Well, it's been 6 months since I last wrote in here. There's a reason for that. I didn't feel like I could talk about health, life, autism stuff, etc until I could get to the bottom of a crisis that popped up here. Now, 6 months have passed and I'm still not to the bottom of it but I'm a lot closer. And a little more blind from reading and studying a bajillion pages of medical research and following a bajillion threads. Yep, a bajillion is a lot and that's what it feels like. I also needed permission from my oldest daughter, Alex, to write about this. She told me today that I needed to because it might help someone else. So, deep breath...here goes...
At the end of April, my incredibly gifted, intelligent, beautiful daughter tried to kill herself. We didn't see clues to this ahead of time.  Don't most parents say that?  Probably.  A little on her background. She is my Aspergers kid. Aspergers is on the Autism spectrum, at the high functioning end. She can go for long stretches of time without it really bothering her or being terribly noticeable. Other times, it's very obvious.  Close friendships are difficult for her and many social situations are outside her comfort zone. She struggles with lights, sounds, and crowds. She also has OCD (obsessive compulsive disorder) that can take over her life and make everyday life and tasks difficult. Add in anxiety and occasional bouts of depression and you have a recipe for a mess. This is one of the reasons that we eat the way we do. Dairy and grains can cause inflammation everywhere in the body, including the brain.  A brain that already is functioning in a way that feels mis-wired can go off the rails pretty quickly. She had been accidentally glutened, hadn't been sleeping, had stopped taking some vitamins that were essential.  She had felt out of control. While in the hospital, an infection was found. It was treated and she gradually got better. She was laughing and seeing her friends.  Then, in June, her OCD went out of control again. Everything from a frantic need to control her environment and all people in her life, to the ultimate control item-food. She stopped eating. Turned skeletal in a month's time. There was some serious freaking on going on here amongst everyone. (An overwhelming number of people with anorexia also have Aspergers). At the time, she complained constantly of a lower back ache. I didn't put it together until our fabulous Naturopath in Ft Worth reviewed her lab work for us. Kidney infection was back.  I'm not sure how many people have heard of PANDAS. Not the cute, furry kind that hangs out in the bamboo.  The infection that crosses the blood-brain barrier and leads to severe OCD and behavioral changes. Not cute and furry. PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. (http://pandasnetwork.org).  I just kept coming back to this and doing more research. Whenever she has any kind of infection, her OCD increases. But holy cow, mention PANDAS to a traditional Dr and they look at you like you have 2 heads. Then again, when you tell most traditional Drs that you are gluten free and it resolved many health issues, they look at you like you are speaking in tongues.  Every time we treat the infection, the OCD goes down and she is stable. A few days off the antibiotic and it all comes raging back.
In the meantime, I found more and more information on a specific gene mutation called MTHFR.  Some of the problems that come along with this mutation are problems digesting grains and dairy, problems methylating, blood clotting disorders, increased risk of autoimmune thyroid disease and other autoimmune disease, just to name a few. There are 2 mutations for MTHFR.  Yep, Alex has both copies. Bella and Stacy most likely do as well (explains Stacy's rash of near life-ending blood clots lately).  And yep, depression and anxiety go hand in hand with the mutation. <sigh>. My poor girl just can't catch a break.
And yep again, turns out she has hypothyroidism. Rare amongst 15 year old girls, especially those that follow a very healthy lifestyle but common amongst girls on the spectrum. And depression and anxiety are common pieces of that puzzle.
Our Naturopath and our MD here both recommended Neurofeedback. (http://www.isnr.org). It maps the brain and finds the over active and under active centers and through sessions of neurofeedback, a patient can retrain their brain. One of the world's top experts in the field lives here in Colorado Springs and is friends with our Dr so he saw her this week.  The parts of her brain that control behaviors, especially OCD and depression were highly over active. One more piece of the puzzle in place.

But, the bright spot is I now have a great team of doctors and therapists to work with. Ones that "get it". An MD that understands that long term, chronic infections can cross into the brain. And treat with high dose oregano oil and garlic oil because those are antibiotics that she can stay on for months without causing damage.

My point to all this (and congratulations and thanks for your patience if you made it this far) is that not all dramatic behavior changes are "just being a teenager". There can be an underlying illness or genetic reason (or both) behind it.  Anti-depressants are not always the answer. Sometimes they just mask what can be a serious health problem. Don't be afraid to research and ask questions. If your Dr thinks you are crazy, maybe it is time to look for a new doctor.

Now, since I can attribute a lot of new gray hairs and wrinkles to the extreme stress of the last 6 months, maybe I can write off hair color and skin resurfacing as a medical expense for me?? Anyone?? :)

I guess I have to keep doing this??

Wow!  I really wasn't sure that anyone would read this. And I really didn't think it would be shared and shared around the world.  Thank you!
I keep getting messages asking where the next one is.  Well, the last couple of weeks have been a whirlwind.  I had a trip to celebrate an incredible, joy filled event in the lives of some friends.  It was a reminder of the good that happens every day around us. The promise of new beginnings.
Then, after returning I had another reminder.  This was the reminder that everything we do every day is a balancing act.  Every action, everything that we put into our bodies, everything we put on our bodies, every influence seen and unseen. All these keep our lives in balance.  Or knock us out of balance.  I almost lost a child this week.  Worst week of my life.  I wondered if I should even write about it.  But, the most unlikely of sources told me I needed to do so.  I'm not giving specific details but it reminded me that I have to be diligent in every way.  These disorders wait till your defenses are low then, BOOM!  I can't begin to stress how important it is to find what works for your kids and your families.  Then watch for the variances. 
And hey, I learned a new thing about stress this week.  It can cause ringing in your ears.  Really, what did you say?  I can't hear over the ringing in my ears.

World Autism Awareness Day? Or why am I not lighting it up in blue today?

Well, I get asked all the time why I don't have a blog.  The answer, until now, has been "what can I add that isn't already out there?"  I don't really know if I can add anything else to the world but thanks for coming by anyway :)  I'm really not one to do things by half so I might as well start out being controversial.

Yesterday was my youngest daughter's 9th birthday.  Birthdays, by rights, are celebrations.  Even when you start to wish you could back up a few. They are also points of comparison.  Where was I last year at this time?  What will I be doing next year at this time?  I have 3 daughters so I naturally compare them.  I compare what each was doing on their 9th birthdays.  Parties, lots of friends, at the tops of their classes for grades, big readers, and so on... Yesterday was different.  Just a family of dear friends over for cake.  Ones that understand that she will be overstimulated by the activity and probably be more than a little wound up.  Ones that won't judge that at 9, she is really more like a 5 year old.   

Today is World Autism Awareness Day and April is Autism Awareness Month.  Interestingly, since my youngest daughter's birthday is April 1.  She is my child that is smack in the middle of the Autism Spectrum.  You could say that I am fully aware of Autism in all its forms.  I joke, often, that I live in the house that Autism built.  There are 3 in my household that live with the various issues that Autism brings into lives.  If you are not already "aware" here are some issues...speech delays/communication problems, social interaction problems, anxiety disorders, Obsessive Compulsive Disorders,  repetitive speech and behaviors, noise and light sensitivities, tendencies toward over stimulation, ADD, medical issues including but not limited to gut problems, weakened immune systems leading to many infections over the years, food sensitivities/intolerances/allergies... I could go on but I'd depress myself and you so I'll stop there (for now).  2 of the 3 function at a point that makes life manageable as long as diet and supplements are adhered to and other environmental intrusions are kept at bay.  My youngest is not so lucky.

I'm not following the "Light It Up In Blue" campaign because I think the world is plenty aware of Autism at this point although most of us had never heard of it 15 or 20 years ago.  What I'd rather support is a World Autism Eradication Day.  Or World Kick Autism's Butt Day.  Or a What Are We Doing to Our Kids Day.  There are 2 camps in the world of Autism.  The first is the "My child is fine just as they are.  Embrace the Autism".   The 2nd is "Autism SUCKS!!  What can I do to get my child back?".  Guess the one to which I belong?   Embracing is for gathering someone in for a hug.  Accepting is to approve or react affirmatively to something.   I love my child more than life itself but I will never embrace or accept the thing that rode in and forever altered my child's future. Autism is the proverbial "thief in the night".  It sneaks in and steals.  It steals futures.  It steals plans. Both hers and mine.  I never in a million years thought that I would spend my 40's as a grassroots fighter.  An activist? Me? Nah, no way.  "When my kids are all in school, I will go back to my career as an Instructional Designer and Corporate Trainer" said my past self .  (What is that quote about making plans and God says Ha?)  Autism also steals finances and security.  Did you know that as of a few years ago about 85% of Autism families ended up losing their homes and/or filing bankruptcy to pay for schools that cost more than Harvard and therapies that are just now being covered by insurance?  Hopefully, that number is going down. Autism also steals relationships.  About 80-85% of marriages are chewed up and spit out. Families change. Grandparents get to learn about a world that didn't exist when they were growing up.   It also steals the pleasure of a gooey, hot Cinnabon cinnamon roll.  No more gluten allowed in this house.  Yes, I am allowed to dream about gooey, hot cinnamon rolls.  I swear, I can smell one right now :)

I promise, not all entries here will be depressing.  This is just one Awareness Day I can do without.  I will share on here what steps of the fight have helped.  How she went from only speaking in a form called echolalia to being conversational.  Yummy gluten free and Paleo foods.  Where to start if you are looking to alter your health.  Occasionally, how to build a rockin' headboard out of reclaimed fencing lumber. How to fight off the Zombie Invasion (just kidding, I hate zombie stuff). 

Here is a quote from my girl this morning that has made me giggle all day.  "This mirror smells good"  If you can figure out what that means, you must be a more enlightened traveler on this road than I am...