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.
And So Our Journey Began
I restricted his diet to eliminate all dairy, gluten, grain and eggs. After a week of seeing no changes I began eliminating night shades and citrus and the list continues, still no changes. Then we made an appointment with our pediatrician. Desperate for more answers, I asked for blood work to be done including vitamin and mineral levels. Plus I brushed on the topic of PANDAS. I didn’t know too much about it, however skimmed over it in my research. I was not convinced this was what he had but thought it was worth a shot in asking. To which she responded “even if he does there is nothing you can do about it, but he hasn’t been sick lately so it’s very unlikely”. She was very kind, and assured me that as times passes I will learn to accept this diagnosis. I shrugged it off at the time, thinking she made sense in terms of the PANDAS, but what was it then?
I left feeling defeated, frustrated and still convinced there was more to whatever it was attacking my child. Why wasn’t anyone listening? Why weren’t they helping? During all of this, Gregory continued to regress, not only were the tics increasing; now his fears were off the charts. He would not go anywhere in the house without one of us or his little sister with him. He would not fall asleep without all the lights on and somebody lying beside him, holding onto us for dear life. He would wake numerous times in the night, full of fear, however never disclosing what he was fearful of. He would get so angry at times and rage, so much so that I would have to get him in the car and drive around until he calmed down, fearful he was going to hurt his little sister. It was petrifying. He would say, “I just have to hurt her, just let me get to her”. It would take a few hours at times to calm him down. When we would discuss his episodes later on, he would tell us he didn’t know why he acted like that and he couldn’t help it. It was the scariest thing ever to watch this little person, your little person, turn into something they were not, right in front of your eyes. Of course; friends, family, priests, professionals would weigh in…. “maybe he needs counselling? try yoga? Maybe this is early signs of schizophrenia? Was he bipolar?”
My mind would race and I would sit in bed night after night reading anything on could get my hands on, “where did my boy go? and why can’t I help him? I’m his mother; I’m supposed to be able to fix everything”. We tried EVERYTHING, yoga, exercise, talking, food, massages, osteopathy, craniosacral therapy, more elimination diet, vitamins. Nothing was working; we continued to eliminate any toxins in the house, air purifier, water purifier and followed a very strict diet. I was going crazy and the only way I could control anything was through food and the environment he lived in. If anything, I know proper nutrients can help heal the body.
The days continued to pass with still no answers, I would keep Greg home from school on his especially trying days. However, he really truly seemed to hold it together at school. Yes, his teacher would report the tics were severe and almost scary at times, however he still maintained his exceptional work ethics, was attentive in class and maintained his friendships AND he WANTED to go to school. His teacher was an angel through this devastating time, she would report back each day. If she noticed Gregory getting into “trances” we would call them. She would gently tap his shoulder and he would go walk around the school and take a body break. The teacher would report that on more active class days his tics were not as severe. Each day I would wait for a report that he was better today…..it didn’t come.
Some Help with Correct Diagnosis and Natural Healing
UNTIL, I finally found someone willing to see Gregory. A Naturopath specializing in children with Tourette’s and tics.
After seeing Greg and going through every little detail, she looked at us and said “I don’t think your child has Tourette’s, I think he has PANDAS and I can help!!” I’m pretty sure I screamed and cried all at the same time. She explained in detail what PANDAS can do to a child. She let us know to expect a long road to recovery but that she could help. Her goal was to heal his body and start treating naturally. A glimmer of hope…. So it began, Goldenseal 2 twice daily, magnesium and NAC, continue with elimination diet and report back in 6 weeks.
We began immediately, within TWO days his teacher came to me after dismissal elated.” I saw nothing to day……nothing, nothing, nothing. no eye rolling, no head jerking, NOTHING!!” I couldn’t believe what I was hearing. Although the tics subsided, some of the behaviors continued. Mostly, the fears at night. He was put on homeopathics to help with the fears and anxiety. These behaviors and fears slowly began to subside as well. By the end of the summer we felt like we had our boy back. We were at the cottage; my husband and I sat back and watched him play with his sister. There he was ….our boy; kind, sweet, giving, helpful. He even put his sister to bed that night. Went into the cottage all by himself and put her and himself to bed. Could we really put this behind us? Has he won this battle? We went to bed peace fully that night, not a care in the world. Our prayers had been answered. We relished in the moment, the days and months ahead.
Unfortunately, my fears proved to become yet another reality, right after a wonderful Christmas holiday celebrating all the things we had to be thankful for this past year, it began again. First with the head turning, then came the eye rolling, then the eye blinking. Nothing was as severe as the first time, nevertheless absolutely devastating. To have your child turn and say “mom, why does this keep happening to me? Will I ever be like my friends again?” is so incredible heartbreaking.
As we continued treatment with the naturopath and continued with NAC and goldenseal along with host of other vitamins, I just had a feeling there was still more. It’s as if stars were aligning, Greg’s Osteopath had just the week before this “flare up” told us about a Blood Analyst in the area. Off we go…..again she found more. Immediately she pointed out the autoimmunity (PANDAS), as well as a host of other things going on inside his body. He was FULL of metals, high levels of thallium, mercury, lead. He had parasites, yeast and food sensitivities. I was IRRATE, angry, frustrated. This disorder was attacking my child‘s immune system. Had he not been through enough? Bless his little soul, he persevered without much complaining. He was a year older now; he began to ask a lot of questions at his appointments. He wanted timelines; he was ready to keep fighting and willing to do anything, he just wanted an answer like the rest of us. “How long will this last, when will my body be healthy again?” His resilience amazes me each and every day.
It’s now April, Gregory appears to be getting better, and each week seems to be better than the last. His body is slowly detoxified from the metals, again this will take time. Some days are worse than others, however the good definitely outweigh the bad and the bad parts are not as terrifying as they used to be. Gregory will identify when he is feeling frustrated and will often retreat to his room for a few minutes to relax and will return generally with a hug and an apology for his actions.
As I ponder over the last year and everything he has been through, I’m still looking for answers. When did this happen and why? How long had he been suffering before I noticed? Was he affected during his 7 hour open surgery as a baby and the autoimmunity lay dormant in his body until it was affected by a virus? As I think back to a few years ago, there were days when he would go through periods of wetting his bed, of being fearful, of clearing his throat. I never attributed it to anything, just being a kid. Greg was always so complacent that I didn’t realize there was a problem. Maybe just maybe had I caught it a few years ago maybe this PANDAS wouldn’t have completely taken over my child. I still can’t/won’t stop searching for answers because I think there is so much more to this PANDAS puzzle. I want to ensure that my child will grow and be healthy and be rid of this demon inside that is so relentless. The positive side to this past year is we have learned there is always a positive; a reason to be thankful.
Thankful that our son has shown the amount of determination, the will to fight, which we as adults struggle to find, is the most incredibly awing moment as a parent.
Thankful that our son is surrounded by incredible little people (friends & cousins). We have learned by watching his friends; children are tolerant, accepting, gentle and kind. Even in Greg’s darkest moments, his little people continued to treat him as the buddy they always knew. They didn’t stare or avoid him. If they asked about his tics, it was out of care and honesty. They never walked away.
Thankful for our family and close friends; I’m not exactly sure how we would have found the strength to cope and continue the fight each and every day without their shoulders to cry on, their ears to listen, their special meals prepared just for Gregory and all their prayers.
Our family learned something very important through this journey, the importance of our family and friends. Gregory is without a doubt, in our eyes truly fortunate and blessed. He is our hero. For now, our home is peaceful and PANDAS is no longer winning the battle. We have our son and that is a whole lot to thankful for.
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