On September 30, 2015, our 4-year-old son woke up a completely different person. He was speaking differently; he had uncontrollable anger and rage. All of his clothes felt itchy, he said. Then he started counting numbers, repetitively; it was non-stop number counting for hours on end. Then he started chewing the inside of his lips raw. We thought it was just an off day, but we knew something was terribly wrong the next day. He woke up the next day with all of the same behaviors as the day before, but this time something else happened. We were eating dinner at the dinner table when all of a sudden, our 4-year-old looked at us and said "Mommy, I just peed my pants on the chair. I didn't even know I had to pee." I knew at that moment something was so terribly wrong with our son, as he had NEVER had an accident since he was 2.5 years old. He wet the bed twice that night, and then woke up telling us that his brain was saying awful things to him and making him feel angry. He also developed a severe separation anxiety and anxiety about everything in general.
Before September 30th, our son was your average 4-year-old, kind, sweet, and outgoing. He loved making friends and going to school. His teachers once told us at parent teacher conferences that he was at the top of his class, morally and academically. He was vibrant and smart and so enjoyable to be around.
I immediately called his pediatrician and she got us right in. She took notes of the behaviors, did some of her own tests, then she called two other doctors in. Each doctor took turns examining our son. After they talked outside of the room, they came in and said we would be immediately admitted to a children's hospital for observation. Something was wrong with his brain, they said. It could be a stroke or a tumor, and he needed to be evaluated immediately by a neurologist.
At the hospital, our son received an EEG to check for seizure activity and an MRI, in which he had to be sedated. Doctors took an extensive health history, and dozens of physical examinations. All of the tests came back clear. There were no tumors or bleeding and no seizure activity. They told us that took blood for labs and some of the tests took weeks to get results for, and said we could be discharged from the hospital and would be notified of the results when they came back.
As we were packing our things up from our 3-day stay, one of the doctors came in and apologized for not being able to immediately diagnose the problem. He said they wanted to ask us one last question before we left: Had our son had a recent strep infection?
My heart started pounding. A few months prior to these overnight behavior changes, our son had become sick. We took him to a local urgent care. They did not swab him for strep throat and told us he had the common cold. A week later, we were back in that urgent care because our son had a rash and fever. He was diagnosed with scarlet fever, which is caused by a strep infection. The urgent care doctor put him on an antibiotic. We followed up with another doctor a few days later, as we were instructed to do. That doctor took him off of the antibiotic because she did not think they were needed, as she did not think he had scarlet fever.
We explained this to the doctor and it was like a light bulb went off in his head. He said "are you serious?! I will be back! I have to make a phone call. Please do not leave yet."
A few minutes later, the head neurologist stepped into our room. He said that since our son never completed a full dose of antibiotics for his initial strep infection, that strep had managed too infect his brain through the blood brain barrier. (The antibodies cross the blood brain barrier, not the strep bacteria itself.) He said he was almost 100% certain that our son had a rare disorder called PANDAS.
My husband and I had never heard of PANDAS. We asked one hundred questions and were directed to medical journals, as that was just about all of the information that was available about the disorder. The neurologist explained that PANDAS is a fairly new diagnosis, and being such, it hadn't received much research quite yet.
We left the hospital with a prescription for amoxicillin. After the first dose, we saw an immediate improvement. But after the 10-day supply was up, the behaviors all returned. The neurologist was booked up for months. We thanked him for his help, (we owed him everything) but decided to see another doctor two hours away who specializes in PANDAS. It was easier and quicker to be seen that way.
Once we saw the PANDAS specialist, we were given six months worth of antibiotics. After completing them, our son was back to normal. We are 2 months, almost 3 months post antibiotics and are back to baseline! Actually, we are better than baseline! Our vibrant, loving son is back and healthier and happier than before!
I thank the hospital and doctors we had everyday for my sons return to normalcy. There was less than 5 days between initial onset and diagnosis and treatment. I'm sure this quick action has made our PANDAS experience easier than most. The doctors have said that he may never have another PANDAS flare in his life thanks so such quick treatment.
My hope is that children be given the opportunity to be diagnosed and treated quickly, in order to raise their chance of quick healing. The only way to do this is to make PANDAS widely known to every physician, to spread the word and be heard.
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