What should I do in case my child is injured or gets a bump?
You will learn, in a short period of time, to recognize serious injuries which need urgent medical attention. Severe bleeding is actually rare and you will usually have time to attend the treatment center. However, many mild episodes, as superficial hematomas, can be treated at home if the family is trained to do so. Anyway, doctors at the Hemophilia Foundation must always be consulted over the phone. The emergency service is available 24 hours a day. It is very important for people with hemophilia (PWH) to have a minimum stock of concentrates at home for emergencies. That will avoid going to the treatment center if the episode can be treated in their house and will help ease the patient and the family’s anxiety.
In case of wounds or cuts, the area must immediately be cleansed with soap and water. Chlorhexidine or hydrogen peroxide can also be used for rinsing. Afterwards, apply constant pressure with a dry gauze bandage. Doctors at the Foundation must be consulted in order to consider the need for stitching or infusing factor.
Should a child with hemophilia attend a special school? There is no reason to enroll a child with hemophilia in a special institution. However, it is important to guide teachers and school authorities through the basic concepts in hemophilia. What’s more, the Hemophilia Foundation organizes an annual meeting for parents, teachers and school authorities to provide them with information and to clear up their doubts.
Should a child attend the Hemophilia Foundation when he or she contracts an illness?
The child can continue consulting his or her pediatrician. Illnesses that are not related to hemophilia can be treated by the family doctor, who must know which medication can be administered and that he or she can contact the Foundation’s doctors when in doubt.
Can the child attend Physical Education classes?
Yes. Physical activity promotes neuromuscular development, muscle strength, coordination, general fitness, a healthy body weight and self-esteem. It is very important that PWH participate in the physical education class. The teacher must adapt the activity and the exercises to avoid contact sports, like football, wrestling, boxing and hockey, which can result in an injury.
Who can administer the clotting factor?
Besides health professionals, it is very important that the clotting factor can be administered at home. A family member or the person with hemophilia can infuse the concentrate once they have learned to prepare the factor, access the veins and safely infuse it while maintaining hygiene standards.
The person in charge must learn to recognize a bleeding episode, to assess its severity, to calculate factor dosage, to recognize an allergic reaction and to know the right steps of factor administration. That persona has to understand the importance of keeping contact with the treatment center as well.
Every year the Hemophilia Foundation offers factor administration workshops for the community. Fake arms are used to practice the technic. However, the actual factor administration is carried out individually while supervised by a professional.
Developing the right method for home treatment is a gradual process that takes time and practice.
Should PWH carry the clotting factor when travelling?
Yes. PWH must always have clotting factor in case of a hemorrhage or to continue prophylactic treatment. In the Foundation’s magazine, Conocernos, and in the section Treatment Centers of this website, you will find every place in Argentina a person with hemophilia can turn to in case of need. If the person is travelling abroad, the Social Service of the Hemophilia Foundation will provide the contact information of the international treatment centers. The social worker can also provide a travel letter that describes the medicine you take to present to customs officers.
What drugs are suitable for PWH?
PWH can take any drug EXCEPT FOR those that contain aspirin or acetyl salicylic acid.
Anti-inflammatory agents (diclofenac, ibuprofen, meloxicam, among others) must be taken in small doses and for short periods of time. As PWH have a higher risk of a hemorrhage in the digestive tract, it is suggested that they take a proton pump inhibitor when an anti-inflammatory drug is administered for a long period of time. Paracetamol can be taken in regular doses. In addition, intramuscular injections must be avoided because of the risk of severe hematomas.
Children with hemophilia must be vaccinated according to the national immunization schedule. When it is possible, it is recommended for them to use the subcutaneous route instead of the intramuscular route, like Hepatitis A and B vaccination. In that case, it is not necessary to infuse clotting factor before the injection. However, if the intramuscular rout is the suggested way of applying a vaccine, clotting factor should be infused 10 to 15 minutes before. In every case, after the vaccine, apply firm pressure for 10 minutes in the site.
CONTACT THE HEMOPHILIA FOUNDATION IN CASE OF DOUBT.
What should teachers know?
The fact that PWH can attend school and share everyday experiences with their peers is fundamental. Socialization, integration and inclusion will allow the teaching-learning process to take place and will help them assimilate social rules that will lay the foundation for fitting into society.
Teachers must know that giving first aid to a person with hemophilia is as useful as it would be for a person without hemophilia.
Suggestions for teachers:
- Never hide an episode or an accident that has happened at school, especially if it was a bump in the head.
- Call the student’s family in any situation that you consider relevant.
- Make sure the student with hemophilia does not engage in contact or high performance sports or any practice that involves intense competition.
Families and educators must together establish the criteria that will set the limits for the child or teenager with hemophilia, whose expected behavior will not be very different from the one displayed by their peers. Being overprotective can cause isolation. It is more effective to allow the person to grow into a healthy, well adapted and fully integrated adult.
What sports can PWH practice?
First, the selected sports should catch the person’s interest. However, it is suggested that PWH engage in noncontact sports and activities, such as walking, swimming, golf, cycling, tennis, rowing, table tennis, among others.