My friend posted an MSN article a few days ago about some new statistics regarding ADHD.  And they’re not that surprising.  The title is Pesticides in Kids Linked to ADHD.  The title says it all.  But is it that surprising?  Maybe some of the numbers will surprise you.

“Kids with higher-than-average levels of one pesticide marker were nearly twice as likely to be diagnosed with ADHD as children who showed no traces of the poison…. The most alarming finding was a near-doubling in odds of ADHD diagnoses among kids with higher-than-average levels of the most common of the six metabolites detected. Kids with high levels of dimethyl thiophosphate were 93 percent more likely to have the disorder than children with with undetectable levels of the marker.”

Yeah, those are some big numbers.  But there are SO many other factors that go into ADHD.  Take Emma, for example.  She has at least 2 other factors that contributed to her diagnosis.  First, kids with SOD have a tendency toward an ADHD diagnosis.  Secondly, it can be hereditary and her Dad had/has ADHD (truth is, he is able to control the tendencies).  So it was almost a given Emma might have it.  Hence my persistence in getting the right evaluations.

Which leads me to my next question.  I wonder how the diagnosed kids in the article got diagnosed.  It’s no secret that ADHD is widely over-diagnosed.  I have had people tell me, “well every kid these days has ADHD.”  Which is precisely why I went through the measures I did to get her diagnosed correctly with a trusted pediatric neuro-psychologist (who is wonderful, if you need someone from PCH).  But practically any doctor can diagnose ADHD these days.  And they can all write out that prescription for Ritalin, too.

So what do we do about this?  Well, the article suggests buying organic as much as possible and washing all produce.  I think the last one is a no-brainer.  I do try to buy organic when it’s cost-effective.  That stuff can be expensive!  I DO wash my produce every time with Fit Spray.  I find mine at Fry’s.  Whole Foods also has a spray…actually a few to choose from.  I believe Fit is made from citrus.  So is the Whole Foods spray, and their’s is organic, too.  Oh, and I will try to stay away from frozen produce.  Which actually will be easier said than done.  Eek!  At this point, what more can you do when it comes to produce?

I realize this is quite a hot topic and I am not trying to step on toes.  But I would love to start a dialog about this and see what you all think of the ADHD topic and this article in particular.

I started a discussion in my Blog Frog community over here…come on over and join in, won’t you?

Sorry for the delay in this…it wasn’t my intention!  However, I do have to share with you that we had a wonderful trip up north this weekend to visit the Polar Express!  This was our 4th year doing it and we had a wonderful time!  The kids got to play in the snow, they saw Santa, played with their friends, and overall, a fun time was had by all!!  And you know how it is, after a trip comes all the fun that unpacking can bring…laundry, groceries, tidying up again,  and a wishful early bedtime for me!

In my last post, I described to you what the meaning of ONH meant.  It’s more than Emma not being able to see well.  Of course we didn’t know that during her diagnosis at 4 months old!  But boy did we learn!  If you need a refresher about how Emma got diagnosed with SOD, read this.  Oh, and just a refresher, SOD is the acronym for Septo Optic Dysplasia.  In this post, I’ll tell you what exactly SOD means for Emma.  The interesting this about SOD, is that there’s no such thing as a textbook case.  I haven’t found two children that present the exact same symptoms that SOD can bring.  It’s a HUGE spectrum disorder, just like autism.

In my opinion, Emma’s case of SOD is pretty mild.  I had a medical professional disagree with me on that, once.  She said that there are no varying degrees of SOD.  I beg to differ, and I’ll tell you why.  First of all, there are 3 components of SOD, and you need to have 2 of them to be diagnosed with it.  The three components are hormone deficiency, Optic Nerve Hypoplasia, absence or malformation of the septum pellucidum and/or corpus callosum.  What?  Foreign language?  Click on the terms to get the wikipedia definition.  Or I’ll give you my very short answer.  Both of those (SP and CC) divide the brain into their hemispheres.  If I’m correct, there’s a bit of a debate as to how much they really contribute to a person.  One helps with communication between hemispheres (SP, I believe).  The other one helps with emotions.  I don’t know much about the corpus callosum or the septum pellucidum because Emma’s are both in tact.  However, she obviously has the ONH and she also has  hormone deficiency.

The hormone deficiency is a big deal.  She doesn’t produce hormones!  Now, it’s a little embarrassing to admit to this, but I don’t know exactly how many hormones a child her age produces.  I just know the ones she doesn’t produce.  Shouldn’t I find out the answer to that?!?  Anyway, she doesn’t produce thyroid, growth hormone, and cortisol.  Of those 2, the growth hormone and cortisol are the most important.  The growth hormone is a shot that we give her every night.  Our body naturally produces GH and releases it at night time.  The interesting thing is, GH doesn’t just help with lateral growth.  It helps all of our organs function!  So when people ask if she’ll stop taking it as an adult, the answer is NO.  She’ll need it for life (or, like Brett says, “until medical science catches up”).  Does she mind the shot?  Not now.  In fact when we tell her we’re getting it ready, she’ll pull her sleeve up and have her twiggy little arm waiting for us! Of course it wasn’t always like this.  It took quite a few months for her to not scream every time we came near her with it.  I can’t say I blame her!  Personally, I couldn’t get myself to give it to her for about 2 months after her diagnosis.  Just couldn’t do it.  But now that she’s on it, she’s about 50th percentile for height and about 35th for weight.  Perfect.  (It should be mentioned that before her diagnosis, she was falling off the growth charts)  Now for the cortisol.  For anyone who doesn’t know, cortisol is a hormone that our body automatically produces more of when we’re stressed, injured, or sick.  It’s our “stress hormone”.  Our body is always producing it, which is why she gets it 3 times a day…breakfast, lunch, and dinner.  The critical part of her not producing it is when she gets stressed, injured, or sick.  Our bodies produce more of it naturally…hers does not.  So, if she’s sick with a stomach bug, and can’t keep anything down, it isn’t possible for us to give her a “stress dose” (which is 3X her normal amount of medicine).  It’s imperative that we make the right decision: do we give her solu-cortef (which is her emergency cortisol that is injected into the muscle with this HUGE needle) or do we take her to the ER.  Fortunately for us, we’ve never had to give her the solu-cortef shot.  We’ve always gone to the ER where they pump her full of fluids and extra cortef (the brand name) if need be.  We are supposed to give her the solu-cortef when she goes into adrenal crisis, basically when her organs start shutting down.  There are signs to look for…fortunately we have never gotten to that point.  That’s the scariest part: the fear of adrenal crisis.  It can happen quickly and without warning.  We carry around the solu-cortef everywhere we go.  We also carry a blood sugar monitor to test her blood sugar, as low blood sugar can be a sign of adrenal crisis.  Remember when I took her to the ER that first time?  Her blood sugar was 11.  It’s supposed to be anywhere from 80′s-110′s.  You could say she was in adrenal crisis then.  We just didn’t know it.

Did I mention that 80% of kids with ONH also have hormone deficiency?  80%. Are you wondering why Emma’s opthalmologists didn’t share that with us when she got diagnosed?  Us too.  That would’ve saved us a lot of stress, heartache, and turmoil, and all that for Emma as well.  That is why I feel it is so important to get the word out about ONH and SOD.  Here’s another little tidbit of information.  ONH is the leading cause of blindness in children.  Ponder that for a bit!

Finding out your child has special needs is not an easy pill to swallow.  For me, finding out Emma had developmental delays was an even harder pill to swallow.  When we were in the hospital was when we got her medical diagnosis: Septo Optic Dysplasia (from now on I’ll use the acronym SOD).  To us, that was all medical.  Those “special needs” were going to take getting used to, but we’d get there.  Like I said, it was a life sentence, not a death sentence.  However, it was when we had her tested in the public school system that we learned she had developmental delays.  What does that mean?  Well, with Emma, it included cognitive, emotional, social, physical (gross and especially fine motor skills).  She had delays pretty much across the board.  As a parent, that brings up a whole new set of concerns.  We already had concerns for her medical well-being, and now we were facing so many questions regarding her mental well-being.  It was like a dark cloud hanging over us.

When things like this have happened, and they’ve happened quite a few times for us, I’ve learned that it’s best to figure out how to deal with it.  Nothing can be accomplished by wondering “why me?” “why her” “why did this happen?”  It happened…let’s find a way to work with it.

The first thing I typically do is research.  I look up information online, and I look for support.  With Emma’s new diagnosis of SOD, I came across 2 groups.  The first was FOCUS Families.  One of the founders lives right here in Arizona and she’s a great lady!  Her adopted daughter has SOD.  I immediately connected with their online email group and I shared Emma’s story.  I received so many emails of support and encouragement.  To find a “family” out there that can understand what we were going through meant the world to me, especially since SOD is not all that common (estimated 1 in 300,000 kids).   The next group I found was the MAGIC Foundation.  They are based out of Chicago and MAGIC stands for Major Aspects of Growth In Children.  Their foundation deals with any condition related to growth.  Again, just another support system that helped me keep my chin up when it wasn’t easy to do.

My recommendation, when someone is dealt a blow, is to find support.  It’s good to research and find more about the condition, but hearing stories from people who “have been there” is invaluable.  If anyone needs help with finding support for a new diagnosis, or for anything, please leave me a comment and I will do my best!

When you’ve got a Dark Cloud Above, what do you do?