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Author Bio: Susan Elizabeth Long is a Master prepare, licensed therapist as well as a board certified Psychiatric Nurse practitioner. She is the owner of The Rested Mind, LLC in Hingham Massachusetts which she founded in 2010 to serve the needs of Massachusetts children with mental health issues who live on the South Shore. The practice also has a relationship with the Archdiocese and provides services to abuse survivors. Although the practice was started for children, they see all ages up to age 65. Susan is certified in correctional mental health and works for CPS at The Plymouth County Sherriff’s Department where she addresses the daily mental health needs of the jailed inmates and prescribes their psychiatric medications, paying special attention to any military veterans as she appreciates their service and sacrifice.
As the summer comes to a close we are preparing to send the children back to the petri dish called school. Many children, usually from November to February, sometimes exhibit anxiety and sometimes it is normal, however, there are a subset of Children who’s anxiety is over the top, extreme and “stranger than most”. What is that about? Could it be medical?
It was only when I opened my practice here on the South Shore of Massachusetts that I experienced children with symptoms which were concerning and sometimes straight from a Steven King novel. I had a case in which a 12 y/o girl was brought to me after being hospitalized for psychotic symptoms. Her parents report that she came home from school one day anxious, rageful and adamant that her school teacher was trying to kill her. She could not be calmed and had a “total overnight personality change” per her mothers report.
She had been started on Zoloft and Abilify at the hospital but was administratively discharged because she was “uncooperative” with treatment. Administrative discharge of a child who is deemed psychotic? She had been seen by several doctors—psychiatric and medical but now she was now being evaluated by me for a third or fourth opinion. The family was not happy when they arrived but I begged them to give me a chance and tell me, one more time, from the beginning and leaving nothing out, how this had started.
Both parents agreed that she left for school” fine “ and came home “different”. They could not think of any precipitants. The child became upset with me when I asked outright about drugs, bullying and sexual abuse—but it had to be assessed. She denied all.
I had another female who came in with, what I can only describe as, a hiccup/bark.
She indicated that she could not stop doing it but her mother had noted that it did stop while she was sleeping so her pediatrician concluded that she was “attention seeking” and this was all behavioral.
It was suggested that there be some sort of consequence for the behavior and that she get therapy to find out the issues that were causing her to act out. After exhaustive questioning there seemed to be no precipitant and it appeared to have begun, out of the blue, 3 weeks prior.
Now I don’t want you to start thinking this is a female thing. I am only trying to give you a sampling of interesting presentations.
So, a 14 y/o male came to see me with obsessive compulsive behaviors which were starting to consume him and get in the way of enjoying life. He had to shower in a certain way and have his towel and clothing handed to him but his parents could only touch the edges. It was important that it be handed to him as they held it up over their heads and if done incorrectly the ritual had to start over, including the showering.
It went on to progress to a point where he would not allow his mother to touch him nor could he touch door knobs as he feared they were contaminated and contact with them would harm him in some way. His mother reports that his symptoms had started about 2 years prior but had progressed from small inconveniences to debilitating fears over time.
All the above children were deemed to be suitable for mental health treatment but with an extensive interview, family medical assessment and ruling out trauma–all are technically medical.
The National Institute of Mental Health (NIMH) has recently started looking into it, with special interest in the Duxbury MA area, which has a disproportionate cluster of children presenting with the disorder.
Children with PANDAS suddenly develop obsessive-compulsive thoughts and behaviors after strep throat (streptococcal infection) and some also think it can be associated with a tic bite. It is thought that within approximately 48 hours, these symptoms will have reached full-scale intensity.
Past research suggests that PANDAS symptoms are caused by the body’s immune response to the infection. The immune system makes antibodies to fight the infection and they are thought to cross the blood-brain barrier affecting the brains of children causing the symptoms. The OCD and tic symptoms can also be accompanied by a variety of other neuropsychiatric symptoms, including separation anxiety, panic attacks, irritability, extreme mood swings, temper tantrums, and immature behaviors (the child may revert back to baby talk), hyperactivity, problems with attention and concentration, handwriting changes, and problems with math, reading and other school subjects.
I always advise parents that if something happens “suddenly”, think medical first. It is rare that someone turns schizophrenic or bipolar “overnight”. Symptoms come on slowly, intensify, and do not catch teachers and parents by surprise.
Now, there is an issue with parents who say the symptoms came on over time and there was no “sudden onset”. However, it is possible that they missed the onset as it may have happened when the child was young or ill and was thought to be “a phase” or behavioral issue related to something else. In these instances, the time of onset is not known exactly or was dismissed by the medical community as in the cases above.
The medical community has often been hesitant to treat PANDAS as most practitioners have not heard of the disorder and antibiotics and/or Intravenous immunoglobulin ( IVIG ) are utilized in treatment, which have their own issues and side effects. In their defense, there are no set or agreed upon guidelines for assessment and treatment.
Doctors must also depend on parents to give an accurate account of the symptoms, family history and onset. A search of medical records may shed light on when parents first approached their pediatricians or mentioned changes in passing. Blood work should be done to check for strep infections, as well as Lyme disease, as tics can be carriers of a host of things and are prevalent on the South Shore of MA.
This is an extremely limited overview and brief discussion of one of the current mental health issues on the South Shore of MA but parents should be aware of PANDAS as we think there are children being treated with antipsychotics and antianxiety medication when it is not purely a psychiatric issue. Symptoms usually come to light during the school year when children are in close contact with one another and strep and flu season are running wild. The school Petri dish is laden with all sorts of interesting things. For more information on PANDAS, please look at the links below which will start you down the right path, if this applies to you or a loved one.
Massachusetts Bill for recognition and treatment of the disorder https://malegislature.gov/Bills/188/House/H984
NIMH Clinical Trial Survey:
PANDAS parents Network: for updated information, support and parent events
Susan Long, PMHNP is the owner and a psychiatric nurse practitioner at The Rested Mind in Hingham, MA which opened in 2010. Her specialty is children’s psychopharmacology, Autism spectrum disorders and Veteran’s mental health but treats most disorders and patients up to age 65. The above opinions are her own and should be researched and discussed with your pediatrician or mental health provider. She looks forward to your feedback and request for blogs on a specific mental health issue.
Susan Elizabeth Long, MA, LMHC, MBA, RN, MS, PMHNP, CCHP, APRN-BC
Susan Elizabeth Long is a Master prepare, licensed therapist as well as a board certified Psychiatric Nurse practitioner. She is the owner of The Rested Mind, LLC in Hingham Massachusetts which she founded in 2010 to serve the needs of Massachusetts children with mental health issues who live on the South Shore. The practice also has a relationship with the Archdiocese and provides services to abuse survivors. Although the practice was started for children, they see all ages up to age 65. Susan is certified in correctional mental health and works for CPS at The Plymouth County Sherriff’s Department where she addresses the daily mental health needs of the jailed inmates and prescribes their psychiatric medications, paying special attention to any military veterans as she appreciates their service and sacrifice.
She began working at the CPS/Plymouth County Sherriff’s Department in 2011 and is there to present day. Prior to that, she worked in the juvenile justice system at The Department of Youth Services– Metro Boston Campus from 2007 to 2012 providing psychiatric services to incarcerated youth and adolescents. Her background includes working as a psychiatric therapist, assessing mental health crises in the Boston Medical Center, Brockton Hospital and Metro-West Medical emergency rooms and the crisis teams. She continues to share her knowledge as a clinical site preceptor for local colleges and universities, training their psychiatric nurse practitioner students in the last year of their education.
Susan has a Bachelors in Nursing and Biology, Master’s degree in Psychology, a Masters of Business Administration and a Master of Science in Nursing from Regis College in Weston Massachusetts. She gradated with honors and was inducted into the Sigma Theta Tau honor Society of Nursing.
Her areas of specialty are Child Psychiatry, military mental health and Correctional mental health (juvenile and adult).