PANDAS/PANS – What’s the Story?: Children, Parents and Practitioners Rising to the Challenge
Aug 01, 2015 03:07AM
● By Lisa Wolk-Kilion
You kiss your child goodnight and she smiles at you before cuddling into her pillow. As she’s been doing for quite some time, she sleeps though the night. But in the morning, a completely different child emerges — one you’ve never before seen or hugged or held. Her personality has been replaced with rage, tics, intrusive thoughts, impulsivity, defiance and separation anxiety.
“If your child has an acute onset of tics, OCD, anxiety, aggression, regression or any acute onset of somatic symptoms like sleep problems, urinary changes, infantile behavior or handwriting changes, think about PANDAS/PANS,” explains Nancy O’Hara, M.D., of Wilton.
PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcus) is the consequence of an untreated strep infection; it is likened to rheumatic fever of the brain. PANS (pediatric acute-onset neuropsychiatric syndrome) is the result of an assortment of infections including, but not limited to, strep, flu, Coxsackie, Lyme disease and pneumonia. Although the word “pediatric” is in both names, it is surmised that the disease is not merely a childhood one as there have been cases of adult onset. The encephalitic-type illness is brought on by an infection, resulting in antibodies that barrage the basal ganglia. Although PANDAS/PANS is not Tourette’s or obsessive compulsive disorder (OCD), it can include symptoms of both.
Years ago, the acute onset of PANS would have landed children in psychiatric hospitals. Even now, many children with PANS are misdiagnosed as having depression, bipolar disorder, ADHD, ODD, urinary tract issues or Tourette’s syndrome. They are placed on psychiatric medications that can obscure and even exacerbate symptoms while the underlying infection remains untreated. A greater number of doctors now know that PANDAS/PANS exists since 2013, when the Journal of Child and Adolescent Psychopharmacology published a consensus statement on PANS diagnostic guidelines. However, too few pediatricians know how to treat it effectively and many insist, without scientific evidence, that PANS is over-diagnosed.
“Most of the time, I think it is the parent(s) who figured it out. By the time they do, their child has most likely had multiple psychiatric diagnoses and multiple failed trials of psychiatric meds. If a parent has a feeling in his or her gut that something isn’t right, they are usually correct. More education is needed for pediatricians, who could be instrumental in recognizing this quickly. If they do, parents can avoid years of stress, heartache and frustration, and kids will avoid being misdiagnosed and can go on doing what kids do. The longer you wait for a proper diagnosis, the more this disorder takes away from a normal life — however you define ‘normal’,” says Melissa Machon Giampietro, a parent of a child with PANS.
PANS/PANDAS continues to be a clinical diagnosis. Doctors examine blood titers for antibodies to different infections, including strep. An Igenex Western Blot can help determine if Lyme disease is present while other tests can detect additional tick-borne diseases. Dr. Madeline Cunningham has come up with The Cunningham Panel by Moleculara Labs (MoleculeraLabs.com); this test measures antibodies as well as enzymes that regulate neurotransmitters affected by PANS/PANDAS.
Treatments include antibiotics (sometimes given long term), steroids (if Lyme is not the underlying infection), plasma infusions (high-dose IVIG) and, very occasionally, plasmapheresis. It can also help to have tonsils removed. “The scariest thing with my son’s PANDAS was his personality change. One IVIG, one tonsillectomy and two years of antibiotics brought my son back,” writes Gunilla Gerland of Sweden.
In addition, holistic methods such as homeopathy are being used to treat the PANS symptoms. If Lyme disease is found, treatments are more complicated and there are often accompanying co-infections that can result in additional symptoms. Each child reacts differently to treatments, necessitating a trial and error approach to be taken.
“The problem remains; even if we do get a ‘diagnosis’, there still isn’t any real ‘cure’,” says Josette Stone, a parent of a child with PANS. “Each child responds so differently to so many different treatments. It could take years before you find the right treatment for your child.”
Once the autoimmune system is damaged, any germs can trigger a PANS flare. “PANS, like most autoimmune diseases, doesn’t play fair; it’s a trickster,” explains Gabriella True, president of the New England PANS/PANDAS Association. “If your child hasn’t been diagnosed with PANS but has already been diagnosed with one or more of the diagnostic criteria and suddenly gets worse and develops a new symptom that falls under the criteria, then keep pushing for more answers because the answer might be PANS. It also tricks you into thinking your child’s triggers will always be the same but one day your kid is having another flare but there are no signs of the usual suspects. So you have to figure out what the new trigger is and how to treat it.”
It can be challenging to locate specialists who treat PANS and PANDAS. Many parents have discovered social media groups to be a source of information and have learned of knowledgeable providers through these closed support groups. Not all providers take insurance.
In addition to working with a medical practitioner or holistic healer, parents sometimes engage cognitive behavior therapists once the infection is under control. They also utilize other types of therapies, from occupational therapy to biofeedback, depending upon the lingering symptoms. Oftentimes, parents need to educate different providers about PANS. It is also important to note that cognitive behavior therapy will not help much when the child’s brain is inflamed; the infections need to be brought under control first.
The lack of information can be life-threatening. Some children see immediate improvement once given the correct treatment. But if a child continues to have flare-ups, it can be difficult to eradicate the PANS/PANDAS. “For 22 months, my daughter was nearly homebound and having daily panic attacks,” says Amy Infanti. “One 30-day course of the correct antibiotic brought her back 90 percent to baseline. The cure was as dramatic as the onset. We are still holding our breath 15 months later, but feel very blessed to have found the appropriate treatment after struggling so long.”
Many parents have reported that their child seems “normal” all day, only to fall apart when they get home. This is indicative of the control that these children are exerting, rather than a loss of control. Children will use energy to appear normal in public, holding back tics, rages and separation anxiety but, when fatigued, will release their pent-up symptoms in a safe place.
PANS/PANDAS does not disappear when the child enters the classroom. If the infections are left untreated, these symptoms will emerge at school. In addition, children with PANS can experience any or all of the following issues that affect academics: handwriting decline, math decline (including forgetting previously learned math facts), attention problems, OCD, sensory issues, tics and memory issues. A child who is working diligently to control tics, urinary incontinence and other symptoms will have a difficult time attending to lessons. It is strongly suggested that parents acquire a 504 Plan through the school so that all teachers are alerted to the fact that this student is ill. A 504 Plan or an IEP can help to level “the playing field” for the child who is struggling with obstacles that other students do not have. Additionally, under a 504 Plan, the school can be instructed to alert parents if there is a strep outbreak or other germs in the classroom, or if new symptoms emerge in school. It is crucial for educators to understand that symptoms are not behavioral but are indicative of a medical illness the child is fighting. The last thing a child with PANS needs is to be punished for one of his symptoms.
Emily Klein, an educator and parent in Rhode Island, argues in favor of instructing school nurses. “Having a school nurse and special education director who are knowledgeable about PANDAS plus teachers who are willing to learn about it has been a tremendous asset to maintaining my son in an inclusive learning environment with special education supports. We are seeing school nurse associations hold conferences to educate themselves on PANDAS and PANS. I hope that sweeps the country. Our school nurse even trained a student teacher who would be in my son’s class. I never would have thought to ask her to do so, and I was most grateful when she let me know,” she says.
Although PANS/PANDAS is a considered a medical disease, it is an illness that affects the brain, resulting in symptoms that appear psychiatric. Often extended families, doctors, schools and other groups have no comprehension of the issues that the child and his family face on a daily basis. For this reason, it is extremely helpful to find a support group, whether it is online or in person. It is important for children to also know that they are not alone, that PANS has stricken many intelligent, creative kids who want nothing more than to be normal again.
It is also suggested to educate other members of the extended family. Children with PANS frequently lose friendships as well as drop out of activities and sports. New sensory issues can make it overwhelming for the child to simply go to the supermarket. While the parents’ world flips over, so does that of the child. The entire family, healthy siblings included, needs support.
Some children, such as Amy Infanti’s daughter, and Sammy in Beth Maloney’s book, Saving Sammy: The Boy Who Caught OCD, do recover completely. Other children show degrees of recovery, succumbing to symptoms when exposed to germs. Ongoing medical treatment continues to be integral. Research into the immunoneurological system is currently being conducted in different areas of the country. Dr. Susan Swedo, chief of pediatrics and developmental neuroscience at the National Institute of Mental Health and the researcher who identified PANDAS in the 1990s, continues to study the disorder. PANDAS/PANS conferences are occasionally held throughout the United States as well as in Italy.
“No one can deny that our children’s health changes right before our eyes. Regardless of the controversies surrounding the infections that may cause PANS/PANDAS, now is the time to be doing all we can do to treat these kids,” says Wendy Nawara, president of PANDAS/PANS Advocacy and Support. “There is definitely hope for those who are recognized, diagnosed and treated expeditiously.”
Lisa Wolk-Kilion is a wife and a mother of two kids. She holds a BA degree in Psychology, an MBA in finance and an MS in Education. Lisa has been an educator for the past 18 years in New York State. She is a blogger and moderator of several PANDAS support groups on Facebook, including one to help families from the tri-state area. Connect with her at PANSlife.com.