The story of LaDonna
Up until a year ago I was told that my son Tyler had Tourette’s, OCD, Anxiety, and ADHD/ADD. Of course this was mind-blowing and hard to process as parents of what appeared to be a healthy 7-year-old at the time. When he was 4 years old he had his first of several positive strep throat infections accompanied with sporadic joint pain. He always seemed sicklier than my other 2 children but I figured he just had a lower immune system and caught whatever bug was going around his school.
Like any good mom, I repeatedly took him in to see his pediatrician with every fever where he was treated with a course of antibiotics. We kept this up every month for over a year.
In 2012 my husband left for deployment and that year changed our lives forever. Tyler began to have more positive strep tests and also caught the flu shortly after another strep infection. He was sick in the hospital for 18 days. Operating as a single parent due to my husband’s military responsibility, I began to notice things changing. I quickly assumed that these rapid changes were due to the absences of my husband, only to find out later that this would not be the case.
Tyler was referred to as gifted as early as kindergarten and was a straight A student. He was very independent with his studies and such a sweet and loving little boy. He was the one that took instructions well and always made friends easily. After he recovered from the flu, I noticed Tyler began to showcase impulse behaviors as well as a strange “throat clearing” sound during meal times. Along with the random “throat clearing” noise, Tyler began to have an overwhelming amount of worry for a 5-year-old. He would wake up in the middle of the night saying he feared he wouldn’t get into college. I laughed it off and put it under the “kids say the darnedest things category and assumed his anxiety was due to his father not being around anymore. After a couple of months, the anxiety appeared to get worse so I decided to take him in to see a clinical psychologist to help him talk through whatever was going on. He had been in therapy for a few months when we received word that my husband wasn’t coming home as we had recently anticipated and we would be going through yet another transition. I feared it would be another burden on Tyler. His anxiety didn’t seem to be progressing but therapy wasn’t improving it like I had hoped either.
Tyler began a new school in September of 2013 and soon after my husband returned from deployment. I had hoped that the consistency at home was just what he needed. Instead, Tyler became extremely emotional after his first week in his new school. He would literally cry over spilt milk. My previous honor student began to struggle with homework, focusing, and overthinking every assignment. He would get stuck on one thing for hours and would erase his work over and over until holes covered the paper. He would obsess that it wasn’t “right” and frantically erase the marks. I knew in my gut that what we were dealing with was more than typical anxiety. I began looking for answers.
Along with his new found behaviors he continued to be sick with strep and viral infections that would sometimes land him in the hospital. In 2014, we decided to have his tonsils and adenoids removed due to the frequent amounts of strep infections. After getting this surgery, we figured we should get him a flu shot and that would cover all the bases for a better year of good health. This did seem to get rid of the strep infections. However, we were still battling with the emotional and behavioral concerns and they were getting worse. Tyler started wetting the bed and having difficulties remembering two step directions. He would have long periods of rage and anger with a horrible sense of guilt that shortly followed. We started getting medical evaluations from local Behavioral Health providers and Psychiatrist. After receiving a list of diagnosis which included Tourette’s syndrome, OCD, Anxiety, and ADHD/ADD, the providers determined that Tyler needed medication to help control his issues. It didn’t feel right to me and my mommy gut said no, but I felt like I had no other option so we went with it.
Less than 48 hours of being on the medication Tyler started having strange obsessions along with motor and vocal tics from head to toe. The tics were so bad; he could barely speak or hold a cup of water. I immediately contacted the provider’s office and they informed us to stop all the medication. We were told that all this would go away upon stopping. Sadly, Tyler symptoms worsened. He wouldn’t eat any food that touched on his plate, he had insomnia, he could barely walk due to joint pain in his lower extremities, and when he did finally fall asleep he would wake with horrible nightmares. We were terrified at what was happening to our child. We felt as though we were losing him.
As a mom, I felt like there was something I needed to do to fix this. I am supposed to be his resource and his protector. I felt like a complete failure as I watched my son have panic attacks from simply riding in the back seat of our car. I struggled to look at my son for weeks as he would spill drinks on himself from the motor tics he was having. This was the lowest points of my life seeing my son struggle with the daily tasks of life that were once so simple. He was extremely upset and frustrated with himself to the point he became a rigid and literal thinker hiding his insecurities even from his own mother. My world was literally falling apart before my eyes as I had no idea what was happening to my son. We prayed that God would give us some answers. We received a referral to a Pediatric Neurologist who looked at Tyler’s medical history and due to his chronic battle with strep along with other symptoms he mentioned to us that we should talk to our Pediatrician about a condition called PANDAS.
We spent days researching the disorder and immediately the light bulb came on for us. This is what had been debilitating our poor son. Tyler exemplified every symptom associated with PANDAS. After seeing his Pediatrician, Tyler was diagnosed last year. We thought, YES we have figured it out and now we can help our son get better. Unfortunately, this was the start of yet another journey. PANDAS is not widely recognized and has limited research. We quickly found that some providers won’t even see children with PANDAS. We still struggle with finding providers who understand that this isn’t treated like a typical mental illness, its infectious in nature. We struggle finding medication that won’t make him suffer awful side effects. He is 9 now and is on all natural supplements that have been helping in many areas. Even with the new found diagnosis, we are still dealing with lingering anxiety, OCD, and tics. He still flares after catching a simple cold or being around someone that may be sick. His immune system is crushed and keeping him from getting sick is such a challenge. He couldn’t play with friends or visit family because of this fear.
After a complete overhaul on vitamins and supplements, essential oils, and drastic diet change we are trying to find a baseline for Tyler. But we still have a long way to go. I am committed to being a part of the solution so children like Tyler aren’t shifted around to several different doctors with little to no help. No child should ever go through this and no family should ever have experience “losing” their child and feeling like there’s no hope.