Down Syndrome and PANDAS Family Story

My Son Bradley was born in 1998 with Down Syndrome. He was and still is everyone's special boy. He has made amazing strides in life and continues to amaze us today. He verbal skills are very limited so he could never tell me when he was sick. It was very difficult figure him out sometimes. 
 
Sudden Onset OCD and TICS
Back In 2007, when he was nine years old, things changed suddenly. He developed behavioral issues, OCD and Tic disorder. Because of his disability, the psychiatrist would blame his Down Syndrome instead of looking further to find the root cause. As a parent you are desperate to help your child with these issues. We decided to try anti-psychotic medications. However, things got worse over time so in 2011 we decided to change doctors because I was tired of all the horrible medications and side effects. We started seeing a pediatric neurologist when he was 13 years old. He was still going to school but we were noticing more sporadic meltdowns and aggression, more panic and tics, The Neurologist diagnosed him with ADHD, OCD, ODD, IED, with possible Tourette Syndrome, GAD, and Panic Disorder. One thing we pointed out to the Neurologist was he had been treated with numerous antibiotics for different surgeries and infections mainly in his sinuses and ears and after those rounds of antibiotics he had wonderful behavior so much so it was like he was a different child. She looked at me like I had two heads and I was the crazy one.

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Bradley before and after diagnosis. He had picked his skin raw before treatment.

November 18, 2014 was the day our lives turned into pure hell, Bradley just turned 14yo and he became very aggressive and he had that blank stare that gave him the "nobody is home look".  He had an EEG which showed activity in the left frontal lobe and a Negative MRI scan. He was admitted to the psychiatric unit for observation and more psych medication. I went to see him and I noticed he had a sinus infection, which they gave him amox 500mg 3x a day and within 2 days he was my boy again, kissing and hugging staff, coming out of his room. At this point we still did not know anything about PANDAS. Shortly after starting the antibiotics, he was discharged on good behavior on November 26th. Once the course of antibiotics was finished on December 1, 2014 he started quickly going down hill again resulting in yet again another psychiatric admission on December 11, 2014. This time it didn't go so well; I signed him out against medical advice after 13 days of hell. He continued to see his Neurologist for psych medications. At this point he was no longer attending school and was home with me for the next 1 1/2 years.  Nothing was making him better. We walked on eggshells every day wondering when the next outburst would be. He started picking his forehead apart, and the tics were horrible, and I was wiping his bum and showering him at the age of 16; he regressed so much and still this doctor didn't put the pieces together. We were all suffering, especially Bradley. We almost got through the year before his 3rd psych admission in August 2015. It was the same situation, he refused his food and meds and he had tics, panic, aggression, hallucinations, and OCD etc. I will spare the horrific details of them shooting him up with Haldol and Ativan to calm him but it just made it worse. So yet again I signed him out AMA, I fired his Neurologist and found a new psychiatrist, In September 2015, we had Genomas testing done to see what medications he can metabolize to help us do a fast med change at home. We did great with the change over on meds, and it was done very quickly.

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Bradley Today! So happy.

Learning About PANS PANDAS
This is where Bradley's story gets interesting, because of the psych admissions and being strapped to a bed for hours at a time for his aggression, he developed a Pilonidal Cyst on his buttocks. We went to a surgeon and Brad was put on a month of Clindamycin 900mgs a day to clear up any infection before he had surgery. His cyst was much improved but then it started coming back, he had a huge meltdown, his surgery date was moved and he started another round of antibiotics and his behavior improved once again. We still did not know about PANS
 
In February 2016, I had to make one of the most horrible and terrifying decisions of my life; I sent my child to a residential school for children with disabilities that have endured some type of emotional trauma. I wasn't allowed to see him for 6 weeks due to their protocol but I was in touch with staff every night. During this time I researched and through networking and mutual friends I had heard about PANS. In April, I called the Psychiatrist at his school and asked her to test him for strep. Low and behold his titers were extremely elevated; he was immediately put on antibiotics for a month. This was our game changer, the residential, nursing and clinical staff along with the amazing psychiatrist who had heard of PANDAS were in complete shock how his demeanor and attitude changed within days. The staff wasn't getting attacked anymore, his panic was getting better, he stopped picking his head and his tics were going away. I found a PANDAS doctor and he has been Bradley's lifesaver.

Today
Bradley just turned 18 years old 2 weeks ago and has been coming home on the weekends since June. He is still at the residential school that we call "College" and he loves it. He has friends, is going to his classess, has chores, and is growing into an independent young man. He is learning trust people again and is building relationships with peers. We are weaning him off most of his medications and will continue to take long-term antibiotics. The staff is now very educated on PANDAS now and when he isn't feeling well they know what to do. I couldn't be more proud of him. He is the strongest young man I have ever known. He has truly gone through hell and back.
 
Never give up. Find the right Doctor and don't be afraid to fire them ones who don’t listen and who don’t dig deeper.

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