As a LQT patient-parent as well as an educator-advocate of students facing chronic medical conditions in a large school district, I have learned that “peace of mind” can go a long way in learning to thrive despite medical challenges.  We often feel sidelined by our medical conditions and anything but normal. School plays a crucial role in creating much-needed normalcy for the student/family who may feel life is beyond control when facing these challenges.   

I was very fortunate that my child’s school district recommended a 504 plan to address, not only AED accommodations but also the combination of beta-blocker side effects and unmedicated ADD symptoms with which my son was struggling. However, many LQT families I have had met at SADS Conferences have indicated that they have been told by their school that their child did not need a 504 plan to implement a health care/safety plan including AED access and training.

As an educator, I know that it is a pain to go through the 504 process and much easier just to tell a parent, “No need to worry…We don’t need a 504 plan to provide those accommodations.”  I would recommend parents of LQT students with an AED prescription provide a written request for a 504 plan since an AED is something that the student needs to receive an appropriate education. You are NOT asking too much. 

504 plans are typically considered when a student has an impairment that substantially limits major life activities to help “level the playing field” for that student. Restriction or limitation from many normal school activities due to a potentially life-threatening condition should clearly fit that category. A 504 plan is a legal document (unlike many informal school safety plans) which the school must take seriously. With a 504 plan, a school is legally responsible for purchasing an AED as well as maintaining it and making it publicly accessible (including staff trained to use it during all school activities in which that student participates).

Civil rights are not optional. A child has a right to an evaluation before schools determine if he/she is eligible under Section 504. If refused, the district must provide the parent with notice of procedural rights. At the point, a parent may request a hearing by the district’s Section 504 coordinator and/or, if necessary, follow up with the Office of Civil Rights.   

It’s going to take some work.  You’re going to have to push your body to do things it doesn’t want to do but it will be well worth it to stay in the driver’s seat and not let your condition rob you of a full life!  It’s not going to be easy but you can learn to function and even thrive despite chronic medical conditions through a team approach:  Student, Parent, Medical Provider, School Administrator/Guidance Counselor, School Nurse, Teachers.  Everyone needs to be on the same page.

Pace Yourself.  Moderation is the key:  Don’t underdo it, but don’t overdo it either!  “Underdoing it” leads to withdrawal and isolation.  “Overdoing it” could make you “crash” and then just stay in bed all day.  Give yourself a break when you need one but then go back and tackle the task or goal.  Just don’t stop or you might get stuck!  Whatever the pace, keep moving forward.

Be sure to communicate pertinent medical information. Request to meet with your school team to share medical documentation and discuss most appropriate accommodations and supports available to address these needs in the school setting.  Additionally, a gradual one-to-two week (sooner is better than later) school-reintegration is often helpful in cases of previous extended absence.  Physically entering the building is often half the battle.  A successful school intervention plan includes the student showing up at school and trusting the school staff to implement it.  Since there is no “one-size-fits-all” plan, it may also take a little time to adjust and better individualize it once you have attended school for several consecutive days.  Medical release of information documents can further open up lines of communication between the medical provider and school to tweak the plan, as needed.

Stick to the plan!  Only stay home from school if you have a severe injury or a condition that could jeopardize the safety of yourself or others.  In such cases, your medical team should provide additional information to help your school team determine an alternative plan.  If you don’t push it, you’ll never get past it! 

Develop an extended school support system of appropriate personnel and friends with whom you can share basic information about your condition.  When appropriate (e.g. when you are having a particularly hard time being at school due to your typical struggles), talk about your feelings with these team members.  You don’t have to focus on your physical symptoms (that can make them worse)!

Celebrate Success and don’t look back…except to view how far you have come!

WHEN PIGS FLY

As the loud telephone ring startles me from my sleep,  I inexplicably collapse to the floor and am rushed to the hospital where my heart monitor repeatedly goes crazy with bouts of cardiac arrest as I am inappropriately treated for a gamut of suspected conditions including, due to recent travels, malaria (and quinine, an enemy of the long QT wave, certainly does not help matters)….

If you’d asked the medical staff who defibrillated me over 70 times over that three-day period if I would be–well, since “blogging” wasn’t a word yet in the 1990s, let’s say–”journaling” about my dramatic Long QT diagnosis over 25 years later through a world wide web (words which most likely hadn’t hit the dictionary yet either), they probably would’ve thought:  “WHEN PIGS FLY!”

If you’d asked me, after spending nearly a decade of searching for the doctors who could even try to answer our questions, if I thought that my entire family could be diagnosed and treated for Long QT Syndrome simply through a blood test, I would’ve responded the same.

After tirelessly advocating and fundraising just to get an AED on the wall of my son’s elementary school (once we were able to move beyond ECGs to get an accurate Long QT diagnosis between birth and Kindergarten), if you’d told me that by the time he got to high school there would be an AED less than five minutes away from any point on campus with several portables available for field trips, I definitely would have responded, “Yeah, right, WHEN PIGS FLY!”

After trying to explain to my son, year after year, why he couldn’t try out for the team and painfully watching him desperately try to fit into a young boy’s social world with this little black cloud (and AED) following him around to all the adventurous places he was determined to go, you can certainly guess by now what I would’ve thought if you’d told us that he would be allowed to play sports his freshman year of high school and completely beta-blocker free by his senior year following denervation surgery.

Finally, you can only just begin to imagine my response just seven years ago, after finally trading my debilitating beta-blocker fatigue for an ICD which initially came with its own set of anxiety issues, if you’d told me, after never having run a full mile in my life, that not only would I be meeting and running with other heart patients with implanted devices from all over the world, but also training to run my 15th half-marathon in Cincinnati which just-so-happens to be called          –wait for it–“THE FLYING PIG Half-Marathon!”                               

Will there ever be a complete cure for Long QT Syndrome?  

“WHEN PIGS FLY!”