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The greatest opportunities for success in school, employment, friendships and family relationships come during the teen years. Special planning for challenging situations may mean the difference between success and failure.
Teens with sickle cell disease should:
- Know their sickle cell team: doctor, nurse, social worker, psychologist.
- Experience increasing independence at routine visits (every few months) and sick visits (emergency room or hospital).
- Keep their identification card updated and ask the Sickle Cell Program staff about current educational materials.
- Know important phone numbers and who to call for concerns.
- Begin planning for transition to adult care at age 21.
- Make informed family planning decisions. Ask for genetic information about sickle cell disease.
- Know that dehydration, low oxygen levels (as with asthma), stress, exposure to cold temperatures and water, such as swimming and/or being out in the snow, can all increase sickling and cause pain – work to avoid triggers!
- Make sure to have a thermometer on hand anywhere they spend time.
- Fever – every episode of fever of 101 degrees Fahrenheit (38.4 Celsius) needs medical evaluation immediately. Do not wait. With temperatures of 99-100 Fahrenheit, call for advice. Do not give Tylenol, Motrin or other medicines to reduce a fever – call for advice.
- Stroke – Sickling to the brain can cause lack of blood flow, which can result in obvious, as well as more subtle strokes. Headaches, lack of attention, weakness of extremities or facial features, and visual changes can all be signs. Prompt evaluation is needed. Transcranial Doppler Ultrasound (TCD) is recommended for screening in patients with certain types of sickle cell disease.
- Priapism is a prolonged, painful erection caused from sickling. Immediate medical intervention is necessary for episodes lasting more than 30–45 minutes to prevent long-term damage.
- Pain can occur anywhere in the body, arms, legs, back, chest, hands or feet (dactylitis) as a result of reduced blood flow from sickling. May be treatable at home if not accompanied by fever. Call for advice. Work on coping skills along with medical treatment.
- Bedwetting can be a common problem in sickle cell disease. Many treatment options exist.
Call to be seen right away if:
- Fever – 101F (38.4C) or higher
- Color – very pale
- Behavior – isn't acting like usual self; won't wake up
- Stomach – vomits/has diarrhea more than once
- Color – jaundice (eyes or skin look yellow)
- Hands/Feet – swelling, tenderness, pain
- Nose – runny or stuffy nose
- Chest – cough without fever or chest pain
- Penicillin – Still extremely important in preventing serious infection. A 250 mg dose is given twice daily either in liquid or tablet form. Liquid needs to be kept in the refrigerator and must be refilled at the pharmacy about every 10 days. Tablets can be broken or crushed and taken with food. DO NOT put liquid penicillin in with other drinks.
- Folic Acid – B vitamin that helps your body to make healthy red blood cells. Many packaged and prepared foods, such as cereal and bread have added extra folic acid, so extra folic acid in tablet form may not be necessary, depending on your teen's diet and type of sickle cell disease.
- Tylenol/Acetaminophen – may be used for treatment of pain. Do not give for fever unless directed by a sickle cell doctor or nurse.
- Motrin/Advil/Ibuprofen – may be used for treatment of pain. Do not give for fever unless directed by a sickle cell doctor or nurse.
- Hydroxyurea (Hydrea) – helps to reduce painful episodes and chest syndromes when taken regularly for a few months. It is a longer-term treatment for sickling episodes. Available in capsules or liquid.
- All routine immunizations with primary physician, including Prevnar/Pneumovax
- Flu shot recommended every year.
- Tetanus booster between ages 14-16.
- TCD (Transcranial Doppler) – ultrasound of blood flow to the brain that screens for increased risk of stroke. Done every year until age 16, sometimes more often depending on results.
- Complete blood count (CBC) and Reticulocyte count (“Retic”) – done at all well and sick visits. Each patient will establish a baseline level that is important to know.
- Liver and kidney function tests and urine test are done every year.
- Hemoglobin electrophoresis (“sickle cell test”) – used to tell the difference between certain sickle cell disease types.
- Oxygen saturation (O2 Sat) – measurement of oxygen in tissue. Checked as part of routine vital signs in the clinic, and in the ER/Hospital when sick. Baseline level when feeling well is important to know.
- Has any special procedure or surgery planned and will need to be put to sleep (“general anesthesia”). Special lab tests and other arrangements will need to be made 1–2 weeks before the procedure.
- Will be traveling. We will give you a travel letter to use in case medical care is needed.
This short dramatization is helpful for young adults who have or may have the sickle cell trait. It illustrates the importance of knowing your sickle cell status when marrying or starting a family.
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- Children’s Hospital’s Sickle Cell Program staff can help teens communicate with staff at their school and advise their employer about their unique issues. The staff also can help teens connect with employment offices (OVR) or help with planning for college.
- Teens up to age 16 are eligible for Camp Escape, Children’s annual summer camp for children with sickle cell disease, established in 1999!
- For information about normal developmental and social milestones at this age, visit Children’s Child Health Library.
- For helpful information about managing your teen’s behavior, see Helpful Links.
- For information about helping your teen succeed in school, see Helpful Links.
- For employment guidance, visit: www.lifeoptions.org
- For information about Special Needs Pen Pals, visit: www.childrenswishes.org
The contents of Children’s Hospital of Pittsburgh of UPMC’s Web site are for informational and educational purposes only. Children’s does not give specific medical advice on its Web site. The content of this Web site is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because information contained on this Web site. The links provided on this webpage are for reference purposes only. Children’s does not manage or expressly endorse the contents of third party websites.
September 4, 2013
September 4, 2013