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 more sickly 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 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. 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 quickly changing. I assumed that my son’s behaviors 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 followed instructions well and 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, he 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. 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. We would be going through yet another transition. I feared it would be another burden on Tyler. Fortunately, his anxiety didn’t seem progress but therapy wasn’t improving his symptoms as I had hoped.
Tyler began school in Virginia in September of 2013 soon after my husband returned from deployment. I knew the consistency at home was just what he needed. I was disappointed and concerned when 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, he had trouble focusing, and would spend hours on every assignment. He would get stuck on one thing and frantically erase his homework over and over until holes covered the paper. 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 suffer from strep and viral infections so severe he would have to go to the hospital for inpatient care. In 2014, we decided to have his tonsils and adenoids removed. Committed to keeping him in good health, we gave him a flu shot after surgery. Much to our disappointment, Tyler still struggled with strep and his behavioral and emotional problems kept getting worse. He started wetting the bed and having difficulties remembering two step directions. We received a medical evaluations from local Behavioral Health providers and Psychiatrists. After receiving a list of diagnosis which included Tourette’s syndrome, OCD, Anxiety, and ADHD/ADD, Tyler was treated with medication to help control his issues. Despite my mother’s intuition urging me to not, we started administering the medication. I was lost. I didn’t think there was any other option. My husband and I both agreed that he was suffering so much, we were left with no other choice.
Less than 48 hours after being on the medication Tyler started having strange obsessions along with motor and vocal tics. I immediately contacted the provider’s office and they agreed he should be taken off. We were assured the symptoms would subside upon stopping. Sadly, Tyler symptoms worsened. He wouldn’t eat any food that touched on his plate. He had insomnia. And now, he could barely walk due to joint pain in his lower extremities. In the rare instances that he did finally fall asleep he would wake with horrible nightmares. We were terrified at what was happening to our child. We were losing him. I have never been so afraid in all my life. The thought of those days still takes my breath away.
As a mom, I felt burdened to fix it. I am supposed to be his resource, his advocate; 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 him struggle with the daily tasks of life. 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 entire families lives were falling apart right before my eyes and I didn’t know what the monster was that had overtaken 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 ailing 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.
After a complete overhaul on vitamins and supplements, essential oils, and drastic diet change I feel as though we have exhausted all of our natural approach options trying to find a baseline for Tyler. We had some success, but he was still crippled by tics and anxiety. After months of prayer, we were finally led to a local provider who ordered IVIG for Tyler and fortunately we are in the rare minority who were able to get insurance to cover the cost of care. After spending time researching and weighing all of our options, we decided to move forward with it. His immune system is weak and he keeps getting more and more sick, and so, the inflammatory response caused by PANDAS continues to damage his brain. He can’t play with friends or visit family because we are afraid of him catching an infection. It is time for treatment.
This morning, LaDonna’s and her husband are holding Tyler’s hand. They are gathered in prayer and expressing their love and support to him as he receives his first IVIG treatment with Dr. Zhao at MCV. LaDonna and Tyler and their entire family are brave, and strong. The PRAI family sends their prayers for peace, healing and strength.