Our hotline is here for you 24 hours a day/7 days a week: Dial 211
About Us
Agency for Persons with
Disabilities/Medicaid Waiver Program
Assistive technology How others show respect Using respectful language

 

 

What is a Blood Disorder?


Many different problems of the blood are called blood disorders and also called Hematological Disorders. Here are some more common types of blood disorders:

ANEMIA happens when the number of red blood cells is low. When red blood cells are low, the blood can't carry enough oxygen. Several different blood disorders are types of anemia.
  • Iron-deficiency anemia, the most common type of anemia, is caused by not eating enough meat, green vegetables or other iron-containing foods. It is sometimes caused by eating lead from paint (in old buildings) or dirt (in yards or playgrounds). This mild anemia can make your child tired, pale and weak as well as affect how your child grows. More severe anemia may cause your child's skin or eyes to look yellow and bring faint or dizzy feelings. Severe cases can cause severe leg cramps, chest pain or shortness of breath.

  • Sickle Cell Disease is a type of severe anemia. Here, red blood cells are shaped more like half-moons instead of their normal "full-moon" shape, causing cells to bunch up rather than slide through the arteries and veins. These children often have pain crises, perhaps at unpredictable times and requiring staying overnight in the hospital. These children also can have problems with school performance, with vision, and with growth. This is an inherited condition (passed from parents to children), most often among persons of African or Mediterranean ancestry.

  • Hemoglobin diseases are inherited conditions similar to Sickle Cell Disease, but usually much milder.

  • Thalassemia, another inherited condition of the red blood cell, may be severe or mild, depending on its sub-type. All sub-types of thalassemia are inherited conditions common in people whose ancestors come from the Mediterranean or the Middle East.
BLEEDING AND CLOTTING DISORDERS happen when the blood's normal chemicals are not working well. These chemicals, sometimes called coagulation factors, change blood from a liquid to a solid (scab). Persons with this disorder tend to bleed longer. These disorders can result from problems with the blood vessels or in the blood itself. The condition can from mild or severe. Some signs of bleeding disorders include unusual bruising, swollen joints, frequent or prolonged bleeding and blood in the urine or stool.
  • Hemophilia is the most common type of bleeding disorder. Children with hemophilia and other bleeding disorders often require regular injections to prevent severe bleeding. This inherited disorder occurs almost only among boys. Visit www.hemophilia.org to read more about hemophilia.
LEUKEMIA AND LYMPHOMA are types of cancer that occur in the blood. To learn more about these diseases, click here.

Aplastic Anemia is a very severe type anemia, similar to leukemia, that is caused when the bone marrow stops making red blood cells.

National Hemophelia Foundation 2005 and The Merck Manual


You have made an important first step by reading more information on blood disorders. Below are some checklists of things to help your child. Remember that you are not alone.

"GETTING STARTED"
THINGS I CAN DO TO HELP MY CHILD WITH A BLOOD DISORDER


IN THE STATE OF FLORIDA:
 Contact Children's Medical Services (CMS) for medical care for my child. CMS provides local offices and will sometimes refer children to medical centers that work with CMS. They provide different services to help care for children with disabilities, special needs or major medical conditions. These services can range from early intervention programs such as Early Steps, to services for a specific medical condition.



 Work with my child's service providers: A service provider is anyone who works with you and your child. It can be your pediatrician, a teacher, a principal, a social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child's life. Service providers help you and your child. Here are tips for speaking with service providers:
  • Feel free to ask questions and make comments. No one knows your child better than you do. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.

  • If you think your child needs something in particular (like a speech evaluation or assistive technology), keep asking until you get it or until you understand why it is not needed.

  • If your child's blood disorder is severe you may need to use your school system's hospital or homebound service to provide an education for your child.
Your child may need a Section 504 educational plan to make sure your child's educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973, allowing qualified children with chronic illness to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html

 Get more information: Visit more websites. Read a book. Watch a video on blood disorders. Include your child and family.


 I will have my child wear a Medic Alert bracelet This is important because in case of an emergency vital information on your child's condition is available.

 Learn about a Section 504 Education Plan. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html

 Become an advocate when my child needs education accommodations Work with teachers to develop reasonable expectations about your child's school performance. Get training to be an education advocate. Organizations such as Parent to Parent of Miami  can give you that training free and will come to meetings with you at the school. You already have learned to be your child's advocate in the medical setting. You may need to do many of the same things in the school setting. Special laws and policies will help you to get help your child. Learn them.

Parent to Parent of Miami
7990 SW 117th Ave./Suite 201
Miami, Fla. 33173
Tel: (305) 271-9797
Fax: (305) 271-6628
Email: info@ptopmiami.org
http://www.ptopmiami.org/


Learn about an Individualized Family Support Plan (IFSP). The IFSP team should include you along with the other professionals who need to be part of your child's early intervention program at home.

 Talk with my child's teacher often.
Share this information or other information about your child's disease with your child's teacher at the beginning of the school year. Keep the teacher updated on any changes in your child's medical condition.

Share with the teacher and school any limitations to physical education at school. This should be clearly written on the Yellow Form that your child's doctor must complete before your child can enroll in school.

Sometimes blood disorders, such as Sickle Cell Disease, can affect how your child learns. Some examples of accommodations (special things to help your child) that may help for various problems in school are:
  • A calculator for math.
  • A tape recorder for lectures and to record homework.
  • Keyboards for writing.
  • Voice recognition software (turning voice recording into typed words).
If your child has a problem with written tests, ask the school to allow your child to take tests orally.

If your child has reading, comprehension or memory problems, ask for books-on-tape, also known as "talking books."

 Consider family counseling
Family counseling can help parents strike the right balance between overprotecting the child and giving too much freedom.

 If my child has Sickle Cell Disease:
Keep your child at a constant warm temperature. Being cold can make the pain worse.

Encourage your child to drink a lot of fluids to prevent a sickle cell crisis.

Visit the doctor and specialist at least once a year. Your child may need special vaccines or medicines to prevent infections.

 If my child has Thalassemia
Encourage children to be independent. Don't overprotect - thus, teaching them helplessness and the necessity to depend always on you or someone else.

 If my child has Hemophilia
Make sure your child wears protective gear -- helmets, elbow guards, wrist guards, knee guards -- during play or any physical activities. This is especially important for bicycling, roller blading, skateboarding and contact sports.

Work with your child's doctor to make a written Action Plan to keep your child safe. This Action Plan should include what to do in an emergency. Share this health plan with all the adults who care for your child, including teachers and school staff.

Make sure that your child's play and fun activities are healthy and safe.

Help your child's friends and classmates understand the need for safety around your child.


return to table of contents

What can I do to help my child?


Blood disorders, including iron-deficiency anemia, affect at least 1 in 5 children. More severe, inherited blood disorders affect less than 1 in 100 U.S. children, but they are more common among African Americans. Sickle Cell Disease is the most frequently inherited blood disease. Affecting about 1 in every 400 babies of African ancestry. Hemophilia affects 1 in every 5,000 boys born in the U.S.
Fletcher-Janzen & Reynolds & The Merck Manual



return to table of contents

Do many children have blood disorders?


There are no cures for the inherited blood disorders. The minor forms of blood disease don't even need to be treated. Just watch to make sure they don't get worse or cause new problems. For each of the severe diseases, medicines can help prevent serious infection, bleeding and other health problems. For sickle-cell and hemoglobin diseases, children may need special medicine and special exercises to help treat the pain. For bleeding disorders, children may need emergency access to special injections or blood transfusions if they are injured. For some children with bleeding disorders, injections or transfusions may be needed just to prevent emergencies.

Most children with blood disorders should not take aspirin or ibuprofen (Advil, Motrin) because they may cause your child to bleed more easily. Many children with blood disorders also are at risk for problems with their liver or spleen.

Most children with blood disorders should avoid contact sports. If they do participate, they should do so under careful conditions as recommended by their doctor.

Each bleeding disorder can affect different children in different ways. It is vital to discuss your child's specific blood disorder with your child's doctor.

Fletcher-Janzen & Reynolds, The Merck Manual, & University of Miami School of Medicine



return to table of contents

What does a blood disorder mean for my child’s health?


There are no cures for the inherited blood disorders. The minor forms of blood disease don't even need to be treated. Just watch to make sure they don't get worse or cause new problems. For each of the severe diseases, medicines can help prevent serious infection, bleeding and other health problems. For sickle-cell and hemoglobin diseases, children may need special medicine and special exercises to help treat the pain. For bleeding disorders, children may need emergency access to special injections or blood transfusions if they are injured. For some children with bleeding disorders, injections or transfusions may be needed just to prevent emergencies.

Most children with blood disorders should not take aspirin or ibuprofen (Advil, Motrin) because they may cause your child to bleed more easily. Many children with blood disorders also are at risk for problems with their liver or spleen.

Most children with blood disorders should avoid contact sports. If they do participate, they should do so under careful conditions as recommended by their doctor.

Each bleeding disorder can affect different children in different ways. It is vital to discuss your child's specific blood disorder with your child's doctor.

Fletcher-Janzen & Reynolds, The Merck Manual, & University of Miami School of Medicine



return to table of contents

What does a blood disorder mean for my child’s learning?


Some children with blood disorders may have learning problems. Your child may need some accommodations (help or changes made to meet any special needs or problems in school). The learning problems will differ depending on your child's blood disorder. But you always will help your child most if you are aware of problems as they develop.

Sickle Cell Disease: Children with Sickle Cell Disease may have problems with learning, because their brains may be affected by poor blood supply. Learning also may be affected if they miss school for frequent doctor's visits or overnight visits to the hospital for pain.

Thalassemia: Children with some types of Thalassemia, especially Beta-Thalassemia Major, may grow more slowly. They may mature and reach puberty later than children without the disease. Children who receive blood transfusions over a long period of time can have problems with the ability to reason, remember and understand.

Hemophilia: Children who have had bleeding in the brain can sometimes have problems with remembering, learning and reasoning.

If your child's brain function is affected by one of these diseases, your child's ability to understand and reason may worsen slowly over time. You can help your child by watching carefully for signs of a change. The most common warning signs:
  • Your child has trouble paying attention for long periods of time.
  • Your child has problems remembering information that he or she heard or understanding what he or she read.
  • Your child can't write quickly or correctly.
  • Your child has trouble with planning and organizing anything, including homework.
Fletcher-Janzen & Reynolds, The Merck Manual, & University of Miami School of Medicine



return to table of contents

Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she work with children.

Pediatric hematologist: A doctor who specializes in treating children with diseases or conditions of the blood.

Geneticist: A doctor who specializes in the study of DNA and heredity; they work directly with parents and families that may be at risk of having diseases and conditions that pass from parents to children through genes.

Pediatric neurologist: A doctor who specializes in treating conditions of the nervous system and the brain in children.

Certified pediatric nurse practitioner: A nurse who has taken advanced training in treating pediatric patients and may specialize in the care of children with specific conditions, like sickle cell disease.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.


return to table of contents

What are some websites where I can learn how to help my child?


Sickle Cell Disease Association of America: http://sicklecelldisease.org A comprehensive website on Sickle Cell Disease.

Sickle Cell Kids: http://www.sicklecellkids.org An educational website for kids with Sickle Cell Disease.

National Hemophilia Foundation: http://www.hemophilia.org A comprehensive website with information on bleeding disorders. It also includes information for teachers and child care providers.

KidsHealth for Parents: Bleeding Disorders in Children: http://www.keepkidshealthy.com/welcome/conditions/bleeding_disorders.html This is written by a doctor giving a comprehensive overview of bleeding disorders and links to resources and related articles.

NIH MedlinePlus: http://www.nlm.nih.gov/medlineplus/bloodandblooddisorders.html A comprehensive source of links which providing news, overviews, diagnosing, symptoms, treatments, clinical trials and related issues pertaining to blood disorders. It is a service of the U.S. National Library of Medicine and the National Institutes of Health.

Bandaids and Blackboard: http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.


return to table of contents

What are some books I may want to read with my child with a blood disorder?


Henry and the White Wolf by Tim Karu, Tyler Karu (Illustrator). This book shows children and adults a way to talk about feelings that arise with chronic illnesses and disorders. It offers hope and healing for children undergoing difficult medical procedures. (Ages 4-8)

Sickle Cell Disease (Health Watch) by Susan Dudley Gold, Lillian McMahon. Sickle Cell Disease is explained through the life story of a boy, Keone Penn. The book teaches about the disease color photographs and diagrams to illustrate the text. (Ages 9-12)




return to table of contents

Brought to you by The Early Childhood Initiative Foundation and United Way Center for Excellence in Early Education


We're always here for you: 211
Copyright © 2001-2009 All rights reserved. | Terms of Use | Site maintained by PC Depot!
Information in this site is intended for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional. Please review the "Terms of Use and Copyright" before using this site.