Rethinking Seizure Care Blog

Preparing Children for a Life with Epilepsy as an Adult

Posted by RSC Diagnostics on Dec 8, 2020

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Parents naturally want to do everything they can to take care of their children. This is especially true when the children are young, and they are dealing with epilepsy. However, as those children start to become older, they have to learn how to manage their own care. This is essential if they want to go on and enjoy all of the other things life has to offer, such as driving, going off to college, getting a job, and becoming independent.

Assessment Tool Makes the Transition Easier

To make things easier, a team of clinicians at Michigan Medicine has created a new tool. The goal is to help better prepare young adults and adolescents to take control of their condition. By preparing early and long before they have to be out there on their own, it provides the young patients with more confidence. Being on their own won’t be as scary.

The customized screening tool is for patients who are between 16 and 26 years old, and it allows the doctors to better “monitor their patients’ development of knowledge and self-management skills” when it comes to their epilepsy according to Epilepsia Open. The tool can help the doctors to see whether there might be any areas where the young adults are having problems with their ability to care for themselves. They can see these gaps and then address them with their patients. This helps to ensure a much smoother transition to adulthood, and it could help with their long-term outcomes.

The tool can allow the doctors, as well as caregivers, to have a true understanding of what knowledge and skills the adolescents have and where they may need to have some additional information and guidance or practice. Ultimately, the tool should help the adolescents to gain the confidence and experience they need to thrive as an adult when they are on their own.

Known as EpiTRAQ, this tool features 35 questions about epilepsy across six health categories. The goal was to make sure that the tool was easy to use and would only require a simple and fast assessment. It’s meant to be used in the clinic every six months.

Why is The Tool Needed?

When kids are small, their parents often take care of most things for them. They make sure that the kids get their medicine when needed, and they ensure that there are refills of the medicine when needed. They make sure that they are getting plenty of sleep, and that they make their appointments with the doctor. Parents plan for emergencies and most other things that the child needs.

However, as kids start to get older, these responsibilities will start to fall on their shoulders. Additionally, doctors in a pediatric setting provide more support for their young patients than what’s found with adults, where the expectation is for them to be independent.

Keep in mind that these adolescents are not simply now in charge of their epilepsy and medication, but they are doing many things on their own for the first time. They are often living on their own, going to work, and have a host of other responsibilities. It can sometimes feel overwhelming, even when someone isn’t also managing epilepsy.

This is a big transition, and it can carry some risks along with it. Patients need to be sure they are seeing their doctors when needed, that they’re taking their medication, and that they get prescription refills. They need to know how to respond if there is an emergency. Otherwise, they could be in a dangerous situation.

With EpiTRAQ, it will be much easier for doctors to know where their young patients stand. They can speak with the patients and their caregivers about any areas that need improvement. This can help to provide the youngsters with an easier transition to adulthood.

 

Sources:

https://labblog.uofmhealth.org/rounds/preparing-adolescents-epilepsy-to-manage-care-through-adulthood

 

Topics: Managing Your Epilepsy