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4.17.2013

CLIMBING OUT OF THE CRIB.

Well you've noticed I haven't posted anything in a while...if you are wondering why...let me just "paint" you a mental picture...

Cole's crib has ALWAYS been his place of "comfort".  He LOVES his crib and is the ONLY place where he calms down...otherwise he is a MANIAC.  That's putting "nicely".  Well, last week he climbed out of his crib for the *FIRST TIME EVER*.  We thought it was so funny & so cute!  Fast forward the next day...he is having one of his RAGE attacks...POUNDING his head on EVERYTHING, the floor, furniture, walls etc...so I picked him up & took him to his room as he throws his body, head butts my face & rips my hair out (like he normally does).  I put him in his crib, close the door & hear him pounding his head AS HARD AS HE CAN on the wall!!!  There was nothing I could do.  I can only hold him down for so long because he is SO STRONG.  Anyways, fast forward again to today...and he's been a "crazy person" for the last week...ALL DAY EVERY DAY.
 The only thing that calms him down is a bath.  He's been taking LOTS of them.  I'm sure our water/gas bill is through the roof...but we are hanging on by a thread & I just cry.  (partly because of prego hormones...and partly because I just don't know what to do).

I tell ya what....this journey went from Epilepsy, Infantile Spasms to learning disabilities, to Autism, Persuasive Developmental Disorder, Behavioral & Anxiety Disorders & Mental Health Issues.  Most of these are because of the Infantile Spasms....and Cole seems to have gotten the worst of everything :(  I feel inadequate as his mom...I should say parents because I know my husband feels the same way.  I go through these emotions of anger, frustration & sadness all at once because I JUST DON'T know what to do for him...I don't know how to keep my own child happy or how to help him.  The "local neuro" suggested 6 months ago that we put him on medication for schizophrenia.  I researched it, and found that this drug is infamous  for causing a Movement Disorder...which means that his brain and his body would stop making the "connection" to move his limbs etc.  AND a lot of the time...it's PERMANENT...meaning if he STOPS the drug...it will still be there.  So we are looking into other avenues like the GAPS diet. 

 On a good note...he was relatively good today, mostly because I let him play in the car for 3 hours...yes, I am responsible mom & I'm watching him...but for some reason he didn't want to get out so I let him hang out in there and it's been 3 hours of HAPPY BLISS!!!  It's become apparent that we are loosing our minds & have been PUSHED to the MAX...so I'm sure because of the prayers of those around us...the Lord gave us a good day today. 

2 comments:

  1. I'm so sorry! GAPS diet is great. We did a trial on it...we stopped because one of the twins wouldn't eat enough on the diet...but me and my daughter loved it. We loved the food...it just takes a lot of prep time in the beginning...once you are used to it...it is less. One thing we found was for Levi...even the smallest bit of dairy or soy would send him into fits where he was pounding his head on the wall. Maybe the GAPS diet will help eliminate something that his body is reacting too. Prayers to get this figured out and have a happy boy and parents.

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  2. Hello, my name is Monica. I'm 25 and have epilepsy. I've been researching to see what I can talk about because I feel like I've ran out of ideas and I just clicked on your blog and wanted to say that your blog brought tears to my eyes. What you've had to go through with a child having epilepsy and all of those doctors visits/hospital visits and EEG's. I always say that I was only diagnosed at 17 so I was able to live most of my life epilepsy free. Your blog is very inspiring, congrats on the new baby on the way! I can't wait to read some more about your beatiful family!

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