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.
DIAGNOSIS & TREATMENT
I started reading about the disorder called PANDAS. After reading about the sudden onset, I knew that I needed to find every drop of information on this disorder. We took the boys to a couple doctors who dismissed us, saying PANDAS was too controversial and we should just accept they had Autism and therefore the OCD, anxiety, and rages were all to be expected and not to correlate repeated infections to them. IVIG was not going to be an option since we had no medical diagnosis. I was desperate for help. I was always on the computer searching for research and doctors in my area that could maybe help with this new disorder that was not being recognized. In my search, I found a blog by a mom that was shockingly so much like my life. She had started using homeopathy for PANS/PANDAS. Best of all, it worked for her!
That year, Max had so many throat infections and he never seemed to clear them. So we decided to go to see a new pediatrician to get a new set of eyes on the health issues we were experiencing. The pediatrician referred us to ear nose and throat specialist who determined he was in desperate need for tonsillectomy/adenoidectomy. Max’s recovery was an absolute nightmare. He was in severe pain and the medications didn't touch it. I had bought a small bottle of a homeopathic remedy at a local health food store. I gave him a few pellets under his tongue as he screamed bloody murder in agony one night after his surgery. They worked; I swear I cried when he fell into a peaceful sleep. I knew I had to get an appointment with a homeopath as soon as possible. Max continued to have a terrible recovery from surgery. He spiked a 105 fever on high dose antibiotics and had to be re-admitted for 3 days into the hospital. After that, Max continued to have rounds of strep throat and high ASO titers. I knew from working in a hospital for 10 years, that we were headed to antibiotic resistance. I had witnessed it first hand and knew I had to seek out alternative methods to deal with this PANDAS beast. Unfortunately, tonsillectomy was not our golden ticket to health. It seemed that it had unleashed the bacteria into our house ten-fold. Soon after, Parker also started spiking fevers of unknown origin that were as high as 104-105. They were never able to find the cause of the fevers. We ran back and forth to doctors and emergency rooms for 5 months. An immunologist simply told us we had “bad luck” when it came to our sons’ health. We had hit a wall and were not getting enough help so I finally begged my husband to take our savings and consult the homeopath. Our pediatrician referred us and we made the appointment.
After our consult with the homeopath for Max, I gave him the remedy with the best intention and prayed for mercy on my son. Ten days later, I asked the school how he was. The teacher’s report back to me was that he had a 180-degree turn around in his mood, focus and was not crying as much. Previously, he had no focus and cried multiple times a day. He was getting better!! We quickly made and appointment for Parker to help get his PANDAS disorder managed. He also is a thriving social butterfly. No more eloping, aggression, or rage. We travel to fun new places and visit our friends and loved ones.Max was mainstreamed in school with no aide up until 2015. He no longer meets an autism diagnosis. Which is a miracle! He was loved by his teachers and interacted appropriately with his peers and made friends while at school. He had a back slide in health in 2014, which was related to undiagnosed Mast Cell Activation Disorder (MCAD), which can often affect those with PANS. He entered a brand new school that was toxic with volatile organic compounds and it created a HUGE regression in his cognition, and inflamed the brain. Removal of toxic environmental factors is key to managing MCAD. He was placed on medical homebound during the last part of the year and after that we decided to home school rather than try to send him back in the fall. He was suffering with syncope, brain fog, migraines, near anaphylaxis, dysautonomia, and stroke-like symptoms before we pulled him out of school. After he was on homebound, he was once again able to play outside, swim, go to trips with friends and not be sick with syncope, near anaphylaxis or migraine headaches. Now he is really blossoming as a kind, gentle, animal loving old soul. Everyone that meets him is blown away at his brilliant mind and kindhearted ways. Homeopathy really gave us our lives back. We are finally free to live and enjoy life.
Parker is still in public school. All of his birth-to-three providers are blown away at his progress. At his IEP meeting last year, they kept asking if he actually had an autism diagnosis because they can’t believe it. He is mainstreamed with no aide and thriving as a student and loved by his peers. He enjoys school and having his friends over to play on regular basis. He is brilliant and declared he wanted to learn Physics this year. He is such an amazing soul. Anyone that knew us in the beginning of our healing from PANS/PANDAS journey will tell you homeopathy saved our family.
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