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?? :)