For those of us in the LGS world, we all know that the next appointment with our loved one’s neurologist/epileptologist is marked on our calendars in big, bold letters. This is the day when we’ll be given an audience with this very busy individual who'll be seeing many families just like ours in that one day. We have this finite amount of time in which we can spew out the events that have occurred since the last visit. It’s another opportunity to try to unlock the mystery that is LGS. How can we maximize the treatment options so that we can improve the quality of life for the most precious person in our lives?
When you're new to the diagnosis, you may stutter and stammer and trip over yourself trying to paint a picture of what it’s been like. He’s not sleeping! She’s having way too many seizures (one being way too many if you ask me, but I digress)! He can’t eat or drink! She’s drooling! He’s twitching a lot. Is that a seizure? Nothing is helping! I feel like taking her off all of these drugs! They don’t work!!
Then, your doctor asks for the specifics. "How many seizures… what time of day…what do they look like…?" And based on your response, they probably will make some changes to a medication or introduce a new one. One month, 3 months, 6 months later you’ll be back in the office to do it all over again.
As many of us have discovered, we need to be as clear, as specific as possible when having these appointments. And we’ve all found our own way of collecting this info and presenting it in a way that maximizes our time with our doctor so we can walk out of that office feeling hopeful for the future, like we have a next step.
There are tools out there for us to use that will provide the much needed info that the doctor needs. What are your tools? All you have to do is Google the words Seizure Diaries and apps, pdf documents and calendars pop up. So how do you choose? We all have our own idea of what’s best but the most important thing to know is that the info we provide to our child’s physician is critical in treatment planning. This information includes type of seizure, frequency and duration but also includes lifestyle changes such as sleep patterns, stress, diet, illness, etc. And when there are changes in medications and dosing or new medications, we need to closely monitor the effects of these changes.
I'd really recommend reading the reviews on some of these apps. Some are not as user friendly as others. Some do not provide enough focus for documenting seizures in those who have a more severe, rare epilepsy. Here is a small list of highly rated apps -
Seizure Tracker. One of the more popular apps for collecting data, it was developed by parents of a child with epilepsy. It includes features like Quick Capture that allows for the recording of the seizure and stores it in an event folder. Other features include documenting when rescue meds are used and VNS usage. Seizure Tracker is available for iphone and Android and it’s FREE!
The Epilepsy Health Storylines app is described as ‘more than just a tracker’. It can be synced with a FitBit or other health device and includes such features as medication reminders. This may not be a hugely popular tool for many of our loved ones with LGS as they aren’t always capable of communicating their triggers or mood patterns but many caregivers have become pretty adept at figuring out a lot of that non-verbal communication. This app allows you to document all of that info. Epilepsy Health Storylines is available on iphone and Android and it’s FREE.
Epilepsy Journal is an app that was created by Toronto-based parents of a child with a severe refractory epilepsy. With high marks for ease of use, this app offers features such as timers, trends, dosing reminders and can generate reports to share with physicians. Epilepsy Journal is only available on Android and is FREE.
There are many more apps than the ones mentioned here so I'd encourage you to check them out. I think it can't be overstated the importance of documenting as much info as possible. If seizures go down, or behavior gets better, and you log it, you can look back objectively and see what really happened. Sometimes when we look back our perception of how it was and what really happened varies based on how bad a day we, the caregivers, may have had. These tools help make it a bit more objective.
But if you’re like me and a bit old-fashioned, your phone may not always be in reach for recording; or you just like the good ol’ pen & paper approach to tracking and documenting your child’s seizure activity. I keep all the info on a calendar and bring it with me to our meetings with his doctor. If you want something a bit fancier you can always go to google images and type in Seizure Tracking Calendar or Printable Seizure Diary or words similar to that. Here you’ll find multiple options. Pick the one that suits you best or explore your inner artist and create your own.
For some, this all seems like a lot more work and requires consistency and organization. Please do yourself a favor before feeling inadequate or incapable of keeping this structure in your lives. None of us can do this perfectly. We will miss the occasional seizure or forget to write something down. We might even forget to give a medication on time or at all. These tools might be useful or not.
I have no doubt that whatever methods work for you are the best you can do and that is good enough.