How to Advocate for Your PH Child’s Education

Colleen Steele avatar

by Colleen Steele |

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Pulmonary hypertension (PH) has a ripple effect on family life. A diagnosis is like a pebble tossed into water, its weight disrupting the calm with waves of change. My advice is to wade through those ripples and rescue some normalcy. It might take time to calm the waters, but your patience will be rewarded.

One of our many concerns when my son was diagnosed was how PH was going to affect his education. As summer ends, it’s a good time for me to share tips on how to advocate for PH children who are returning to school. There will be academic and social challenges, but if you are as motivated to communicate with school staff as you are with your child’s medical team, a functioning new normal can be reached.

If you’re lucky and your student’s school has a registered nurse, he or she can be an asset in addressing your child’s medical needs.

My son, however, attended a small, private Catholic grade school where the administrative assistant wore many hats, including that of a non-registered nurse. Understandably, she felt overwhelmed and unprepared to be held responsible for a child with extensive medical needs.

My son was on complicated, continuous IV therapy, taking numerous medications with the potential for serious side effects. Any emergencies would require a quick response and special care until paramedics arrived.

Join the PH forums: an online community especially for patients with pulmonary hypertension.

It was a huge responsibility to place on the shoulders of the administrative assistant, teachers, and other staff. I completely understood the worry, but I was desperate to save this part of my son’s pre-PH life. For the benefit of his mental wellness, he needed to return to his friends and the comfort of a familiar setting.

Luckily, I was employed as the parish secretary and worked in the building across the parking lot from the school. This meant that at a moment’s notice, I could be at my son’s side and relieve the administrative assistant in the event of an emergency. I could also help with any other concerns.

It’s convenient if you work close to your child’s school, but most parents probably do not. An option for stay-at-home parents or those with a flexible work schedule would be to take advantage of volunteer opportunities at their child’s school. This lets them be helpful in more ways than one.

Whatever your arrangement and whether a school nurse is on staff or not, there is an additional protective measure that I recommend PH parents take. Request a staff meeting to explain and answer questions regarding PH and its symptoms, cover the complexities of PH treatments, and address their side effects.

People in the PH community commonly use Accredo Specialty Pharmacy. What they might not know is that they can schedule an Accredo nurse to visit their child’s school and speak to the staff on their behalf. At the start of every school year since diagnosis, this is what I have arranged.

The nurse helped explain PH and answer questions. She also provided hands-on education regarding the CADD-Legacy pump and how it administers continuous IV Flolan (epoprostenol GM) through a central line leading to my son’s chest. She familiarized the staff with the pump alarm and how to troubleshoot any malfunction it might experience. The staff was informed of how critical Flolan was to keeping my son stable and how serious it would be if he suddenly stopped receiving it.

The nurse also covered other PH medications such as Revatio (sildenafil) and Tracleer (bosentan), and explained how vasodilators can give patients a flushed appearance, making them look healthier than they really are. She discussed side effects, especially proneness to migraines. She also highlighted my son’s special needs that would require patience and understanding: frequent use of the restroom because of diuretics, inability to partake in most gym activities, and the need to remain indoors during extremely hot or cold weather. An IEP or 504 plan can also help address these and other needs and concerns.

At the start of every school year, I gathered PH resources and created an extensive list of medications, emergency contacts, and other pertinent information, and organized it all into a binder. This was kept at the front office, in the administrative assistant’s care. If Murphy’s Law struck and I couldn’t be reached during an emergency, the staff was well-prepared to help my son.

Consider providing support to your child’s classmates by having someone — a teacher, an Accredo nurse, or yourself — carefully explain PH to them. They, too, will have questions and will need help understanding what their friend is going through. Also, reach out to their parents by offering PH resources. I recommend the free PH wallet cards available through the Pulmonary Hypertension Association.

Thanks to advocacy and enormous support, my son attended this school for five years while living with PH, and graduated from eighth grade with his friends.

I wish all students, including happy home-schoolers, a successful school year that is medically uneventful.


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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