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Understanding the ‘Pandas’ disorder

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When you read the word “Pandas,” you probably envisioned a cute, cuddly animal native to China. Unfortunately, there is nothing cute or cuddly about the acronym, which stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. The disorder was first identified in an article by Dr. Susan E. Swedo and her team at the National Institute of Mental Health in 1998.

According to National Institutes of Health, a child with this disorder experiences emotional symptoms such as irritability, separation anxiety, attention deficit hyperactivity disorder symptoms, sleep disturbances, bed wetting, fine motor changes, joint pain, concentration difficulties, loss of academic abilities, and developmental regression. In relation to the emotional symptoms, Swedo has been quoted as saying, “Some families have told us that their children seem possessed.”

Pandas is considered an autoimmune or autoinflammatory disease in response to the strep infection. Streptococcus, the bacteria that causes strep throat, is also linked to other autoimmune diseases such as rheumatic fever and scarlet fever. In the case of Pandas, the person’s immune system attacks brain cells, causing obsessive-compulsive disorder, tics, and other emotional symptoms. It is a rare condition with only 2,000 children diagnosed, although it’s possible some children have it and are not properly identified. It is unknown why only some children develop this disorder.

The treatment depends on the severity of the disease. In mild cases, antibiotics are prescribed to treat the strep infection. In most cases, this will get rid of the obsessive-compulsive disorder or other symptoms. In more serve cases children are given a combination of antibiotics along with immunomodulatory therapy, such as an intravenous immunoglobulin or an oral steroid.

There has been debate among doctors and researchers whether Pandas is even a real disorder. Alison Motluk wrote an article “A Feverish Debate,” which details the controversy surrounding the diagnosis. Motluck wrote, “Skeptics argued that these findings could be coincidental: the children just happened to have strep when the behavioral symptoms appeared.” She also notes that a research study was conducted in 2002 found, “there was no evidence that strep uniquely intensified the symptoms in Pandas kids.” James Leckman, a psychiatrist at Yale University, questioned the validity of this study in regards to the subjects and control group.

I interviewed Ella (names changed for privacy), a 12-year-old girl who was diagnosed with Pandas at age 8. Her mother, Christine, also answered questions regarding their experience.

Cheryl Maguire: Before you were diagnosed, did you know about Pandas?

Christine and Ella: No

CM: How old were you when you first experiencing symptoms?

Ella: I don’t really remember, I think I was in kindergarten.

Christine: She was around 5 years old when she first started getting strep throat. She would get strep throat and then go on antibiotics. Then the strep throat would come back again once she was done with the antibiotics. Sometimes we didn’t even know she had strep since she didn’t have a sore throat. Her only symptoms were a headache and stomach ache.

CM: What were your Pandas symptoms?

Ella: I don’t remember much about it.

Christine: Ella had a lot of obsessive-compulsive disorder symptoms. She had to wash her hands all the time. She washed her hands so much they would bleed.

Ella: And I used hand sanitizer a lot.

Christine: At bedtime, everything had to be in order. The closet door had to be the same as when she left it before. The comforter on the bed had to be the same position. All her toys and books had to be in order. At night she would also have temper tantrums that didn’t seem to be set off by anything. It was an extreme rage. One time she even tried to push me down the stairs.

CM: How long did it take to receive a Pandas diagnoses?

Christine: It took at least two years until I first hear of the diagnosis of Pandas. The nurse at the pediatrician’s office was the first person to mention it as a possibility. My pediatrician at the time did not think Pandas was a real disorder though. He said, “people will try to make money off of anything.” He acted like I was crazy when I suggested it. We even started counseling for Ella since the pediatrician didn’t think her behaviors were related to the strep throat.

When she was 8 years old, we ended up going to an Ear, Nose, Throat doctor who didn’t know much about Pandas but also didn’t act like I was crazy for suggesting it like my pediatrician did. The doctor recommended that she get her tonsils out, and then she only got strep once after the tonsils were removed.

Around this time we also switched to a new pediatrician who diagnosed her with Pandas and was supportive of her treatment. When she got strep after having her tonsils out the pediatrician put her on antibiotics for a month.

CM: What was the treatment?

Christine: When Ella took the antibiotics her Pandas symptoms went away. The problem was before she got her tonsils out she kept getting strep throat and a lot of times we didn’t even know she had strep throat so the symptoms would continue until she had the antibiotics.

CM: Do you still experience symptoms?

Christine and Ella: No

CM: What advice would you offer for other families?

Christine: This experience was life-changing for us as a family. It was upsetting when we didn’t know she had Pandas, and then when we thought she might have it our pediatrician at the time didn’t believe in the disorder. It was difficult to have to watch your child deal with mental health issues.

I would say to other families to trust your gut when you think there is something wrong. I also brought someone with me to our first pediatrician (who didn’t believe in the disorder) for support. I found an advocacy group which was really helpful in answering my questions called New England PANS/PANDAS Association.

Originally published on Signature Moms.

Cheryl Maguire holds a Master of Counseling Psychology degree. She is married and is the mother of twins and a daughter. Her writing has been published in Parents Magazine, Upworthy, “Chicken Soup for the Soul: Count Your Blessings,” and Your Teen Magazine. You can find her at Twitter @CherylMaguire05

Posted 12:00 am, December 30, 2018
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