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Review ArticleREVIEWS AND CONTEMPORARY UPDATES

Summer Camps for Children with Sickle Cell Disease

Lauren Narcisse, Edward A. Walton and Lewis L. Hsu
Ochsner Journal December 2018, 18 (4) 358-363; DOI: https://doi.org/10.31486/toj.18.0045
Lauren Narcisse
1College of Medicine, University of Illinois at Chicago, Chicago, IL
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Edward A. Walton
2Medical Director, North Star Reach, Ann Arbor, MI
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Lewis L. Hsu
3Department of Pediatrics, College of Medicine, University of Illinois at Chicago, Chicago, IL
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  • For correspondence: lewhsu@uic.edu
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    Figure. Conditions that can cause severe health consequences in children with sickle cell disease.

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    Table 1. Coping Skills and Camp Accommodations for Children With Sickle Cell Disease
    Coping SkillCamp Accommodations
    Be flexible with your activity schedule.
    • Allow children to take rest breaks and drink often.

    • Prepare accommodations for children with impaired mobility because of avascular necrosis or stroke.

    Carry fluids and drink often.
    • Provide access to drinking water at all times with water bottles, water stations, and water breaks.

    • Encourage campers to drink even when they are not thirsty.

    • Recognize that sickle cell disease is associated with a high susceptibility to dehydration.

    Control your temperature.
    • Encourage campers to seek shade.

    • Require campers to wear hats.

    • Guard against children becoming chilled during swimming; swimming in an unheated pool may trigger sickle cell pain.

    • Require campers to take breaks from swimming every 20-30 minutes to dry off and warm up, even when they are swimming in a heated pool.

    • Adjust temperatures and/or allow campers to add layers of clothing so that they do not become chilled from air conditioning.

    Cope with extreme summer heat.
    • Do not schedule heavy exertion at midday; provide quiet time.

    • Remind campers and counselors to drink water every 30-45 minutes; have water jugs and cups at every activity station.

    • Distribute sunblock SPF 30 and above.

    Understand that the consequences of overexertion/exhaustion may be days of severe pain.
    • Enforce rest breaks and reasonable bedtimes.

    • Discourage staying up late and playing too hard because these activities may lead to days of pain.

    • Encourage counselors with sickle cell disease to be role models for prudent behavior and not to be afraid to ask for help or breaks.

    • Plan staffing flexibility so that counselors with sickle cell disease can call in backups or substitutes, rather than suffering and soldiering on for the kids to the detriment of their own health.

    Sense your body’s warning signs.
    • Help campers learn and understand how to try to head off pain or fatigue through rest, fluids, and pain medicine.

    • Help the group be supportive of fellow campers.

    Remember to take your daily medications.
    • Help campers understand the purpose of their medications, dosages, and frequency to encourage self-management.

    • Prepare to store and administer chronic medications such as hydroxyurea, folic acid, glutamine, penicillin, amoxicillin, or other antibiotics.

    • Prepare procedures for narcotic storage and administration for pain.

    • Prepare for storage and administration of asthma medicines that may be taken on a schedule and as needed for vigorous activities.

    • Encourage campers to adhere to medications that might be unpalatable.

    Manage bedwetting.
    • Provide absorbent disposable pads (chucks) for beds to prevent wet sheets.

    • Change all the sheets on all the beds according to a routine to eliminate stigma.

    • Allow campers or counselors to do their own laundry inconspicuously in the morning.

    • SPF, sun protection factor.

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    Table 2. Recommended Medications, Supplies, and Equipment for Summer Camps
    MedicationsSupplies and EquipmentNonmedical Equipment
    Relatively unique to sickle cell campOral acetaminophen/hydrocodone or acetaminophen/codeineNarcotic lockbox and log sheetsAbsorbent pads for beds in case of enuresis
    IV opioidsHot packs for analgesiaLaundry for bed linens in case of enuresis
    IV ketorolacHeated swimming pool
    IV naloxoneTemperature regulation in activity areas
    Common to most camps but particularly important for sickle cell campsOral NSAIDsOxygenReady access to water and bathrooms
    IV ceftriaxone or other broad-spectrum antibioticPulse oximeterWater bottles
    IV normal salineIV catheters and tubingElectric cart for transport of campers in pain or exhaustion
    IV hypotonic fluidRefrigerator for oral antibiotics and other medicationsShade in activity areas
    IV diphenhydramineNebulizer, tubing, aerosol maskExtra clothing so that campers can change from wet clothes
    Albuterol nebulizerCrutches/canes for assistance when campers are in painBed/recliner for rest when campers are in pain
    • IV, intravenous; NSAIDs, nonsteroidal antiinflammatory drugs.

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Ochsner Journal: 18 (4)
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Vol. 18, Issue 4
Dec 2018
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Summer Camps for Children with Sickle Cell Disease
Lauren Narcisse, Edward A. Walton, Lewis L. Hsu
Ochsner Journal Dec 2018, 18 (4) 358-363; DOI: 10.31486/toj.18.0045

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Summer Camps for Children with Sickle Cell Disease
Lauren Narcisse, Edward A. Walton, Lewis L. Hsu
Ochsner Journal Dec 2018, 18 (4) 358-363; DOI: 10.31486/toj.18.0045
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  • Article
    • Abstract
    • INTRODUCTION
    • SUMMER CAMPS FOR CHRONICALLY ILL PEDIATRIC PATIENTS
    • SUMMER CAMPS FOR CHILDREN WITH SICKLE CELL DISEASE
    • DIFFERENCES BETWEEN SICKLE CELL DISEASE CAMPS AND OTHER CHILDREN’S CAMPS
    • FUTURE PROGRESS
    • CONCLUSION
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