS was {more on that when I talk about the young woman, Miss A that e-mailed me}.  I've heard from countless women that doctors have said "it will eventually grow" or "when they hit puberty it will grow". 

Should we have to have a conversation with our daughter about her hair growth, we will not be telling her to hold out hope for a magic age.  Instead, we'll deal with what we have rather than hoping for possibilities, even though I may secretly hope / watch / pray for this. 

One thing that does seem to be pattern, it's all girls.  Is that because for the most part boys wear their hair short?  Or does this mostly, or only, affect girls? 

I was also advised that Chinese medicine would say this was a liver issue in Karley, possibly due to how close my older two are in age.  {15 months}  If I remember this correctly, I was not postpartum long enough, to have enough, for baby number two.  Which then would mess with the meridian? Chi? of the liver in the second baby {Karley}.  I have not looked into this further.

We won't be doing Minoxidil or any other chemicals.  We feel she's too young and there a lot of side affects.  I just don't think adding this chemical would help us long term. 

She gets biotin in her multi-vitamin.  I will at some point look into adding more than what is in the multi-vitamin.  First, I'll have to see what is recommended and what would be too much and if there are any side affects of too much.

The reason for not adding this now is since we are doing the gluten and dairy free diet, I don't want to add anything else so we can make sure gluten really is the reason {or not} for hair growth and not both. 

I am not really sure when parents receive this diagnosis but from what I can tell, most seem to be right around 4 or 5.  My guess, based on my own reason for getting a diagnosis, is that when our little sweeties are going to be going to school, we'd rather there not be anything noticeably different.  I worry that kids will ask her why she doesn't have long hair or even worse say she doesn't have any.  What will she say?  I can only see her little heart break.

That brings up another can of worms.  Do we, as her parents say anything or wait for her to say something to us.  We've decided to not bring it up until she does, or we think it's necessary.  I hope that the fact we don't make a big deal of it, makes her think it's not a big deal.  However, I think she's clued in.

When coming home from a dinner on Saturday night the kids asked for a movie night.  We said yes and then they asked about having popcorn.  We said yes to that too, then Karley in the smallest voice, from the third row of the vehicle asked, "Is popcorn gluten free".  We haven't told her she's gluten free.  We have said that Dr. M told us that she should not eat certain foods to help her tummy feel better.  I talk on phone, and my husband and I must talk freely.  Cats out of the bag.  This is fine, obviously she understands.  On the way home from the nutritional chiropractor if I asked her if she had any questions about anything that was happening, she said no.  So far, we will let her lead.  She's been really good about being gluten free, to which, I am truly amazed.

Here was the scenario with the nutritional chiropractor.  I was a bit skeptical, at the same time I also believe there is validity.  I purposely did not tell him our plans of going gluten and dairy free and we didn't do it until after we met with him.  I wanted to see what conclusions he had without my mom theory.  He did a few seemingly basic tests and a urine analysis.  He found her to have issues with her intestines and gall bladder.  {This didn't really surprise me because more often than not I was asking her if her tummy hurts ~ think BM.}  In addition, he noted that she doesn't break down her protein.  Protein equals hair.  He asked about her finger nails, I mentioned that they grow, but recently she's been biting them.  He asked if she bites them because they break, could very well be.  I rarely cut her fingernails, while the other two children's a long every time I turn around.  Not sure if this is biting because of biting or not.  I never see her doing it so I wonder if she just rips off jagged edges from breaking?  Anyway, the nutritional chiropractor recommended a multi - vitamin, a liquid protein so she could absorb the protein and bypass getting it via food as her intestines are not breaking down the protein.  Hence hair and possibly nails.  And then one other probiotic type vitamin.  We passed, at least for now, on his vitamins.  We felt if we could clear up her tummy issues by going gluten and dairy free via diet, it would do the same thing but without adding anything.  We'll see, we can always try it later.

How rare is this?  I don't think it's as rare as it may seem.  The medical community seems to not know much about it, or see a lot of cases.  However, when you talk to people, everybody knows somebody that looked like our kiddos.  But with a "it will grow" or "wait until puberty" stance, who is tracking?

I do know of one young woman, Miss A, who I will post about soon, that is being evaluated.  I am sorry that is lame say I'll post soon, but she gave me a lot of wonderful information and I need to sift through it and I'm plain beat today.

We are not doing any shampoos that are fancy Nancy {as my daughter likes to say}.  Not that I am opposed to such things as mane n' tail or whatever it is, but again, I am only doing one thing at a time.  Also, I did mentally note that somebody said they thought it just fluffed the hair.  As a hair stylist, yes, many products can do that.  We stay away from shampoos that have a wax build up, and yes, many many do.  I always suggest buying decent salon shampoo and conditioner but really for Karley, I am just fine with real bar soap.  Meaning your organic multi use bar soap.

How did I find out about gluten free.....the facebook group ~ Short Anagen & Loose Anagen (SAS & LAS) Hair Disorders.  Please join.  A women fromthe group was kind enough to send me a long e-mail with pictures of her daughter before and after the gluten free diet.  I was sold.  She also had a lot of tips, menu ideas and such.  After that I had Celiac Disease ruled out just to make sure.  You can read more about those first posts here and here.

Gluten free does seem like a lot of work.  I have a few wonderful friends who are gluten free and have helped me tremendously.  As well as the facebook group and a great friend who just knows everything about food.  It seems to me more and more people are having tolerance issues.  I menu plan so as not to sit in the kitchen wondering what I am going to make.  That helps. every. single. meal. 

I pretty much knew that Karley didn't have LAS.  About the time I was researching Karley's younger sister had a stage of pulling hair.  I was worried it come out by the clumps, it didn't.  That pretty much sealed up the my diagnosis of SAS rather than LAS.  The dermatologist confirmed that as well.  I understand that the LAS kiddos will have hair that comes out easily and without pain? 

I will update pictures mid February for any changes. I don't expect much the first month.  And I will post information from Miss A in a few days.  {We have family coming to stay with us and I know I won't get to it until after the weekend, so sorry.}

Thanks for your support, kindness and prayer.  Please do share any information you might have either in the comments or my inbox. 

God Bless!















Monday, January 23, 2012

Multitude Monday

Over the last few months Mondays with Ann have passed me by and by.  For awhile I did keep track in my own personal journal, just didn't add them here.  I heard whispers to come back, count again, I just couldn't quite decide where I thought it best to resume counting.

I never did decide on the number to resume at, just that I need to listen to those whispers. 


Spiritual Direction
School Cancelled ~ Another day at home
Wonderful weekend with my family
Husband who grills all year
God never leaving my side
My beautiful church ~ the peace I feel there

Christmas 2012


Creative play children


Children who play well together
Community that comes together for a little girl & her family
Grace to get past dog hair so we can all enjoy Piper
Change in spirit
Change in Rule
Kids learning new games



Ability to feed our family good food
Kids who eat good food
Having the same dreams as my husband
Karley being so good about going gluten & dairy free
Snow finally ~ kids love to play
Four wheel drive {snow}
Kids who ask for more Jesus books
Pajama Days
My New Thanksgiving & Prayer Journal





God Bless,

Tina















Friday, January 20, 2012

Eight Quick Takes

One of the reasons I like doing Seven Quick Takes is that it's an easy way to catch up with a variety of things that are going on.  It's the only way all these random things even begin to make sense in a blog post.  Almost like a macro facebook/twitter post.

~1~
I turned 41 last Sunday.  Yikes, that seems so old to me, only in regard to myself though.  I don't feel like 41, whatever that feels like.  I do notice a few more wrinkles, but all in all, I don't really feel a big difference.  We went to Mass followed by a birthday party for two cute little boys.  We were going to go out for dinner but were so stuffed from the burrito bar we decided to go out for my birthday as a family on Monday.  I did, however, insist on my traditional cheesecake for dessert.  YUM!  Here's what 41 looks like, in case you don't know.  I think it looks happy.



~2~
When my kids were littler I realized I couldn't save every cute outfit or thing they made me, so I decided to take pictures of them in outfits I for sure wanted to remember.  Now, I am the happy recipient of many craft projects and gifts, but can't keep them all.  An example:  For Christmas McGyver took the kids to Target to get me a present.  They each got a little something and he allows them to pretty much pick it out themselves, although he tries to give a little direction.  Henry got me a nice bracelet that has a Bible verse on it.  Karley got a beautiful picture frame {still needs a picture in it} that says "Family" and Sophie got me this candle.  I was told they smelled a couple {this is where McGyver tried to steer to scents I love} but once they smelled Mandarin Berry they were hooked because, "It smells like fruit snacks!"  There was no way he was able to change their minds.  I was very happy to burn this candle and take it's picture so as to never forget their cuteness. 



~3~
In addition to turning 41 this week I was lucky enough to pay a visit to the DMV to get my drivers license re-newed.  {I thought I was in the soup nazi line.}  My one concern was that I wasn't going to pass my vision test, I did, with some errors.  For some reason she asked me twice if I was wearing contacts then told me I missed a few.  I think it's a sign of aging.  I really can't go without them anymore. 

~4~
Karely has been gluten and dairy free {as far as I know} all week.  All in all, I'd say it's been going quite well.  She's been trying everything and most things she takes really well.  Sunday night she tried the almond milk, that was a negative, but she did have it in her cereal the next morning.  I was surprised she was willing to try it at all.  She took it just fine and now calls it her "new milk".   The kids have been really good about having fruit for snacks, with the exception of Sophie.  This girl wants her snacks, bread and pasta, fruit isn't cutting it for her.  Karley had gluten free toast one morning, she thought that was fine.  I was afraid sandwiches weren't going to work, but gave it a whirl because Henry and Sophie were begging for a PB & J.  Karley's a trooper, she had a PB & J on her gluten free bread {not even toasted!}.  Dinner has been pretty easy to adjust to, I'd say mostly it's lunch that is the hardest for me.  For the most part McGyver takes our leftovers so I need to find more lunch options or make a bigger dinner so we might have lunch leftovers.  It has gone really well, praise God.

~5~
We were lucky enough to meet Carrie at McDonald's on Monday {we had our own snacks on the way there and the kids were just excited to play they didn't care about having an ice cream cone}.  I always get great inspiration on bookmaking when I see her.  She designs books from your blog and every time I leave our visits I am so inspired to make a book from this blog!  I hope to make it a reality by May.  In the meantime, I am working on a photo book for Karley.  She was the only child I managed to make a book for last year, {so sad, now I have a lot of catching up to do}.  It looks like this years book will be about 200 pages.  I hope to finish it this weekend.  I am hoping to have it by her birthday. 

~6~
I was recently asked why do people read your blog?  I really don't know but I do know what I hope to achieve from it.  Sometimes I get away from the goal, I do get caught up on blogging for people to read, comment, etc.  Yet, my goal is this:  to create a book that chronicles our family via my thoughts and pictures.  In the process, building relationships, with fellow bloggers is a very nice added bonus!

~7~
Somewhere along the way I am trying to de-clutter our house.  We seem to be busting at the seems, that or I just like things really stripped down.  During this process, I find I have a problem of getting very sidetracked {go figure - facebook/twitter/blogging oh and every once in a great while pinterest}.  You wouldn't know it but I have indeed de-cluttered a lot from this house.  Here's an example of quick take number two and de-cluttering.  I think I may have gone a little too far, I may have ridden ourselves of all the board puzzles.  Poor Sophie.



~8~
I know it's only supposed to be seven quick takes but I just wanted to mention that next week I am giving away a new book by Antony DeStefano
Have a great weekend!

Tina







Saturday, January 14, 2012

Short Anagen Syndrome ~ Part Two

You can read part one of this post to know more about how we came to the Short Anagen Syndrome results and this post will explain why we are going gluten free. 

Last week we had Karley tested for Celiac Disease to rule out a severe gluten issue.  Gluten seems to be beocming more of a link to SAS/LAS.  I had hoped that Celiac Disease was the answer, but after a lot of reading and talking with my sister, I realized we do not want her to have Celiac Disease.  With CD are a lot of other negative things that can happen.  I also now realize that CD and gluten intolerance can be different, at least that's what I believe to be true, although I am not a medical doctor, just a Mom with a hunch.

While we waited for the CD results to come in I got a book from our library called, What's Eating Your Child by Kelly Dorfman.  I find it fascinating, with one problem, it's going to cause me to break my New Year Resolution of not buying books for 2012.  I have the brand new library copy and want to underline like crazy.  Contrary to what our ped doctor says, I do believe that Karley could have a sensitivity to gluten without having Celiac Disease.

Also, while waiting for her test results we took her to a chiropractor/nutritionist.  He performed a couple of tests {I did not mention my thoughts on her possibly having an issue with gluten}.  He came up with a few things, two major.  She is not breaking down her protein {hence the hair growth} and has a gluten sensitivity, maybe that's one in the same.  He recommended a few things among them gluten / dairy free and re-visit in 30 days.  Because I am measuring hair growth I want to do this for three months minimum.  {Please pray for us that we can do it for that long and of course success.}

I also want to add one of the reasons we decided on researching the gluten free avenue was that a friend from the facebook group e-mailed me pictures of her daughter explaining how she arrived at going gluten free.  One of the things that she mentioned was that she had a chance encounter with Dr John Kim who suggested going gluten free.  She was kind enoug to send pictures that reflected noticeable changes, food suggestions and how to shop.  What a blessing! 

Our ped doctor called to confirm that Karley does not have Celiac Disease {Praise God!}.  The doctor has little faith that going gluten free will work, that it's a fad diet and that if a person doesn't have Celiac Disease they aren't sensitive to gluten.  She did offer that going gluten free won't hurt anything and wished us the best of luck. 

And I'll take the wish for luck, we probably will need it.  Any prayers that can be offered up for Karley {and her food providers} would be even more appreciated.

Now it's game on. 

This morning I vaguely filled out a one week meal plan {I can usually breeze through two weeks}. It was a little harder this time around.  I did get a little advice from Misty and a few other tweeters and I was able to pull together a list.  I have a few more recipe books coming as well.

Our plan was that together as a family we would go gluten free in hopes that Karley would see little difference.  My thought was that things would be a little more expensive but I had no idea just how much.  Needless to say, when it comes to buying pasta, I will be making gluten free for Karley only.  It's expensive.  I also need to learn where I can get more for our money, where / when to make things differently for her.  I can see one challenge will be school snack.  They have to bring a store bought snack to share.  So for two days a week I have to come up with something relatively inexpensive for her to eat {willingly, while other kids are eating fruit snacks}.  At home we'll all be eating more fruit and veggies, but school will be different. 

Needless to say, I am feeling a little bit of an uphill climb right now.  It was thinking I would be able to make anything with gluten free flour.  That doesn't seem to be the case, instead there are many ingredients that need to go along with the gluten free flour.  I will forge on, do more re-search and find better ways to shop.  I'll stick with one week at a time in hopes to not be so overwhelmed, thinking about how to do this.  Baby steps.

I hardly think gluten free eating is a fad.  It seems it can be a difficult, expensive way of eating and at times not quite as fun ~ who doesn't think pizza is fun?  I also realize that we are lucky to have so many options today compared to 5-10 years ago!

Any tips, tricks and shopping advice is greatly welcomed! 

I will post some things I learn along the way and hopefully be able to post progress reports.

A huge thank you to all who have shared your thoughts, prayers, concerns and advice.  We love our little girl as she is, we only hope that we can help her in her hopes and dreams, now and forever.




In Christ,

Tina

Friday, January 6, 2012

Short Anagen Hair Syndrome ~ Our Journey Part One

I've held off on writing about this for quite some time, but have now decided to share.  My hope is that our journey might shed some light for others.  What we do or don't may or may not change the outcome but we are willing to try.

This is Karley's story:

Prior to two, her wasn't growing and we were giving it time.  Henry's hair was much like Karley's but then after two, his hair was growing normally.  We waited with Karley until after she was two.  We saw little growth but didn't do anything about it, but it was always in the back of my mind.  {When I say normally, I mean approximately a half inch a month.

Then she turned three.  We heard a lot of, "oh, will grow, give it time", "She's fine, it will grow."  Just prior to her starting school, I really wanted answers.  I started googling and came up with Short Anagen Hair Syndrome.  As a hair stylist, I'd never heard of it, nor had I seen anybody who mirrored Karley.  A few clicks, an even better understanding of hair, and finally a facebook page for Short Anagen / Loose Anagen Hair, I knew that's what she had.  There are many girls who look very very similar to Karley.

Short Anagen Hair Syndrome ~ is a condition where hair does not grow beyond a short length, due to an unusually short duration of active hair growth (anagen phase).  Most cases are associated with fine blond hair.

I talked with her pediatrician, {who was one in the camp of, "it will grow"}, had never heard of SAS.  I was referred to a dermatologist office.  Since I was pretty confident that her hair had a short anagen life, I didn't see a reason to go to a specialist but did request somebody who was familiar with children. 

Pretty much one look and the Dermatologist confirmed her to having Short Anagen Hair.  She also has some scalp condition {like cradle cap} but that wasn't the cause but certainly wasn't helping any new hair growth.  She gave me some tar shampoo and that was it.  There is also a condition very similar called Loose Anagen Hair Syndrome but we didn't feel this was Karley's case as her hair doesn't come out easily when pulled.  We have Sophie to thank for this confirmation.

There isn't a cure for SAS.

I reported back to her Pediatrician and left the facebook group.  I was heartbroken.  I didn't want to be reminded of this.  We see our daughter for how beautiful she is and as parents hope to help her see her inner beauty that shines tremendously.  But, in the back of my head, I hear people throughout my life speak about this or that person who has "two hairs on their head", "doesn't have any hair", etc all in a negative fashion, {like the person could help it?}.  I remember sitting with a group of women telling them about my daughter, then they start talking negatively about older girls who, blah, blah blah.  I cringe.  I hear this as my baby. 

Karley starts school, we move on.  Until recently when we've noticed her interested in hair.  She pets her cousins pony tails, she hand brushes her sister's hair and she hand brushes her own hair, in what looks like hopes of it being longer.  All the while, never saying a word.  My husband and I just exchange looks of sadness for a little girl who would love piggy tails.

I re-join the facebook group.  This time I see a few people talk of a Gluten Free diet.


Part Two can be read here

In Christ,

Tina

Thursday, January 5, 2012