As a parent, we want what is best for our children and we ensure that they are happy and healthy to the best of our ability. We go out of our way to give them the best things that we possibly can in life but from time to time, something may happen that is beyond our control. We may recognize it in some cases but in others, it may be hiding beneath the surface.
One of the issues that most parents are familiar with is strep. In fact, many students will end up with strep throat because it goes around at school and when they have it, we tend to take the same steps to treat it. The child is taken to the doctor, a test is performed and then antibiotics are given to the child. We would like to think that that is the end of the story but it is not always the case. Grace Harper was a well-adjusted little girl but overnight, she started dealing with outbursts of rage. It only got worse and for the next two years, nobody understood why.
As it turns out, it came from a rare disease associated with strep infections. Every parent should be aware of this possible reaction to a common childhood illness.
Most parents recognize the signs of strep throat. You may not know anything about a type of infection that is caused by stress, known as PANDAS. The symptoms of the disease are quite unusual and it causes psychiatric symptoms that can be terrifying to the parent and the child alike. It is often misdiagnosed as a mental illness, and that was the case with the Harper family.
Grace, their daughter, was articulate and creative but suddenly, she became a “raging timebomb.” She would give way to angry outbursts and it was totally against her normal behavior.
“They could be four to five hours screaming rages on the floor kicking and screaming. She hit the doctor once,” her mom, Amber, recalls. “She was totally blowing up.”
It came as a shock to the entire family. When it began, it caused high fevers and they showed up approximately once a month. Each time the fever occurred, compulsive behaviors would not be far behind. For example, Grace would organize her belongings. Each of her crayons would have to go into a specific area, and the same was true of her shoes and her toys. When something wasn’t organized, she lost it.
“I organize them because when they aren’t organized, I get upset,” little Grace explained.
Two years worth of hospital visits and consultations with many doctors took place. They finally discovered that her symptoms were from PANDAS and her story is not unique.
A six-year-old girl named Madeleine Greenstein had a similar problem. She had three strep infections in three months and her friendly demeanor suddenly turned anxious and fearful.
“I think about scary stuff and then I get scared,” Madeline explained.
Madeleine’s behavior resulted from PANDAS, the same rare infection that affected grace.
About PANDAS
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. When a child comes down with strep, their immune system creates antibodies to fight the infection. When a child has PANDAS, the antibodies turn on the part of the brain that controls behavior. It results in a sudden onset of unusual behaviors, including separation anxiety, OCD, bedwetting, anorexia, tics or it may even affect motor skills and writing.
“The key is, the psychiatric symptoms just start overnight,” said Michael A. Jenike, MD Professor of Psychiatry at Harvard Medical School.
The symptoms are often mistaken for a mental illness and research is only now beginning to emerge for PANDAS. Doctors had no idea what was going on for many years.
“These parents get so frustrated. They’re like, ‘Where’d my child go?’,” said Dr. Amy Darter, the Medical Director at the Oklahoma Institute of Allergy, Asthma, Immunology. “An average, normal, everyday infection that humans are exposed to, in some people who are prone, can trigger this sort of response. You see a normal child. Then, an infection. And then you see a child you don’t recognize as your own anymore. It hits that quickly, and it can be very profound.”
The disease is rare and it is caused by strep. There is a documentary known as “My Kid Is Not Crazy” and it covers the subject. When you see the footage of the affected children, it is enough to break your heart. That is why many parents and doctors are interested in raising awareness.
Is There a Treatment?
There is good news, and that is the fact that a treatment is available.
“After you take care of this abnormal immune response, you can get these kids back,” Dr. Darter said.
Strep is the underlying cause so additional antibiotics will usually be enough to fix it. Identifying PANDAS is the key so the proper antibiotics can be prescribed.
This is really fantastic news for families who are dealing with this issue.
“We finally have an answer,” said Amber Harper. “There’s a road to recovery. We finally have a path. It’s a long road. It’s not an easy road. But we have an answer. We have a plan and we can walk that road.”
Grace’s parents were afraid that she would have to repeat the first grade because of her illness. Thanks to a treatment of antibiotics, she is back on track.
Raising Awareness of PANDAS
Since doctors are only beginning to recognize this condition, these stories are crucial for raising awareness. You can help by sharing the story.
If your child experiences odd behavior after a strep infection, be sure to ask your doctor about PANDAS. The symptoms may vary from one child to another, but here are a few to watch out for.
* OCD (Obsessive/Compulsive Disorder)
* Tics
* Anxiety
* Depression
* Irritability and aggression
* Behavioral and Developmental Regression
* Changes in handwriting
* Separation Anxiety
* Hyperactivity
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