During the summer of 2009, after divorcing my husband, my son and I moved into our new home. Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer. My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses.
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed. TJ was attending zoo camp as he had several times previously. When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned. I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”. TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary. Friday, my good friend agreed to watch TJ while I had some appointments. He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch.
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.
Before diagnosis, Ke'Ala and our family saw many doctors and was given many possible diagnosis before a doctor finally correctly diagnosed and successfully treated her. I will not go into every detail of every mistake made along the way due to the lack of education and awareness of the doctors. But below is a quick listing of what we went through before her recovery.
One lab visit in week seven of her hospitalization, requested by unconvinced parents and a pediatrician that had tested and treated PANDAS before. The rest is our journey out of the special kind of hell that too many families of children that have been misdiagnosed with mental illness are suffering.
Ke’Ala’s PANDAS Story
Last winter, our daughter, Ke’ala, at eleven years old, became very ill, quite suddenly with psychiatric symptoms that went misdiagnosed and heavily medicated to the point of catatonia and suicide. Now, as we relive that ungodly winter, with all of the anniversaries, we are horrified by what she endured at the hands of people that we entrusted to help her.
It is imperative that the medical community be educated about PANDAS/PANS so that when a child presents with psychiatric symptoms, they FIRST rule out infection-based causes. We have a moral obligation to all children that we ensure this happens so that no child needlessly endures a world of pain and fear so deep, and the sense of helplessness and terror that our daughter did.
After many years of Gracie being too embarrassed to have her story told, she has agreed that if her story helps one child not suffer what she has endured, it is worth it. So...here is her PANDAS story...
As I tell her story, I will place in when she had an infection, but note that I only discovered the connection many years later by placing her medical records on a time line with photos and other memorabilia.
Started with a Stutter
Gracie was the perfect baby and toddler. I mean perfect! She never cried, always smiled, and took in everything around her with joy. She talked at 6 months, walked right on time, learned her letters by 1 years old, spoke 10 word sentences by 1 years old, and seemed to learn anything that came her way easily. She was an independent kid who never hesitated to go into new situations without me by her side. At 18 months old, she got a strep throat. She soon began to stutter, repeating sounds, words, and parts of sentences over and over. It was exhausting to try and wait for her to get a thought out. She began speech therapy. It did little to help, but her stuttering would just disappear almost over night. We would joke and call it her 'bumpies'. We later realized that Gracie's bumpies correlated with her getting sick. Her bumpies would start, and I would say, "Ut'O, your bumpies are back. You will be sick within 2 days." And sure enough...she was. This went on for years.
Sudden Separation Anxiety
At 3 1/2 years old, she all of a sudden did not want me to leave her at preschool or gymnastics. She clung to me where she was once her happiest and most excited to go. I chalked it up to normal toddler stuff. It did not last that long, but would come and go after a period of sickness. Life was pretty normal for a few years with small bouts of red-flag issues.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!