FAQs: Toddlers
While the following frequently asked questions touch on many helpful topics related to toddlers with hemophilia, for medical advice you should always contact your doctor or Hemophilia Treatment Centre.
- 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 he wants to put in his mouth?
- Is it okay to brush the teeth of a child with hemophilia? What if hey 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 his 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?
- If someone with hemophilia needs a blood transfusion, do they need to worry about the safety of the blood supply?
- 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.
A. You can always ask your Hemophilia Treatment Centre for a recommended dentist.
Q. Is it safe to let our teething child chew on objects that he wants to put in his 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.
Q. Is it okay to brush the teeth of a child with hemophilia? What if hey 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.
Q. How can we protect a young toddler who tries to climb out of his 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 he cannot climb out. If the child is tall then it might be time to put him 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 he gets used to sleeping in a bed.
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 to explore freely and learn to set his 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 him run around the house in bare feet or making sure that his socks have traction. You should also be sure the child's shoes fit properly so that he is 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.
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 is typically not recommended. 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.
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.
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.
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), 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, he 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.
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 on some children with moderate hemophilia, depending on their bleeding history. These regular, preventative infusions of factor treatment has allowed many young patients to grow up with normal, healthy joints.
Although it can be hard to watch a scared toddler undergoing frequent needle sticks now, it is important for parents to understand that his 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.
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 his 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. Try to nip this behaviour in the bud for his own safety. You can try distracting the child with things that interest him. If this doesn't work, try picking him up and calmly holding him tightly to protect him until the tantrum runs its course.
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 ecome 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.
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 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.
As a result, in Canada:
- Since 1988, there have been no HIV infections in people with hemophilia from factor concentrates
- Since 1990, there have been no hepatitis C infections in people with hemophilia from factor concentrates
Q. If someone with hemophilia needs a blood transfusion, do they need to worry about the safety of the blood supply?
A. The modern factor concentrates used in Canada today, whether plasma-derived or recombinant, have never been known to transmit diseases like HIV, hepatitis B, or hepatitis C. Hepatitis B infection occurs in only about 1 in a million blood transfusions. Those with hemophilia have a greater chance of needing a blood transfusion, but the risk of acquiring Hepatitis B need not be a concern since because they will have been vaccinated against the virus.
For people with hemophilia who received blood products in the 1970s and 1980s, hepatitis C (for which there is no vaccine available) was a serious concern. However, today donor screening methods and viral inactivation procedures have reduced the risk of being infected with hepatitis C to near zero. Fortunately, HIV infection through factor concentrates is also a thing of the past.
It is possible that a new unknown agent could infect the blood supply. But those responsible for hemophilia care and for the blood system, including the CHS, consumer groups, the blood transfusion service (Canadian Blood Services) and organizations around the world, are watchful of new dangers and take their responsibility for the safety of blood products very seriously.
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 pre-school. 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.
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.
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. All children must be allowed to grow and develop, and those with hemophilia should be encouraged and supported in the same ways as those without.
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 pre-school 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.
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 pre-school 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.