Even when we equally feel excited for the new school year, fear and worry can still creep in. Add a bleeding disorder to the mix, and it is understandable why so many families just like ours struggle with the transition back into school after an enjoyable summer safe at home.
When my son with a bleeding disorder began pre-kindergarten, I was nervous for him, and I’m quite sure it did not help. Perhaps my anxiety rubbed off on him – he really struggled throughout his first year of school. Hard lessons were learned, but now, we know how to be better prepared. This year, we are ready to send our daughter to school for the first time. She is also a bleeder like my son and me. To make the transition easier, I have collected some helpful suggestions to support everyone involved, and we’re happy to share them with you.
Daniel Tiger’s mom (of the PBS KIDS television series Daniel Tiger’s Neighborhood) says it best. “When we do something new, let’s talk about what we do.” Transitions are difficult for many, and discussing changes and what to expect can make things less scary. Additionally, by initiating conversation, you are creating a safe space for your child to express any fears and feel welcome to ask questions.
Reach out to the school and ask for a mock schedule for a typical day or week in their class. Review this schedule with your child, and if you can, try spending a few days or a week mimicking or marking each time an expected school day activity will take place. For example, wake up at the time you would for a typical school day, go through your morning checklist, mimic the school day schedule including classes, meals, play (etc.), coming home, and after school activities. Of course, this is not expected to be done perfectly, but even setting alarms and mentioning what to expect at certain times of the day can help children acclimate to a new schedule.
So much fear revolves around being unfamiliar with a new location. It would have been incredibly helpful for my child to have visited the school ahead of the standard ‘meet the teacher’ in order to walk through the halls and imitate his various routes; from drop off to the classroom, from the classroom to the playground, from the classroom to the cafeteria, etc. Children also need to know where important rooms are such as the nurse’s office, main office, library (my son’s favorite), and others.
When your child is at school, the adults responsible need to know about their bleeding disorder, what to expect, what YOU expect, and what to do in any bleeding situation. An in-service with the school staff should be set up before school starts to help them understand your child’s condition. Our community’s national and local organizations have resources to make this task easier for families. You can also ask your local industry representatives as well. They can often join your education meetings to help you teach the school staff.
At the very least, create a 504 plan to provide your child with protection and access to resources and accommodations if needed including more time to move between classes, excused absences for doctor visits or education conferences, the ability to reschedule exams if needed, or extra bathroom breaks and access to period products for menstruators. There are times when an IEP is also needed. Work with the school to determine which is best for your child’s care.
In my opinion, not wearing a medical ID of some kind can be dangerous. When we cannot speak for ourselves, we need our data to speak for us. Anything could happen, and it’s best to be prepared. My kids love their medical alert bracelets, especially my daughter because hers is pink! Letting them choose their favorite color or style can incentivize their willingness to keep it on. Discuss the importance of wearing them before they start. Some Hemophilia Treatment Centers provide medical alert jewelry for their patients at little or no cost (e.g. examples: MyID Shop, Medical Alert Foundation®, American Medical ID®)
Just like your emergency ‘go–bag,’ a similar collection of bleed support items can help alleviate stress and anxiety for children, caregivers, and school staff. Depending on the needs of your child, the bag can stay at school or come home as often as necessary. Here is a list of what’s in our bag along with a few ideas from our fellow community members. (Examples of brand products can be found at pharmacies, big box retailers or Amazon.)
Medication and infusion supplies such as infusion needles, tourniquet, gloves, alcohol wipes, gauze pads, tape, etc. Depending on the medication your child uses, oral spray or infusible, it can be kept in the bleed bag or stored in a secure refrigerator at their school.
Emergency Care Plan – Steps that should be taken for minor injuries such as scrapes, bumps and nose bleeds. Should also include information to give to EMT or emergency room.
Emergency contact list
Travel Letter – a letter from the child’s physician (on letterhead) outlining the child’s diagnosis, severity, medications and dosage, treatment regimen for various levels of injury, and physician contact information. This information is highly helpful in an emergency where the parent is unreachable.
Copy of the 504/IEP outlining the provided services.
First aid powder packs and bandages featuring bleeding control technology to help control bleeding from minor cuts (powder examples: BleedStop™, BleedCease®, WoundSeal®; bandage examples: QuickClot® dressing/bandages (QuickClot® Clotting Gauze, Curad® Quickstop)
Hydrocolloid bandages for faster healing of surface wounds (e.g. Band-Aid Hydro Seal®, CVS Health Advanced Healing Hydrocolloid Bandages™, DynaDerm Hydrocolloid Dressing, Walgreens Hydrocolloid Gel Bandages)
Adhesive bandage strips for small cuts and scrapes (favorite styles/colors)
Bandage wrap (e.g. Ace™, Coban™)
Saline gel for dry noses to help prevent a nosebleed (e.g. AYR® Saline Nasal Gel, Boogie® Saline Nasal Gel, NeilMed® NasoGel®)
Nosebleed tools – clamp, plug or stopper (e.g. RhinoPinch Nasal Clips®, Nosebleed Stopper, Quick Seal® Nose Bleed Plugs, Mueller® Nasal Plugs, Nampons™ for Nosebleeds, Nose It All™)
Instant icepacks
Menstruation products (if applicable)
Antiseptic first aid wipes to clean off wounds (e.g. Dermoplast®, Hart Wound Wipes, PhysiciansCare Antiseptic Towelettes, Medi-FIRST Antiseptic First Aid Wipes)
Change of clothes in case clothing is soiled with blood. Many schools cannot allow a child in class with visible blood on clothing for concern of exposure to another person.
Comfort item (my son loves his stuffed turtle, Lucky)
Our bleeding disorders family is the best resource out there. They have lived it and have experienced what you are going through, or you may be dealing with the same issues at the same time. Their guidance and comforting support can ease your stress and alleviate anxiety. You might even get lucky if another community family has gone through the same school system as you and the school is already aware of bleeding disorders. If you have not already, I highly encourage you to get involved with your local chapter and national organizations, join a social media group, and take advantage of every community connection opportunity available. We can lean on each other and can learn from those who have already walked in our shoes.
While every story is unique, we hope some these helpful ideas will ensure your school year will be a great triumph. If you have any success stories, or you might have more ideas to share with your community, we would love to hear from you. Wishing you all a safe, successful school year!
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
