As we plan to go back to school this fall, UCB connected with two mothers who serve as primary caregivers for their children living with severe, chronic diseases. We asked them to share their concerns, tips, and advice to promote school staff education and the safety and wellness of their kids, to make the transition back to the classroom as smooth as possible. 

Crystal, a former teacher and school administrator, cares for her son, Geordan, 16, who lives with Lennox-Gastaut syndrome (LGS), a severe childhood-onset developmental and epileptic encephalopathy (DEE), characterized by drug-refractory seizures with high morbidity¹ as well as serious impairment of neurodevelopmental, cognitive, and motor functions.²  Lynne is the caregiver and mother of Nick, 18, who has myasthenia gravis (MG), a rare, chronic auto-immune neuromuscular disease associated with muscle weakness, which can result in symptoms such as drooping eyelids and double vision, in addition to more severe and life-threatening failure of the muscles that help with swallowing and breathing.³

A new school year brings new teachers and other faculty, and sometimes it can feel like parents of children with severe, chronic conditions have to start over. After speaking with Lynne and Crystal, we took a closer look at what back to school looks like for them and their kids.

Partnering Through Education 

The first piece of advice that Lynne and Crystal offer is to partner with your school to educate the staff about your child’s condition. The more information that a teacher or staff member can have about your child, the better prepared they are if additional care is needed or if there is an emergency. Lynne shares, “Like many, I had never heard of myasthenia gravis prior to Nick’s diagnosis. Knowing this, I can empathize that Nick’s teachers are not medical professionals with extensive knowledge about his disease. So, to prepare in the case of an emergency, every teacher at Nick’s school put his contact information in their phone along with ‘myasthenia gravis’ and any other information they would need to tell paramedics. In addition, there was a medical plan in each classroom with Nick’s name on it for any substitute teachers so everyone was prepared for any emergencies that could arise.” 

Beyond a medical emergency, there are other considerations for which teachers should be prepared. Crystal shares, “Typically when it comes to neurological issues, people are familiar with either the health effects or the behavioral effects, but when you're talking about neurological issues, you often have both. In Geordan’s case, he has seizures and needs support from the medical side, but he also has behavioral issues that are tied to the seizures. This was a challenge I faced in school. We could not continue removing Geordan from the school setting for behaviors that were a result of his disability. We needed to work together to find a way to accommodate both his medical and behavioral issues.”

In the case of Geordan, school staff may be aware of how a seizure presents, but may need additional information about rescue medications, which are ready-to-use solutions that can be used when and where a seizure cluster occurs and can be administered by a non-healthcare professional to a patient during or after a seizure within a cluster.⁴ Based on research conducted by UCB, around 67% of school nurses are very familiar with seizure clusters (periods of increased seizure activity, which is having two or more seizures in a 24-hour period), but more education is necessary.⁵ Nurses shared that the ease of use and ability to train others to use rescue medications, not just those with nursing background, is highly beneficial and can help to ease concern due to staffing issues or when the nurse is at another school.⁵ 

Crystal shares, “Everyone must be on the same page with Geordan’s care plan, understanding best practices and what to do in case of an emergency. For example, Geordan could have a drop seizure, and staff members must know the protocol for when that happens, like how and when to administer his seizure rescue medication.” Drop seizures cause a person to suddenly lose muscle tone, become limp, and fall to the ground, with a high likelihood of injury.⁶ Therefore, the education and training of other staff members to utilize all tools available, like seizure action plans (SAP) or a rescue medication, is paramount to ensure your child’s safety and success at school.

Building a Care Team

Working to build a care team around your child while at school can help you feel more secure in their ability to care for your child, no matter the circumstance. This can include partnering with your school’s faculty to create action plans or customized educations plans (SAP, behavior plan, individual education plan, etc.) to ensure that everyone feels prepared in any scenario. Lynne explains that Nick’s school principal has been an immense help in curating Nick’s care while at school. “I was able to meet with him in the beginning of the school year to create an action plan,” says Lynne. “And he set up meetings with Nick’s teachers so I could provide them with details about his condition so that everyone was prepared before the first day of school.” 

Intentionally seeking out individuals and staff members at school to champion your child’s growth is crucial for your child to feel supported, cared for, and seen during the school year. Similar to Nick’s school principal, it’s important to find individuals who will care for your child and celebrate their wins inside and outside the classroom. This was especially close to Crystal’s heart, as she shares, “We have a lot of happy moments, and it's amazing to have people in Geordan’s life there to celebrate them. Just last week, Geordan was working with his speech therapist, and while she’s celebrating his improvement, his nurse was right there with him, cheering him on. It was amazing to see that for them, it wasn't just about how well he was doing, but that they were truly excited and happy to just watch him. It made me tear up because I know that I can't be all things to him, so to know that there are other people that care about him as much as I do warms my heart.” 

Advocating for Your Child 

As a parent or caregiver, it’s imperative that you advocate for your child and encourage them to advocate for themselves while at school. That may entail going the extra mile to make a phone call, fill out additional paperwork, or even visit the school to educate new staff members. “As a parent, you must be present for your child. You have to make those important phone calls and continually follow up because you need to make sure that your child’s care is top of mind for those involved,” Crystal shares. And while encouraging self-advocacy is important, it’s also helpful to note that not all children are comfortable sharing their story. Because of this, going above and beyond to advocate for not just your child’s physical health but also their mental health is important, as constant questions from faculty and classmates on their well-being can take their toll.

If possible, it’s also beneficial to bring in other people from your child’s healthcare team, like their primary care physician, former nurses, or specialists who can share past experiences that the faculty may find helpful. Crystal shares, “By bringing in individuals with past experience and helpful tips, you can ensure that your child is not just a piece of paper or a number. We had a state specialist come in to do observations on Geordan and also, to build a behavior plan for him, and it helped tremendously.” By humanizing your child’s experience with their condition through a qualified third party, it helps staff members resonate with your child’s needs and feel more prepared going into the school year. 

While parents and children alike prepare for going back to school by buying pencils, notebooks, and planners, it is important that caregivers prepare in other ways like the creation of SAPs, learning about rescue medications, and meeting with your child’s school to discuss the details of their care. By educating those who are with your child on a daily basis, to create an effective care team that will advocate for them both inside and outside of the classroom, you can help ensure your child’s safety and security all year long. 

We would like to especially thank our caregivers Crystal and Lynne for providing invaluable advice as they themselves prepare to get their children back to school. 

References:

1. Strzelczyk A, Schubert-Bast S. Expanding the Treatment Landscape for Lennox-Gastaut Syndrome: Current and Future Strategies. CNS Drugs. 2021;35(1):61-83. 
2. Arzimanoglou A, French J, Blume WT, et al. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology. Lancet Neurol. 2009;8(1):82-93.
3. gMG Never Rests. Understanding Uncontrolled gMG. https://www.gmgneverrests.com/Understanding. Last accessed 10 August 2022.
4. UCB corporate website. Infographic: Seizure Clusters. https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/Learn-More-about-Seizure-Clusters. Accessed 10 August 2022.
5. Data on File. UCB, Inc.
6. Mastrangelo M. Lennox-Gastaut Syndrome: A State of the Art Review. Neuropediatrics. 2017;48(3):143-151.

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