“Life was busy but so good, as a mom of three healthy, sweet, active kids! Our world, on the other hand, was turned upside down in January. We took our oldest son (then 7) to the doctor after a week of a high fever that decreased and then rose again. He was infected with strep and has walking pneumonia. We were given antibiotics and a breathing treatment before being sent on our way.
The temperature decreased after a few days, and his breathing improved. He was much better a week later, and his lungs were clear, but he had developed a weird head-throwing cough, according to the doctor. He said his neck hurt since it was so violent. The doctor confirmed that this was a motor tic and that it was frequent with pneumonia. He stated that it would resolve on its own and that there was no need to be alarmed.
His younger brother (then 6) was also diagnosed with an unknown virus and walking pneumonia around the same time. He was started on antibiotics, and his breathing improved after about a week.
Despite some lingering fatigue and weakness, both boys finished their medications and appeared to be virtually fine. They were back in school, but they still had to be careful during recess and PE. I had no idea that this was only the start of our ordeal.
He returned home from school a different boy a few days after finishing his Z-Pak. He stated that he needed to turn off the lights. It was a little too light. He desired to conceal himself behind the couch. He yelled and hissed at his younger siblings and demanded to be left alone. ‘Did anything happen at school?’ I inquired. He said, ‘No,’ but then started crying as he’d never sobbed before. It started as a horrific screeching sound and swiftly escalated into a panic episode… something neither of our children had ever experienced before. I didn’t know how to deal with it. I was convinced that something terrible had occurred at school. I genuinely assumed he’d been molested because this was the first time I’d ever seen him act like this in his life. He began weeping, yelling, and hyperventilating for hours. I inquired as to if anything unusual had occurred, and she stated that she had not. Screaming panic episodes became an everyday occurrence, unfortunately.
I started looking into how to handle panic episodes and what might be triggering them. I was aware that he had strep and pneumonia, and that he had taken two medications. It was suggested by my mother that it could be a side effect. I believed we’d solved the issue when I noticed that the Z-Pak had some of those adverse effects! He was curious as to why this was happening to him, and I assured him that he would feel better after the Z-Pak was removed from his system, which would take 15 days.
Unfortunately, the panic attacks quickly escalated into outbursts of wrath. One of the first awful ones comes to mind. He requested a popsicle, but I declined because he had already consumed something sugary. He had transformed into a crazed wild animal! His hands twisted into claws, and his face morphed into an awful visage… He was foaming at the mouth and roaring as he repeatedly slammed the glass oven door shut. I was terrified he was going to damage himself or someone else, so I threw my arms around him and sat with him on the kitchen floor as he thrashed and snarled. As I hugged him, tears streamed down my cheeks. I couldn’t believe this was happening to our precious son. His wrath lasted a long time, and I was exhausted, so his father took over and held him. He finally calmed down after a few more minutes. It was both terrifying and heartbreaking.
After 15 days, he wasn’t any better; in fact, he was becoming worse. His outbursts had gotten so frightening that I had hidden the kitchen knives, fearful of what he would do if he lost control. He was forced to wear headphones to school and refused to attend music class because it was too loud. As soon as he got home from school, he would flee to his dark corner and growl at anyone who ventured close. This is when I requested that the ladies in my Bible study core group pray for him and our family. I simply didn’t know how to assist him. PANDAS was mentioned to me by one of the females. She said that her daughter had OCD overnight after contracting strep, but that she had recovered with treatment. I thanked her but didn’t pursue it further because he didn’t exhibit this symptom.
I returned him to his doctor and discussed his out-of-character behavior with her. I recorded his rages and panic attacks and showed them to her. She knew this wasn’t like him because she had been his doctor since he was a baby. She didn’t know what to do, despite her desire to assist. She mentioned that he might be attempting to manipulate us or that he suffers from a mental illness, and that we should get help from a psychologist.
I had a feeling it had nothing to do with deception. I also realized it couldn’t be a psychological or behavioral issue. Overnight, he’d transformed into a completely new person. Then I remembered the woman who had recommended PANDAS to me (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). I decided to do some research on it. I learned that OCD wasn’t the only symptom! Motor tics, rages, anxiety, food aversion, school refusal, handwriting and numeracy deterioration, and emotional liability are some of the symptoms. I joined Facebook support groups and read till the wee hours of the morning to figure out why this was occurring and how I could help him.
After a lot of reading and investigation, I discovered that Motrin was recommended by the National Institute of Health for inflammation. I started giving him Motrin 24 hours a day, and his rages were reduced by 80-90 percent! It was nothing short of a miracle!! My son’s doctor was out of town, so we went to another doctor who was recommended to us since she had previously treated PANDAS. She examined his blood and discovered that he had no antibodies to strep! I was surprised because he got a positive strep test a few weeks before. She said that antibodies were to blame for the neuropsychiatric symptoms and that because he had symptoms but no antibodies, it couldn’t be PANDAS, so she wouldn’t treat him. I was so irritated!
We began to notice strange symptoms in his brother around this time. He developed a throat-clearing habit and began hoarding plush animals, which he had to arrange in a specific manner every night or he couldn’t sleep. He told me he was afraid because he feared someone was observing him. He also stated that he was depressed every day for no apparent reason.
At first, I assumed it was a reaction to his brother’s awful condition. They are only 17 months apart and have always been great friends, but since the beginning of this, my son has been continually rejecting him and lashing out at him. We assumed it had utterly thrown his world into disarray, and he was attempting to make sense of it all. He couldn’t get out of bed in the morning because of the strange psychological symptoms. He was also always whining about the pain in his knees and ankles. Every morning, I had to carry him to the restroom and downstairs.
He quit drawing because he was continually disappointed that he couldn’t draw, in addition to the rages and panic episodes. He was generally a highly skilled artist. When he couldn’t sketch, he’d crumble paper after paper. His grades started to worsen, and he started gnawing his fingernails and toenails, which he had never done before.
We went to see their doctor once she returned from her vacation. I told her what the other doctor had indicated, but I also asked if we could take a blood test for mycoplasma, which she claimed was the cause of their pneumonia. She consented to test for mycoplasma in their IgG (previous infection) and IgM (current infection) antibodies. BINGO!! My son’s IgM was 3300, which is considered normal or negative. His IgM level was 2100! We chose to test our 2-year-old daughter as well, and she was found to have a mycoplasma infection as well, despite the fact that she had no symptoms! We finally got a response!! They had PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), an umbrella term for children who develop neuropsychiatric symptoms suddenly, nearly overnight. In most cases, the origin of PANS is unknown, but infections, metabolic abnormalities, and other inflammatory reactions are likely to be the triggers.
We started antibiotic treatment right away! Supplements, alternative treatments, immunological support, and detoxification were all investigated. Other common co-infections were tested in the blood and came out negative.
We could see the youngsters improving, but it was a slow process. Particularly at night, bedtime was a nightmare. Because my husband works out of town during the week and I couldn’t do it alone, my mother had to come help every weeknight. Separation anxiety was severe, and each boy had distinct and disparate requirements. Mornings were also difficult. It was quite difficult to get kids out of the car for school in the mornings.
We met with the school to explain their disorder, and we were able to obtain 504s for the boys, which included accommodations like the opportunity to wear headphones, frequent breaks, and excused tardies and absences since they were sick on some days.
I recall him informing me that he no longer wanted to live with us. Because his brother and sister were so loud, he never wanted to see them again. He begged to spend the night at my mother’s since he might be alone. We agreed, but I told him I’d pick him up in the morning because it was picture day at school. He refused to go the next morning when I wanted to pick him up. When I tried to get him out of the car, he screamed and cried. He claimed he’d been rehearsing and attempting to smile all morning but couldn’t bring himself to do so. He declined to go, and his photo day was canceled. It was a painful experience.
After a month or two, his brother’s OCD, paranoia, melancholy, and chronic exhaustion improved, although he still experienced sensory issues and rages when his protein intake was too low. My son was in the same boat as me. His sensory difficulties and rages were nearly gone when he ate enough protein! We feel it has something to do with the fight-or-flight response. Detoxification is another important component of the puzzle that we discovered. Daily charcoal, Epsom salt, or bentonite clay baths, as well as prunes, ensured that poisons and dead microorganisms were not trapped inside. Probiotics are essential!
The guys are 80-90 percent back to normal, despite the fact that they aren’t entirely recovered! When my son is exposed to illness, he still has ADHD symptoms, and my other child has minor OCD and despair. When they don’t get enough protein or have too much sugar, they still rage. To minimize inflammation, we avoid colors and consume a gluten-free diet. They are, however, mostly happy and themselves now! My younger son has a 504 in place to meet his requirements when they flare up, and he has been granted an IEP because his symptoms sometimes impede his learning capacity.
We’ve been to hell and back, but our family life is once again full of love and laughter! We’re all stronger and more capable of dealing with flare-ups now. My best suggestion is to trust your instincts. Don’t let inexperienced providers or school personnel dissuade you from advocating for your child! This isn’t going to be an easy road, and there aren’t going to be any quick cures. You are not to blame for this. It’s not your child’s fault. You’ll learn to appreciate the ‘regular’ days even more! You’ll discover out what kind of person you are! You will see your children once more! “Don’t give up!”