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FAQs for Parents and Families

FAQs: Newborns & Infants

Is circumcision recommended for baby boys with hemophilia? What are the potential complications, and how long can parents wait to decide?

When a baby starts teething, is there excessive bleeding when teeth come in? What should we expect and look out for?

What should we look out for when examining a baby at bath time and checking for bleeds?

Is it normal if a baby who has hemophilia has a very red anus? Is this something to be concerned about?

What treatment or actions need to be taken for a child with mild hemophilia?

What are some strategies to help parents to cope with the diagnosis of hemophilia in a new baby? How do we deal with the stress and feelings of resentment toward other parents whose babies are healthy?

When is it necessary to tell others that a baby has been diagnosed with hemophilia?

What are some tips for protecting a baby around the house or when playing?

If a new baby is diagnosed with hemophilia, should other family members be tested? What if there is no family history of the condition? Might others be carriers?

What are some ways to help extended family members cope with their shock or fear over a new baby’s hemophilia diagnosis?

What are the risks of using factor treatments? Can they transmit diseases?

Is there any support available for parents raising a child with a bleeding disorder?

Q. Is circumcision recommended for baby boys with hemophilia? What are the potential complications, and how long can parents wait to decide?

A. The decision to circumcise a son is deeply personal. It is commonly performed as part of a religious practice, sometimes for medical reasons, or simply as a personal preference. Although it is a widely debated topic, there is no "right" answer. If there is a medical reason, or there are irrevocable religious reasons, and parents decide to go through with the procedure, then it must be carried out very carefully with full hemophilia protection. This may require that the baby stay in the hospital for a few days to receive factor replacement therapy. Before deciding, it is very important that parents discuss their options with their healthcare team and be fully prepared for the procedure.

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Q. When a baby starts teething, is there excessive bleeding when teeth come in? What should we expect and look out for?

A. Most babies, even with severe hemophilia, don't have much trouble when their teeth come in. To help them with teething pain, ask the baby’s healthcare team for recommended teething aids. Some parents have reported that a cold facecloth to chew on seems to relieve some of the discomfort for their baby. Even when babies start to lose their baby teeth, the teeth are pushed out very slowly so there is usually only a minimal amount of bleeding.

A more common mouth bleed is not caused by teething but rather an injury to the mouth. The delicate piece of tissue between the top lip and the gum is often injured in babies. It may seem like there is excessive bleeding because the babies saliva will mix with the blood, but generally the bleed will stop quickly. However, in a child with severe hemophilia, the bleed may restart because healing is easily disturbed by movement during eating or chattering. If this occurs or you have concerns, speak to your hemophilia care team.

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Q. What should we look out for when examining a baby at bath time and checking for bleeds?

A. Newborns and infants can't tell you about their pain or discomfort, so it is up to parents and other caretakers to routinely check for signs of a bleed. Bath time is a great opportunity to examine a baby in a fun and relaxed atmosphere. To prevent slipping, use a sponge rubber mat to line the tub. You will probably notice external bleeds (cuts and scrapes) easily, but internal bleeds in joints, muscles, or the head are more difficult to diagnose and are more dangerous to your child. Here are some steps you can take:

  • Compare one arm to the other, and one leg to the other.
  • Are both limbs the same size and shape?
  • Are both arms moving and bending equally well?
  • Are both legs and feet moving and bending in the same way?
  • Are there any signs of swelling or bruising?
  • Check for any bruises on their body that might indicate that they have fallen which could have caused internal bleeding.

If you think a child is experiencing a bleed, contact their doctor or hemophilia nurse coordinator.

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Q. Is it normal if a baby who has hemophilia has a very red anus? Is this something to be concerned about?

A. A lot of babies develop small tears around the anus. They are called "anal fissures" and are a result of passing hard stools. It upsets the baby because it is painful when they have a bowel movement. Babies with hemophilia may have a little more bleeding than usual. Fissures heal up easily if stools are softened, so ask the family doctor or pediatrician for guidance with this. A baby with hemophilia who has an anal fissure doesn't usually require specific hemophilia treatment, but speak to their hemophilia care team if you have concerns.

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Q. What treatment or actions need to be taken for a child with mild hemophilia?

A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.

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Q. What are some strategies to help parents to cope with the diagnosis of hemophilia in a new baby? How do we deal with the stress and feelings of resentment toward other parents whose babies are healthy?

A. Most parents expect the birth of a baby to be a time of joy and celebration. However, new parents are often surprised to find that they are often anxious and have feelings of inadequacy. When a baby is diagnosed with a chronic illness, whether at birth or during the child's early years, it can be emotionally draining and add to a new parent's worries and insecurities.

It is not uncommon for parents to feel overwhelmed, shocked, frightened, angry, or even resentful. Dealing with the diagnosis of hemophilia—even if parents are prepared for the possibility because of a known family history—is difficult. To reduce the amount of emotional impact on the parents, the child, and the rest of the family, it is very important to keep a positive outlook and reach out to the support people available. Families should remember that they are not alone, and there are many services to help people adjust to being new parents.

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Q. When is it necessary to tell others that a baby has been diagnosed with hemophilia?

A. Telling people about a baby's hemophilia diagnosis is a personal decision. However, if you are leaving your child in someone else's care it is important that they are aware of their condition. Your child might be cared for by other people including family, friends, babysitters, teachers, and neighbours. Sharing information with them is very helpful and is the best way to prevent misunderstanding and anxiety about your child's care.

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Q. What are some tips for protecting a baby around the house or when playing?

A. The same care that all parents take in childproofing their home and purchasing toys applies to households with a baby with hemophilia. You should cuddle, play with, and enjoy your baby just like any other child. Once babies are around four months old, they may start rocking from side to side, rolling over, creeping, crawling, and lifting themselves up against furniture. Take the same cautionary measures every parent should take to protect them by removing pointed objects, covering table corners with protectors, securing bookshelves to walls, and removing any objects that have a dangling cord that can be grabbed and pulled down on them. You may also want to purchase crib padding.

As early as 7 or 8 months babies might start standing and taking their first steps. During these stages you may want to use knee and elbow pads to prevent bruising. Many Hemophilia Treatment Centres (HTCs) also recommend the use of helmets for children up to the age of 2. It is a good idea to discuss use of padding and helmets with your family doctor or a member of your HTC team. Later in life, children with hemophilia may experience bleeds in their ankles and toes— so help protect their ankles and feet as the child grows up by purchasing good quality footwear.

As your child grows, take note of their activity level, the amount of bruising they have, and the amount of treatment needed so that you can make an informed decision with the medical team. You can also ask your healthcare team to provide additional information on safety issues around the home and at play.

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Q. If a new baby is diagnosed with hemophilia, should other family members be tested? What if there is no family history of the condition? Might others be carriers?

A. Dealing with a diagnosis of hemophilia is difficult, not just for the patient and parents, but for the extended family as well. In about 3 out of 10 cases, a diagnosis of hemophilia is unexpected as there is no family history of the condition. The hemophilia gene may have been passed "silently" through generations without anyone in the family showing symptoms. Or the gene mutation could have occurred spontaneously for the first time in a single family member, rather than being inherited.

In a family with no previous history of hemophilia, the carrier status is usually sought in other family members after a first-time diagnosis in a baby or young child. Healthcare professionals will discuss the option of having the women in the family undergo genetic testing to determine if someone is a carrier of the hemophilia gene. A positive carrier diagnosis in one female family member suggests there may be other females affected—and could affect their decisions about having children. Hemophilia Treatment Centres can provide genetic testing as well as follow-up counseling from a genetic counselor or family physician.

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Q. What are some ways to help extended family members cope with their shock or fear over a new baby’s hemophilia diagnosis?

A. It’s natural for extended family to feel shock and discomfort at learning that a loved one’s baby has hemophilia. They may have fears about their own children’s health, or be nervous about caring for the affected child. Education and open communication is key. Make sure family members understand how the hemophilia gene is passed on in families, and talk to healthcare providers about who else should be tested. Help family members to learn about what special care the child needs so they can feel more confident getting involved. Most of all, remind everyone that a new baby is a joy regardless of his or her health—and this one will need the support of the entire family.

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Q. What are the risks of using factor treatments? Can they transmit diseases?

A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.

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Q. Is there any support available for parents raising a child with a bleeding disorder?

A. Raising a child with a bleeding disorder can be a significant challenge for parents and other family members. Luckily there is support available to help parents cope with these challenges.
Parents Empowering Parents (PEP) is a program designed to promote effective parenting skills to parents of children with hemophilia. PEP also helps educate and support parents through classroom discussions and exercises. Learn more about the PEP program here >

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FAQs: Toddlers

Are hard foods (for example, apples) safe for toddlers with hemophilia, or will they cause gums to bleed?

Is it safe to let our teething child chew on objects that they want to put in their mouth?

Is it okay to brush the teeth of a child with hemophilia? What if they only have a few teeth? Is there a risk of gums starting to bleed?

How can we protect a young toddler who tries to climb out of their crib?

What kind of padding or other safety precautions do we need take around the house to protect a toddler with hemophilia?

Do all bruises on a child with hemophilia need to be treated?

What treatment or actions need to be taken for a child with mild hemophilia?

What do daycare staff need to know about a child with hemophilia?

What precautions need to be taken during or after immunizations? How do you know if symptoms are a bleed or reaction to the immunization?

Is prophylaxis a good idea if a toddler has difficulty tolerating needle sticks? Won’t prophylaxis require even more frequent jabs?

What’s the best way to handle temper tantrums during which a child might injure himself?

How can families cope with a sudden, unexpected diagnosis of hemophilia in a toddler?

What are the risks of using factor treatments? Can they transmit diseases?

Is daycare safe for a child who has hemophilia? What should parents look for in a daycare centre?

Will a child with hemophilia experience different separation anxiety over going to daycare than that of a child who doesn't have hemophilia?

Will hemophilia delay toilet training or the development of physical skills?

Should children with hemophilia wear protective clothing or a helmet while at daycare?

Can Hemophilia Treatment Centres (HTCs) find or recommend a daycare centre?

Q. Are hard foods (for example, apples) safe for toddlers with hemophilia, or will they cause gums to bleed?

A. If a child has healthy gums, which most children have, then you shouldn't be concerned about hard foods. If you do notice any bleeding, take the child for a dental checkup with a pediatric dentist familiar with hemophilia. You can always ask your Hemophilia Treatment Centre for a recommended dentist.

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Q. Is it safe to let our teething child chew on objects that they want to put in their mouth?

A. Teething children—especially at that exploratory toddler age—will often try to put anything they find in their mouths. However, you need to be careful they don’t have access to things on which they might cut their gums—so try to put keys and metal objects where the child can't get to them. There are several good teething rings on the market, made specifically for young children who are cutting teeth, that your child can use safely. Keep teething rings in the refrigerator—chewing on a cold teething ring seems to make the gums feel better.

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Q. Is it okay to brush the teeth of a child with hemophilia? What if they only have a few teeth? Is there a risk of gums starting to bleed?

A. Brushing a child’s teeth is generally recommended as soon as they have any, to promote good oral health. Toddlers have healthy gums and the massage alone helps to keep them healthy. Normal daily brushing is good for your child, but you can always speak to your hemophilia care team or a dentist if you have concerns about how to brush.

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Q. How can we protect a young toddler who tries to climb out of their crib?

A. Young toddlers are naturally curious, so you will need to take some extra precautions. You can lower a child’s crib mattress so that they cannot climb out. If the child is tall then it might be time to put them into a bed, which is an important part of any child’s development. You can try putting cushions on the floor beside the bed at first, until they get used to sleeping in a bed.

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Q. What kind of padding or other safety precautions do we need take around the house to protect a toddler with hemophilia?

A. Since toddlers can be quite active and curious, it’s good to take safety precautions for a child with or without hemophilia—but for one with the condition, you must pad any sharp corners around the house. This will still allow them to explore freely and learn to set their own limitations, safely. You should avoid "padded room syndrome," but there are things you can do to help a child be more stable—like letting them run around the house in bare feet or making sure that their socks have traction. You should also be sure the child’s shoes fit properly so that they are less likely to trip.

Many Hemophilia Treatment Centres (HTCs) also recommend the use of helmets and/or knee and elbow pads for children up to the age of 2. It is a good idea to discuss use of padding and helmets with your family doctor or a member of your HTC team.

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Q. Do all bruises on a child with hemophilia need to be treated?

A. Generally, most children with hemophilia bruise easily and so will frequently have bruises on their bodies, sometimes on their shins (from walking and bumping into things) and sometimes under their arms where people pick them up. Treating every bruise would be next to impossible, and they usually heal. However, it is important to treat all muscle and joint bleeds. If you are not sure whether a toddler needs treatment, call their doctor, nurse coordinator, or Hemophilia Treatment Centre.

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Q. What treatment or actions need to be taken for a child with mild hemophilia?

A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.

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Q. What do daycare staff need to know about a child with hemophilia?

A. Daycare staff need to be taught about a child's hemophilia: how it affects the child, what safety precautions must be taken, what treatment or special care the child requires, and what to do in case of an injury or emergency. The nurse coordinator at your Hemophilia Treatment Centre can help with educating daycare staff, and there are also several booklets and other educational materials available.

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Q. What precautions need to be taken during or after immunizations? How do you know if symptoms are a bleed or reaction to the immunization?

A. When a child with hemophilia has an immunization, the healthcare provider should use the smallest needle possible (like a #27 gauge), and hold pressure on the injection site for longer than usual—generally about 5 minutes—to stop bleeding.

Sometimes the area of the immunization (like the child’s arm or leg) will become red and swollen after the shot. Generally these are just from immunization and will get better with time. Medication with acetaminophen (like Tylenol®) often helps with these reactions. However, if a child stops moving the limb, they may have developed a bleed in the muscle as a result of the immunization. The swelling and redness will typically continue to get worse rather than better. After trying to test the degree of movement possible in the joint and without pain, if you are still unsure whether it is a bleed that needs to be treated, then you should call the child’s nurse coordinator for advice.

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Q. Is prophylaxis a good idea if a toddler has difficulty tolerating needle sticks? Won’t prophylaxis require even more frequent jabs?

A. Each time your child has a bleed into a joint, there is some damage done, which over time can lead to serious joint disease. Several years ago, prophylaxis became a common part of treatment for most young children with severe hemophilia, and for some children with moderate hemophilia. These regular, preventative infusions of factor treatment can help prevent joint disease.

Although it can be hard to watch a scared toddler undergoing frequent needle sticks now, it is important for parents to understand that their behaviour is short term and age-appropriate. If infusions are very challenging, you may wish to discuss the possibility of a port for easier access to the child’s veins. As children mature they will start to make the connection between treatment and getting better—their behaviour will improve and they will actually sit still during treatments. At that time, parents can start learning how to administer factor infusions at home.

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Q. What’s the best way to handle temper tantrums during which a child might injure himself?

A. If a toddler with hemophilia has temper tantrums that get very physical—such as banging their head on the floor—you should definitely be concerned. These actions can cause injuries that start a bleed, which can be especially dangerous in the head or neck area. Try to nip this behaviour in the bud for their own safety. You can try distracting the child with things that interest them. If this doesn't work, try picking them up and calmly holding them tightly to protect them until the tantrum runs its course.

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Q. How can families cope with a sudden, unexpected diagnosis of hemophilia in a toddler?

A. Sometimes hemophilia is not diagnosed until a child is a bit older and perhaps has become more active—for example, after a bleed that resulted from a new activity. In about 3 out of 10 cases, a diagnosis of hemophilia is unexpected as there is no family history of the condition. The hemophilia gene may have been passed "silently" through generations without anyone in the family showing symptoms. Or the gene mutation could have occurred spontaneously for the first time in a single family member, rather than being inherited.

Hemophilia Treatment Centres (HTCs) can advise on the child’s medical care and what parents should do if they suspect a bleeding episode. They often also organize (or can refer families to) support groups to connect families with others who are facing the same issues, understand how they feel, and also need to talk. Having support from others is a very important part of coping with a chronic condition. The Canadian Hemophilia Society sometimes holds family camps just for this reason. Nurse coordinators and social workers may also be able to put people in touch individually with other families in very similar situations.

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Q. What are the risks of using factor treatments? Can they transmit diseases?

A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.

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Q. Is daycare safe for a child who has hemophilia? What should parents look for in a daycare centre?

A. Yes, children with hemophilia can absolutely be placed in daycare or preschool. Look for a safe environment with professional staff who are interested in learning about hemophilia and will commit to working with you on a comprehensive care and emergency plan for your child. Daycare staff need to be taught about a child's hemophilia: how it affects the child, what safety precautions must be taken, what treatment or special care the child requires, and what to do in case of an injury or emergency. The nurse coordinator at your Hemophilia Treatment Centre can help with educating daycare staff, and there are also several booklets and other educational materials available.

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Q. Will a child with hemophilia experience different separation anxiety over going to daycare than that of a child who doesn't have hemophilia?

A. If your child demonstrates any separation anxiety, it will be based on their own unique personality and ability to adapt to new circumstances. Hemophilia will have no impact on their reactions or social skills.

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Q. Will hemophilia delay toilet training or the development of physical skills?

A. Hemophilia does not affect children’s physical or developmental skills. Therefore, it will not affect your child's toilet training or progress in any other developmental area. All children must be allowed to grow and develop, and people with hemophilia should be encouraged and supported in the same ways as those without.

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Q. Should children with hemophilia wear protective clothing or a helmet while at daycare?

A. Some children will wear knee pads or have padding sewn into the knee area of their pants to protect them while playing in an active daycare or preschool environment. Protective helmets may also be recommended, especially when riding tricycles or bicycles or other similar activities. But it’s best to talk with your nurse or other Hemophilia Treatment Centre staff to see what your child’s comprehensive care team advises.

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Q. Can Hemophilia Treatment Centres (HTCs) find or recommend a daycare centre?

A. Depending on your location, your HTC MAY know of a specific daycare, but don't count on it. You might want to contact your local chapter of the Canadian Hemophilia Society to see if they have any information or suggestions. At this time, there isn't an official accreditation program for daycares, so ultimately, it is the parents' responsibility to research and find an appropriate daycare or preschool centre and speak to staff there about their child’s needs. Once you have found a centre, you can always ask your HTC or nurse coordinator to speak to the staff and help in educating and preparing them.

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FAQs: Preschoolers

You’ll find useful information on preschoolers with hemophilia in the following frequently asked questions, but for medical advice, be sure to always contact your doctor or Hemophilia Treatment Centre.

How can a preschooler with hemophilia be disciplined?

Can young children with hemophilia participate in sports or join sports teams?

What treatment or actions need to be taken for a child with mild hemophilia?

What are the risks of using factor treatments? Can they transmit diseases?

Q. How can a preschooler with hemophilia be disciplined?

A. The preschool years is often when children begin to develop strong minds and wills of their own. Every parent and caregiver will have his or her own ideas of how to discipline a child with hemophilia, which can be achieved in different ways. It’s very important that every child is taught right and wrong, and with children who have hemophilia, discipline may also be a matter of helping them stay safe. "Time-out" is an excellent method for children, but you can also ask your Hemophilia Treatment Centre for advice.

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Q. Can young children with hemophilia participate in sports or join sports teams?

A. It is very important for children with hemophilia to be active and participate in activities with other children—although these should be non-contact sports to protect them from injury and bleeds. These kinds of activities not only helps these children physically, by building strong muscles to support and protect their joints, but it also helps them to feel like they fit in with the other children their age—no child with hemophilia wants to feel or appear like they are not "normal."

There are many sports that a child with hemophilia can do safely. With the parents’ support and pre-treatment (that is preventative factor infusions) before the activity, the preschooler with hemophilia can be a valuable member of any team. Coaches and activity leaders should know that hemophilia is a genetic, non-communicable condition, and they should be encouraged to learn more about the disorder and what kinds of activities are safe and risky. There is a lot of useful information on this website, as well as many printed and other online resources available.

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Q. What treatment or actions need to be taken for a child with mild hemophilia?

A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.

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Q. What are the risks of using factor treatments? Can they transmit diseases?

A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.

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FAQs: Younger Schoolchildren

Will a child with hemophilia be safe at school?

Can children with hemophilia walk to school, go out for recess, or participate in other physical activities?

How can parents talk to schools and teachers about their child’s hemophilia?

Is protective clothing or a helmet necessary at school?

How can schools be prepared in case a student with hemophilia has a bleeding episode, or there is an emergency?

Should parents leave factor treatment at the school in case of a bleeding episode, or provide it to teachers or adults on special school-day outings?

Should school nurses be trained in how to administer hemophilia factor infusions?

What can parents and families do if a child tries to hide bleeds?

Should a child's classmates be told that the child has hemophilia?

Should siblings be asked to protect a child with hemophilia when they’re outside of the home?

How old should children be to start learning to help with their own hemophilia treatment?

What treatment or actions need to be taken for a child with mild hemophilia?

Can young children with hemophilia participate in sports or join sports teams?

What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?

What are the risks of using factor treatments? Can they transmit diseases?

Q. Will a child with hemophilia be safe at school?

A. Parents should rest assured that their child with hemophilia will be as safe at school as any other child. It’s just important to share information about the child’s condition and needs with school personnel, provide all important contact details, and develop plans of action in case of injuries or emergency situations.

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Q. Can children with hemophilia walk to school, go out for recess, or participate in other physical activities?

A. Walking is excellent exercise for all children, including people with hemophilia. If you allow your other children to walk, your child with hemophilia can walk with them. The child can also go out for recess—it is very important for their emotional and social development that they are able to play with their peer group. Just be sure to teach the child the importance of playing safely, and make sure school personnel know what to do if an injury does occur. Children with hemophilia can also participate in most school physical activities, although a few (such as contact sports) may not be appropriate. Your Hemophilia Treatment Centre (HTC) and members of the child’s care team can give you and the school guidance about safer and riskier activities.

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Q. How can parents talk to schools and teachers about their child’s hemophilia?

A. Speak to your child's teacher at the beginning of the school year. It is important to get off to a good start! There are many excellent information booklets, pamphlets, and video and online resources that you can share with teachers. Your hemophilia nurse coordinator can also help with speaking to and educating school personnel.

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Q. Is protective clothing or a helmet necessary at school?

A. Generally, by the time they reach their school years, children with hemophilia don’t need to wear protective clothing for day-to-day activities. They should, however, always wear a helmet when riding a bicycle and should also wear any specific sports-related protective equipment when participating in those sports.

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Q. How can schools be prepared in case a student with hemophilia has a bleeding episode, or there is an emergency?

A. It is very important that the parents and other caregivers work with the staff in the school to educate them on how to recognize a bleed, what to do in case of an injury, and what actions to take in case of an emergency. You should also be sure that the school has all your contact information as well as contact details for the child’s Hemophilia Treatment Centre. You’ll find information on this website about educating and planning with school personnel, but your child’s hemophilia nurse coordinator can also help in this process.

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Q. Should parents leave factor treatment at the school in case of a bleeding episode, or provide it to teachers or adults on special school-day outings?

A. No. The risk of losing this expensive treatment is too high. People with hemophilia bleed over a long period of time but very slowly. So in the case of an injury or bleed, parents or other caregivers will have time to stop at home or the Hemophilia Treatment Centre (HTC) to get the child’s factor and other treatment supplies before arriving at the school.

If a particular outing or new activity that may create a higher risk of an injury or bleed, parents may want to administer a preventative factor infusion (prophylaxis) the morning of the event. Talk to your nurse coordinator or others at your Hemophilia Treatment Centre about when prophylactic treatment is recommended, and be sure school personnel know to notify you in advance of any relevant activities.

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Q. Should school nurses be trained in how to administer hemophilia factor infusions?

A. Generally, no. School nurses often share their time between many schools, and may not have the time to practice and develop the proper skills for administering an intravenous infusion. In the event of an injury or bleeding episode, there will be enough time for the child to receive treatment from a parent or a qualified medical professional.

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Q. What can parents and families do if a child tries to hide bleeds?

A. Hiding bleeds can be a common problem among children of this age group—they may worry about being different, or not want to miss a school activity or event in order to get treatment. Parents, other caregivers, and school staff should keep a watchful eye to recognize the signs of bleeds, as well as encourage the child to let them know, always emphasizing the positive side to treatment.

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Q. Should a child's classmates be told that the child has hemophilia?

A. Before talking to other classmates and peers, you must be sure that your child with hemophilia feels comfortable letting others know. Once the child is comfortable, offer a simple explanation of the key facts about the condition. Emphasize that the child with hemophilia is just like other children—he just needs to be a little more careful about certain things—and that the condition is non-communicable (that is, others cannot “catch” it from the child).

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Q. Should siblings be asked to protect a child with hemophilia when they’re outside of the home?

A. No. Being a brother or sister has its own challenges and rewards. It is too much of a burden for children or teens to feel that they are responsible for protecting another sibling from bleeding episodes. Parents should reinforce the importance of being a good brother or sister, but must avoid giving a child responsibility that is beyond his or her maturity level. Otherwise, siblings could experience strong feelings of guilt when the child with hemophilia experiences bleeding episodes requiring treatment, or resentment at the burden of responsibility placed on them.

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Q. How old should children be to start learning to help with their own hemophilia treatment?

A. Every child with hemophilia takes an interest in their treatment at a different point in time, so the exact age will vary with the child’s interest, comfort, and maturity level. You should always encourage them to help, starting with simple tasks like getting the factor, opening the boxes, and taking the caps off the bottles. Make the treatment time a special time for you and your child. Your hemophilia nurse can provide many helpful ideas on getting the child more involved.

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Q. What treatment or actions need to be taken for a child with mild hemophilia?

A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.

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Q. Can young children with hemophilia participate in sports or join sports teams?

A. It is very important for children with hemophilia to be active and participate in activities with other children—although these should be non-contact sports to protect them from injury and bleeds. These kinds of activities not only helps these children physically, by building strong muscles to support and protect their joints, but it also helps them to feel like they fit in with the other children age—no child with hemophilia wants to feel or appear like they are not "normal."

There are many sports that a child with hemophilia can do safely. With the parents’ support and pre-treatment (that is preventative factor infusions) before the activity, the schoolchild with hemophilia can be a valuable member of any team. Coaches and activity leaders should know that hemophilia is a genetic, non-communicable condition, and they should be encouraged to learn more about the disorder and what kinds of activities are safe and risky. There is a lot of useful information on this website, as well as many printed and other online resources available.

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Q. What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?

A. It’s important that physiotherapists understand the medical background of a child with hemophilia, and how the condition can lead to the development of joint disease and pain. There are many helpful resources on the subject, both online (including this website) and in print. The child’s parents should refer the physiotherapist to their Hemophilia Treatment Centre (HTC) for consultation with the HTC team prior to working with the child—this will ensure the best treatment plan and therapies for the child’s particular condition.

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Q. What are the risks of using factor treatments? Can they transmit diseases?

A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.

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FAQs: Older schoolchildren

Will a child with hemophilia be safe at school?

How can parents talk to schools and teachers about their child’s hemophilia?

How can schools be prepared in case a student with hemophilia has a bleeding episode, or there is an emergency?

Should parents leave factor treatment at the school in case of a bleeding episode, or provide it to teachers or adults on special school-day outings?

Should school nurses be trained in how to administer hemophilia factor infusions?

Should a child's classmates be told that the child has hemophilia? How should the child handle threats of being bullied?

Should siblings be asked to protect a child with hemophilia when they’re outside of the home?

Can children with hemophilia participate in sports or join sports teams?

Can schoolchildren with hemophilia learn to self-infuse?

What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?

What treatment or actions need to be taken for a child with mild hemophilia?

What are the risks of using factor treatments? Can they transmit diseases?

Q. Will a child with hemophilia be safe at school?

A. Parents should rest assured that their child with hemophilia will be as safe at school as any other child. It’s just important to share information about the child’s condition and needs with school personnel, provide all important contact details, and develop plans of action in case of injuries or emergency situations.

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Q. How can parents talk to schools and teachers about their child’s hemophilia?

A. Speak to your child's teacher at the beginning of the school year. It is important to get off to a good start! There are many excellent information booklets, pamphlets, and video and online resources that you can share with teachers. Your hemophilia nurse coordinator can also help with speaking to and educating school personnel.

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Q. How can schools be prepared in case a student with hemophilia has a bleeding episode, or there is an emergency?

A. It is very important that the parents and other caregivers work with the staff in the school to educate them on how to recognize a bleed, what to do in case of an injury, and what actions to take in case of an emergency. You should also be sure that the school has all your contact information as well as contact details for the child’s Hemophilia Treatment Centre. You’ll find information on this website about educating and planning with school personnel, but your child’s hemophilia nurse coordinator can also help in this process.

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Q. Should parents leave factor treatment at the school in case of a bleeding episode, or provide it to teachers or adults on special school-day outings?

A. No. The risk of losing this expensive treatment is too high. People with hemophilia bleed over a long period of time but very slowly. So in the case of an injury or bleed, parents or other caregivers will have time to stop at home or the Hemophilia Treatment Centre (HTC) to get the child’s factor and other treatment supplies before arriving at the school.

If a particular outing or new activity that can create a higher risk of an injury or bleed, parents may want to administer a preventative factor infusion (prophylaxis) the morning of the event. Talk to your nurse coordinator or others at your Hemophilia Treatment Centre about when prophylactic treatment is recommended, and be sure school personnel know to notify you in advance of any relevant activities.

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Q. Should school nurses be trained in how to administer hemophilia factor infusions?

A. Generally, no. School nurses often share their time between many schools, and may not have the time to practice and develop the proper skills for administering an intravenous infusion. In the event of an injury or bleeding episode, there will be enough time for the child to receive treatment from a parent or a qualified medical professional.

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Q. Should a child's classmates be told that the child has hemophilia? How should the child handle threats of being bullied?

A. Before talking to other classmates and peers, you must be sure that your child with hemophilia feels comfortable letting others know. Once the child is comfortable, offer a simple explanation of the key facts about the condition. Emphasize that the child with hemophilia is just like other children—he just needs to be a little more careful about certain things—and that the condition is non-communicable (that is, others cannot “catch” it from the child).

If your child experiences bullying or threats, encourage him—as you would other children—not to respond physically, but instead to tell a teacher or other adult.

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Q. Should siblings be asked to protect a child with hemophilia when they’re outside of the home?

A. No. Being a brother or sister has its own challenges and rewards. It is too much of a burden for children or teens to feel that they are responsible for protecting another sibling from bleeding episodes. Parents should reinforce the importance of being a good brother or sister, but must avoid giving a child responsibility that is beyond his or her maturity level. Otherwise, siblings could experience strong feelings of guilt when the child with hemophilia experiences bleeding episodes requiring treatment, or resentment at the burden of responsibility placed on them.

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Q. Can children with hemophilia participate in sports or join sports teams?

A. It is very important for children and teens with hemophilia to be active and participate in activities with their peers—although these should be non-contact sports to protect them from injury and bleeds. These kinds of activities not only helps these children physically, by building strong muscles to support and protect their joints, but it also helps them to feel like they fit in with the others their age—no child with hemophilia wants to feel or appear like they are not "normal."

There are many sports that a child with hemophilia can do safely. With the parents’ support and pre-treatment (that is preventative factor infusions) before the activity, the student with hemophilia can be a valuable member of any team. Coaches and activity leaders should know that hemophilia is a genetic, non-communicable condition, and they should be encouraged to learn more about the disorder and what kinds of activities are safe and risky. There is a lot of useful information on this website, as well as many printed and other online resources available.

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Q. Can schoolchildren with hemophilia learn to self-infuse?

A. Yes—many teenagers with hemophilia become autonomous. During these school years, you should encourage your child to participate actively in their treatment by progressively giving them more responsibility. When they’re ready to start self-infusing, your Hemophilia Treatment Centre (HTC) can provide training as well as practice infusion resources.

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Q. What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?

A. It’s important that physiotherapists understand the medical background of a child with hemophilia, and how the condition can lead to the development of joint disease and pain. There are many helpful resources on the subject, both online (including this website) and in print. The child’s parents should refer the physiotherapist to their Hemophilia Treatment Centre (HTC) for consultation with the HTC team prior to working with the child—this will ensure the best treatment plan and therapies for the child’s particular condition.

Back to top

Q. What treatment or actions need to be taken for a child with mild hemophilia?

A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.

Back to top

Q. What are the risks of using factor treatments? Can they transmit diseases?

A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.

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FAQs: Teenagers

The teenage years pose many challenges for families living with hemophilia, so you may find the following frequently asked questions helpful. Just be sure to always contact your doctor or Hemophilia Treatment Centre for any medical advice.

How can parents and teenagers living with hemophilia come to agreement over the teen’s independence?

How can teenagers with hemophilia handle threats of bullying?

How can parents and caregivers help teenagers with hemophilia overcome their shyness or get more involved with their peers?

Can teenagers with hemophilia participate in sports or join sports teams?

Can teenagers with hemophilia self-infuse and manage their own treatment?

What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?

What treatment or actions need to be taken for a child with mild hemophilia?

What are the risks of using factor treatments? Can they transmit diseases?

Q. How can parents and teenagers living with hemophilia come to agreement over the teen’s independence?

A. Independence is a challenging notion for people of all ages who are living with hemophilia, as they will always require some degree of assistance from family, their comprehensive care team, and even from time to time the emergency department to help them with both acute and long- term issues. Understanding when to turn to others is part of the process of growing, maturing, and gaining independence.

Parents need time to let go—they are used to being needed! They need to know that teenagers still want their encouragement and support, even as they are striking out on their own. Teenagers need to learn to ask for more independence slowly and earn their parents’ trust. By learning to make the right choices and demonstrating that they are taking care of their health needs, teens will build self-confidence and earn their parents' trust.

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Q. How can teenagers with hemophilia handle threats of bullying?

A. Teens with hemophilia need to be especially careful to avoid physical altercations. It’s a good idea for them to practice ways to avoid risky situations—for example, by showing no emotion to the bully and then walking away, or asking for help from someone else to avoid putting themselves in danger. There are many books and articles available for dealing with bullies and for help with problem-solving—remember, the best choices are made when armed with the most information.

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Q. How can parents and caregivers help teenagers with hemophilia overcome their shyness or get more involved with their peers?

A. No teenager wants to feel different from their classmates, but hemophilia can underscore these feelings. Don’t try to force them into situations where they don’t feel comfortable, but it may be helpful to assign team projects so they can work alongside other teens, and hopefully, build closer relationships. Focus as well on the teen’s strengths and capabilities in order to help them develop self-confidence, social skills, and increasing independence. Encourage them to pursue activities they enjoy and show aptitude for, as well as take responsibility for their own health. Their confidence and comfort will start to shine through with your trust and encouragement.

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Q. Can teenagers with hemophilia participate in sports or join sports teams?

A. It is very important for adolescents with hemophilia to be active and participate in activities with their peers (although not all sports are recommended). These kinds of activities not only helps the teens physically, by building strong muscles to support and protect their joints, but it also helps them to feel like they fit in with the others their age—no teen with hemophilia wants to feel or appear like they are not "normal."

There are a lot of misconceptions surrounding hemophilia. People often think that a person with hemophilia will bleed to death if they get a cut. This is not true. It does take them longer to stop bleeding, but with the proper treatment the bleed will eventually stop. Coaches and activity leaders should know that hemophilia is a genetic, non-communicable condition that can be managed, and they should be encouraged to learn more about the disorder and what kinds of activities are safe and risky. There is a lot of useful information on this website, as well as many printed and other online resources available.

Before joining a team, the teen and their parents should discuss their limitations and treatment needs with coaches and other personnel. Preventative treatment infusions (prophylaxis) may be recommended before activities to reduce the risk of a bleeding episode. Sport-specific protective equipment is also a must.

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Q. Can teenagers with hemophilia self-infuse and manage their own treatment?

A. Yes—many teenagers with hemophilia become autonomous. When they are ready to start self- infusing, their Hemophilia Treatment Centre (HTC) can provide training as well as practice infusion resources. Adolescence is also a good time for children to start taking more responsibility for their health overall, including learning to make smart and healthy choices, making and keeping medical appointments, maintaining their own treatment diary, and more.

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Q. What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?

A. It’s important that physiotherapists understand the medical background of a child with hemophilia, and how the condition can lead to the development of joint disease and pain. There are many helpful resources on the subject, both online (including this website) and in print. The child’s parents should refer the physiotherapist to their Hemophilia Treatment Centre (HTC) for consultation with the HTC team prior to working with the child—this will ensure the best treatment plan and therapies for the child’s particular condition.

Back to top

Q. What treatment or actions need to be taken for a child with mild hemophilia?

A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.

Back to top

Q. What are the risks of using factor treatments? Can they transmit diseases?

A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.

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