Fitting treatment into busy lives
With school, activities, play dates and other family members’ needs, establishing a treatment routine that works for your family is crucial. It’s important to focus on helping your child live as normal a life as possible – and having a routine can help.
Prophylaxis—factor treatment given on a regular basis to try to prevent bleeding—usually requires a few infusions per week. And extra infusions may be necessary in advance of certain activities, so coordination with activity leaders is needed so that this can be planned. If your child is receiving prophylaxis, work with your HTC team to develop a treatment plan that meets medical needs while causing minimal disruption to your child’s (and the family’s) day-to-day routines.
The good news is that by this age, treatment should be getting a bit easier. A child’s veins are more developed and visible, which can help make injections easier. And at this point, most parents have mastered home infusions, which minimizes the need for trips to the hospital or treatment centre.
Parents and all other caregivers should monitor your child’s condition thorough bleed records and treatment diaries. Ask your HTC nurse if you need one. This will help your doctor see how your child is doing, and modify treatment if necessary.
Working with your child’s school
You’re not always there to watch over your child – especially as they grow and spend more time outside the home. So, it’s critical that you educate schools and any other caregivers on your child’s condition and how to respond to a bleed. They should also have the contact numbers for you and your HTC care team in the event of an emergency.
Here are some good things to inform school personnel and caregivers about:
- If the child complains of pain, believe them, even if there is nothing to see.
- Difficulty moving a limb normally, or excessive pain with or without moving, is a symptom of bleeding.
- Be aware that a child might try to hide their symptoms to avoid missing an exciting activity.
- Parents should be the first people consulted if you suspect a bleed. Make sure you always have all the parents' contact information on file (home, work, and cell phone numbers, pager number, etc.).
- The delay between the beginning of a bleed and the treatment must be reduced as much as possible—prompt treatment is crucial.
- Significant trauma to the head, among other injuries, can cause a life-threatening bleed.
- You must not "wait and see"—notify parents and emergency medical staff immediately.
- Basic first aid care can be administered when a bleeding episode happens—remember the key words Rest, Ice, Compression, and Elevation (RICE).
- Treat the child with hemophilia like every other child; avoid treating them in a way that could make them feel different or isolated from the other children.