Wednesday, January 17, 2018

The Diagnosis

In November 2016 the school told us they thought that Ethan has cerebral palsy, dyslexia and a blind spot.  I was overwhelmed to say the least.  The school said they were going to do some tests and let us know.  By Christmas break they had not done anything so we decided to take him to his doctors to find out more.  His eye doctor said he didn't think that he had a blind spot but gave him glasses to keep the school happy (um thank you for that $400 total cost just to keep the school happy!)  We then took him to his pediatrician and he suggested we see a neurologist.  In the meantime we were researching online.  What does this mean for him and his future?  Well researching anything online can make you go crazy!  We found things like he could get worse.  He might lose muscle tone (he barely had any!)  He might not be functional on his own.  It was crazy just waiting to get answers and get into the appointments at all!  At this point I decided I needed to be a stronger mom.  Physically.  What would happen if it was just me and the kids and something happened to him?  It's up to me.  So I decided to add weights to my workouts.

While waiting for 2 months to get into the neurologist I got his medical history from his original pediatrician.  We had done an MRI when he was almost 2.  They didn't find anything concerning.  So when we finally got into the neurologist he basically said the same thing.  Nothing concerning here but then recommended we see a neuropsychologist in Missoula.  Another 2 month wait.  This was killing me.  So CP didn't seem like it was going to be a part of our life but what was going to be?!?  It was getting bad.  He had broken his arm twice in 6 months both times were gentle falls that you wouldn't think would cause a break.  He was constantly tripping and falling.  He had to be reminded 20 times that he needed to get dressed for school in the morning.  His conversations were not engaging.  He was obsessing over things such as pokemon and would only talk about that for weeks.  He would talk about his birthday party plans which were 11 months away.  There was something going on but what?  We have asked the doctors since he was born if there was anything for concern but nothing came up other than "well he was a preemie this is normal."

Finally in April 2017 we got a diagnosis.  What he had was Executive Functioning Disorder (EFD).  It was explained to us that autism, ADHD and EFD had many similarities.  EFD is all about the frontal lobe of the brain.  It is where we organize thoughts and process information.  He then told us that if we didn't start to make changes now he may fall into the ADHD or autism category.  OK... so now what?!  He told us to start on an athletes diet basically.  High protein, high complex carbs, low simple carbs, no red dye, and no processed foods.  He also stated that we should start giving him Barleans Omegas.  This is the one Ethan liked and this is the one Morgan liked.  He did not recommend doing gluten or dairy free but that we could if we really wanted to.

After 2 weeks of this diet change we saw a huge difference!  He was not falling anymore!  This got me thinking about how he must have felt.  He was able to walk but his body was not allowing him to because of the foods that were in his body!  That had to be so frustrating!  He was also able to focus more.  This was noticed in school but also in the mornings getting ready for school.  I didn't have to remind him to get dressed.  He got up, got dressed, and came out for breakfast.  Simple things that I take for granted with my daughter.  He also stopped having tantrums!  I don't know when it started but when he would get upset it was hard to calm him down.  I found myself at a loss for words and just prayed that my husband would be home soon to help me.  The other thing I noticed from this change was I had less messes to clean up around the toilet.  I don't know what was going on when he was using the bathroom but I am pretty sure he would lose focus of what he was doing and end up missing the toilet... a lot!  Speaking of toilet.... we had another good thing happen in that department.  Ever since Ethan was eating solid foods he was constipated.  Bad.  The doctors suggested giving him Myralax.  I refused.  Looking back I think geez I refused to give him Myralax because it is so bad for him yet I would make him sit at the table util he ate all of his macaroni and cheese (which was not making him feel good or nourish his little body in the least bit.)  We did have success with wild orange and ginger oils diluted with coconut oil in a roller bottle on his belly but what I really wanted was for him to have soft stools and have a routine visit to the bathroom!  Well that happened!  All of this from a small change in the diet.

Our big things to eat at this time of our lives was natural PB and organic jelly sandwiches on a whole wheat bread with lots of seeds (including flax), whole wheat tortilla shells with organic lunch meat and cheese, the whole wheat shells with taco meat and the shells with tomato sauce and cheese (for pizza).  Those were our "go to's."  We also found Lara bars to be a good on the go snack.  Those were our "go to's."

I would love to hear anyones stories about making changes to their families diets lifestyles.  This stuff interests me more than you know!  Sharing stories is the best way to get more information regarding the health of our loved ones!



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About Me

This blog started as a hobby for many reasons. It later became a way to keep the family up to date on our micro preemie baby, Ethan. Now as Ethan is nearing the 8 year mark with a little sister of 5 years I am finding a new reason to document on this blog.

Last year we were told by the school that Ethan had cerebral palsy, a blindspot and dyslexia. That is what started it all. I started taking him to doctors to find out what was going on and why this hasn't been discovered before now. In April 2017 we were told that he has executive functioning disorder. What the heck is EFD I thought?!?! After the doctor explaining it to us he basically said that if we don't start making changes now he could fall into the ADHD or possibly the autism category. Ok... so now what? What can we do?!? Well this blog is my way of documenting it all not only for me but also to help others find their way thru similar situations.

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