Disease Overviews

Flying Horse Farms currently serves campers with a variety of medical diagnoses, including cancer, heart conditions, rheumatoid arthritis, blood disorders, severe asthma, gastrointestinal disorders, craniofacial anomalies and rare diseases. The following gives a brief description of each disease category and some things to know as a camp counselor working with a specific population of children.

NOTE: During orientation, counselors will be provided with specific medical details about each camper that will be useful in caring for them while at camp.

This section includes information on:
• Asthma
• Bleeding Disorders
• Cancer
• Craniofacial anomalies
• Gastrointestinal (GI) Disorder
• Heart Disease
• Rheumatic Disease
• Sickle Cell Disease
• Rare Diseases

ASTHMA

What is Asthma?
Asthma is a common, chronic childhood disease of the airways that carry air to the lungs. These airways become narrow and their linings become swollen, irritated and inflamed. In patients with asthma, the airways are always irritated and inflamed even though symptoms are not always present. The degree and severity of airway inflammation varies over time.

The signs of an asthma attack:
• Tightness: The child may describe a tight feeling in his/her chest.
• Cough: A repeated short cough may be the first symptom (this occurs most often during the night and early morning hours).
• Rapid breathing: As the child attempts to move more air in and out of the lungs through the narrowed airway, he/she will breathe faster than normal.
• Wheezing: A whistling sound that occurs during obstructed breathing.
• Extended exhalation: Air tends to encounter more obstruction leaving the lungs rather than entering, so exhaling usually takes more time than inhaling.
• Retraction: During episodes of difficulty with breathing, the ribs and clavicle may be more visible as the skin is stretched by the greater effort it takes to inhale and exhale.

Treatment:
• Allergy medication.
• Inhalers: Inhaled medication to prevent attacks and used during an asthma attack.
• Nebulizer: Machine that administers the medicine in a mist which is inhaled.
• Peak Flow Meters: Used to check how well their lungs are able to move air out of their lungs.

What this means at camp:
• Avoid triggers that cause asthma attacks whenever possible.
• Campers may have decreased stamina/exercise tolerance but they can participate in exercise, running and playing. Campers usually know their limits but always need to be observed for changes in their condition.
• Keep camp clean and free of dust and dirt as much as possible.
• Counselors may need to carry campers’ inhalers at all times
• Allergies are more common in campers who have asthma–be aware which campers have specific allergies.

Go to/call the WellNest immediately if the camper complains of:
• Chest pain or tightness
• Complain that he/she “cannot catch their breath”
• Any of the other symptoms mentioned above

BLEEDING DISORDERS

What are bleeding disorders?
Normally, if you get hurt, your body forms a natural band aid or blood clot to stop the bleeding. For blood to clot, your body needs cells called platelets and proteins known as clotting factors. If you have a bleeding disorder, you either do not have enough platelets, clotting factors or they don’t work the way they should. If you a missing any of these components or have decreased levels or abnormalities that make the component not work correctly, you have an increased risk of bleeding.

Treatment:
• Factor replacement given IV (intravenous injection):
• Prophylaxis factor is given regularly as prescribed by the specialist
• As needed (PRN) factor is given only if there has been trauma, bleeding or before an activity that may cause a bleed
• Bleeds are also treated with ice, elevation and rest

What this means at camp:
• Camp activities are adjusted to decrease the risk of injury/trauma (i.e. no contact sports).
• Some will need to receive factor infusion prior to the activity.
• ANY HEAD TRAUMA IS AN EMERGENCY–call the WellNest
• Be observant: watch for swelling, bruising, complaints of limb pain, joint pain or joint swelling–call the WellNest with any questions.
• Some campers will tell you they have a bleed while other children will ignore symptoms because they don’t want an injection or don’t want to stop what they are doing.

CANCER

What is cancer?
Also called malignancy, cancer is characterized by an abnormal growth of cells. Cancer refers to over 100 separate diseases that can affect children or adults. Cancer is not contagious and about 70% of childhood cancers can be cured.

Treatment:
CHEMOTHERAPY:
• Medicine that attacks rapidly growing cells.
• Chemotherapy can be given as pills, shots or IV.
• Major side effects are hair loss, nausea and low blood counts, which increases susceptibility to infections, risk of bleeding, fatigue and photosensitivity (sensitivity to the sun).

RADIATION THERAPY:
• Targeted radiation aimed at destroying the tumor in a specific area.

SURGERY
• To remove tumor(s).

BONE MARROW TRANSPLANT
• Treatment with very high doses of chemotherapy and radiation to kill the cancer cells.
• Bone marrow treatment destroys the bone marrow (where all blood cells are made), so it must be replaced. In this procedure, the doctor can use the patient’s own bone marrow that was taken before the transplant and saved, marrow from a sibling or marrow from someone who is unrelated.

CENTRAL VENOUS CATHETERS
• IV medicines are often given through a central venous catheter.
• Broviac or Hickman’s has an external tubes that are located primarily on the chest.
• A port is a disc-like structure entirely under the skin, located primarily on the chest.

What this means at camp:
• Activities will be adapted for children with central lines, amputation, balance problems, etc.
• Campers currently receiving chemotherapy will need extra attention and supervision.
• ANY FEVER IS AN EMERGENCY–report all suspected fevers to the WellNest IMMEDIATELY.
• Campers with cancer will fatigue easily and must get in bed on time to get plenty of rest.
• May have increased risk of bruising and/or nosebleeds.
• Increased sensitivity to the sun and must use sunscreen.

CRANIOFACIAL ANOMALIES

What are craniofacial anomalies?
Craniofacial anomalies are a diverse group of deformities in the growth of the head and facial bones. Anomaly is a medical term meaning “irregularity” or “different from normal.” These abnormalities are congenital (present at birth) or are acquired through burns and other external incidents. There are numerous variations–some are mild and some are severe and require surgery.

What this means at camp:
• These campers may require extra assistance in breathing while they sleep. The cabin nurse and camper will set up the breathing machine in the cabin.
• Some campers require tracheostomies to help them maintain a stable airway. A tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube. The nurse and camper will care for this throughout the week.
• These campers often feel like outsiders because of the scars on their faces.

GASTROINTESTINAL DISORDERS

What are Gastrointestinal (GI) disorders?
Any disorder arising from the esophagus to the anus, including the stomach, pancreas, liver, gallbladder and the intestines. Intestinal damage can include abscesses (infection), strictures (narrowing), fistulas (abnormal tissue connection between the intestines and other parts of the body) and obstruction.

Symptoms:
• Abdominal pain
• Diarrhea
• Bloody bowel movements
• Lack of appetite
• Fever
• Fatigue
• Recurrent urge to have a bowel movement

Immune response symptoms:
• Vision problems or eye pain
• Joint problems
• Neck or low back pain
• Skin rashes

What this means at camp:
• Frequent bathroom stops: Campers may need to use the bathroom more frequently, and may have accidents. The camper may also be sensitive or embarrassed about the bathroom frequency or accidents.
• Dietary Restrictions: It is very important for our campers to follow the same diets they have at home. Dietary restrictions vary from person to person. Please check in with your cabin nurse for information on which campers require special diets.
• Activity: Campers may have activity restrictions due to weakened bones, possible joint involvement and may need extra times for rest.
• Campers on certain medications called corticosteroids can be moody at times.
• Make sure campers get plenty of fluids. Keep water bottles with you!
• Campers have an increased risk of infection so practice good hand washing and universal precautions. Please notify the WellNest immediately with any fever or other signs of infection.

HEART DISEASE

What is Heart Disease?
Heart disease is a congenital or acquired abnormality of the heart and/or its surrounding blood vessels. About 40,000 children are born annually with heart defects (8 of 1000 children born per year have some form of heart defect).

Pathophysiology:
NORMAL HEART:
Function: Acts as a pump to circulate blood throughout the body.

CONGENITAL DISEASE:
Children can be born with abnormalities such as a hole between 2 chambers, a leaky valve, a valve that is too tight, vessels connected in the wrong place, etc.

ACQUIRED DISEASE:
Children can get damage to the heart from other things–infections, genetic diseases or medicines that can affect how the heart functions.

Treatment:
SURGERY:
• Most children with congenital heart disease require surgery to correct the problems
• Some require heart transplant
• Some children may be essentially normal after surgery, and others will still have decreased tolerance for activities, etc.
• Some children will have devices to help their heart beat normally such as Pacemakers or ICD’s.

What this means at camp:
• For heart camp, everyone eats a lower sodium diet and drinks Gatorade.
• Rest is very important–many of these kids tire very easily. Lights out time is important and rest hour is for just resting.
• Campers may need to sit and rest during activities.
• Any camper with complains of dizziness, difficulty breathing, chest pain, irregular heartbeats, or “just not feeling right” should be evaluated immediately by a member of the medical team.
• Be aware of campers whose color is “off”.
• Children may be on intermittent or continuous oxygen and accommodations will be made in programing for these campers.

RHEUMATIC DISEASE

What is a Rheumatic Disease?
The rheumatic diseases are autoimmune diseases that affect the connective tissues of the body and can affect joints, muscles, skin, blood vessels and internal organs. The immune system is supposed to protect the body from foreign substances and respond to injury. An autoimmune disorder is when the body’s immune system is overactive and attacks its own body. Inflammation is the immune system’s normal response to invasion or injury. It helps prevent further tissue damage. Signs of inflammation are redness, swelling, pain and warmth. If inflammation goes on too long, it can cause damage to the body.

Symptoms:
• Joint pain
• Joint swelling
• Joint stiffness
• Trouble sleeping
• Problems walking
• Fatigue
• Fever
• Rash
• Sun sensitivity

What this means at camp:
• Many campers wake up with stiffness, which usually gets better as the day goes on. Mornings can be slow–children often have morning pain and stiffness.
• Exposure to cold can trigger stiffness or can also make it worse.
• Severity of disease/affected joints may affect or limit the camper’s activity level. Allow time to rest or stretch.
• These campers have increased photosensitivity. Frequent application of sunscreen is vital.
• Camper may fatigue easily. They need extra sleep and rest.
• Exercise won’t make their disease worse. Overuse may trigger pain or swelling, but will not cause any permanent damage.
• Activities may need to be adapted for campers with limited range of motions of joints.
• Some campers may wear splints or have other devices to help with mobility.

SICKLE CELL DISEASE

What is Sickle Cell Disease?
Sickle cell disease is an inherited blood disorder in which the red blood cells, instead of being round and flat, become sickle shaped under certain circumstances and can clog small blood vessels. This leads to lack of oxygen to tissues and results in severe pain. When sickle-shaped red blood cells get stuck in blood vessels this can cause episodes of pain called crises.

What this means at camp:
• Hydration is key and can prevent crisis. Campers with sickle cell disease need to stay hydrated to keep the blood from sludging
• They are prone to crisis if they are too cold, too hot or ill:
– Be especially careful to keep them warm and dry
– Avoid water play in cool weather
– Dry and warm them immediately after swimming in the Hatchery
• They have difficulty fighting off infections. Go to the WellNest immediately for any complaint of pain or fever.
• Do not use ice packs for pain!
• They may have trouble concentrating their urine, and often wet the bed. Limit fluids just before bed, and be sure they void just before bedtime.
• These kids tire easily. Encourage them to rest.

RARE DISEASES

What is a Rare Disease?
To be considered a rare disease it must affect fewer than 200,000 people in the US at any given time. At this time there are over 6,000 existing rare diseases.

What this means at camp:
• Camp activities are adjusted to each diagnosis on an as needed basis
• May require more time at “Club Med” due to the number of medications campers are on
• Encourage hydration and make sure campers get plenty of fluids
• Encourage good hand washing

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