Preparing for School - Long Version
From Pahwiki
[edit] School and PH Youth
The first days of school can be an extremely stressful period for parents of children with PH. These tips help make the transition easier.
[edit] We can help schools help our PH Youth
Not all of these suggestions are necessary for your child to attend school. Consider your child's specific needs, as well as the policies of the school district. Always consult your child's physician when you are uncertain about a situation.
[edit] Meet with the principal and teachers before school starts or on a regular basis
Make sure that the school principal, nurse, coaches and your child's teachers understand your child's disease. Example letters are available that succinctly explain PH, and what to do in the case of emergencies. Evaluate how things are going periodically.
[edit] Have an extra set of books to keep at home
Your child will not need to carry heavy books and the books will be available if they are ill.
[edit] Homework Assignments: how will those be handled when ill?
E-mail, delivered by a neighbor or sibling? Assign someone who is reliable. If the homework assignments are piling up, ask the teachers to eliminate those that can be eliminated.
Keep track of what your child has handed in or copy those assignments sent into the teacher. This isn’t usual and customary so items get lost or misplaced. It’s more stress if they have to complete the assignment a second time.
Check to see if tests can be sent home to be completed or done with an open book.
[edit] Create a notebook of information to be kept in the office
The notebook could contain the following:
- Important phone numbers: List in order of who is contacted first. You can ask the school to call you repeatedly until they reach you or x2. Include the Primary Care physician, consulting physician names, pharmacy, Grandparents, or significant others to use in an emergency. Identify if the number is a cell or home number.
- Medication list: The medication name, amount, frequency, route and time should be listed. Include other- the- counter medications or home remedies too.
- Insurance Information: Copy both sides of the insurance card/s. Indicate which one is primary and or secondary.
- Preferred hospital: Provide specific information if a hospital system has multiple locations. If applicable.
**Update the book yearly or as needed.
[edit] Supply Options
Some may be necessary to have available at school:
[edit] Oxygen
Place the oxygen tank in an area where your child can get some privacy. If they will need it at school they most likely won’t feel well at the time and will want some privacy. Ice packs Keep extra ones at school in the freezer.
[edit] Drinks
Place your child’s name on them. If medications are taken during the school day and if extra calories are needed, supply drinks to encourage calories.
[edit] Medications
Check with the school to see what the procedure is. If your child needs to take a medication during school hours send the medication/s in the original bottles, which include the instructions. Keep what supply you need at home labeled in a container. Determine ahead of time when a refilled will be needed, before sending in the bottle. The school may need a copy of the Prescription as well. Keep a copy of all prescriptions received, for your reference.
[edit] Flolan/Remodulin IV Pump information
The phone number for the 24 hr emergency phone service should be on the Important Phone List . Check with your insurance company to see if a third pump could be provided for the school. That way the extra back up pump doesn’t need to be carried back and forth.
If applicable, a review can be provided to the staff regarding what the pump looks -like and what the alarms might sound like. Take in your extra pump to provide the demonstration. You can explain how the pump is used, how often the medication is changed and the importance of timely care. Discuss scenarios and how you expect them to respond to an emergency.
Pump label- The pump should be labeled with the Warning: Do not stop or turn this pump off! Results could be life threatening. If the tag has come off, ask your pharmaceutical company to provide a new sticker.
Extra Cassette-some children change their cassettes every eight hours, if school activities extend past the 8 hours, an extra cassette (on ice) can be sent to school to be placed in the fridge or kept on ice. This could also be a back up in case of an emergency. Pack it like you would their lunch, in their backpack.
[edit] Classmates visiting
When your child has been ill, a visit could boost morale. Maybe the students visiting can provide some assistance with homework. Ask if they have been ill recently, other students may not think to practice that precaution.
[edit] Think about how much your child can accomplish in a school year
Summer school may be an option. Making the school year easier. Allowing for extra social activities to occur during the school year. Individualize for your child.
[edit] Donate hand sanitizers or cleaning wipes
Classrooms are a breeding ground for germs. Prevention helps.
[edit] Local EMS
Find out who the first responder is for the school location. The school can call a specific EMS service if you request. Emergency personnel are not likely to be familiar with PH. You can write up an action plan for different scenarios, have your physician help with it as well.
Involve a sibling If possible or appropriate. If an emergency has occurred involve the sibling, if appropriate. The siblings are more aware than we realize. If its not appropriate to involve them make sure a plan is in place for the sibling, if the PH child has an emergency situation.
In some areas it is possible to pre-arrange first responder treatments. This involves contacting the local 911 offices and having them tag your or the school's phone number to a certain medical condition. If the call ever comes from the school (or your home for that matter), the first responders will be better prepared to deal with the situation.
[edit] Car pools
It’s hard to predict when your PH child will become ill. Making plans to pick up another child at the last minute can be hard. If you have another child that may need a ride, make those arrangements early on.
[edit] Field Trips
Establish what supplies the teacher needs to be take on a field trip. Talk about whether you need to accompany the class. A small backpack with the back up pump, the notebook of information and supplies can be routinely taken along. Ask for a listing of field trips scheduled so that you can evaluate the situation and accommodate your childs needs. If stairs will be taken, maybe a partner of the childs choice can accompany. If there is a lot of walking, ask the teacher to plan some rest breaks and discuss interesting facts with the kids.
[edit] Informing the class about PH or not
This is individualized. You or your child can provide an age appropriate explaination to the class. Classmates may want to know if PH is contagious. We have found that small children are typically satisfied with these explanations, and will in many cases provide support to your child.
[edit] Gym and Sports
Parents may promise to have one parent present at all games both home and away and present or nearby during all practices. Parents sould add that “ the child should be allowed to rest if she/he becomes short of breath or tired”.
[edit] Half day school
Maybe your child would be able to attend a half day of school. Maybe home school is for your child. Those options maybe available. Decide what subjects are most important. Home school may be the best choice for your child and you.
At the end of the school year meet with the teachers to plan for the next school year. You will be making better plans each year.
[edit] Grade school versus High School
Talk about how far your child needs to walk from class to class. What obstacles could they have during the school day. Decide the best location for their locker or assigned parking spot. Allowance for a hall pass to use the restroom whenever necessary, especially if they are taking water pills. If there are stairs in the school maybe the student could use the elevator. Determine if another student needs to accompany your child.
Some grade schools have block scheduling which decreases the amount of walking needed during the day.
- Observe your child on the playground or chaperone a field trip, it’s a wealth of knowledge. You won’t regret it.
[edit] Taking the Bus
Inform the city or transportation system in your school district. Accommodations can be made to drop off your child in front of your home. Discuss what options or emergency planning needs to take place.
[edit] ID bracelet/Medical Alert Bracelet
Your child should have an ID bracelet or necklace identifying what their diagnosis is and any other pertinent information.
