Monday, February 3, 2014

Love and Autism

Posting some candylicious  photos tonight.

I finally got my butt in gear and put a fun valentine's day centerpiece up on the table.

Full of candy, hearts and love.  Love is the title of this post because of what we have fought hard for the past 2 years.

Tomorrow is a big day for us that I am kind of holding my breath in worry and in hopes of relief.
We have been through so much with our boy and his label of Autism.
Me as a mom, wouldn't give up the fight for finding what is going on for my boy.  He didn't fit the label he was put under and once we changed his diet, it was like he awoke from a bad dream.  This led me to dig deeper into his issues.  From his bowel movements and digestion issues with rashes and skin problems I knew there was more to uncover.
With each little food we would remove from his diet things would change, rashes would disappear, speaking would be more coherent, tantrums would cease and life would be good.  Then a little slip of bringing say, milk back in or something that contained gluten and all hell would break loose.

The more research I did the more and more I became in tune with food allergies and the misdiagnosis of autism. 
Food allergies affect the brain and cause toxins to build up in our systems.
His little body is not getting the vitamins needed to have proper brain function and for years we had no idea.  We just took all these "PROFESSIONALS" for their wise words.  I could just kick myself for not following my mom instincts.
So tomorrow we get closer to answering our questions of severe food allergies and not autism.
So far we have found he has gluten intolerance, sensitivity to dyes in food, allergic to cows milk and severely allergic to walnuts.  Tomorrow will be a full panel of foods to test for.

We have found 2 amazing doctors that actually communicate and realize his issues all started when we introduced solid foods to him from as young as 3 months of age.
They are willing to fight with us to find the answers.  No quick labels or diagnosis and writing him off as a lost cause.  But real answers and help.

He has officially been off milk for 3 weeks and even the guy from our local video store commented on how he has never heard him talk or be so full of questions and life before.  That really shows me others are noticing and it is not just a mom wishing it true.
He is holding full conversations, with questions and it all makes sense.
Truth be told, his brain function decreases as night gets close and he grows tired.  He starts with getting words mixed up and some things make no sense at all.    I have a friend whose daughter had a stroke in her 20's and does the same thing when she gets tired.  It really makes me want to look at his brain in an MRI  once the allergies are figured out.

I am holding strong that we will beat this and I just thank our lucky stars that the "DR" we gave so much money to up and left town without giving him a professional diagnosis of autism.  I think my heart would have sank if he is just allergic to foods and had to live with that as part of his name the rest of his life.

Moms and Dads out there, please let my story help you to ask as many questions as possible and never take the first diagnosis as "thats all she wrote" kinda thing.  Dig deeper for your child, ask questions, and question everything.  So many of our children are being labeled and misdiagnosed.
Stand up for them when they don't have a voice.

My son was put in a classroom of non-verbal, severely autistic children at the age of 3 because he was hyper and one thought to do blood work or test for allergies.  It was a horrible year of him being abused in care that was meant to help him.  Within 6 months of us removing certain foods and gluten and dyes from his diet he began to speak.  Removing him from that autism class and placing him in a typical school, he reads, writes, memorizes, and functions in a fully typical classroom with all typical children, there is no way to pick him out as the non typical as the public schools iep stated.  I shudder to think if I would have kept him in that low functioning autism class for 2 years.  What damage would it have done, what if I didn't try to change his diet, he would still be non-verbal??  Would the horrible skin and terrifying allergic reactions that sent him the ER still be a fear of mine everyday?? 

I am not a dr, and what I did changed our sons, and our lives for the better.  I can't say it will happen to you, but why wouldn't you try?
I hope this reaches some parents out there struggling.  I have written my story here and how it all began, in past posts.  Once this is all figured out I will write a full post on everything we have battled for the past 5 years. 
Wish him luck tomorrow!


Rhonda said...

Good luck to all of you tomorrow. I will be thinking of you. Let's pray it answers your questions. You have come a long way, I hope this mystery is solved. Xoxo

Julie said...

Big lump in my throat reading your post Amy. ALL the luck in the world for tomorrow .... you are such a great Mum x0x0x0x0x0x0

Diana Mieczan said...

(I am in tears)...Good luck for today!!! I am so inspired by you, sweetie and I can't wait to hear updates. Thinking of you guys. xoxo

Gail Thayer said...

I've always advocated to any parent to take certain diagnoses with a grain of salt and to make sure you do your own homework. Which it sounds like you are doing.
There are so many allergies out there, I do hope that you are able to find exactly what makes B tick!

Lynn Richards said...

So. Freaking proud. Of. You.

Susan EvelynAndRose said...

Wow, Amy, this is truly shaking things up for you. I can't get over that it may just be a mis-diagnosis. I hope and pray you get all the answers you need today. You have the right plan - just keep digging deeper and questioning anything & everything. Your gut leads you and you can rely on it.
We just had our boy go thru a colonoscopy due to his extremely underweight body. He's 8 and weighs as much as 6-yr old sister. His colon looks perfect, as does his stomach in previous tests. Now we want to pursue visiting an endocrinologist for growth hormonal tests, rather than the Gastrointestinal specialist we've been seeing for years. We need answers! You inspire me with your strength, Amy!

Art @ Home said...

Tears are streaming down my face reading this. I swear that gluten is from Satan….

I hope you can get the answers you need to help Prince B….he is such a cutie! He is so BLESSED to have a mom like you, Amy. I'm so proud of you, for all you're doing for him. You inspire me so much. You are inspiring many moms out there, and not just me.

Please keep me posted. I've been a terrible blogger lately because I just want to stay away from the house as often as possible because I'm grieving so over Bonnie Blue.

Update us soon!