Wednesday, March 20, 2013

CoQ10, Irritability and Vitamin B2

These past few weeks have been awful with Marley.  Her third grade teacher had about exhausted every trick in her book.  The resource room teacher was afraid of Marley just coming into her room to get out of her daily activities.  She expressed concern to me when Marley confided in her she “hated school.” 

Marley has been irritable, miserable, anxious and sometimes downright defiant.  Like when she got up from her desk at school and turned to face the class and said, “I’m outta here!” and left.  Who knows where she was going…she just didn’t want to be there anymore.  She screamed and cried about everything.  Every single day I was getting a call from the school.  Their absolute last ditch effort to get her to comply…’s threats of taking something cherished away. 

I knew her anxiety was through the roof when she started chewing on her fingernails again and simply tearing off the skin around her fingers.  We had worked so hard to get that in check earlier this year….to see it back again was heart-breaking.  Things were simply getting worse despite my best efforts to reward, bribe, and even threaten her with removal of cherished items.   

When things like this happen, I always look to what has changed.  An environmental factor?  A new supplement?  More expectations placed on her?   Maybe.

Could it be yeast?  No…we’ve had that in check for a while and she has been on Syntol with good results before this started.  And no recent antibiotics to speak of.

Could it be PANDAS?  No, she hadn’t been sick and there wasn’t any OCD about it.

Then I thought back to when I started her on CoQ10.  It was about a week before all this started to happen.  Since Marley has low energy and CoQ10 is excellent for mitochondrial issues, I thought this would be a slam dunk….but I was beginning to think again. 

So, I took her off the CoQ10 for about 3 days.  She was a bit less irritable but still cranky.  So back on it she went.  Then…the shit hit the fan.  She had a meltdown at school when another student got to publish his story on the iPad.  She walked out of the classroom again. I was called and went over to the school (with my 2 year old in tow) to talk her down.  After I left, she escalated again and had to eat lunch in the principal’s office and spent the afternoon in the resource room.  She was a mess.  It was a Friday.  There was an emergency team meeting called for the next week.  What were we going to do?

But…by that point, I was pretty sure I had it figured out.  It was the damn CoQ10.  But why?  All my research said that a rare side effect of CoQ10 was irritability, but no reasons why.  My husband said – “Pull it!  Don’t give her any more” and of course I didn’t give her anymore, but I needed to know why this was happening.  If only I knew why, I could fix it.

I started to dig.  Thank God for my network of biomed moms.  One told me to go directly to the electron transport chain and look there.

Turns out that CoQ10 works to metabolize succinic acid, which requires B2 and CoQ10 to be metabolized in the electron transport chain. Once it uses more B2, then it decreases the supply of B2 available for the metabolism of other amino acids to make neurotransmitters, especially, serotonin.  And we know serotonin is the "feel good" neurotransmitter.  Serotonin plays an important part in the regulation of learning, mood, sleep, etc.   And experts say serotonin may have a role in anxiety, migraines and appetite.

So I pulled out her last Organic Acids profile from last year.  Sure enough….there it was.  Her suberate was high meaning that she needs more B2.  Riboflavin or B2 also helps to metabolize fatty acids.  Out of curiosity, I looked back at her labs over the years at her suberate levels.  It was high dating back 7 years! 

I took a week doing this research and meeting with her team at school…but I was pretty sure I had it under control.  She was off the CoQ10 and not so irritable but still not very happy.

And so, starting on Saturday morning, I started her on a broken down form of Vitamin B2 called Riboflavin 5’-Phosphate Sodium.  She was a bit better on Saturday.  Sunday, she was happier.  By Monday, she was excited to go to school and read her non-fiction book she wrote on Chipmunks to an audience of parents at her author appreciation day.  (She is NEVER excited to go to school on Mondays.)  By Tuesday afternoon, I got an e-mail from her teacher saying…”whatever you are doing at home--- keep doing it!  Another awesome day at school today!”  No more nail biting…no more anxiety…no more crankiness. 

Once her B2 levels are up to sufficient levels, I should be able to reintroduce the CoQ10 without problems.  I’ll give her body time to get adjusted before I go there again. 

And there you have it.  When I say that I treat my daughter’s autism using biomedical interventions…this is what I mean.  We need to understand what is going on in the body in order to treat it.  Simply throwing an antidepressant at the problem does not allow the body to heal on it’s own.  And if I would have taken her to a psychologist or neurologist that’s what I would have gotten.  Her neurologist flat-out told me he doesn’t know how to read the amino acid tests and that is the lab tech’s job.  (Needless to say, he is no longer her neurologist.)

Well, in our house, it’s MY job to read the amino acids tests and do the research because unfortunately, no one else is going to do it. 

Here’s my girl reading her non-fiction book on Chipmunks!

Friday, March 1, 2013

Turning Forty

Today, I am forty.  

As we grow, we tend to lump our life into decades.  The childhood years, the teenage years, the twenties when you are finding yourself, then the thirties….the childbearing years.  I had my kids in my thirties, but they were not the happy, go lucky, raise your normal kids type of years.  No…. my thirties were more about dealing with medical diagnoses of my children. 

My thirties started with the birth of my oldest child, now 10, and her diagnosis of Cerebral Palsy and later Autism.  It was the Autism that truly rocked our world.  

Growing up in a family of five myself, I was taught to do what was right. (Not that I always did.)  I was taught to use my manners, be kind and work hard because that is how you get ahead in this world.  My mom taught me to stand up for what I believe in.  My dad taught me to love fiercely.   And my parent’s relationship taught me to stick with my husband…even when things get hard.

But then, life got ugly.  In my thirties, I started to see things for what they really were.  I watched my beautiful, engaged, babbling 12-month-old daughter spiral backward in her development.  By 18 months old, we had lost her to autism.  There is not much that can break your heart like that.  Having your child there…but not there.  Watching other kids develop so quickly and leave her behind while she was lost in her own world. 

But in reality, I’m sure all this happened, in part so my soul could grow.  I needed to learn to lean on my husband for strength when I had no more.  I needed to learn to trust him because he loves her too.  I needed to love fiercely, like my dad, so I could see the truth.  The truth in what really happened.  I needed to work hard to get my daughter back.  I needed to develop the strength to stand up to doctors who simply wanted to medicate my two year old.  I needed to teach myself everything, just as my mom has in her life, so that I could learn HOW to bring her back to me.  

Little did I know that I would spend the bulk of my thirties learning about gut flora, methylation, candida overgrowth, nutrition, adrenals and mitochondrial dysfunction. If I had known in advance, I certainly would not have majored in business and marketing in college. I have spent the last ten years changing the way my family eats and lives life.  

There have been many tears and long nights in the past ten years….but I have also felt intense gratitude and incredible highs when she started to come back to us.  I now know my daughter…. something I feared would never happen.  I can hear her voice.  She tells me when she is nervous, angry or happy.  She tells me that she loves me.  She gives me unprompted hugs and tells me she is sorry if she has made a day particularly hard for me. 

During all this, I have had the honor of getting to know an amazing group of mothers.  They are autism moms.  And they have shown me the way.  They have taught me to read medical studies on my own.  They have held my hand when times got tough and helped me find answers to my daughter’s problems.  And these answers, incidentally, also helped my second child with sensory processing disorder and my son with severe food allergies.  And now that my daughter is recovering, I have the honor of holding the hands of newly diagnosed parents when they need me.

Needless to say, I learned more lessons in my thirties than I have my entire life.  And I feel stronger for it.  My gray hairs and crows feet are earned.  I guess my parents knew what they were doing when they named me Kelly.  In Irish the meaning of the name Kelly is: warrior.

And now that I have looked back, it is important to look forward.  I try to take one day at a time because when you live with autism, you never know what tomorrow will bring.  But I am optimistic.  I am living in a time when parents are demanding answers.  When passionate parents are healing their own children despite the odds.  And hopefully, we will see a cure in my lifetime.  There are already promising recovery treatments, although the results vary from child to child.  Despite my wariness of the medical community because of their denial of vaccine involvement and their insistence of the use of anti-psychotic drugs, I am excited to see what the next ten years will bring.  Functional medicine and Epigenetics are on the rise which is very promising.

As my husband always says…it is not what happens to you…it is how you react to it.  It is all about attitude.  And I love my children fiercely and that will never stop.  I will continue to fight for them, enjoy them, learn from them and hopefully continue to heal them.  God willing.  Here’s to the next decade of healing.