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??

Favorite Blog

This is the young lady who inspired me to start my own blog. I have been following her blogs since I found out about my daughter. Again, another great role model for her! 

This is her blog: Last Lash  Check it out!

 

Magic Gloves

 

The Band-aids were getting to be a little much and irritating her skin so we found these cool little gloves!  They cover just her thumbs so she can't grab on and pull.  And she can put them on herself, double score!   You can find these gloves on Amazon for about $30

Role Models

I'm glad my daughter has inspiring role models like these to lead her through this! Go Mrs. North Carolina!!

The Trichotillomania Puzzle

Trichotillomania really is puzzling!  It's definitely something that you think is gone one day, then it's back the next.  We've been doing a lot to help our daughter figure out how to manage this; Naturopathic Doctor,  Behavior Therapist, fidget toys, reward system, diet change... you name it!
One thing she has REALLY taken to is doing puzzles.  Thank goodness for the dollar store!  She can do 100 piece puzzles by herself now, and is always ambitious to start on a new one.  We have even let her keep her bandaids off during the day because she has been so into her puzzles and she said "it keeps my hands busy"  Oh she is so darn smart!

Vacation

I know I haven't blogged in a while but that is because we took a family trip back to see our families in the Midwest.  The husband is from the Chicago area and I am from the Milwaukee area.  He usually goes back once a year to work a soccer camp and he wanted us all to come back with him this time.
It has been somewhat of a challenge traveling and dealing with the special diet requirements and getting the kids on schedule. We have been running around like crazy and ordering and eating out a lot.  I know there have been several times we have let her eat things that probably had egg in them or weren't the healthiest decisions.
Although she had a little pulling party on her eyebrow before we left, she had been doing pretty good providing we had band aids on her thumbs.  We even forgot the other night and she came out to remind us.  Huge step!!!  How great is that for her to know she needs to have those on??? Love that girl!
Unfortunately even with that breakthrough,  the other morning while we were at Grandma's I noticed her top lashes were quite bald again.  Shoot!!  They were just starting to get long again.  She said she did it when she woke up that morning. She did have the band aids on but they were kind of old and probably getting sticky enough for her to grab on and pull away.  So now she is rubbing her eyes all the time again because they itch from all the dirt and dust getting in them. 
Luckily, we are home now and getting back on track.  We forgot her probiotic at home so she was off that for the past week and our diet is back to being dairy free.  She will also be seeing the Naturopath for another follow up and Miss Brigitte will be speaking to us about her observation with her.  The NeuroScience test should be scheduled soon so I will let you all know what we find from that, and when Amino Acid supplements will begin.

Other Good News!

Our insurance has agreed to cover the Naturopathic Dr. and the Psychologist!  It took us a while, but we had our pediatrician write a letter as well as the Naturopathic Dr. explaining her need to be covered by these types of Dr.'s.  So ask and you shall receive...  It's a process but you CAN get what you need if you are persistent enough I guess!

Worry Dolls

So the princess met with Miss Brigitte today, we like to call her our "family helper".  As far as we know it went well, we weren't in the room with her so Brigitte will meet with us next time to tell us what she observed.  She gave her these little worry dolls:

"WORRY DOLL LEGEND - There is a legend amongst the Highland Indian villages of Guatemala: "If you have a problem, then share it with a worry doll. Before going to bed, tell one worry to each doll, then place them beneath your pillow. Whilst you sleep, the dolls will take your worries away!"

As soon as I got home she showed them to me and told me all about them.   They are these tiny little wire dolls wrapped with thread.  I already stepped on one on the floor.  Lovely!  I told her to keep them safe and away from baby brother so he doesn't eat one.
You can find them here on Amazon!

So Ya Had a Bad Day...

Little girl had her Kindergarten screening today.  She was being tested for early entrance since she missed the cut-off by 4 days!  4 DAYS!  How annoying is that??
So she had to be tested.  It took about an hour, and when she was done she came skipping along to tell us about kindergarten.  She said she might have forgotten some letters and some numbers, but I told her that was ok.  I really wasn't sure how she would do testing in, and heard only about 20% get accepted.  But she's super smart, what difference can 4 little days make???
Well, unfortunately they called pretty quickly to tell us she got into "Kinder-Kid" but not Kindergarten. Kinder-Kid is still kindergarten but they only offer it at certain schools, and the class sizes are smaller and closer to her age group.  So she won't be attending the school of our choice, with all of her other little Aztyke pre-school friends, but she will still be starting K in the fall.  It's just really frustrating that because she missed the cut off date by 4 stinkin days, she was required to know all this material that half the kids already in kindergarten don't even know.  Ridiculous educational politics at work again.
To add to our frustration, the husband came home later and noticed some pretty nice new bald spots in little girls brows.  She said she was tired and went to her room and that's when she did it.  Her fingers were taped but she managed to get ahold of the tiny new hairs anyways. I told him not to feel bad, it's going to happen a million more times and we just have to accept that.  Eyebrows or not, she's still my pretty little princess! 

Miss Brigitte

So the husband and I had our first visit with the psychologist the other day.  It was just us, she will meet the little princess later.  We feel like we've know this lady all our lives!  What a great conversation we had about our families, nutrition, fitness and neurotransmitters!  I'm glad we found a therapist who agrees with our treatment with the naturopath, and agrees that this will play a huge roll in helping control this disorder.  She is very excited to meet her next week, I mean, who wouldn't be?  She's such an awesome little girl, I wonder myself what's going on in her little head sometimes.  It will be interesting to see what Miss Brigitte thinks of her sparkling personality! 

Farmer's Market Produce Box

I love going to Ahwatukee's Farmer's Market!  We got soooo much stuff last time for $23.  I almost didn't know what to do with it.  Never going to Fry's for produce again!

Winter Produce Box

What Does Food Allergy Have to do with Anything?

A few people have asked, ok, so you found out she has a dairy allergy... what the heck does that have to do with pulling eyelashes out???  It all has to do with our neurotransmitters.  I'm sure you've heard this before, but more and more we are learning how most of our health is regulated within the GUT.  I'm not even going to try to pretend I know everything about this, so here is a link to one of my favorite sites that explains it perfectly:

Stop Pulling Hair Out

Just Got my Mind BLOWN!

Little girl had the NEAT test today.  (Natural Elimination of Allergy Treatment)

It was an amazing experience.  Basically what they did was have her hold on to this little metal wand with one hand, and as the Dr. clicked on different foods on her computer, she touched her finger on the other hand with the probe to detect any energy from her body that indicated if she was allergic to these types of foods.  After going through quite an extensive list we found that she has a reaction to cow's milk, cheese and eggs.  She then took this "problem energy" and collected it into a vial of water.

Hold on... it gets better:
So they tape the vial of the bad energies to her wrist and told me to stand behind her without touching her.  I was to hold out my arm, and resist the Dr. pushing it down.  Ok, so I was pretty able to resist her pushing.  Next she had me hold on to her wrist with the vial and this time she was able to push my arm down much easier!  Fascinated!  I made the husband try it too.  We both looked at each other amazed yet puzzled.  How in the world????
The Dr. explained to us how these problem energies are making her body weak.  We could actually feel the problem energies through our own bodies!   
Using these problem energies she created a "medicine" vial which she then added to her wrist as well.  She had to keep it on for 15 minutes.  After 15 minutes we repeated the test with the husband and both times he was able to resist the Dr. pushing on his arm.  
Needless to say, the medicine vial balanced out the energy of the problem vial.  This is all way over my head but this is how I understood it, I hope some Dr. doesn't get on here and bash everything I just said, haha!  I did my best to retain the information given :)
So for now we are to keep her off of dairy basically, and see the Dr. again in about 2 weeks.  We are still battling with the insurance company to get these visits covered, but the naturopath and the pediatrician are doing everything they can to help.  We also finally have appointments with the behavior therapist later this month so there will be more to report from that department!  

We're Not Alone

Did you know that 1 in 50 people are diagnosed with trichotillomania?

And those are just the people who actually know what it is and realize it has a name.  My husband just spoke to one of his best friends yesterday and found out that he has been pulling some of his facial hair out from the neck area for years.  He didn't know there was a name for what he was doing.  I'd be really interested to see if he decides to change up his diet and if it has any effect on his urges to pull.  I hope he doesn't mind I'm using his story but this whole thing is just fascinating to me!

Confession:  I am also a “cheek biter”.   I bit the inside of my cheek the whole time I was writing this.  I don’t even know I’m doing it sometimes until the damage is done.  I am also changing my diet along with my daughter in hopes that it will help me as well.

We have the NEAT test on Monday, I can’t wait to see what we find out.  Stay tuned!!