‘He literally turned into a rabid wild animal! His face looked evil. I couldn’t believe this was our sweet boy.’: Son diagnosed with PANDAS disorder

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“As a mom of 3 healthy, sweet, active kiddos, life was busy, but so good! Last January, however, our world was turned upside down. After a week of high fever, which subsided and then spiked back up, we took our oldest son, Maxwell (then 7), to the doctor. He tested positive for strep and also had walking pneumonia. We got antibiotics for both and a breathing treatment and were sent on our way.

Courtesy of Carrie Minton

After a few days the fever subsided and his breathing improved. A week later he was much better and the doctor said his lungs were clear, but he had developed a strange head-throwing cough. It was so violent, he said his neck hurt. The doctor told us this was definitely a motor tic, and that it was common to see this after pneumonia. He said it would resolve on its own and was nothing to be concerned about.

Courtesy of Carrie Minton

Around the same time, his younger brother, Liam (then 6), was diagnosed with an unknown virus and walking pneumonia as well. He was started on antibiotics and saw improvement in his breathing in about a week.

Courtesy of Carrie Minton

Both boys finished their antibiotics, and it seemed they were finally almost well, despite some lingering fatigue and weakness. They were both back in school, but still had to take it easy at recess and PE. Little did I know, this was just the beginning of our nightmare.

Courtesy of Carrie Minton

A few days after Maxwell finished his Z-Pak, he came home from school a different boy. He said he needed to turn the lights off. It was too bright. He wanted to hide behind the couch. He snapped and growled at his little brother and sister and wanted to be left alone. ‘Did something happen at school?,’ I asked him. ‘No,’ he replied, but he began crying like he’d never cried before. It was a horrible screeching sound, and it quickly turned into a panic attack… something none of our kids had never experienced. I had no idea how to handle it. I thought something horrible had happened at school. I actually thought he might have been molested, because I had never seen him act this way in his entire life. It turned into hours of him crying, screeching and hyperventilating. I asked his teacher if anything unusual had happened and she said she hadn’t noticed anything. Unfortunately, the screaming panic attacks became a daily occurrence.

Courtesy of Carrie Minton

I began researching how to deal with panic attacks, and what could be causing them. I knew he had strep and pneumonia and had taken 2 antibiotics. My mom had suggested that it might be a side effect. Sure enough, the Z-Pak had some of those side effects so I thought we had solved the mystery! He wanted to know why this was happening to him, and I told him that he should be better as soon as the Z-Pak was out of his system, which would take 15 days.

Unfortunately, the panic attacks soon turned into rages. I recall one of the first bad ones. He wanted a popsicle, and I said no, because he already had something sugary. He literally turned into a rabid wild animal! His hands turned into claws, his face changed and looked evil…he was foaming at the mouth, hitting the glass oven door over and over, and growling. I was afraid he would hurt himself or someone else, so I wrapped my body around his and we sat on the kitchen floor as he thrashed and growled. I remember tears running down my face as I held him. I couldn’t believe our sweet boy was going though this. His rage episode went on for some time and I was getting so tired, so his dad took over and held him. After a few more minutes, he calmed down finally. It was so scary and so sad.

Courtesy of Carrie Minton

After 15 days came and went, he wasn’t any better, he was worse. His rages had become so scary I hid the kitchen knives, afraid of what he might do when he lost control. He had to start wearing headphones to school and refused to go to music class because it was too loud. He would retreat to his dark corner as soon as he came home from school and would growl at anyone who came near. This is when I asked the ladies in my core group at Bible study to pray for him and our family. I just didn’t know what to do to help him. One of the ladies suggested that I look into PANDAS. She said her daughter had developed OCD overnight after strep, and with treatment, had recovered. I thanked her but didn’t look into it, since he didn’t have this symptom.

I took him back to his doctor and talked to her about his out of character behavior. I showed her videos of his rages and panic attacks. She had been his doctor since he was a baby so she knew this wasn’t like him. Although she wanted to help, she didn’t know what to do. She suggested he might be trying to manipulate us or might have a mental disorder and that we should see a psychologist.

I knew in my gut it had nothing to do with manipulation. I also knew it couldn’t merely be a mental or behavioral problem. He had become a different person overnight. Then I remembered the lady who had suggested PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). I decided to look it up. I discovered there were other symptoms besides OCD! Motor tics, rages, anxiety, food aversion, school refusal, decline in handwriting and math, and emotional liability. I found support groups on Facebook and read all hours of the night to figure out why this was happening and how to help him.

After tons of reading and research, I found the National Institute of Health recommended Motrin for inflammation. I began Motrin around the clock and Maxwell’s rages were reduced by 80-90%! It was a miracle!! Maxwell’s doctor was out of town so we saw another provider who was suggested to us, because she had treated PANDAS before. She tested his blood and found no strep antibodies! I was shocked since he had a positive strep test weeks earlier. She said it was the antibodies that caused the neuropsychiatric symptoms and since he had symptoms and no antibodies, it couldn’t be PANDAS and she wouldn’t treat him. I was so frustrated!

Around this time, we started noticing unusual symptoms in Liam as well. He began a throat clearing tic, started hoarding stuffed animals, and had to arrange them a certain way every night or he couldn’t go to sleep. He told me he thought people were watching him and he was terrified. He also said he was sad every day and didn’t know why.

Courtesy of Carrie Minton

At first I thought it was a reaction to the traumatic situation with his brother. They are only 17 months apart and had always been best buddies, but Maxwell was constantly rejecting him and lashing out at him since this all began. We thought it had just completely rocked his world and he was trying to make sense of it all. In addition to the unusual psychological symptoms, he could barely get out of bed in the morning. He also was always complaining about his knees and ankles hurting. I had to carry him to the bathroom and downstairs every morning.

Courtesy of Carrie Minton

In addition to the rages and panic attacks, Maxwell, normally a very talented artist, stopped drawing because he was constantly frustrated that he couldn’t draw. He would crumble up paper after paper when he couldn’t draw. His grades began to suffer and he also began chewing his fingernails and toenails, something he had never done.

Courtesy of Carrie Minton

Finally, their doctor returned from her vacation and we went to see her. I explained what the other doctor had said but asked her if we could do a blood test for mycoplasma, since that is what she said caused their pneumonia. She agreed to test their IgG (GONE-past infection) and IgM (IMMEDIATE-current infection) for mycoplasma. BINGO!! Normal or negative is under 770 and Maxwell’s IgM was 3300! Liam’s IgM was 2100! We decided to test our 2-year-old daughter as well and she also had a mycoplasma infection with no symptoms! We finally had our answer!! They had PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) an umbrella term for children who have a dramatic – almost overnight – onset of neuropsychiatric symptoms. The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions.

Courtesy of Carrie Minton

We began antibiotic treatment immediately! We researched supplements, alternative treatments, immune supports, and detoxification. We ran blood test for other common co-infections which came back negative.

Although we could see the boys improving, it was slow going. Bedtime, in particular, was a nightmare. My mom had to come help every weeknight, since my husband works out of town during the week, and I couldn’t handle it alone. The separation anxiety was debilitating and each boy had separate and very different needs. Mornings were very hard too. It was incredibly hard to get them out of the car in the mornings for school.

Courtesy of Carrie Minton

We met with the school to explain their disorder and we were able to get 504s for the boys with accommodations such as the ability to wear headphones, frequent breaks, and excused tardies and absences, as they were too sick to go some days.

I remember Maxwell telling me he didn’t want to live at our house anymore. He never wanted to see his brother and sister again because they were too loud. He begged to stay at my mom’s that night because he could be alone. We agreed but told him I’d be there in the morning to get him for school because it was picture day. When I want to pick him up the next morning, he refused to go. I tried to pull him out to the car and he started screaming and crying. He said he’d been practicing and trying to smile all morning but he just couldn’t make himself. He refused to go and missed picture day. It was heartbreaking.

Liam’s OCD, paranoia, depression, and chronic fatigue did get better after a month or two, but he still had sensory issues and rages when his protein intake was too low. Maxwell was the same. With enough protein, his sensory issues and rages were virtually gone! We believe it is connected to the fight or flight mechanism. We also found another big piece of the puzzle is detoxification. Daily charcoal, epsom salt, or bentonite clay baths, and prunes made sure they were not holding in toxins and dead bacteria. Probiotics are a must!

Although the boys aren’t completely back to normal, they are 80-90% back! Maxwell still has ADHD symptoms and Liam gets mild OCD and depression when exposed to illness. They still rage when they don’t get enough protein or too much sugar. We avoid dyes and they eat a gluten free diet to reduce inflammation. They are happy and themselves most of the time now though! When they do flare, Liam has a 504 in place to accommodate his needs and Maxwell has been granted an IEP due to the fact that his symptoms can affect his learning ability.

We have been to hell and back, but our family life is filled with joy and fun again! We are all stronger and better able to deal with flares. My best advice is to follow your gut. Don’t let uninformed providers or school staff discourage you or make you stop advocating for your child! This is not an easy road and there are no quick fixes. This is not your fault. This is not your kid’s fault. You will learn to treasure the ‘normal’ days so much more! You will find out what you’re made of! You will see your kids again! Don’t lose hope!”

Courtesy of Carrie Minton

This story was submitted to Love What Matters by Carrie Minton of Canton, Georgia. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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