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Supporting Students with Autoimmune Disorders rheumatism

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Supporting Students with Autoimmune Disorders rheumatism Powered By Docstoc
					  Supporting Students with
  Rheumatologic Disorders

CHKD’s 15th Annual Chronic Illness Conference
             November 13, 2010

   Anna Carmela Sagcal-Gironella, MD, MS
Pediatric Rheumatology – Children’s Specialty Group
     Children’s Hospital of the King’s Daughters
                       Objectives
• Recognize in children the classic presentation of:
   – Juvenile Idiopathic Arthritis (JIA)
   – Juvenile Primary Fibromyalgia Syndrome (JPFS)
   – Systemic Lupus Erythematosus (SLE)

• Discuss the approach to the treatment and management of
  children with these rheumatologic diseases.

• Identify the primary care and school-related issues in children
  with these rheumatologic diseases.
Juvenile Idiopathic Arthritis
          • 7 year old girl
          • Difficulty running and keeping up with
            friends lately
          • Appears well except for a minor limp
            when walking
          • Warm and swollen left knee
          • Stiff left knee in the morning, after a
            nap, or after prolonged sitting
Juvenile Idiopathic Arthritis
                 Limping

              Refusal to play
                  or use        Weakness
                extremity
    Joint       Immobile
 Discomfort     extremity


                 Irritable


              Psychological
               regression
      Juvenile Idiopathic Arthritis
• Most common rheumatologic disease in children
• US incidence: 4-14 cases per 100,000 population/ yr.
• Race: Caucasians > African lineage. Less common
  among Japanese, Filipinos, and Samoans
• Gender: girls > boys
• Age: < 16yo
                                Diagnosis of JIA
                                    Persistent arthritis in at least    JIA
                                              one joint
                                          Onset < 16 years old
                                           > 6 weeks duration
                                     Other diseases are excluded


   < 4 inflamed joints                                             Any number of inflamed joints
                                         > 5 inflamed joints
                                                                  Fever (> 39oC) daily/ twice daily
       Large joints                     Large + small joints
                                                                               Rash
(knee, ankle elbow, wrist)                  (fingers, toes)
                                                                  Large liver, spleen, lymph nodes
                                                                              Serositis
     Oligoarticular
          JIA                             Polyarticular JIA
                                                                         Systemic-onset
                                                                              JIA
  International League of Associations for Rheumatology (ILAR)
Quotidian Fever of Systemic-Onset JIA




         Intermittent Fever
         • Nocturnal
         • Duration of at least 2 weeks
         • Recurrent spikes for at least 3 days
             Complications of JIA
• Generalized growth disturbance (6-20%)
   – Linear growth
   – Weight
   – Sexual maturation
• Localized growth disturbance
   – Limb length discrepancy
• Decreased bone density
   – Higher risk for osteoporosis
             Complications of JIA
• Macrophage Activation Syndrome
• Active disease for > 10 years after onset (24-50%)
• Psychosocial disruption
   –   Adjustment and coping issues
   –   Self-esteem
   –   Dependence/independence
   –   Adherence
         Psychosocial Burden of JIA
•   Diagnosis of JIA is a life-changing event for a family
•   Initial diagnosis a time of emotional turmoil for family
•   Families grieve the loss of the “healthy child”
•   Stages of grieving often encountered
•   Most families eventually adapt to diagnosis
•   Siblings often feel resentful, neglected, and angry
•   May also feel worried, uninformed, fearful, and guilty
•   May feel embarrassed if arthritis is visible
•   May impact the amount of time available for family
    and peer activities
      Psychosocial Burden of JIA
• Children with JIA may feel isolated from peers
• Loss of self-esteem
• Negative body image

• Primary concern: “not to be different”
           School and JIA
Bowyer
• unable to attend full school regularly 6%
  oligoarthritis, 28% polyarthritis, 44% systemic
Ruperto
• 20 % missed school
Minden
• comparable or higher than age matched controls
  (20-35 y/o)
Oen
• secondary education ↓ in women, compared to
  general population
         Treatment Goals of JIA
•   Control pain
•   Suppress inflammation
•   Restore/preserve function
•   Prevent/restore range of motion
•   Promote normal growth and development
•   Promote self-management
Approach to JIA Treatment
                   Experi-
                   mental

               Sulfasalazine

              Methotrexate

           Plaquenil, auranofin

     Prednisone (intra-articular, oral)

  Non-Steroidal Anti-inflammatory Drugs
                Education
     Approach to JIA Treatment
• Paradigm shift in 1990s

  Manage JIA more aggressively by giving
  treatment early in the disease course with the
  goal of preventing joint damage and slowing
  the progress of joint damage.
Approach to JIA Treatment
              Education

  Non-Steroidal Anti-inflammatory Drugs


             Methotrexate

            Biologic: Enbrel,
          Humira, Anakinra, etc.
            (Prednisone rarely)
                 Pharmaco-
                 genomics
               Chronic Inflammation
                                Anti-              Pro-
                           inflammatory       inflammatory
Anti-TNF
Etanercept (Enbrel)
Adalimumab (Humira)
Infliximab (Remicade)

Anti-IL-1
Anakinra (Kineret)
Rilonacept (Arcalyst)
B-cell depletion therapy
Rituxan (Rituximab)

                              Imbalance between mediators
                                    of inflammation
      Interdisciplinary Approach
Psychosocial care
  – Self-management
  – Education
  – Family care
Nutrition
  – Bone mineralization (calcium supplements)
  – Monitor growth parameters
         Interdisciplinary Approach
Ophthalmologic management
Physical management (Physical/Occupational Therapy)
   –   Exercise
   –   Rest
   –   Heat/Cold or Hydrotherapy
   –   Ultrasound
   –   Devices (splints, orthotics, etc.)
Psychology support/services
   – Cognitive behavioral therapy
   – Counseling
Juvenile Primary Fibromyalgia Syndrome (JPFS)

                     • 15 y.o. female
                     • Junior high school
                     • Frequent absences (total of 4
                       weeks)
                     • Complains of “aching all over”
                     • Is tired “all the time”
                     • Complains of headaches and
                       abdominal pain
                     • Not sleeping well, needing
                       frequent naps
                     • Symptoms are worse with cold
                       weather
             Common Symptoms of JPFS
 Symptoms                                                                               Frequency*
 Poor sleep                                                                                96%
 Chronic headaches                                                                            71%
 Fatigue                                                                                      62%
 Pain associated with physical activity                                                       42%
 Subjective tissue swelling                                                                   40%
 Irritable bowel syndrome                                                                     38%
 Pain modulation by weather                                                                   36%
 Numbness/ tingling of extremities                                                            24%
 Chronic anxiety or tension                                                                   22%
 Pain associated with stress or anxiety                                                        -
*Siegel DM, Janeway D, Baum J. Fibromyalgia syndrome in children and adolescents: clinical features at
presentation and status at follow-up. Pediatrics. Mar 1998;101(3 Pt 1):377-82.
   Other Common Symptoms of JPFS

  Symptoms                                                                               Frequency*
  Morning stiffness                                                                            53%
  Depression                                                                                   43%
  Dysmenorrhea                                                                                 36%
  Abdominal pain**                                                                             17%
  Joint hypermobility**                                                                        14%
  Raynaud’s phenomenon                                                                         13%


*Siegel DM, Janeway D, Baum J. Fibromyalgia syndrome in children and adolescents: clinical features at
presentation and status at follow-up. Pediatrics. Mar 1998;101(3 Pt 1):377-82.
**Gedalia A, Garcia CO, Molina JF; Bradford NJ; Espinoza LR. Fibromyalgia syndrome: experience in a pediatric
rheumatology clinic. Clin Exp Rheumatol. May-Jun 2000;18(3):415-9.
   JPFS

Frequency distribution of
common tender points
Tender Points                     Frequency
Upper back (trapezius)              82%
Medial side of the knee             76%
Lateral elbow (lat. epicondyle)     67%
Front neck muscles (SCM )           61%
Upper nape (occiput)                58%
Medial elbow                        55%
Upper buttock (gluteus)             45%

Normal PE  no arthritis, weakness, or inflammation
                            JPFS Distribution
• 2/100 of US population
• Gender: girls: boys 3:1 to 7:1
      – adults: F:M 7:1A
• Race: Caucasians > African Americans
• Age:
      – Mean age of onset: 12 years old
      – Peak age of diagnosis: 13-15 y.o.B,C
      – Earliest age diagnosed is 5 y.o.
• 25-40% of musculoskeletal pain syndromes
AYunus  MB. Semin Arthritis Rheum. Jun 2008;37(6):339-52.
BYunus  MB, Masi AT. Arthritis Rheum. Feb 1985;28(2):138-45.
CSiegel DM, Janeway D, Baum J. Pediatrics. Mar 1998;101(3 Pt 1):377-82.
                       Cycle Maintaining JPFS




Anthony KK, Schanberg LE. Juvenile primary fibromyalgia syndrome. Curr Rheumatol Rep. 2001 Apr;3(2):165-71.
             Psychosocial Impact of JPFS
Compared to normal patients and/ or JIA patients
   – Low health-related quality of life (due to pain)1
   – Increased temperamental instability and higher levels of
     depression and anxiety 2
   – Use of maladaptive coping strategies (emotion focused
     avoidance)3
   – Emotion focused avoidance (strongly related to depression) 3
   – Children and parents self-reported higher levels of
     anxiety/depression and poorer psychological adjustment 2
   – Less family cohesion2
               JPFS and School
• Decreased concentration due to pain
  – Decreased learning ability
  – Branded as lazy, slacker, unmotivated, or emotionally
    disturbed
  – Lower school popularity and leadership qualities
  – School phobia
  – Frequent school absences
• Fatigue
  – Difficulty with catching up with missed assignments
                                  JPFS and School

                                                                             Outcome
                                                                             - ↑ anxiety
    Academic                          Social problems:
      Failure                                                                - ↑ social withdrawal
                                      - Isolation
   JPFS > peers                                                              - ↑ emotional distress
                                      - Peer rejection
                                                                             -↑ sensitivity
                                                                             - Depression




Kashikar-Zuck S, et al. “Social functioning and peer relationships of adolescents with juvenile fibromyalgia
syndrome”. Arthritis & Rheumatism 2007;57:474-480.
         Treatment Goals for JPFS
•   Reduce pain
•   Reduce depression
•   Decrease sleep disturbances
•   Promote physical activity (mainstay of treatment)
            Treatment Approach for JPFS
   • Cognitive behavioral therapy (CBT)
         – Goals:
               • Decrease pain and disability
               • Improve ability to cope with pain and stress
         – Skills education:
               •   progressive muscle relaxation
               •   activity pacing
               •   distraction techniques
               •   reframing of negative thoughts
               •   problem solving

Golenberg DL, Burckhardt C, Crofford L. Management of Fibromyalgia Syndrome. Journal of the American
Medical Association, 2004; 292 (19): 2388-2395.
Burkhardt CS, Goldenberg D, et al. Guideline For The Management Of Fibromyalgia Syndrome Pain in Adults and
Children, APS Clinical Practice Guidelines Series, 2005, No. 4.
       Treatment Approach for JPFS
• Cognitive behavioral therapy (CBT)
      – Studies showed CBT reduced anxiety, depression,
        mood instability, pain sensitivity and improved
        family support1,2
      – CBT, exercise and activity has better outcome
        compared to medication alone3




  1Conte PM, Walco GA, Kimura Y. Arthritis Rheum. Oct 2003;48(10):2923-30.
  2Walco  GA, Ilowite NT. J Rheumatol. Oct 1992;19(10):1617-9.
  3Rossy LA, et al. Ann Behav Med. Spring 1999;21(2):180-91.
       Treatment Approach for JPFS
• Counseling and Support
  – Educate1 and reassure the patient and the family
  – Encourage school attendance
  – Encourage normal activity participation
  – Modify attendance or activity




  1G   Degotardi PJ, et al. J Pediatr Psychol. Aug 2006;31(7):714-23.
           Treatment Approach for JPFS
• Pharmacologic (No pediatric trials. Adopted from adult studies.)
     – Nonsteroidal Anti-Inflammatory Drugs (NSAIDs )
           • ibuprofen (Advil, Motrin)
           • naproxen (Naprosyn)
     – Antidepressants
           • amitriptyline (Elavil), fluoxetine, duloxetine
           • decrease pain, improve function and sleep
     – Skeletal muscle relaxants
           • cyclobenzaprine (Flexerie)
           • relieve painful muscle spasms
     – Corticosteroids and strong opioids are not recommended!
 Carville SF, et al. EULAR evidence-based recommendations for the management of fibromyalgia syndrome.
 Ann Rheum Dis. 2008 Apr;67(4):536-41.
              Treatment Approach to JPFS
 • Improve sleep hygiene
       – Avoid napping
       – Avoid caffeine (coffee, tea, soda, energy drinks)
       – Establish bedtime routine
       – Avoid aerobic exercise before bedtime
       – Sleep analysis to identify treatable sleep
         disorders1
       – Low-dose antidepressant2

1Tayag-Kier  CE, Keenan GF, Scalzi LV. Pediatrics. Nov 2000;106(5):E70.
2Gedalia  A, et al. Clin Exp Rheumatol. May-Jun 2000;18(3):415-9.
Burkhardt CS, et al. Guideline For The Management Of Fibromyalgia Syndrome Pain in Adults and Children, APS
Clinical Practice Guidelines Series, 2005, No. 4.
             Treatment Approach to JPFS
  • Prescribed graded exercise (from adult studies)
        – Heated pool treatment with or without exercise is
          effective for fibromyalgia
        – Tailored aerobic exercise program*
        – Customized strength training program*



        *Can be beneficial to some patients with
          fibromyalgia

Carville SF, et al. EULAR evidence-based recommendations for the management of fibromyalgia syndrome.
Ann Rheum Dis. 2008 Apr;67(4):536-41.
                      Prognosis for JPFS




              Treatment outcomes for 50 JPFS patients
                   after 18 months of follow-up
Gedalia A, et al. Clin Exp Rheumatol. May-Jun 2000;18(3):415-9.
             Childhood-Onset
   Systemic Lupus Erythematosus (cSLE)
                                     •   16 y.o. African American female
                                     •   Fever (101-102oF) for 3 weeks
                                     •   Always feels tired
                                     •   Gradual decline in school
                                         performance
                                     •   Recurrent headaches
                                     •   Oral ulcers
                                     •   Rash on cheeks and nasal bridge
                                     •   Body pains for 4 weeks
                                     •   Swollen feet
Nature Medicine 9, 1337 (2003)
http://www.nature.com/nm/journal/v9/n11/images/nm1103-1337a-I1.jpg
                         cSLE
• Lifelong
• Episodic
• Multisystem
• Autoimmune disease
• Widespread inflammation of blood vessels and
  connective tissues
• Presence of antinuclear antibody (particularly dsDNA)
• Variable manifestations
• Unpredictable natural history
                            cSLE Distribution
• Prevalence: 12-50/ 100,000 individual1
• Common age of onset: 7-16 years old2
• More common among Native Americans, Asian
  Americans, Latin Americans, and African Americans
  compared to Caucasians
• Girls:boys 4:1 (pre-puberty); 5:1 (after puberty)1




 1Textbook   of Pediatric Rheumatology 5th Ed. Cassidy, Petty, Laxer and Lindsley. Elsevier Saunders, 2005.
 2Caeiro F, et al. Ann Rheum Dis. 1981 Aug;40(4):325-31.
           Common cSLE Symptoms
               Symptoms at any time                           Frequency (%)
            Malar (butterfly) rash                                       72
            Arthritis                                                    66
            Fatigue                                                      60
            Renal disease                                                59
            Other rashes                                                 48
            Fever (>100oF)                                               46
            Weight loss                                                  36
            Nasal/ oral ulcers                                           36
            Alopecia                                                     31

Textbook of Pediatric Rheumatology 5th Ed. Cassidy, Petty, Laxer and Lindsley. Elsevier Saunders, 2005.
   Less Common cSLE Symptoms
                Symptoms at any time                                      Frequency (%)
 Anorexia                                                                           22
 Pleuritis/ carditis                                                                24
 CNS disease                                                                        21
 Photosensitivity (UV radiation)                                                    19
 Raynaud’s phenomenon (purple/pale/red                                              18
 digits from cold or stress
 Lymphadenopathy                                                                    15
 Digital ulcers                                                                      6
 Myocarditis (chest pain)                                                            3
 Myositis (muscle pain)                                                              3
 Thrombocytopenic purpura                                                            2
Textbook of Pediatric Rheumatology 5th Ed. Cassidy, Petty, Laxer and Lindsley. Elsevier Saunders, 2005.
Common CNS Symptoms in cSLE
                         Symptoms                              Frequency (%)
        Recurrent headache                                                71
        Cognitive disorder                                                55
        Isolated seizure                                                  47
        Migraine                                                          36
        Acute confusional state                                           35
        Major depressive episode                                          32
        Depressive features                                               23
        Anxiety disorder                                                  21


Textbook of Pediatric Rheumatology 5th Ed. Cassidy, Petty, Laxer and Lindsley. Elsevier Saunders, 2005.
 ACR 1997 Criteria for SLE Classification
1.  Malar (butterfly) rash
2.  Discoid-lupus rash                                                           (+) Antibody to dsDNA
                                                                                 or
3.  Photosensitivity                                                             (+) Antibody to Smith
4.  Oral ulcers (or nasal ulcers)                                                nuclear antigen
                                                                                 or
5.  Non-erosive arthritis                                                        Positive finding of
                                                                                 antiphospholipid
6.  Serositis (pleuritis or carditis)                                            antibodies based on:
7.  Renal disorder (proteinura >0.5g/day                                         1. IgG or IgM
                                                                                 anticardiolipin antibodies,
    or cellular casts)                                                           or
                                                                                 2. Lupus anticoagulant, or
8. Encephalopathy                                                                3. False positive serologic
9. Cytopenia                                                                     test for syphilis for at
                                                                                 least 6 months
10. Immunologic disorder
11. Positive antinuclear antibody (ANA)
     Textbook of Pediatric Rheumatology 5th Ed. Cassidy, Petty, Laxer and Lindsley. Elsevier Saunders, 2005.
                           Lupus Nephritis
• 60-80% of cSLE patients develop renal disease
• Occurs within 2 years of diagnosis of SLE
• Risk of occurrence of lupus nephritis decreases 5
  years after diagnosis of cSLE
• Hypertension, dark foamy urine, edema around eyes,
  legs, ankles or fingers


                                   Mycophenolate mofetil    Dialysis,
    Corticosteroid                 Cyclophosphamide        Transplant

Perfumo F, Martini A, Lupus. 2005;14(1):83-8
    Central Nervous System Disease
• #2 cause of morbidity and mortality in SLE
• 20-95% of cSLE patients develop CNS disease
    – 50% is present at onset of cSLE
    – 40% will be present during the 1st year of cSLE
    – Some develop CNS disease years after cSLE diagnosis
• Headache, dizziness, seizure, psychosis, cognitive
  dysfunction (confusion, poor memory, difficulty
   expressing thoughts)



Duzova A, Bakkaloglu A. Curr Pharm Des. 2008;14(13):1295-301.
Textbook of Pediatric Rheumatology 5th Ed. Cassidy, Petty, Laxer and Lindsley. Elsevier Saunders, 2005.
Brunner, HI, University of Toronto, 2001
           Psychosocial Impact of cSLE
• Depression
• Anxiety disorders
• Feeling of uncertainty about illness, pain &
  fatigue
• Poor physical functioning associated with:
     – helplessness, disease activity and disease damage
       (Hispanics)
     – fatigue and pain (African-Americans and Caucasian)
• Self-esteem status is related to mental health

Seawell AH, Danoff-Burg S. Psychosocial research on systemic lupus erythematosus: a literature review.
Lupus. 2004;13(12):891-9.
      Psychosocial Impact of cSLE
• Diagnosis of SLE is a life-changing event for a family
• Initial diagnosis a time of emotional turmoil for
  family
• Stages of grieving often encountered
• Siblings often feel resentful, neglected, and angry
   – May also feel worried, uninformed, fearful and guilty
• May feel embarrassed if skin changes prominent &
  visible → isolation and withdrawal
      Psychosocial Impact of cSLE
• Children with SLE may feel isolated from peers
• Loss of self-esteem
• Negative body image

• Primary concern: “not to be different”
         Goal of Treatment of cSLE
• Control disease progression
   – Minimize disease exacerbation
   – Prevent serious organ damage
• Prevent medication side effects
   –   Growth
   –   Puberty
   –   Development
   –   Fertility
• Treatment compliance and frequent re-evaluation
 Pharmacologic Treatment for cSLE
• Hydroxychloroquinolone (Plaquenil)
• Immunosuppressants
   – Cyclophosphamide (Cytoxan) - for severe renal/ CNS dse.
   – Mycophenolate mofetil (CellCept) - off label use for lupus
     nephritis
   – Azathioprine (Imuran)
   – Cyclosporine (Sandimmune)
• Corticosteroids
   Pharmacologic Treatment for cSLE
 • Nonsteroidal anti-inflammatory drugs
       –     Muscle and joint pains
       –     Low-dose aspirin for anti-phospholipid syndrome
       –     Naproxen, tolmetin, diclofenac
       –     Some studies link Ibuprofen1-4 or naproxen4 to higher risk
             for aseptic meningitis
 • Calcium and vitamin D supplements


1RodríguezSC, et al. Medicine (Baltimore). 2006 Jul; 85(4): 214-20.
2Østensen M, Villiger PM. Lupus. 2001;10(3):135-9.
3Mandell BF, Raps EC. Am J Med. 1987 Apr;82(4):817-20.
4Weksler BB, Lehany AM. DICP. 1991 Nov;25(11):1183-4.
     Alternative Therapy for cSLE
• Monoclonal antibodies (MAbs)
  – Synthetic proteins that targets B cells
• Intravenous immunoglobulins
  – Blood product. Antibodies from B cells
• Dehydroepiandrosterone (DHEA)
  – Synthetic equivalent of steroid produced by adrenal gland
• Autologous stem cell transplant
• Plasmapheresis
  – Extraction of and replacement with new plasma volume
            School Adjustments
Mobility                            Possible Solutions
           • May have difficulty with stairs or steps

           • Arrange for help getting on the bus

           • Arrange to leave class a few minutes early or to arrive five minutes
           late; if necessary as many classes as possible on one floor

           • Keep classes close together to avoid walking long distances

           • Arrange for shortest time possible to ride on the bus. This gives
           more time for bathing, dressing, breakfast, exercises, etc. in the
           morning

           • Make special arrangements for gym class or P.E. teacher to adapt
           activities (swimming, scorekeeper, coach, timer, etc.)

           • Make plans ahead of time if necessary during field trips, fire drills, or
           special class activities.
            School Adjustments
Stiffness                       Possible Solutions
               • ↑ with periods of inactivity, especially in AM’s or
               after sitting

               • Arrange with the teacher to allow student move
               about the class frequently (handing out or collecting
               papers, erasing chalkboards, etc.)

               • Arrange to have student sit in the back, or to one side
               of the class so they can stand without being noticed

               • Arrange for late arrival to school

               • If knee or hip problems, then discourage sitting cross-
               legged or “Indian-style” on the floor
          School Adjustments
Fatigue                     Possible Solutions
             • Most pronounced in systemic & polyarticular &
             fibromyalgia
             •↑ fatigue and naps especially with flare and ↑
             pain
             • May need altered schedule i.e., late arrival/early
             dismissal; rest during day; pacing of activities
             especially in fibromyalgia
             • May need altered length of assignments
             • May need pain med if fatigue related to pain
             FIBROMYALGIA: FOCUS ON FUNCTION NOT PAIN
             AND FATIGUE
                      School Adjustments
Activities of Daily                         Possible Solutions
      Living
                       • 2 sets of books
                       • Computer for writing assignments—needs wrist rest
                       • Back pack for carrying items (if no shoulder involvement
                       • Elevator pass/key, especially if flared or trouble w/ stairs
                       • Pencil build-ups
                       • Extra time to complete tests; obtain notes from teacher or
                       classmate
                       • Plan ahead for standardized tests (i.e., SAT, ACT,
                       proficiency) for extra time; needs to be months before test
                       • Permission for shorter homework assignments or
                       computer when appropriate
                  School Adjustments
 Physical Education /                       Possible Solutions
Competitive Sports &
    Safety Issues
                        JIA:
                        • Allow to perform PT exercises in gym; altered PE
                        program

                        • Self-limit activities

                        • Substitute as timer, scorekeeper, linesman, etc. if
                        unable to do activity

                        • Avoid activities putting stress on involved joints

                        • Safety, as related to driving and C-spine involvement;
                        special considerations (i.e., mirrors, stick shift vs.
                        automatic); specific joints: neck, hands
                       School Adjustments
Physical Education /                        Possible Solutions
Competitive Sports
  & Safety Issues
                       SLE:
                       • Noncompetitive/contact sports with spleen enlargement or
                       low platelet count

                       • Assess risk of bleeding

                       • Safety w/ activities related to cognition, ↓ platelets
                       operating automobile/vehicle issues/sports activities

                       JPFS:
                       • Need graduated aerobic exercise (often very deconditioned)
                   School Adjustments
Photosensitivity                      Possible Solutions
                   • Indoor activity is advised

                   • For outdoor activity, remind the use of high SPF
                   sunscreen long sleeved clothes and broad-rimmed hat

                   • Apply sunscreen at least 30 minutes before going out

                   • Reapply sunscreen every 3 hours

                   • Provide UV filter screen for computer monitors
                 School Adjustments
Puberty & Risk                       Possible Solutions
  Screenings
                 • Possible delayed menarche, amenorrhea or anovulatory
                 cycles with flares - mostly in JIA and SLE
                 • Counseling regarding expectations/concerns related to
                 puberty

                 Screening for:
                 • sexual activity/ alcohol (especially if taking methotrexate or
                 biologic drugs)
                 • smoking  increases risk for clots; especially if + APA in SLE
                 weight gain, acne, and BP secondary to corticosteroids
                 • gingival hyperplasia if on cyclosporine  increase brushing
                 to 4x/day, if possible

                 • May need support for body image issues
                 • Be cognizant of possible mood changes if on corticosteroids
             School Adjustments
Diet/ Meds                      Possible Solutions
               • Students on corticosteroids should limit salt intake

               • Monitor calorie intake to avoid excessive weight
               gain and diabetes

               • Supplement with calcium and vitamin D (to prevent
               osteoporosis)

               • NSAIDs may cause abdominal pain, easy bruising,
               headaches  take after meals

               • Patients on corticosteroids may have weight gain,
               mood swings, decreased bone density, occasional
               concentration problems in school
               School Adjustments
Immunization                  Possible Solutions
               JIA/SLE:
               Typically no contraindication UNLESS on
               immunosuppressives, steroids, or biologics ---
               then:
                   • No live virus vaccines
                   • May need to postpone immunization if on
                   high-dose steroids

               JIA/ SLE/ JPFS
               Annual flu vaccine recommended (especially if on
               steroids, immunosuppressives, or biologics)
                   • No intranasal vaccines if on above meds
                 School Adjustments
Common Illness                       Possible Solutions
                 • Interim illnesses may cause mild flare of symptoms

                 • Assess fevers, GI upset, infections

                 • Avoid (if possible) sulfa medications if on methotrexate

                 • EBV (mono) special consideration if on methotrexate,
                 cyclophosphamide, CellCept, or biologics

                 • Increased risk of infections if on methotrexate,
                 cyclophosphamide, CellCept biologics (will need to hold
                 biologic if febrile or develops significant infection such as
                 pneumonia)

                 • Notify family if classmate with varicella
                      School Adjustments




Lovell DJ, et al. , “School Attendance and Patterns, Special Services and Special Needs in Pediatric
Patients with Rheumatic Diseases: Results of a Multicenter Study,” Arthritis Care and Research, Vol
3, No 4. 1990.
               School Adjustments
Attendance &                          Possible Solutions
  Transition
               • ↑ absence (due to symptoms, medical consult, hospitalization)

               •May need assignment/schedule adjustments

               • May need gradual re-entry program

               • If has IEP/504 waiver of waiting time to receive assignments
               during absences

               • May need tutor or home teacher if out for extended time

               • WATCH GRADES (serve as indicator of cognition/ depression;
               Symptoms can be subtle!

               • Plan transitions and anticipatory changes and needs between
               schools (i.e., elementary/ middle/high school)
               • College transition issues
               • BVR assessment and vocational issues
           Acknowledgment

Janalee Taylor, RN, MSN, CNS
Associate Clinical Director
Division of Pediatric Rheumatology
Cincinnati Children’s Hospital Medical Center
Thank you!

				
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language:English
pages:67