Wednesday, January 24, 2018

Don't Give Up On Your Concerns

I have all of Ethan's doctor reports at the house.  I have had to go thru them several times looking for one thing or another.  Do you know what I see repeated in there over and over again is "Mom has concern about child being constipated.  Mom is concerned with possible food allergies."  Do you know that I found a journal that I had started 6 years ago logging all of his food and his reactions?  Do you want to know what the result was to those concerns?  Nothing.  Oh wait... they suggested MiraLax.  I got so furious when I read these.  I recall these moments.  The moments of knowing something is wrong with my child but that no one would listen to my concerns.  They felt that I was over reacting.  Sure lady you had a baby at 26 weeks but he if fine now.  Just calm down.

Eventually I gave in.  I calmed down for my own sanity sake.  I stopped worrying.  Just going with the flow.  Trying to be like any other mom out there.  I refused to give him MiraLax because I had a gut feeling that would not be good for him.  Which now there are reports out stating just that.  Check it out here.  The thing that kills me tho is that I refused to give him that yet I still fed him gold fish crackers, m&ms,  mac & cheese, captain crunch and fruit snacks to name a few.  I read on the internet that these were horrible things for your child but I got to the point of telling myself "just be like all the other moms." Now there is nothing wrong with any other mom I know.  I am not saying that.  But my gut feeling knew that there was an issue with food with my child but because no one heard me out I finally gave in.  Until now.  6 years later.

I still don't have an answer as to everything that is going on in my baby's belly but I do know that we are finally started down the right road to find our answer AND solution.  I can't say that I have found a perfect doctor yet but I have found some that I won't be going back to.  When I told his pediatrician that the Neurologist recommended no red dye, sugar or processed foods he responded with "Why no red dye?"  Excuse me?  This was almost a year ago at the beginning of me starting my research to find out how I can help my child.  Red dye is listed everywhere online as a concern.  Canada has it banned and the US will be banning it in 2020 (just because we need to give companies time to figure out their products without it *eye roll*.)  If a pediatrician doesn't know this is a concern he is not the right pediatrician for me.  I have kept many doctors on their toes over the last year.  Several of them have told me that I am very well informed and involved in my sons care more than most parents.  Hmmm I will take that as a compliment although I know it probably made their job a little tougher lol.  I will not sit back down and do what I am told.  There is an answer and I will find it.  Don't give up the fight!

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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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