When our son was born we had no idea the fight he had ahead of him; his complicated journey nor the determination that this little person possessed to fight and beat the odds each and every time.
Fighter at the Start
He was born at 38weeks in what I call a Grey’s Anatomy scene. He was born with a mass larger than his head growing from his neck weighing 1pound, 8 ounces. It was a Cervical Teratoma. Within days of life, our little boy was whisked away into a 7 hour surgery in hopes of removing this mass impeding on his airways and esophagus. We were told to expect the worst; that he would never eat on his own, requiring a g-tube to feed nor would he breath on his own, thus requiring a respirator. That was IF he were to survive the surgery at all. At 1 year of age he was given a clean bill of health; he was developing and reaching all his milestones. He did it, he beat the odds, and he was our miracle boy!!
Gregory continued to thrive as the years passed. Life was wonderful and Greg continued to prove that his almost near death experience was behind us: straight A student, competitive athlete, great social life, helpful, kind, compassionate and loving with his baby sister. We have always been very careful in terms of health, giving proper nutrients, probiotics, and good multivitamins. We thought this kid was untouchable.
Until, Gregory’s world was yet again turned upside down. I picked him up from school one day last year and noticed he was repeatedly turning his head, “Greg, what are you looking at”, “nothing mom, why?” He had no idea what he was doing. When we arrived home I continued to monitor his motor movements, it continued and as the minutes passed, they continued to increase in severity. My heart was sinking, what was happening? All of a sudden, his eyes were rolling continuously and his whole body began to flinch. I rushed him to the hospital, they ran an MRI, blood work, everything was checking out fine. “So, what was happening to my child?” Numerous appointments, tests, etc. Still, no answers. I began my research, while still racing to any specialist who would see us. Finally, after 6 weeks a pediatrician gave him a diagnosis of Tourette’s, OCD and ADD.
For those who know Gregory know that he is a pretty quiet soul. Respectful, hardworking, athletic and very focused in every task he chose to take on. This made no sense. How does one change so drastically in just a few months? He kept spiralling more and more out of control. The tics increased, he would throw his head back, his entire body would go crazy at times, and it looked as though he was getting struck by lightning. I refused to accept this was happening and he would live his life like this. Something was going on inside of his body. I was convinced now more than ever.
When our oldest son was born, we had high hopes of having a beautiful healthy baby boy. Max was definitely a stunningly handsome fellow. Looking back, he was already immune compromised at birth. He had thrush at 6 weeks old that would not clear up even with the strongest anti-fungal medication. This was our first sign of immune dysregulation. From six weeks of age until age six our son was on some type of antibiotic almost every month of his life. As a nurse, I kept questioning why this was happening and neither of the 2 pediatricians we saw in that 6-year span of his life could give me a reason. We were very frustrated and upset about his constant battle with sinus, ear and throat infections.
Having a new baby in 2007, seemed to tip off some extreme jealousy, rage and OCD in Max. He was suddenly a different child. Max went from sweet and loving, to this child that was distant, angry, controlling, and worst of all, violent. He could rage for up to 2-3 hours. He would self-injure by scratching his face or hitting himself in the head. He would growl and make these animalistic sounds that I had never heard him make. He would lash out at us and scratch and hit his brother and us. It really seemed like he hated him and not the usual sibling jealousy. A year later, Max was diagnosed with autism spectrum disorder. I didn't believe that this was "just autism". We started him on basic biomedical protocol with a DAN doctor that was located in our state. He was allergic to several foods and once we removed those foods, he became less locked in his own world. He also was prescribed B12, cod liver oil, probiotics and special high dose multi-vitamins. He started developmental pre-K and started to talk more and interact some with his peers.
Our younger son, Parker hated people. He would throw himself down and hurt himself if he didn't want to do something. He head banged and screamed throughout the day. His OCD was so severe that if we went the “wrong way” to the store he would try to kick the windows out. Life was a battlefield. He never slept. In October of 2010, he was also diagnosed with autism. We were devastated. How could we raise two kids with autism? Parker joined his brother in the biomedical treatment of autism. When we removed the foods Parker was allergic to and started developmental pre-k, he started talking and interacting with us more. We were hopeful that things were going to get better.
In 2010, the boys had so much rage, aggression and extreme OCD. We hardly ever left the house because Parker hated to go anywhere. He was a flight risk. Every time we left he would elope. We were constantly on alert. We had to install special locks high in the doorframes to keep him from running away. When we took him in the car, he would rage so bad that he almost kicked out the windows on several occasions. Max would get so mad on the car rides they would attack each other and punch each other on the car rides. We were basically shut-ins for months.
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