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«1 Sickle Cell & School: Bridging the Gap Between education & health care for children with sickle cell disease Handbook Table of Contents SICKLE CELL ...»

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Sickle Cell & School: Bridging the Gap

Between education & health care for children with sickle cell disease


Table of Contents


A resource guide for patients, families, & providers

 Introduction ~ What is sickle cell disease?

 Medical Issues ~ Fever, pain, chest problems, spleen, skin, neurological changes,

vomiting & diarrhea, priapism

 When Your Child is in Pain

 Emotional Issues ~ Preschooler, school age, teens, siblings  Transition Clinic – Pediatric to Adult Healthcare  Nutritional Services - Eating to Be Well With Sickle Cell Disease  Additional Support & Resources ~ Sickle cell disease, education, financial assistance, legal aid, government agencies, camps


IEPs, 504s, & the special education process  Education & Sickle Cell ~ Your child’s legal rights; Individualized health care plan;

504 plans; IEPs; Advocating for your child; Instructions for teachers  Section 504: A guide for parents  Understanding Sickle Cell Disease: Instructions for Teachers

Significant portions of this handbook were reproduced from:

Sickle Cell Disease: A resource guide for patients, families and providers. Produced by Philippa G. Sprinz, MD & Baystate Health, Springfield, MA, 2007.

Children’s Hospital Boston Sickle Cell Program: Information for Sickle Cell Disease for Teachers and School Nurses, Boston, MA 2007, 2009.

The Virginia Sickle Cell Awareness Program: Virginia Department of Health, Richmond, Virginia, 2006 Contact Information For more information or if you need to contact your provider, please use the appropriate phone number below.

Monday – Friday: 9am – 5pm Boston Medical Center 617-414-5725 (Administrator)

Emergencies, Evenings, and Weekends:

617-414-5000 to reach on-call doctor 617 638-5795 to page a doctor or social worker Philippa Sprinz, MD: ID# 2587 Amy Sobota, MD: ID# 3253 Maria Champigny, LICSW: ID# 5143 Children’s Hospital Boston Monday – Friday: 8:30am – 5pm 617 355-8246

Emergencies, Evenings, and Weekends:

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Sickle Cell Disease A resource guide for patients and families Introduction Children and families living with sickle cell disease often have many questions. This guide was created as a resource to help answer some of those questions and give families the knowledge they need to live and thrive with sickle cell disease.

What is Sickle Cell Disease?

Sickle cell disease is an inherited blood condition that affects red blood cells. In people with sickle cell disease, red blood cells, which carry oxygen throughout the body, are shaped like sickles or crescent moons rather than being round and donut-shaped. The sickle-shaped cells can prevent the blood from flowing properly in the body.

Most of the medical problems related to sickle cell disease occur due to poor blood flow.

A child will have sickle cell disease if he or she inherits two sickle cell genes – one from each parent. Sickle cell disease is believed to have originated from West and Central Africa. In the United States, it is most commonly found in African-Americans. It can also affect those whose origins are from the Middle and sometimes Far East as well as Southern Europe and the Caribbean. There are approximately 80,000 people living with sickle cell disease in the US. Each year about 2000 children are born with sickle cell disease in this country.

Sickle cell disease can affect many different organ systems in the body. When sickle-shaped red blood cells get stuck inside smaller blood vessels, this can lead to severe pain at times. Important organs like the brain, heart, and kidneys, which need a constant blood supply to work properly, can be damaged by sickle cells.

There is currently no standard cure for sickle cell disease. By receiving special medical care, people with sickle cell disease can lead long, healthy lives.

Medical Issues Sickle cell disease can lead to many medical issues that may vary depending on a child’s age and condition.

The information that follows addresses some of these medical complications and steps you can take to ensure safe and proper care for your child.

If you or your child notice that he/she is experiencing the following medical conditions, please contact your


Fever (a temperature greater than 100.5 F for a child under one year of age or greater than 101.5 F for children older than one year of age) Pain (either sickle cell disease pain or other pain) that has not responded to home pain medicines or is different in nature from usual Any new breathing problem: cough, wheezing, shortness of breath, tightness of the chest or chest pain For a baby, unexplained fussiness, change in feeding, and/or vomiting In the abdomen: An increase in spleen size In the skin: An increase in paleness of the skin For movements: Any change in strength, ability to use arms or legs, abnormal uncontrolled movements (seizures) or change on consciousness, even if very short lasting Vomiting or diarrhea Priapism: An erection of the penis that persists more than a few minutes or is painful Remember that people with sickle cell disease may become sick very quickly. Never hesitate to call your doctor if you have any concerns about a possible complication of your child’s sickle cell disease.

Fever Fever may be caused by a viral illness, a bacterial illness, dehydration or other conditions. Children with sickle cell disease take penicillin from birth to age 5 to try to reduce the risk of infection. Taking penicillin, however, does not guarantee to protect your child from a bacterial infection. Children also receive vaccinations against a group of infections known as pnuemococcal infections. These are known as Pneumovax® and Prevnar®. These also help to reduce the risk of infection but are not guaranteed to prevent your child from being sick and getting a fever.

You must make sure that you always have a thermometer to take your child’s temperature. If your child has a fever, your doctor may recommend a hospital stay for about 48 hours to determine if the infection needs ongoing antibiotic treatment, If your child has a fever, call your child’s doctor right away. Do not give Tylenol, do not wait to see if the temperature comes down, and do not only call if the fever persists. These will waste valuable time.

–  –  –

If your child has pain that is different than usual or does not respond to the pain medicines you have at home, call your child’s doctor for advice.

Remember to have your child’s doctor to refill pain medicines before they run out. Tylenol with codeine can be “called in” for a refill. Morphine, Dilaudid®, Methadone or other similar narcotics cannot be “called in.” Chest Problems Sometimes sickle-cell related problems in the chest may make your child very sick very quickly. If your child develops any new chest problems, such as coughing, wheezing, tightness of the chest, shortness of breath or chest pain, please call to the doctor right away. Your child may need a chest X-ray or to be admitted to the hospital to receive antibiotics and medical care while the chest problem resolves. Do not try to treat new chest problems at home on your own.

If your child has any new chest problems, call your doctor for advice right away.

Increase in Spleen Size Younger people with sickle cell disease may sometimes develop an enlarged spleen, which is when this organ on the upper left side of the body becomes full of blood. This is called splenic sequestration. Your doctor should show you where your child’s spleen sits, how to feel for it, how to recognize if it is enlarged, and when to seek medical attention. If you suspect your child’s spleen is enlarged, you should check and see if you can feel it. If you think you can feel it you must call your doctor right away. Even if you cannot feel an enlarged spleen, if your child is fussy or irritable and you don’t know why, please call your doctor.

Increase in Skin Paleness Children with sickle cell disease can occasionally become very anemic due to either splenic sequestration or a parvovirus infection (aplastic crisis), which is an infection that causes the bone marrow to stop producing red blood cells.

Sometimes it is difficult to recognize anemia in the skin. If your child looks pale or is more tired than usual, is experiencing headaches, dizziness or shortness of breath, or is fussy and irritable or shows signs of an enlarged spleen, call your child’s doctor immediately as a significant anemia may be present.

If your child is pale or has signs and symptoms of anemia, call your doctor right away.

Neurological Changes Children with sickle cell disease have an increased risk of problems with the blood vessels of their head.

Because sickle cells can get stuck in the vessels of the brain, people with sickle cell disease are at an increased risk of having a stroke, or a transient ischemic event (a short-lasting brain event.) Your doctor needs to know about such an event immediately to take care of your child quickly. If your child experiences any weakness of arms or legs, altered consciousness, difficulty in speaking or thinking, or any seizure-like activity (abnormal, uncontrolled movements), you must call your child’s doctor immediately. If your child has lasting altered consciousness, do not take the time to call your doctor, but dial 911 or the emergency number for your area and have your child taken to hospital, where your doctor can then help.

If your child has any neurological changes, including weakness, altered consciousness, difficulty speaking or thinking, or seizures, call your doctor or 911 or the emergency number for your area immediately.

–  –  –

It is important for good health for individuals with sickle cell disease to drink plenty. Vomiting and diarrhea lead to loss of body fluid. If your child does experience any vomiting or diarrhea and can take fluid by mouth, clear liquids such as water, Gatorade, Powerade, punch, iced or hot clear tea, or similar liquids are better than a milk-based product at this time. If your child experiences vomiting or diarrhea, call your child’s doctor for advice. Your child may need to be admitted to hospital for intravenous fluid.

If your child experiences vomiting or diarrhea, call the doctor for advice.

Sustained or Painful Erection of the Penis This is called priapism and is another complication of sickle cell disease. It is important that boys with sickle cell disease know that this is something not normal that they can experience because they have sickle cell disease.

If a boy does have a painful or protracted erection of the penis, please be sure to contact the doctor. Sometime just pain medicines and fluid will help resolve this problem. Other times, however, a blood transfusion or surgery is necessary. If this problem is not addressed quickly, and particularly if the problem recurs, it is possible that impotence would be the eventual outcome.

If your son experiences a painful or long last erection of the penis, call the doctor right away for advice on how to resolve this.

Table 1: Physical Complications Caused by Sickling

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• Not all these complications occur in every child with SCD. You need to know, however, that they can happen. Ask parents about their child’s history regarding complications.

Table 2: Physical Complications: Warning Signs

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When Your Child is in Pain Pain can be a life-long challenge for those living with sickle cell disease. In addition to medical intervention, there are a number of non-medical approaches that may help your child better cope with pain.

To best help your child when he/she experiences pain, you should take responsibility for managing the pain. You should be alert to when your child starts having pain and, at that time ask him/her to rest, to stay warm, to take a warm shower or use a heating pad. You should give Tylenol® or Motrin® as your doctor will have advised. It is often helpful if your child drinks clear liquids at the time of a painful crisis. If the pain does not settle with Tylenol® or Motrin® and you have stronger medicines at home, use the medicines as your child’s doctor has prescribed. If your child’s pain continues even after you have given your child the prescribed pain medicines, call your child’s doctor. It may be that your child’s pain would be best managed in the hospital.

While you are trying to resolve your child’s pain, you may want to try one or more of the following techniques.

Some of these you may be able to provide yourself. Others you will need to ask your doctor about.

Acupuncture is based on the belief that life forces move through the body in specific paths. These paths are called meridians. With acupuncture, a needle is put into the meridian that runs to the area where your child is having pain. This needle blocks the meridian, which stops or decreases the pain.

Aromatherapy is a way of using good smells to help your child relax and decrease pain. Candles, massage oil, scented bubble baths, and even baking cookies are all ways that smells are used. Scientists are learning that good smells may change your child’s mood and help him relax. It may also help your child’s brain make special chemicals like endorphins, which can help decrease pain.

Breathing exercises are another physical way to help your child’s body relax. Teaching the body to relax helps lessen pain. You should teach your child to breathe in and out very slowly. A fun way to practice breathing slowly is to blow soap bubbles or a party blower. Your child will know he is doing great when he gets large bubbles or the blower makes long noises.

Control often helps children have less pain when they need to have medical procedures. If they understand what is going to happen and are allowed to help, they may experience less pain. For example, let your child choose the finger that will be poked for a blood sample. Or, let him put on the bandage. Also, caregivers may explain treatments and procedures using a doll to help decrease the fear of the unknown.

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