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ARTICLE

Implications for Advanced
Practice Nurses When
Pediatric Autoimmune
Neuropsychiatric Disorders
Associated With
Streptococcal Infections
(PANDAS) Is Suspected: A
Qualitative Study
Molly McClelland, PhD, RN, Mary-Margaret Crombez, MEd,
Catherine Crombez, BSc, Catherine Wenz, MSN, RN, FNP-BC,
Margaret Lisius, MSW, Amanda Mattia, BSN, RN, & Suzana Marku, BSN, RN

ABSTRACT in children. Currently no definitive diagnostic or treatment
Introduction: Pediatric autoimmune neuropsychiatric disor- modalities exist, which has led to misdiagnoses, ineffective
der associated with streptococcal infections (PANDAS) is a treatments, and delayed care.
relatively new but controversial diagnosis affecting hundreds Methods: A qualitative study was conducted that included 60
of children and their families. It is generally thought to be an families with at least one child diagnosed with PANDAS. The
autoimmune disorder resulting from a streptococcal infec- purpose was to explore how families experience the disor-
tion that causes significant and bizarre behavioral changes der and what nurses can do to provide effective care.

Molly McClelland, Associate Professor of Nursing, College of Suzana Marku, Critical Care Staff Nurse, St. Joseph Mercy
Health Professions, University of Detroit Mercy, Detroit, MI. Oakland, Pontiac, MI.
Mary-Margaret Crombez, Infant & Child Mental Health Specialist, Conflicts of interest: None to report.
William Beaumont Hospital, Royal Oak, MI, and ?, Livonia Public
Correspondence: Molly McClelland, PhD, RN, College of Health
Schools, Livonia, MI.
Professions, University of Detroit Mercy, 4001 W McNichols Rd,
Catherine Crombez, Undergraduate Student, Madonna Detroit, MI 48221; e-mail: mcclelml@udmercy.edu.
University, Livonia, MI.
0891-5245/$36.00
Catherine Wenz, Family Nurse Practitioner, Covenant
Copyright Q 2015 by the National Association of Pediatric
Community Care Newton Clinic, Detroit, MI.
Nurse Practitioners. Published by Elsevier Inc. All rights
Margaret Lisius, Redford, MI. reserved.
Amanda Mattia, Critical Care Staff Nurse, Critical Care, Beaumont Published online April 18, 2015.
Health Systems, Troy, MI.
http://dx.doi.org/10.1016/j.pedhc.2015.03.005

442 Volume 29  Number 5 Journal of Pediatric Health Care

additional studies and time will be required the knowledge relating to PANDAS.. in 2013 the J Pediatr Health Care. urinary the newly evolving problem and referred to the spectrum symptoms. and inconsistencies the complexity. nursing care. 2012. 2014). 2003). streptococcal infections (Morris-Berry et al. especially when the science is not yet established. whom symptoms Thompson. primary central nervous system vasculitis. Fattizzo. However. (2015) 29. families. Changes that have with onset and symptoms similar to PANDAS but been reported include deteriorating grades in school. no nursing research has Discussion: Results from this study suggest that more infor. a subset of children who have obsessive compulsive 2014). Another author reviewing the disorder acknowledged lent outbursts. 2014. referred to the disorder as acute disseminated unusual or aggressive behaviors... defiance. 442-452. inconclusive or still being debated. been conducted to contribute to evidence-based knowl- mation is needed to better understand this challenging phe. 2013). vio. self-injury behaviors. One Measures article (O’Connor & Speros. Singer. 2013. other researchers have claimed that often suspected in not enough evidence exists to support a correlation children who exhibit having pharyngeal between neuropsychiatric syndromes and abrupt. postinfective autoimmune central ner- personality. Insufficient or Inappropriate Diagnostic tive were identified. 2009). self-induced food restrictions. No specific www. deteriorating acute neuropsychiatric syndrome (Singer et al. autoimmune disorders. The medical literature nomenon from both medical and nursing perspectives. 2013. first Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) Consensus Conference was held to establish evaluation and diagnostic criteria and urge more KEY WORDS research to better understand this elusive and new area PANDAS. change in Stewart. Pollard. general practice guidelines. The acute onset of the of similar disorders as pediatric inflammatory brain dis- aforementioned behaviors in a previously healthy child eases.jpedhc. emotional outbursts and lability. most of which is either study also reaffirms the importance of practicing the art of nursing. & or write. and members being carriers of GABHS (Macerollo & Smith & Goldman. loss of ability to read encephalomyelitis (Muir. & Rigante. Vitaliti et al. Although these articles were useful in that they provided views. LITERATURE REVIEW Only two articles about PANDAS from a nursing perspec. Wolf. Morris-Berry. Tan. itative research Pediatric autoimmune neuropsychiatric disorder Discrepancies in the Name and Diagnostic associated with streptococcal infections (PANDAS) is Criteria a relatively new diagnosis. and infections. Esposito. as well as family Health. three themes were identified: fear. 2013.Results: Using paradigmatic analysis of transcribed inter. consensus has not yet been reached regarding disorder (OCD) and/ the name and presentation criteria of the disorder or tic disorders and in PANDAS is often (Macerollo & Martino. autoimmune encephalitis (Van Mater. Bianchini. 2008) was a case study pre. Very little is known about One of the frustrations that children and their families the cause of this disorder. 2015b. challenging behaviors Schrag et al.. Most current medical acronym PANDAS was first used in 1998 (Swedo et al. 2007) or childhood rituals. Some researchers coccal infections children who agree that a link exists between the sudden onset of (Murphy et al. 2012). 2014). (Muir et al. definitions define PANDAS as the term used to describe 1998. Vitaliti et al. McKenney. unusual. neither was a research article. and unusual presentation of in the literature. Gilbert. 2013. this study was initiated to contribute to the disorder. Other practitioners reported cases after having pharyngeal infections. and a description of PANDAS and included case studies and not being heard. PANDAS is behaviors after 2014).org September/October 2015 443 . 2014). and family members. excessive or unusual bed time vous system disorder (Wild & Tabrizi. & Singer. 2013.. changes in personal hygiene. autoimmune-mediated inflammatory brain dis- has significant implications for the child and his or her eases. Gao. new-onset separation anxiety. exhibit abrupt. or how with suspected PANDAS face is that although the to provide effective treatments. Baggi.. frustration. before practitioners are able to agree on the name and conditions of the disorder now known as PANDAS. and the other was from a school brain imaging studies in suspected PANDAS cases nurse perspective on the disorder (O’Rourke. Most studies report unremarkable results of a patient with PANDAS. variability. Connolly. 2012. qual- of medicine (Chang et al. Because of insufficient information. 2015).. and nightmares. However. how to diagnose it. unusual.. Rhee & Cameron.. No specific diagnostic tool exists to confirm a PANDAS sented by a pediatric nurse practitioner (PNP) regarding diagnosis. challenging Martino. edge regarding this disorder. The includes some PANDAS research.. symptoms and a recent group A beta-hemolytic strepto- National Institutes of coccus (GABHS) infection in the child. 2012). Vitaliti et al. Because of discrepancy in current knowledge. Mink worsen after strepto- suspected in & Kurlan.

Used for prophylaxis of streptococcal infections. ANA should be obtained if inflammatory Erythrocyte sedimentation rate markers are also elevated. PANS = Pediatric Acute-onset Neuropsychiatric Syndrome. amoxicillin. petechiae. 750 mg per IV infusion  2. multiple comorbidities are common. positive neurologic frequency. sleep disturbances). tapering may be 60 mg by mouth twice a day  4 weeks then a 10% reduction challenging with return of symptom. 500 mg to swallow. IVIG = intra- venous gamma globulin. including suggestive of PANDAS. ANA = antinuclear antibody. can contribute to infections conjunction with steroids to control symptoms) Risperidone. stroke. hyperalert child. irritability. neuropsychiatric disorders. may also consider treating twice a day. divalproex 100-500 mg. antibodies are useful in identifying nonspecific pected PANDAS is contested as a definitive diagnostic inflammation and autoimmune reactions common to tool (Singer. and bipolar-type symptoms Antibiotics (often for several weeks at a time): cefadroxil. 2010). A combina. PANDAS = Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.5-2 g/kg Risk of life-threatening hemolytic reactions Plasma exchange. anti-DNase B = antideoxyribonuclease B titers.5 volume exchange for 3 consecutive days Also known as plasmapheresis Therapeutic plasma apheresis Shown to be more effective than IVIG in some studies. a variety of disorders. & Lask. TABLE 1. serum biological marker to aid in the diagnosis has tion of serologic markers such as erythrocyte sedimen- been identified (Vincenzi. conditions (such as Sydenham chorea). Throat swabs. obtain ceruloplasmin and copper urine Throat culture test if liver enzymes are also elevated ASO and anti-DNase B ANA Antiphospholipid antibody Ceruloplasmin 24-hour urine copper test Treatments (combinations are typically used for optimal outcomes) Notes Methylprednisone 1000 mg once a day  3 days (with slow taper of Reduction of inflammatory process in brain. cefdinir. and chills Mycophenolate mofetil. a second round of high-dose every 3 days) steroids may be required if worsening symptoms return IVIG 1. ASO = antistreptolysin O. rigors. OCD anxiety. 15 mg once a day (can be used in Immunosuppressant. immunodeficiency disorders. 14 mg/kg bid twice a day (600 mg max) oral family members prophylactically Nonsteroidal anti-inflammatory drugs Risk for bleeding and gastric ulcers Cognitive behavioral therapy Used to address anxiety and mood disorders Note. some patients with PANDAS Consider a genetic evaluation have a greater propensity to develop infections. OCD = obsessive-compulsive disorder. O’Toole. dramatic onset of symptoms. antistreptococcal 444 Volume 29  Number 5 Journal of Pediatric Health Care .25-4 mg oral Atypical antipsychotic medication Valproic acid. 1. 2005). Genetic components may be present increased rates of OCD and tic disorders are noted among first-degree relatives of patients with PANDAS Medical history with physical and mental examination Identification of two or more signs/symptoms (from list in left column) Assess for sudden. and antineuronal The presence of autoantibodies in children with sus. common adverse effects include fever. hypothesized to remove autoantibodies that may be contributing to symptoms Rituximab. somatic signs and symptoms (bed wetting. oral routes are sufficient. if ANA is elevated. migraines. sensory/motor abnormalities. mental examination may and deteriorating school performance reveal a terrified. This list is not exhaustive (see the reference list). IV = intravenous. C-reactive protein. findings must be differentiated from other potential neurologic developmental regression. Yoon & Williams. Sample of diagnostic tests and treatments used and reported by health care providers when PANDAS is suspected* Diagnostic procedures and treatments Notes Family history PANDAS is common among siblings. self-determined food restrictions are common Laboratory studies ASO and anti-DNase B elevations are indicative of recent group A Complete blood cell count streptococci infection. *Treatments were reported in published case studies of patients with suspected PANS and/or PANDAS. maternal autoimmune Determine history of familial neurologic disorders. autoimmune disorders are common in children with PANDAS. Hong. clotting Urinalysis disorders or livedo rash. emotional lability. obtain antiphospholipid antibody testing only in the Metabolic panel presence of chorea. 250-500 mg once a day. evidence of separation anxiety is a common finding. oral or injectable Useful for the treatment of patients with convulsions. patients may still Determine recent infectious process have a neuropsychiatric disorder without evidence of recent infection (often known as PANS). 0. consider psychiatric A full neurologic assessment is necessary consultation if symptoms are found. urinary and tic disorders are a common finding. with the second dose to Monoclonal antibody drug often used in the treatment of rheumatoid be given 2 weeks after the initial dose arthritis. migraines. and frequent infections disorders are common in siblings of patients with PANDAS. lupus also needs to C-reactive protein be ruled out. tation rate. if the patient is able azithromycin.

definite remissions. Storch. Van Mater. Some unproven symptoms and used various pathology tissue-staining diagnostic and methods to test their theories (Morris-Berry et al. un. there is still no consistent treatment Uncertain Etiology regimen. Seidlitz. genetic components. interventions.. 2015. Parker-Athill. Minderra. which have been reported to be elevated in and suggested a diagnostic approach based on key some cases of autoimmune disorders. & Kallenberg. 2012). Swedo and Etoile. and outcomes are varied. impact on patients families. improvement of neuropsychiatric symptoms during Murphy....jpedhc. cortico-subcortical network dysfunction certain outcomes significant impact (Macerollo & Martino. 2012). toms (Frankovich. Cameron. a parent history of PANDAS-like symptoms. 2005. 2014) have studied this elusive phenomenon 2003). 2012). Recent authors (Chang et al. Davis. Nonetheless.. 2014). and envi. can also present with similar diagnostic criteria. Rana & Chang. Other investigators have hypothesized that auto. & Owens. and tic disorders velops in some children has yet to be achieved. However. but the presence of these high titers proven treatment mo- is not yet considered a definitive diagnostic indicator of dalities. 2015a. 2010). PANDAS and the control groups. 2004) but effective in improving Fortunately. Rhee & Treatment modalities are also debated in the literature. Lewin. evidence of group A strepto. Edge. work continues to be performed in this PANDAS symptoms (Kovacevic. the hope of consensus. and un. benazine (Xenazine). including distinguishing features to differentiate PANDAS from PANDAS (Ray et al. that high-dose steroid (methylprednisone) therapy has coccal infection.. 2013). other disorders with similar presentations. and Swedo (2015) demonstrated that her team have also been studying the disorder for many therapeutic plasma apheresis is more effective than intra- years and recently proposed three specific diagnostic venous immunoglobulin in reducing PANDAS criteria for PANS based on identified behaviors (Swedo. Most families have One factor that may be contributing to the uncertainty reported going to a and variability in diagnosing the disorder is the lack of variety of health care The lack of an evidence-based cause. www. However. making therapeutic interventions equally as unclear as Lewin. clonidine egy for evaluating suspected cases of PANS and PANDAS (Catapres) and serotonin reuptake inhibitor antidepres- was recently developed at the PANS conference in May sants have also been used to treat PANDAS symptoms 2013 (Chang et al. immunosuppressants. ronmental and infectious triggers (Muir et al. Storch. and Goodman (2012) presented findings the diagnosis and cause. Some studies have suggested suggesting that diagnostic criteria should include the that antibiotic therapy is useful in the reduction of symp- following findings: dramatic onset. a systematic strat. tetra- Leckman & Rose. Some authors have described very specific Despite all of the proposed theories. Intravenous immunoglobulin therapy has been additional studies and clinical practice will validate reported to be ineffective in treating tics (Hoekstra. antibiotic therapy. Other investigators have reported tomy/adenoidectomy. recently. show any statistical differences in serum and tissue reported in case studies inconsistent autoimmune biomarker levels between patients with are shown in Table 1. 2015) developing area. and antistreptolysin can be useful in deter. Perhaps 2013). interventions. 2014). surgical history positive for tonsillec. a surrounding PANDAS family history of autoimmune disorders. thus leading to Lack of Evidence-Based Treatment Modalities misdiagnosis (Mell. various interventions in cess and white matter abnormalities (Muir et al. 2015). and lowering immunoglobulin G levels (Ballow et al. finding healing for unknown cause. 2013).. Murphy. & Swedo.org September/October 2015 445 . antibodies may be causing the sudden and erratic their children. (Besiroglu et al. High antistreptolysin The lack of diag. Thienemann.. PANDAS have a logic system. Plasmapheresis. & Mutch. treatment modalities treatment 2013).. 2013) mining if the child had a streptococcal infection but have also been suggested as contributing to the onset are not definitive for a PANDAS diagnosis (Vincenzi of PANDAS-like symptoms (Esposito et al. uncertain children with suspected PANDAS in another study unknown cause. and clumsiness when combined with been effective in ameliorating symptoms (Muir et al... consensus about diagnostic criteria for PANDAS but argued that Lyme why this devastating neuropsychiatric disorder de- disease. symptoms... including streptococcal infections. the results of their study did not that have been modalities. 2007. and O and antidesxyribonuclease B titers were found in nostic consensus. these findings. A recent study by Latimer..antibodies. Regional inflammatory changes in the neuro. haloperidol (Haldol). Das & Radhakrishnan. Some investigators attribute providers and trying diagnostic the symptoms to an inflammatory demyelinating pro. et al. Grant. Tourette’s syndrome. 2014). Additionally. OCD. 2015. Vitaliti et al. 2013). 2013). inconsistent surrounding PANDAS. outcomes (Vitaliti et al. inappropriate have a significant on patients and basal ganglia development (Ray et al.

1 grandparent whose and science of advanced nursing care for this vulner. 2010). PNPs. and experiences told by the participants are consid. rience with the medical community. The After Institutional Review Board approval and receipt research team continued to discuss their findings. All families ilies. Saving Sammy. and of the research team. the interview questions and concepts from individual transcripts to maintain an were reviewed by a nurse researcher. at which point pilot test. Data Analysis 2014). and a final questionnaire was created. and Great Lakes PANDAS PANDAS and were included on the research team veri- Support. From these preliminary findings. The questions were initially meanings and themes. spoke English as their primary language. METHOD totaling 124 people. All participants of the children living with the disorder and their fam. children with PANDAS and when data saturation had been achieved and analysis their families were interviewed regarding their was considered exhaustive. The themes the consents for themselves and assents for any were linked to the actual transcribed data. Research team members per- pilot tested with one family affected by PANDAS. Canada. Interview questions were developed based on The research team initially analyzed the data by a review of PANDAS blog sites and parent support reading. with PANDAS. PANDAS Network. The primary Interviews were conducted in person or over the investigator (PI) has extensive training. McDermott. The primary purpose of narrative inquiry is to un. Advanced practice registered nurses (APRNs) and PNPs in particular cannot ignore the hu. fied and confirmed the identified themes. and re-examine each initial theme. Although much more research is needed No children with PANDAS were interviewed apart to better understand all of the aforementioned aspects from their parents. nosis ranged from 10 months to 37 years (M = 4. and phone. a significant gap also remains with regard lowed the parents/caregivers to answer the questions. being grateful for the opportunity to discuss their expe- ies.9 years). & Davidson. In the majority of interviews. All other members on the research by the entire family was encouraged when possible. relational. The age range of the children A qualitative method using narrative inquiry was used to was 5 to 18 years (M = 10). Participants were encouraged to three (23) themes were initially identified by members provide additional information. 49 years) who reported they had the disease in their childhood. and 62 children diagnosed with PANDAS. including the suspected or confirmed PANDAS from the perspective United States. The children with the disease were often uncomfort- No studies have been performed thus far to examine able talking about their symptoms and unusual be- the emotional. Individual concepts were next expert. In- devastating symptoms. children interviewed).and families. team involved in coding data were trained in the coding 446 Volume 29  Number 5 Journal of Pediatric Health Care . 2 adults (ages 24 and able population. analysis. Enhancing knowledge in the terviewed participants included and represented: 59 unknown areas of PANDAS will improve both the art parents of a child with PANDAS. Additionally. A paradigmatic analysis Questions were designed to help APRNs. to how patients and families perceive the experience. and social aspects associated haviors. PANDAS Resource Experts who had personal experience living with Network. (100%) contacted for possible inclusion in the study derstand the meaning people give to life events and agreed to be interviewed. ered to be valid and useful forms of knowledge (Fossey. three final broadly encom- experiences. The thoughts. but participation coding process. and in most cases. Snelgrove. 1995). Many participants reported experiences (Howie. and identifying ideas group narratives. 2002. granddaughter had the disease. Participants man aspects of any disease. which were included in the data analysis. Subjects were contacted by members of passing themes were considered representative of the the research team using membership lists from the participants’ meaning relating to their experience with Association for Comprehensive Neurotherapy: PANDAS. especially one with such Sixty people participated in interviews for the study. and Australia. Twenty- PANDAS experience. Length of time since diag- study the problem. and a sister compared with the entire data set to identify common of a sibling with PANDAS. education. comparisons of findings began. The objective of using narrative in. lending credibility to the oversight of the language was the predominant interviewee. The PI also holds a PhD with a minor in linguis- the primary caregiver (most often the mother) tics. the children al- of PANDAS. Finally. taking notes. nine broader themes emerged from the data. feelings. a PANDAS inductive approach. Latitudes. quiry was to understand the experiences of living with Participants lived throughout the world. of signed informed consents (adult participants signed revise. feelings. Harvey. formed an independent analysis and then shared find- Revisions were made based on suggestions after the ings with the rest of the team. and of the identified themes common throughout the narra- other health care professionals better understand the tives was then identified (Polkinghorne. stor. re-reading. thoughts. a mother of a child with PANDAS. stories. All interviews were audio recorded and then experience with regard to conducting qualitative data transcribed verbatim.

I feared for my life and our other kids.  It freaked all of us out. that is not what we experienced.  I just wanted someone to listen to me. Theme 1: Fear One of the most prominent themes that emerged from RESULTS the data was the notion of fear.  I don’t understand why I had to keep repeating the same thing over and over.process.  I felt like a broken record. or isn’t anyone else reading what was recorded?  It was like no one wanted to take the time to hear our story. Not Being Heard  I had to repeat the same story over and over again. frustration. Excerpts of language from participants leading to identified themes Fear  It’s a nightmare.  My sweet little boy threw a chair right through the wall! Frustration  It was so annoying to have to keep going from one doctor to the next and nobody had any idea what was going on. course. I knew it wasn’t but had to keep talking to the psy- chiatrists who didn’t know anything either. It wasn’t a psych issue. punch.  I was scared for me. and her.  It’s so frightening when she gets like that.  Nobody [medical people] seemed to hear what I was telling them.  The nurses in the emergency room were not helpful.  Putting him in the psych ward was just so frustrating.  Why don’t they [medical people] know what to do?  They [medical people] just kept telling us it was a psychiatric problem.  If they [medical people] would take the time to hear what I was saying. Excerpts of language used to bachelor’s degree. The experience of symptoms as being very scary.  Ugghh.  She gets scared when she knows the symptoms are starting again. and have health care experience. and try to hit me.  Hello! I keep telling you [medical people] the same thing. Don’t they write that stuff down somewhere.  I’ve never been so frustrated in my whole life.  I’m always so scared that the symptoms will return.  The unknown is the worst.  I thought the doctors and nurses were supposed to know what to do and how to help. www. it was so scary and I just didn’t know what to do. our family.  It’s irritating to be sitting there feeling judged by everyone.  Sometimes he would scream. I would get so angry and annoyed. further contributing to the credibility of the findings.jpedhc. they [nurses] just thought we must be the worst parents.  I worry all the time. have taken at least one research develop the themes are shown in the Box. he had an infection in his brain. The children with Fear.  It’s so frustrating knowing something is very wrong with your kid and all the medical people kept telling me it was all in his head.  I wish they would just listen. Was I doing the right thing or not? I never knew.  It’s like a bad dream I can’t wake up from. pay attention to what I’m saying.  She ran at me with a knife. BOX.  It was so frustrating that no one would listen.  Not knowing what to do was so frightening. I was afraid he would hurt his siblings too.  Half of the time I just have to appease the docs and try something I know wasn’t going to work just to get them to listen to what I was trying to tell them in the first place. especially when it’s your kid.org September/October 2015 447 . they all have a minimum of a of the participants. and not being heard were the three PANDAS and their families described the onset and dominant themes that emerged from the data. he might have gotten appropriate care.  They [medical people] all had their own idea of what was happening. slap. Additionally.  It was terrifying.  It’s such an aggravating place to be.  I was horrified when they tied him down in leather restraints and went in to see him and his wrists were all bloody. Parents/ themes were extracted from the language and stories grandparents were terrified at the behavioral.

peared to not believe the story. leading to subsequent delayed healing and additional complications (foot drop and joint Theme 3: Not Being Heard reformation). fear of being judged by health care providers were particularly ineffective at other parents. and intellectual changes evident in their encing at home. fear of medical expenses. symptoms to another disorder. and resulted in better outcomes than taking the child The children who participated were significantly less to the ED. and they were frustrated about the paucity of local health care providers skilled in providing necessary care for their children. knowledge. and knowing the return of PANDAS was imminent. Additionally. Many participants reported that they had to continually repeat the scenarios they were experi- emotional. stories were met with a sense of disbelief by medical ative factors contributing to fear: fear for the child’s staff. where they ‘‘didn’t know what to do’’ and likely to want to discuss their condition. and fear of care during a PANDAS exacerbation was often easier not being able to provide the proper care. fear that the child would not be able to func. they feared medical interventions. Children Associated with Streptococcal Infections described not being able to think as clearly. Adult participants voiced the following caus. however. fear of not knowing when symptoms hearing what the parents were saying about their chil- would return. fear of disrup. and an increased sense of parents stated that the restraints were applied as a urgency from the medical community relating to the result of inappropriate treatment of suspected care and treatment of persons with PANDAS. lacked education about the disorder. the development of height- ened irrational behaviors. fear about needing to provide long. which brought a sense of fear and dread. The boy’s more education. to whom they were looking for help. (The patient’s bilateral ankle joints were The third dominant theme voiced by the participants without defects and no foot drop was noted prior to was the notion that members of the health care commu- admission to the psychiatric unit). Some parents reported that providing home flu) would lead to the onset of symptoms. Some partici- tion in family dynamics. were ill More than 500 restraints were applied throughout equipped to provide care. and blamed the parents for child’s behavior. lacked resources to provide appropriate care. hadn’t heard about PANDAS. didn’t have accurate diagnostic procedures. the health care providers ap- exacerbations. losing the (PANDAS). consid- ered the parents ineffective. They feared what their friends would think about their irrational behaviors. The participants reported being frustrated at the lack of knowledge about PANDAS. considered it a psychiatric condition.jpedhc.FIGURE. were saying. or made facial expres- tion in society. Theme 2: Frustration Another dominant theme expressed by the participants was the concept of frustration.’’ They also reported that 448 Volume 29  Number 5 Journal of Pediatric Health Care . and they feared the loss of established friendships. fear that other illnesses (such as colds/ dren. Par- ticipants were frustrated that health care providers didn’t have a consistent diagnosis. The participants stated that often their children. fear of harm/injury from the child during behavior and symptoms. attempted to attribute term care. ability to read and write. participants expressed specifics relating to frustration with the medical community. gave a variety of diagnoses each time the child was brought to a medical facility. they feared losing the ability to attend school and other so- cial events. the ‘‘often made things worse. Participants were espe- cially frustrated that members of the health care commu- nity. A previously healthy 15-year-old boy children who did talk about their experience described after hospitalization for exacerbation of Pediatric having a premonition that the symptoms were return- Autoimmune Neuropsychiatric Disorders ing. When the parents would try to explain their child’s well-being. The participants all desired the course of this boy’s hospitalization. This figure ap. lacked compassion. fear of how they would be pants reported that emergency department (ED) perceived by medical staff. PANDAS.org. sions suggesting a patronizing attitude. nity were not listening to what the parents or children pears in color online at www.

Carneval and Gaudreault (2013) found that scending. medical procedures.S http://pandasnetwork. PANDAS resources Type Name Source Blog Bearing P.facebook.D.82326?category_id=4&town_id=1&sub_ type=stories Foundation/blog PANDAS/PANS http://www. and comfort.com/mi/faculty/madeleine-w-cunningham-phd infection expert Clinical laboratory Moleculera Labs http://www.D.pdf Note. were not judgmental or conde.com/ News item Kids catch OCD from form of strep http://www.S http://bearingpandas.pandasfoundation.moleculera.N. PNPs should prescribe care based but often caused harm (see the Figure). Pediatric nurses. PNPs need tion by explaining pending procedures. entertainment. Additionally. investigators too found that the theme of uncertainty was ilies.org Diagnostic tool for PNPs PANS Symptom Scale http://pandasnetwork.oumedicine.jpedhc. The results were not only ineffective As a starting point.org/ Neuro Therapy: Latitudes Web site PANDAS Resource Network http://www. are humans who are scared. ents. A worry about the unknown. frustrated. Many families reported provide care inclusive of therapeutic communication. PANS = Pediatric Acute-onset Neuropsychiatric Syndrome.wmcactionnews5.com/story/22297818/kids-catch-ocd- from-form-of-strep News story Youthful victim of rare disease looks http://warwickonline. these about PANDAS and its impact on children and their fam. non of fear. PANDAS = Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. excellent listening skills.A. unfa- network of families experiencing PANDAS formed in miliar hospital personnel. dren found that uncertainty.org September/October 2015 449 . exacerbation of symptoms. and need the PNPs should practice and teach nurses the art of educa- support. Interestingly.N. tal room. implemented. Strategies being able to share and understand similar stories that include allowing/encouraging the presence of par- (see Table 2).pandasresourcenetwork. 2011). anxiety (Ju et al. and APRNs working in both pediatric care about the disorder lead to statistically significant higher and ED settings are especially responsible for learning levels of fear and anxiety for parents. many physicians did not want to listen to their story providing care for people desperate for answers. the The participants reported a sense of relief and hope identified theme of fear could be addressed based on ev- when they encountered medical staff who were willing idence from other studies also addressing the phenome- to hear their entire story. visitors. describing and waiting for evidence-based interventions and symptoms and relating them to the disorder. being referred to psychiatric facilities.org/wp-content/uploads/2012/11/pandas_ pans_scale. about their child’s experience and often stopped the Sometimes when evidence-based practice is not yet conversation to give their diagnosis and treatment established.com/ Newsletter P. PhD http://www. where interven.A. and were not quick to impose an opinion.com/GreatLakesPANDAS Autoimmune and Madeleine W. allowing the child to have an item from home (such as a DISCUSSION blanket or stuffed animal). PNPs must become aware Another study examining anxiety in mothers of sick chil- of this new disorder and learn the signs.wordpress.A. providing play time away from the hospi- children and their families are experiencing very real. compassion. explaining the to bridge the gap between developing research pathophysiology behind the symptoms. and friends. knowledge.org/ Web site Association for Comprehensive http://latitudes. and care of a nurse. and taking www. For example. under- tions such heavy sedation and leather restraints were standing. medical and nursing care. as is the case with PANDAS. A simple but often overlooked the results of this study serve as a reminder to all nurses nursing intervention to ameliorate fear of the unknown that behind the mysteries and uncertainties of medicine is to offer education to the patients and their families. and providing gifts all contributed to increased frightening. TABLE 2. kindness from nurses and staff. because they are most likely to be the first health the dominant contributing factor to increased fear and care providers to assess this population. increased frequency of and current options for treatments.com/books/saving-sammy/ Facebook page Great Lakes PANDAS Support https://www. OCD = obsessive-compulsive disorder.com/stories/Youthful-victim-of-rare-disease-looks-to- to spread word about PANS spread-word-about-PANS. empathy. and physical symptoms all 2009 and have found great comfort and support in contributed to a sense of fear in sick children.A. providing various forms of Despite a lack of consensus surrounding PANDAS. PNPs must still (which were often inaccurate).org/ Book Saving Sammy http://bethalisonmaloney. Cunningham. and insufficient information ED nurses. and frustrating symptoms that require comfort and reduction in anxiety and fear for ill children.. on the evidence found in this study. symptoms.

diagnostic methods. and nursing care in the likelihood of proper appraisal support for mothers of children with serious absence of evidence- mental illnesses noted a reduction in frustration. stand the newly iden. and lack of understanding were Implications for Nursing Education reported within the autism population. Initial skepti- The results of this study have significant implications for cism and misdiagnoses were ultimately replaced with nursing education. there Finally. and Gilbert (2014) sug. sessing a patient who is suspected to have PANDAS. Frus.the time to talk with parents. with hospital and clinic administration to develop orga- rate strategies to promote compassion and PNPs’ nizational strategies designed to improve compas- desire to deliver it must be ameliorated if the sense of sionate nursing care. early evidence demonstrated that provision of such support disorders will and accurate using the telephone and Web-based approaches was continue to be discov. thus showing compassion to vulnerable symptoms in their children before the medical commu- population groups. In a mixed. and appro. 2009). management positions to be proactive in working sionate care. Nurse educators surrounding the experience of illness. the identified theme of frustra. throughout the nursing need to teach all mine their effectiveness in the PANDAS population. emphasis needs to be tration often resulted from physical and financial placed on teaching complex of consequences related to the chronic illness. patience. nursing interven. evidence-based practices are established. tified disorder. While our medical colleagues are 450 Volume 29  Number 5 Journal of Pediatric Health Care . All patients and their families not being heard is to be overcome. and standing of the rising disorder. and Web-based support. APRNs. PNPs Nurse educators need to teach all APRN and nursing must practice empathy and understanding even though students about the complex of autoimmune neuropsy. PNPs. In ing. institutional and organizational should encourage bedside nurses and nurses in barriers may exist to threaten the delivery of compas. and nurses methods approach. and enhanced under- ulums so new PNPs will recognize it. more students about the tion has also been noted in other nursing research. specifics of the disorder are not fully known. Kvangarsnes. care from nurses. nity fully understood the disorder. new and growing disorder of PANDAS into their curric. Internet. Information about this developing There is a significant paucity of nursing research disorder needs to be included in nursing textbooks relating to PANDAS. Parents began describing are saying. informational. Additionally. chiatric disorders to increase the likelihood of proper treatment. As research is tions aimed at reducing frustration within the PANDAS conducted to under- appropriate population could also be implemented using tele. The simple to the people experiencing such disorders. New treatment. community. A similar analogy occurred with tional strategies to improve ways to hear what patients autism several years ago. communi. Scharer and colleagues (2009) need to be taught disorders to found evidence suggesting that nurse interventions how to provide increase the aimed at providing emotional. which ultimately leads to an improved sense of addition. neuropsychiatric and human error (Scharer et al. early and accurate diagnosis. Implications for Nursing Practice sion and could help reduce the sense of not being Table 1 lists some current diagnostic and treatment heard. and effective. the results of this study should remind PNPs to well-being. ered. research. However. More work needs deserve compassion. phone. bureaucracy delays. Their based practice. Implications for Nursing Research priate referrals. diagnosis. fear. These types of lums and disseminated nursing interventions should be further studied to deter. A reduction in the sense of not being heard could practices that PNPs and APRNs can implement when as- then yield an improved sense of compassion and car. PNPs by individual nurses. strategy of listening and hearing the stories of patients and their families is one way PNPs can show compas. APRN and nursing Although less studied. Crawford and colleagues (2014) always listen to patients and their families without also found that despite the intervention of compassion imposing judgment or preconceived notions. of nursing. referrals.. The tension between inadequate corpo. As technology advances. established treatment methods. Brown. During gested that improved communication between health these times nurses and nurse practitioners should care providers and patients leads to an enhanced be standing in the gap to provide support and care perception of compassion in health care. a narrative literature review conducted by will be a period of uncertainty and trials before Crawford. understanding. A similar phenomenon appropriately treat the condition in their practices. Similar expressions of frustration. diagnose it. and to be done to develop effective nursing and organiza. and practicing the art autoimmune cation with community agencies. may be occurring in the PANDAS population. PNP programs need to include the increased awareness. answering their questions and nursing curricu.

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