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!















11 comments:

  1. I find this so interesting! God certainly gave this special girl to you because He knew you would do all the research so lovingly.

    ReplyDelete
    Replies
    1. I hope I didn't bore you Colleen! That was a long post without pictures! I pray it works! Thanks for the encouragement!

      PS. I re-sent this in hopes that it did go directly to you. Did it work?

      Delete
  2. My daughter also did not have the MMR and I don't understand the whole liver thing, but she was the first child. Oh and my son, who is 2 1/2 probably has it as well. He has not been tested, but his hair is exactly like Malika's. It only grows long on the sides, which I cut. He has had 2 haircuts, but barely any, so I guess only time will tell. But, it doesn't matter all that much for him, since he is a boy.

    We won't do minoxidil either, I actually thought about it and looked into it, but, from what I understand you can't stop or the hair will start to fall out. And you also aren't supposed to use it while pregnant, and though my daughter is only 4, I hope one day she will have children.

    For now, we are only doing GF, but may try no dairy too. But, we just wanted to do one thing at a time. And I really think it may be working. I think only time will really tell, but I think it really does look longer. I keep asking my husband and he doesn't notice, so who knows. :)

    ReplyDelete
    Replies
    1. Please do keep in touch Crystal. I would love to hear how it's going. I think we may have started the diets around the same time.

      Karley did have MMR and I can't see using Minoxidl right now. Maybe in the future, but right now it's not a concern for her so I'm pushing.

      The dairy free was due to the possibitly of the vilia hairs in her intestines being destroyed from the gluten intolerance.

      Best of luck!!!

      God Bless!

      Delete
  3. Tina, you are awesome!!!! So thankful Karley was given such an amazing, thoughtful mama!

    ReplyDelete
    Replies
    1. Thanks a ton Jolene! Hope to see you soon!

      Delete
  4. I have never heard of this! I saw this the other day and wanted to come back when I had more time, so I plugged in my pump and pumped while finally reading!!! We mamas can multi-task if anything else!!

    I pray for you and all you go through in finding out what is best for your sweet daughter. I do know that God knew He was picking the very best parents for her from the beginning of time and she is very blessed to have you, as you are her.

    ReplyDelete
    Replies
    1. Love the multi-tasking Jamie! :)

      And right back at ya....He knows great parents for your sweet sweets!

      Praying all is well for you!

      Delete
  5. For some reason I just noticed today you posted this. You are doing a great job mama! Hope it is going well! Let me know if you need anything. Love you - Holly

    ReplyDelete
    Replies
    1. Thanks Holly! We are enjoying all the treats from you via Azure! Love the rice cakes. I've replaced pb toast with those. YUM! You are such a great resource! You have helped our family a lot with your knowledge! Thanks! Love you!

      Delete
    2. Tina I haven't seen any updated posts in over a year. I have a daughter that has SAS she's 7. Did the Gluten free diet work?

      Delete

Thanks for making my day!