GAME CHANGER!

I haven't been on here in a while, and that's mostly because I haven't had much to report.  Little girl's eyelashes have been absent from her face for over 2 years, she's had episodes with her brows here and there... but nothing has really changed.  We still watch her diet as much as we can, keeping gluten and sugar intake down.   
The game changer came when a friend of mine finally convinced me to try Shakeology.  The ingredients in Shakeology are pretty much all the recommended supplements that help curb the urges to pull:  Probiotics, prebiotics, digestive enzymes, amino acids and so many other super foods I couldn't list them all!  
So every morning, when I make my shake, I give her about half of it, and mix a little extra powder probiotic with it.  I'm not sure if it's helping her not pull, or just making her lashes grow faster, but either way she has some lashes coming in and they've stayed put for the most part!  
Anyone who is interested in trying Shakeology as well can order it HERE!

BFRB Awareness Week is October 1-7th!



Trich Awareness is coming! This year we're trying to get as many people as we can to wear BLUE and GREEN on October 7th. 

 

All you have to do is:

• Search my event on facebook:  Trich Awareness Day - Wear Blue & Green
• Click on JOIN
• Wear blue and green on October 7th. 
• Share this event on facebook and invite all of your friends. 
• Take pictures of yourself and others wearing blue and green and post them on our wall!

 

 

Picture Day!

Today was picture day at school. I remember how hard it was last year, as I tried to paint some eyebrows on my little girl.  This year we didn't have to do that!  I'm so proud of how far she's come in the past year!  She is so awesome :)

Let it Go!!

Are you getting sick of that song yet??  We have listened to it so many times now that we are now listening to it in Spanish and Japanese just to keep things fresh!

So it's been over a year since Trich first appeared in our lives.  What began as confusion and frustration, is now hope and acceptance.  A huge step for me personally was to "let it go".  Now, I hardly notice my daughter's missing lashes.  I don't get as frustrated or angry with her when I catch her doing it. Sometimes we even joke about it and try to make light of the situation.  The other day I was singing to her "Let em Growww" and she rolled her eyes at me as if to say "mom you're such a dork". But at the end of the day, it's her face, it's her hair, and I can't control trich any more than she can.  It feels good to let it go.  I'm not saying we are giving up on helping her; we're just not letting it consume our lives.
Over the past year we have learned a lot.  We are doing the best we can between supplements and diet modification.  We have had some success managing the severity of her pulling.  She has full brows again and hasn't pulled them in months!  We have also accepted the fact that trich is here, and there are good days and bad days.  We have educated ourselves, our friends, and our family.  My little girl can now pronounce the word Trichotillomania and tell you what it means, almost with pride.  She also gave purple awareness bracelets to her teacher and her therapist, and isn't afraid to talk about.  She really owns it, and I'm proud of her for the progress she's made!

Severson Sisters

Not too long ago my little girl asked me not to pull her hair back
into a pony tail because she didn't want anyone to see her bald
spots in her eyebrows. It really hurt my heart to know that she was
worrying about this or even cared what other people thought. I
asked her if anyone ever said anything about her eyebrows and she
said no. I found it really hard to believe something or somebody
didn't provoke her concerns, but granted her request to leave the
hair down.
This led me to think about what I am going to do the day that
somebody actually DOES notice, and says something to her. I'd like
to think I have her prepared to tell people what her disorder is.
She knows how to pronounce the word "Trichotillomania" and she can
tell you exactly what it is. But is she prepared for any harsh
words that may come her way? Am I?
That's when I remembered Severson Sisters...
Founder Carrie Severson had been a High School friend of mine and I
heard about her nonprofit a while ago but didn't know how it would
apply to my life, until now.


Severson Sisters is a non-profit organization that empowers females
in the world. We provide programs and services that help girls
‘Connect to their Inner Super Girl.’ Our mission is to inspire
Super Girls of all ages to live their life as their authentic,
awesome, super self. Severson Sisters plays a role in the lives of
Super Girls to help them become confident Super Women who will lead
their communities. We do this by offering a creative and supportive
program called the Super Girl Program.
SeversonSisters.org
 

I realized I would like to become a part of this organization not
only for my daughter, but for other young girls who have ever been
bullied because of Trich. I am currently raising the funds to become
a certified facilitator. If you get the chance, stop by and donate!

http://www.gofundme.com/83g3zw


Thank you all so much!!!

When Everything Happens for a Reason...

A lot has transpired since I last wrote.... Good, Bad, Ugly and GREAT!
The past few years have been especially hard for me, trying to balance a full time job with family life.  My career had been less than satisfactory and was heading nowhere, leaving me uninspired and bored.  I have looked here and there for a new job but there hasn't been much out there in my field.  I didn't want to rock the boat too much, I had been there for 10 years, I had a steady paycheck, I was comfortable.
Not long ago a job opportunity was presented to me.  It wasn't something I would normally go for, and didn't really think much of it at first.  I did a couple phone interviews just to keep my options open, and eventually landed an interview, and quickly became excited at this new opportunity.  My interview was scheduled for a Friday afternoon.
That Friday came and I went to work as usual.  I've been experiencing a bit of anxiety at work, feeling as if my days were numbered.  That morning I got laid off.  I wasn't particularly shocked, and almost felt relieved.  I had a couple hours to clean out my cube, pull my shit together and get to my interview.
I didn't have time to even process what had just happened, and went in pretending like it was tomorrow's news.
I ended up having the interview of my life and met with some awesome new people with a great company!  As I was leaving they told me they wanted to present an offer to me by that Monday.  I couldn't have asked God for more at that moment!  Who gets laid off and hired all in the same day???
Long story short, I accepted the position!  I took a few weeks off to spend with the kids before starting... we went to spring training games, played outside, went to the movies and I snuggled them a lot!  It was so refreshing and relaxing!
I miss their little faces but I've started my new job this week.  It has been a really good change for me and I have a lot to learn, but I'm confident it will all come with time.  It's a completely different industry than what I'm used to, but uses very similar technology than what I am familiar with.
I'm really excited because I have been enrolling us on our new health insurance and it's going to cover WAY more than my previous plan.  I've switched the entire family to the new plan and we will now be able to take little girl to all her appointments without paying an arm and a leg!  This has been a HUGE relief for me, I finally feel like I can take care of my family.  Her therapist and her ND will now be covered.  Even though we have backed away from the consuming Dr's appointments, I'd really like to get her diet on the right track and eliminate the guesswork.
I know with all this new coverage I will have a lot more to report, I promise I will share what I learn!

A Few Facts About Trich

The biggest reason I started this blog was to spread awareness and educate people about trich.
Everyone is going to have their own opinion on how to handle it, and every case is different.
If you are a parent of someone with trich, I am sure you are like me, reading every book and article about it, trying to figure out what will work for you and your child.  Here is what I have learned so far.

• What works for one person may not work for another.
• There can be many "types" of trich with multiple levels of severity.
• There is no "cure" for trich, and unfortunatley, there is no magic pill that will make it disappear.
• Although antidepressants and anti-anxiety meds have helped some, most experiences that I have read from the parents group that have joined online say that it has worsened their child's trich and they ended up taking them off.
• This leads me to my next point.  I will NOT medicate my daughter for trich.  She is only 5.  She has been seeing a therapist who has experience with trich, and she tells us that she does not need medication.  (Which I fully agree)  She reports that she is a very happy, confident and outgoing girl, who apparently loves anything shiny and sparkly!   
• GAPS (Gut and Psychology Syndrome)  If you haven't read about it yet, I highly recommend you educate yourself on how your digestive system affects your brain.  Although I would love to try this diet out with my daughter, she is WAY too young to understand why she can't eat normal food for 6 months and beyond! 
• That being said, my next point is diet.  I'm sure you have read about how bad processed foods, GMOs, high fructose corn syrup and hydrogenated oils, ect. are for you.  Yes we have heard about how our bodies cannot process these things, but did you know this not only affects our weight but our brains as well?
• Food allergy.   Allergies to food can affect the body not only physically but mentally.  We found out little girl has a dairy allergy.  Although it has never really made her physically ill, it could have affected her gut enough to eventually cause an imbalance within her brain.
• There are certain "triggers" for trich.  The most popular misconception is that the person suffering from trich has high anxiety.  THIS IS NOT TRUE!  My daughter does not have anxiety.  We actually pinpointed some of her triggers and her favorite time to pull is when something exciting is going on.  Her birthday, holidays, even going to a friend's house creates such an excitement in her that she can't settle down, so she pulls to relax. 
• You don't "grow out of" trich.  She will most likely deal with this for the rest of her life.  The only thing we can do as parents is give her the tools to manage it the best she can.  The most encouraging thing I ever heard was from a friend who told me how she pulled out her brows when she was little but never did it again after that.  But she admitted she still has the urge to pull to this day.  I believe after all the personal experiences I've read from, that the "urge" never really goes away, but you find ways to overcome it. 
• Exercise!  Exercise!  Exercise!  I have found a few children's yoga movies on our Amazon Prime that my daughter likes.  It's called "Kinda-Yoga" and she absolutely loves doing it before bedtime.  As I mentioned previously, she gets really excited and doesn't know what to do with all that energy.  I find if she's outside riding her bike, running up and down the street with her friends or does her yoga, she is more tired and able to sleep at the end of the night.

There is so much more out there and I am continually interested in learning more about trich.  I hope in the near future to become a little more involved in the actual community of girls that this disorder affects. More to come on that!

Frustrated

This post is about a week behind in publishing, but it has been crazy in our household the past few days!  First I was sick, then all kids ended up with pink eye, and we ended it all with a little touch of the stomach flu.  Lovely!!!
I'm glad I was delayed in writing though, because it gave me a chance to calm down a bit and recompose myself before going on a rant. 
Little girl had a rough week and pulled quite a bit on both of her brows again.  It always makes me a little upset and sad when she has a bad episode but I try to hide it the best I can so she doesn't feel bad about it.  There wasn't anything in particular that triggered it, unless her eyes were getting itchy from the pink eye and one thing led to the next... But what was most frustrating is that she deliberately took her gloves off and went back to bed without them TWO nights in a row!  I know she has a hard time falling asleep sometimes so we take extra time to rub her back until she's relaxed.  But when she wakes up in the middle of the night it's impossible for me to help her unless she tells us.  We've told her many times to just come in our room if she's having a rough night and we won't get mad at her, we're here to help her.  But, it just goes to show how powerful trich can be, and how it literally takes over and in a matter of 5 minutes, all the hard work goes down the tubes.
Prior to this episode she had been doing OK, mostly just pulling the lashes.  I rarely even notice it anymore because I think I've gotten used to the way she looks without them.  Her brows were almost completely grown back.  We've been on a gluten free diet, going on 2 months now.  I've read that it can take up to 6 months for the gut to heal from any gluten damage so I'm not completely giving up on it yet.  She is still on the pro biotic and NAC daily.  I'm making a second attempt to give her the Calm PRT, which is a supplement to calm her down before bed.  Since she is waking up at night, I'm hoping this will help her stay asleep.  The problem with it is that it tastes horrible.  It's in capsule form, and since she can't swallow it I have to break it open and mix it with something.  I've tried ice cream, applesauce, and juice and no matter what you can taste it.  I told her she's just going to have to suck it up and chase it down with milk.  So far she is being a little trooper about it.
Coming up we have a few appointments with Miss Brigitte and I think we should see the ND again to get an update from her as well.  Updates to follow!

The Happiest 5K on the Planet

Little girl and I did the Color Run again this year!  This is our 3rd year in a row, and it was probably the best one yet!  As I have mentioned in past posts, my daughter has endless amounts of energy.  This was a perfect, fun way to burn some of that energy off.  We thought we'd just walk but most of the way she kept yelling "Come on!  Let's RUN!"  So we'd take off running to get doused in colorful powder. By the end of it we looked like we ran through a rainbow.  We were a mess but it was totally worth it!

Gluten Explained

We have decided to take another stab at a Gluten Free diet!  We noticed once she was consuming wheat bread again, her pulling was worse.
Here is a really good video breaking down what GLUTEN really is and how it can affect our brains.  I really like the way this guy explains it.

Gluten Explained

When the Gloves Come Off...

So Little Girl has been doing pretty well overall.  She still pulls but not like the first time where she took it all off in one day.  Her brows were growing back really nicely but lately they have been at that length where it's really tempting to pull again.  She hasn't been able to pull all that much because we've had her in gloves at night.  Lately she has been waking up at some point in the night and taking her gloves off and pulling at her brows.  She has a pretty nice chunk going on one of them now, and looks like she's taken a few out of the other side now too.  Her lashes have been pretty much gone for a while now but I guess I don't even notice it anymore since I'm getting so used to her without them.  But the brows!  Not the brows!!! 
We've had her on NAC for just over a month now and I have heard others say it takes up to 8 weeks to notice a difference.  It's exhausting to remember to keep her on all these supplements, and extra frustrating when you see all that hard work go down the drain in one night.  The gloves were our savior for a while, but what do you when the gloves are off?  Try try again...

Trich Makes the NEWS!

As I was getting ready for bed last night, I heard this story on the Phoenix news! Although it wasn't groundbreaking information or anything, it's good to know the word is getting out about this disorder. We're making some noise! The more we talk, the closer we'll get to finding a cure. Very exciting!

Stroudsburg salon offers hope for sufferer of mysterious ailment | PoconoRecord.com

Stroudsburg salon offers hope for sufferer of mysterious ailment | PoconoRecord.com

Cheat Sheet

Here is a really good cheat sheet I found online that explains what neurotransmitters do what and which supplements can help regulate them:

from: http://www.lef.org/magazine/mag2011/mar2011_The-Chemistry-of-Calm_02.htm

Thanks

I just wanted to take a minute to say thanks to our family and friends who take the time out of their busy lives to ask how little girl is doing.  Whether it has been meeting up for lunch, going out for a drink, sending thoughtful little trinkets to her, or even a simple phone call, it has meant the world to us that you care!  A strong support system is going to be just what we need to get through these rough times.  As the song goes, "That's what friends are forrr!"  So, many thanks! xoxox
 

Lab Results

So it's been a while since I've had a chance to post the results we got back from the lab.  A while back we did the neurotransmitter test and the results were not shocking, but helpful to see I suppose.
All of her excitatory neurotransmitters were higher than the normal range.  Her Glutamate, Dopamine, Norepinephrine and Serotonin levels came back very high.  
The ND suggested that she take GABA (GAMMA - AMINOBUTYRIC ACID) to bring down the elevated glutamate levels.  She is supposed to take it a half hour before breakfast and before dinner.  
This hasn't been too hard to do, since they are grape flavored and chewable or dissolve under the tongue.  The second supplement that was recommended was the Calm PRT, which is supposed to promote sleep, reduce excitability and re-establish a healthy HPA (hypothalamic-pituitary-adrenal) axis.

This all sounds wonderful right?  Finally!  A cure!! 
Well, we have been really good at giving her the GABA, but it has been really hard to give her the Calm PRT.  It is a horse pill that smells and tastes like SH*T!  So everything I try to mix it in with she can taste and refuses to finish.
I wasn't too worried about the Calm PRT because she really wasn't having too many problems sleeping anyways now that we are spending more time with her at bedtime, rubbing her back until she falls asleep.

Call me crazy, but ever since we started her on the GABA she has been 10 times more hyper!  The girl is bananas lately.  I can NOT keep her busy enough and everything excites her beyond control.  I have mentioned this to her ND and she said she's never heard of that happening.  

I tried a second real attempt at making sure we give her everything when she's supposed to have it, how she's supposed to have it, but its impossible.  I feel like she was doing better before.  She has recently pulled all of her lashes again, completely gone... and today I got her to finally admit what I have been suspecting:  she has pulled her hair.

I think I will be taking her off of the supplements and trying the NAC with vitamen C that everyone swears they have success with.  
As far as school goes, she is excelling in every area and her teacher says she is amazing.  Her therapist continues to tell us how gifted and smart and happy she is.  We will not be seeing the therapist again unless little girl needs it. Right now she is too young for trich to really be affecting her life, but if it ever does become a challenge for her, she knows she can go see her Miss Brigitte!   

Trich Awareness Week

This year, Trichotillomania Awareness Week was October 1-7th.  To raise awareness I forwarded some really useful info geared towards schools and teachers on to my daughter's Kinder teacher.  She was very supportive and said she has forwarded it on to others.  I believe that communicating with her teachers regarding her trich is going to be the key to her succeeding in school both academically and socially.

I also ordered a bunch of these purple awareness bands.  A few people have seen me wearing mine and asked if I could get more.  They have arrived so if anyone is interested in purchasing one for $5 please let me know and I will send one to you!  Show your support and spread awareness!!!

Rainbows and Butterflies

Suddenly my little baby girl is WRITING!  How cute is THIS??  She has been making signs and taping them all over the walls in the house.  I absolutely love her creativity... She reminds me of myself when I was little.  I could color for hours on end.  I guess there is something therapeutic about art, and I'm glad she has found yet another means of expressing herself.  We are definitely filing these in her memory box so when she's all grown up we can look back at them. 

Happy Birthday to my PRINCESS!!

This past week our daughter turned 5!  She has gone from being my first born baby to a 5 year old little girl in the blink of an eye!  I feel like there is a huge difference between ages 4 and 5, and she has developed her own little personality.  Not that she wasn’t ALL personality before, but now she’s even more confident in the person she is becoming.

   

To celebrate, what better theme than a “Sofia the First” Royal Birthday Party?  She has been very excited about her birthday all week.  First she had a little celebration on her actual birthday at school, followed by a birthday dinner with the family.  Instead of the restaurant bringing her cake or ice-cream, we asked for a strawberry lemonade icy and they happily obliged.  This past weekend we celebrated her birthday “Princess Style” with family and friends!

With all this excitement I was trying to keep an extra watch on her pulling at bedtime.  She has been doing great lately, her eyebrows are almost grown back to normal.  Her lashes are still quite stubby, but not too bad.  They definitely take longer to grow back than the brows.  I checked on the baby monitor the night before her birthday party and sure enough, she had pulled the gloves off her thumbs and was kind of hiding under a pillow.  I try not to be the “pulling police” but if I see a chance to help her I will step in.  So I went into her room and asked her why she had her gloves off and she said she was pulling her lashes.  I asked her if she wanted me to sit with her for a little bit longer until she calmed down.  She loves it when I scratch her back or stroke her hair, so we’ve been doing that every night until she’s calm enough to drift off to sleep. 

I think this extra one on one time with ME has REALLY helped her settle down at night, and the pulling has decreased a little bit.  Ever since baby brother was born, the bedtime routine has usually been for me to feed the baby and put the boys to bed, and daddy reads to her and puts her to bed.  This extra Mama time has been really good for her.  It’s a little exhausting for me, as I spread myself thin between the 3 kids, but I know it’s just something I have to do until everyone is relaxed enough to finally fall asleep.   One day it will get easier…. Right??