It's that time of year ... summer comes to a close and children everywhere are going back to school! While a relief for some families, going back to school can be stressful for parents of children with mitochondrial disease.

1. Back to School Checklist for
Children with Mitochondrial
Disease
by Annette M. Hines, Esq. and Cristy Balcells RN MSN
www.specialneeds-law.com
www.mitoaction.org/education

2. What is Mito?
Mitochondrial diseases are disorders caused by dysfunction in the
mitochondria at the cellular level.
•Converts food to energy
•Provides energy to breathe
•Must provide enough power
for the brain and muscles
•Helps regulate “automatic”
body functions (body temp,
heartrate, digestion)
•Power source
•Must be periodically plugged
in or recharged
•Can become overloaded
•Energy conservation is
important

3. Review your Child’s IHP
“Individualized Health Care Plan”
• What is an IHP?
• If you don’t have an IHP, you need to devise one.
• Does it have the most up to date treatment information,
medication list and doctors that your child sees?
• If your child has changed schools or classrooms, does it need to
be adapted for the new location or schedule?
– For example, moving from elementary school to middle school
– Or changing from a self-contained classroom to an integrated one

4. Review your Child’s IHP
“Individualized Health Care Plan”
• Pack extra snacks and fluids that can be kept with the child at
all times. Drinks and snacks are energy saving measures, and
help to maintain a healthy energy baseline.
• Use a backpack with wheels to lessen muscle fatigue, and a
stroller or wheelchair between distances to conserve energy.
• How will the nurse/teacher/therapist communicate with you?
• What are YOUR CHILD’s cues that others can look for? (Difficulty
focusing, slower to move or speak, irritability, tantrums,
withdrawn, shaky)

5. For Your IHP: Are you feeling ok?
• Take snack/water breaks on schedule
• Fatigued does not mean sleepy! Look for clues:
– Irritability or hyperactivity
– Withdrawal
– More pronounced coordination issues
• Think about an energy budget – how are you spending and
saving the energy currency?
• Flushed cheeks, mottled (checkerboard) skin, subtle cues
• Just not acting normal – take a break!

6. For Your IHP: Plan ahead to minimize
exposure to illness
• Buy the classroom teacher a giant bottle of antibacterial gel,
and request that it be kept by the door where students can use it
every time they go in and out of the room. Good handwashing
is a must! Many school nurses will offer a handwashing campaign
in your child's classroom.
• While maintaining every student's right to privacy, ask that your
child's teacher and school nurse let you know if there is a known
contagious illness in the classroom. Children with mitochondrial
disease aren't always more susceptible to infection (some are),
but almost all have difficulty recovering from even a minor illness.
-

7. For Your IHP: Conserving the battery
• Get to know your child’s team, develop trust
• Schedule high-energy activities early in the day
• Allow ample time for transition – stable is more important
than schedule!
• Activity – rest – activity – rest
• Schedule snack/water breaks at least every 2 hours
• Environmental temperature very important
• Prioritize – quality more than quantity as a goal

8. For Your IHP: Symptoms and Strategies
to stay balanced
• Fatigue: Conserve energy with periods of rest, take your time with
transitions
• Infection and illness: Good handwashing, Purel
• Muscle weakness, pain: Use wheelchair/stroller/assistance
liberally; hydrate, take breaks
• Mental fog: Plenty of rest, snacks and hydration
• GI issues: Watch diet closely
• Easily overheated: Keep cool, avoid humidity, watch out for
abrupt temp changes

9. Did you collect any new information
over the summer?
• Many families use summer time to:
– get evaluations
– see specialists
– have elective procedures
– Have testing done
• It is difficult sometimes for parents to feel comfortable sharing information with
their school district
– New diagnoses
– New reports or evaluations to share
Bookmark and use the "Tools for School" section, which includes Sample IEP plans, letter
templates, protocols, daily checklists, etc. (mitoaction.org/education)

10. How did things go at summer camp
or summer programs?
• Share teacher or camp progress notes
• Any healthcare difficulties?
• Anything go particularly well that you can integrate into the
educational setting?
– For example, how did your child moderate activity and temperature levels in
the summer setting?
– Anything fun that your child responds to that takes the emphasis away from
the diagnosis and more on “feeling good”?
– Habits or routines you can work on together (hydration, hand washing, energy
management)

11. Keep School Staff Informed
• Meet with the school nurse and teacher to discuss all of the above.
– The more comfortable they are with your child’s medical issues the less conflict
you are likely to have throughout the year.
– School personnel often get worried about what they think they don’t know.
 LIABILITY is the elephant in the room
– Leave printed simple materials behind.
• It is difficult sometimes for parents to feel comfortable sharing
information with their school district
– Particularly given the natural conflict that can arise with school districts.
– Smaller and less formal meetings could be more comfortable and achieve
your goals

12. Keep School Staff Informed, cont.
• Common Issues to Discuss:
– How accessible is the nurse and what is he or she allowed to do for your
child? G-tube feedings, blood sugar checks, issue medications, seizure
issues (Diastat), or Epipen
– Do you have a private nurse or aide that needs to be introduced?
– Some schools require a contract for liability with the home healthcare
provider; make sure this is in order.
– How will information be shared during the school year? Perhaps set up a
notebook or other form to report back and forth on healthcare issues
between home and school.

13. Keep School Staff Informed, cont.
• Decide early in the year WHO is doing WHAT and write it down
• Give your child's teachers and nurses a small card with all of your
contact information, reminding them that you are only a phone call
away if they have ANY questions or concerns during the day.
• It helps to gently remind the people who care for our children at
school that with mitochondrial disease, changes happen quickly!
• Use daily checklists for quick and easy yet consistent communication.

14. Tour the school and see if there are any
obstacles for your child
• If your child has mobility issues:
– Are there elevators?
– Are the classrooms spaced well for him or her?
• Is there medicine or special food that needs to be refrigerated?
• What are the emergency procedures for your child in case of fire
or other crisis?

15. Tour the school and see if there are any
obstacles for your child
• Remember to advocate that your child's schedule be adjusted
to suit his or her "better times of the day". For example, can
physical therapy take place in the morning?
• Request a free copy of MitoAction's ENERGY 4 EDUCATION DVD -
a great way to get teachers and therapists up to speed on
mitochondrial disease in less than 10 minutes!

16. When all else fails…
• Ask for a TEAM Meeting.
• Some situations require formality and need to be
on the record.
• If you need help:
– Bring a friend to the meetings
– Ask your medical staff to participate
– Hire an advocate or an attorney

17. Have Questions
Just ask!