“Our son was a happy, easy going child. He hit all his milestones, smiled and laughed. He was a joy to raise. He thrived in all areas of life as a healthy infant should.
I distinctly remember when our son’s personality changed. He was 15 months old and it was after suffering two febrile seizures and a 106.7 degree fever after his 15-month well and flu vaccines. A once happy, easy going and sweet toddler was suddenly aggressive and had emotional lability on a daily basis. He would be physical with people, throw toys, completely lose it with anger. This wasn’t just the normal tantrum; it was like he was in his own world. He would scream bloody murder to get in the bath tub, he became obsessed with wearing ‘soft’ clothes and suddenly had separation anxiety. He wouldn’t go into the gym daycare that he once loved. Some of the foods he used to eat, he no longer ate and often threw across the room. He was extremely sensitive to smells and would run away when he smelled something he didn’t like. It was like walking on egg shells since an explosion could happen at any moment for no apparent reason. I chalked it up to him being a toddler and the ever-changing likes/dislikes toddlers go through, with a new baby brother and all the changes military life brings. Over time I knew this was not the case. Comparing his younger brother’s behavior to his was distinctly different.
Our son came down with Strep 5 times in one year. With each episode of strep, his symptoms escalated. He’d have emotional outbursts, not want to eat and become aggressive. Antibiotics and Motrin always made all these symptoms disappear. His happy, easy going personality came back. With a new infection or once the antibiotics were complete, the symptoms came back. I found this interesting and would eventually learn why.
At age 3, sleep suddenly became problematic. It would take him about 2 hours to fall asleep but wake about 2 hours later. He’d be wide awake for about 3-6 hours straight. This continued for about a year along with increased behavior issues. We were sure we controlled all variables in his life from routine, to a healthy diet to appropriate discipline. None of this helped with what he was experiencing. He had a battery of psychiatric and sleep tests done, all of which came back normal. Of course my husband and I were relieved, but still didn’t have answers. Even the doctor was shocked it wasn’t something more definitive, and generically diagnosed him with ‘Disruptive Mood Dysregulation Disorder.’ The treatment plan did not last long since it was not at all beneficial.
At the time we were an active duty military family which can be isolating enough, but with the state of our child, it made it that much more isolating. The judgment was evident from other moms. They had zero clue what we experienced on a daily basis. As an outsider it’s easy to judge and have all the answers to stop his behavior. We ended up not going to a lot of social events or playdates. I have two dear friends who have been with me through the majority of this journey and we are still best friends today. A valuable lesson I have learned through all of this is do not judge a parent based on their child’s behavior. You have NO clue about their circumstances.
As our son got older, his outbursts became louder and stronger. His daily emotional lability and irritability remained constant. Since we put him in his room if he was having a rage, we had to remove anything he could throw. He would become violent, even hitting or attacking us. We physically had to hold him down until he got through it. Most would only last 30 seconds to a minute or two. We had to leave church several times since he could not deal with the sensory overload. Ironically in school he was fine in regards to behavior. There was some hyperactivity occurring there and an occasional dispute with a friend, but nothing like we experienced at home. Another reason why it was so hard to get a proper diagnosis.
After 14 doctors over the course of 4 years, numerous tests, mis-diagnosis and treatment plans (none of which worked), in my gut, I knew we were missing something and I wasn’t going to stop until we figured it out. How does a healthy child become this way overnight? When he was fine, he was fine! He was a normal child laughing, playing and enjoying life. But when he was in this state of goodness knows what, it was awful. We were not in denial that something was going on, clearly there was, but what in the world was it? I knew our son was in there somewhere!
One day I was on Facebook and an article was trending. Anger, bed wetting, moody, anxiety, sensory, food restrictions/aversions, OCD tendencies, tics, sleep issues, outbursts, rages…the symptoms and stories I was reading described what we were going through with our child. I cried, this WAS HIM, this is what OUR SON had! PANDAS/PANS. Thank God we may finally have an answer. There was ZERO doubt in my mind that he had this. The next day I called a specialist and we saw him a week later. He was diagnosed with PANDAS/PANS and we started his treatment plan (antibiotics being part of it which explains why they always helped him). It’s amazing how God works and knowing he has a plan that we sometimes cannot understand.
PANDAS is when one’s own antibodies attack the child’s body immune system since it mistakes it as something foreign. The brain and spinal cord become inflamed causing a misguided immune response resulting in psychiatric changes such as OCD, tics, aggression, anxiety. Not all PANDAS/PANS patients exhibit every symptom that is associated with it. As with most diseases, there is a spectrum of severity.
I urge medical professionals, family and friends to watch the documentary, ‘My Kid is Not Crazy.’ It is on Vimeo on demand and available to buy on the My Kid is Not Crazy website. It depicts the life of numerous PANDAS patients and families going through this living hell. You’ll find these cases to be severe but accurately portrays the symptoms, loopholes in the medical and insurance world and how kids are automatically labeled as mentally ill.) It is so frustrating that medical professionals don’t know about it and some even deny its existence.
A year and half later from his diagnosis, our son is doing fabulous! We have our son back and thank God every day for that. It took some experimenting with specific antibiotics and other supplements but he quickly caught up with academics, interacts appropriately with peers, makes jokes and is genuinely happy. His responses to his environment and situations are age appropriate. He loves football, Legos and playing with friends. He finds joy in everyday activities like any child should. We know full well that a flare up can occur at any point in time, but hopeful this is in our past for good. For now, we are embracing that our son is doing so well.
I am passionate about spreading awareness about PANDAS/PANS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). PANDAS Network is a great site thoroughly explaining PANDAS.”
This story was submitted to Love What Matters by the Johnson family of North Carolina.
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