I find it extremely helpful to keep a seizure diary for a child with epilepsy - not only for me, but also for the medical staff. It shows them how frequent my child's seizures are, what side effects we see and they can also see if they see any patterns in the frequency - patterns in medication, dosage or simple triggers like weather or exercise.
What's in the diary - Symba is very modular
When I note a seizure, I also write down what Max was doing, how much he slept, when he last took his medication and if there was anything that stressed him out. These are our main triggers - and it's all doable with the Symba app. I think it's important to note everything that could have contributed to triggering the seizure. By having all the medications and dosages set on the app, the neurologist can see if the medication setting is correct or needs to be tweaked.
What I have learned
My seizure diary has been very helpful in finding other causes for the seizures. By recording the seizures between me and my epilepsy specialist, we noticed that the seizures occur at a certain time of the month, over a period of 1-2 weeks. This helped us to find solutions and deal with it better. Since we started using Symba, Max has also been able to describe his problems better. We use Symba together and it has definitely brought us closer.
What I use Symba for in everyday life
Symba as a seizure diary helps me to keep track of Max's seizures because my memory is not very good, so I forget dates and times very easily. I can also share the data with other doctors at any time - even our physiotherapist has changed his therapy with the app.
How Symba has also helped
Overall, the seizure diary has helped me in many ways:
- It has helped Max to better describe his problems.
- It has helped us to explain everything to our neurologist in as much detail as possible.
- It helped us to explain the situation to other doctors. E.g. eye doctor
- The medication was changed, which had a very positive effect. We could see this graphically with Symba and observe it better
- Symba sends medication reminders - I have 2 other children. This reminder is essential
Symba is really very helpful!Thanks