By Terrica Hendrix
On Feb. 6, 2008, Amanda McKee gave birth to a handsome, healthy baby boy.
Just like other babies, Landon loved to cuddle and was a genuinely happy baby. “He loved being outside and always enjoyed being around people. He had the cutest smile and the sweetest personality,” McKee, Dierks resident, began.
As time went on, she noticed several changes with Landon.
“We began making frequent trips to the doctor. He had one ear infection after another.” He also had strep throat back-to-back; all by the age of three. She said that her “sweet baby soon turned for the worst in what I assumed was a late onset of the ‘terrible twos.’ He would lay on the floor and have wild tantrums which would include repeatedly hitting his head against the floor. He would bite his hand and arm until he would bleed.”
McKee said she had “finally reached a breaking point” and took Landon to the doctor. She was expecting to be told that Landon was going through a phase. However, the doctor diagnosed Landon with Oppositional Defiant Disorder.
“We took the suggestions of a therapist and did the best we could to help Landon cope.” By the time Landon was six-years-old, he was diagnosed with ADHD.
“We tried for 2.5 years to treat the ADHD with five different drugs – none of which were fully successful.” She noticed that Landon’s handwriting began to decline and he began having “tics” that were “associated with Tourette’s [Syndrome] and would later have OCD added to his medical chart. At age seven, Landon began having suicidal thoughts leading his doctor to question Bipolar Disorder,” she explained. Frustrated and wanting answers, McKee said “at this point, I was done. I wanted answers instead of medications. I took Landon to a therapist in Benton where we learned about the possibility of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections).”
According to the National Institute of Mental Health, a child may be diagnosed with PANDAS when obsessive compulsive disorder and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or the symptoms of OCD or tic symptoms suddenly become worse following a strep infection. “The symptoms are usually dramatic, happen overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody or irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones. The strep bacteria are very ancient organisms that survive in the human host by hiding from the immune system as long as possible. It hides itself by putting molecules on its cell wall so that it looks nearly identical to molecules found on the child’s heart, joints, skin, and brain tissues. This hiding is called “molecular mimicry” and allows the strep bacteria to evade detection for a long time. However, the molecules on the strep bacteria are eventually recognized as foreign to the body and the child’s immune system reacts to them by producing antibodies. Because of the molecular mimicry by the bacteria, the immune system reacts not only to the strep molecules, but also to the human host molecules that were mimicked; antibodies system “attack” the mimicked molecules in the child’s own tissues,” according to National Institute of Mental Health.
She said that knowing the symptoms could lead to early diagnosis and the earlier treatment begins, the better the outcome.
A friend of McKee’s told her about a doctor in Claremore, Okla. who treated PANDAS. “We met with her for an official diagnosis and our suspicions were confirmed. Landon was, if fact, batting PANDAS, an autoimmune disorder that causes inflammation in the brain. We began treating with antibiotics, anti inflammatories, and psychiatric medications along with a plethora of other supplements.”
McKee, who is a teacher at De Queen Elementary School, said that when “we weren’t seeing the results that we had hoped to see, we started researching other PANDAS specialists. We decided to contact a highly recommended doctor in Dallas. At first, we didn’t see many improvements. Landon began having hallucinations, he had an increase in rage and aggression, he would experience numbness and tingling in his hands and feet, he would become physically violent.”
As time has gone on, Landon has experienced some improvements. However, if he is exposed to Strep, he could begin to have regressions.
Although Landon has seen improvements in the last few months,”our journey continues.”
October 9 is PANS/PANDAS awareness day. “We are desperately trying to bring more focus to this disorder. Children are often misdiagnosed and suffer through years of unnecessary and unsuccessful treatments,” she continued.
McKee said that, “Arkansas legislation does not require insurance companies to cover the medical expenses of this disorder because it is not medically recognized in our state. This means that treating this disorder is a very expensive process. So, after seven years of battling PANDAS – with five years being undiagnosed – we are hopeful that we will be able to make a difference in the medical community and that we can help other families fight this terrible disorder. It can cause debilitating effects on a child and it can cause emotional and financial strain on a family. Until our legislation is willing to recognize it and help our children recover, our fight continues.”
McKee, along with her husband John, feel strongly about helping others that are also on this journey. “We start by advising parents to look further into PANDAS or PANS if their child is being given multiple diagnosis.”
McKee advises parents that, “you have the right to question a diagnoses and to seek answers. You are your child’s first line of defense and their strongest advocate.”