Last Summer we took Sara to a Neurologist (our last hope for being told what was happening to her) and we were told that everything she was reporting was “in her head”. That her self-reported symptoms – in terms of her mobility- were “neurologically impossible” and that we should take her home, put some emotional supports in place, and get back to living life. We knew that he was wrong. We knew that Sara was not having psycho-somatic symptoms. But, we were thrilled that there was nothing degenerative happening to her and buoyed by that revelation we went home and tried to create a new “normal”.
Except there was nothing normal about a 13 year old who no longer understood the days of the week.
There was nothing normal about a child who was too weak to stand and leaned and draped herself over anything she could find to avoid being upright.
There was nothing normal about a child that spent literally HOURS in the bathroom in pain. One time she went into the bathroom at 9am and stayed in there until 10pm at night. We actually brought her meals to her in there. She only got off the toilet once at 7pm for a bath to help ease the pain. Yes – we ended up at the hospital as a result.
There was nothing normal about having a tween who would be bedridden for 3 days if she went to a sleepover. Exhausted from being “on” for so many hours.
There was nothing normal about a child who was absent, late or sent home 150 days from school. Who could not navigate her way around the school on her own, who often struggled to understand simple sentences and at one point literally forgot how to add 2 digit numbers.
Over time, we virtually became a family of three with a girl in the basement, who sat like a zombie in a therapy swing too tired to interact with the family – but then unable to fall asleep each night.
When she did have energy, she was eager to get out into the world and see her friends and socialize. Inevitably those outings would also wipe her out to the point that when she came back home – she was lost to us again. A day of school would mean she was too tired to spend time with us in the evening. A big event like a party or a Holiday could send her body into chaos. The world got the best of Sara and we were always left to pick up the pieces.
I remember bringing her to a VERY small New Year’s Eve gathering. Literally 3 families getting together to ring in the new year. I only planned on staying until 10pm so that Sara could function the next day. But then we got there and everyone was having fun (including Sara) and 10pm came upon us quickly. Sara persuaded us to stay another hour and I begrudgingly agreed already sensing I was making a big mistake. Soon it was 11pm and that rolled into 11:30 and before you know it the group cajoled us into to just staying for the big countdown.
We got home soon after and I could see that Sara was already fading and struggling with her sensory system. Her pyjamas were “itchy”. Her bed was “weird”. Then she started in with complaints of dry eyes and burning hot feet. I knew her body was turning against her and there was nothing I could do to stop it. She eventually spiraled into chaos and I was up with her for 2-3 hours trying to help her dial down. She was overtired and sobbing. And it was hours before I could soothe her into sleep.
And apparently it was all in her head.
But now… now we know that in fact, it was all in her GUT. I am still amazed that this child has come so far, so quickly, JUST by restoring her digestive health. I cannot believe that her stomach was the key to healing her brain. Over the past 3 months she has resolved so many issues. She is sleeping normally. She has ZERO chronic fatigue. Her sensory processing disorder is non- existent. She can hear normally, she can move her legs, she can coordinate her body. She is doing mental math, having sleepovers and running through the neighborhood until dark and when she comes in the door she has energy to spare and is up with us watching movies and playing cards.
I am thrilled that I didn’t give up on Sara. I always knew she was truly struggling, that she wasn’t faking it or pulling my leg. I never doubted that she was losing control of her body. Thanks to the Nemechek Protocol we are getting our daughter back and so are countless others. There are so many success stories being reported daily over on the Facebook group and it is amazing to watch this protocol help parents all around the world get their kids back. Come join us and be part of the conversation!