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"Parenting" a 23YO daughter with grand mal seizures
Epilepsy & Seizures | Last Active: Dec 19, 2024 | Replies (28)Comment receiving replies
I like the idea of being more aware of triggers by monitoring vitals and habits. I keep telling her to keep a journal (it could be in the notes section of her phone) to record the context of each seizure, what type it was, and how long it lasted so she can develop some sense of what triggers them. I think when someone is that depressed, they just don't have the energy to put towards such things because they are just surviving. It is hard to watch.
I love the idea of a dog! If I could have a service dog, I would be pursuing it immediately myself. She thinks it would be embarrassing to need a dog but she loves animals and I think a constant companion you are allowed to take anywhere would be amazing!
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I have 2 dogs who are also my legal ESAs. One in particular will stand by me it seems when my stress increases. I notice so I slow down do deep breathing. Dogs are calming.
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Hi Heather again @adoptivemother
There is an excellent book called Taking Control of Your Seizures: Workbook. You can easily find it at Amazon: https://www.amazon.com/Taking-Control-Your-Seizures-Treatments-ebook/dp/B01556P55I
I have been in contact with Dr. Andrews through online sessions. She has helped me a lot. She has epilepsy herself and understands very well her patients. On the internet, you can easily find some videos and articles about the Andrews-Reiter approach (scientifically proved). I have copied here one of the articles on this approach: https://epilepsyconference.com/aboutar.html
Dr. Andrews has recommended that I keep a daily journal to learn more about my seizure triggers and not only make notes when a seizure happens. A seizure might not take place right after a trigger, it can take some time and days. For example, I do not have a seizure right after a stressful day or a bad sleep, it might take some time before it happens. By keeping my journal daily, I have learned what my triggers are. As @jakedduck1 mentions, amnesia is so common after a seizure. Before starting a daily journal, I would only make notes after a seizure had happened, having a hard time remembering all the facts before the seizure and understanding the triggers of it. With this daily journal, after having recovered from my seizure, I would go back to my journal and read how my days before the seizure were, making it much easier to understand the trigger or triggers of this seizure. And later, I would discuss with Dr. Andrews how to avoid my triggers or to cope with them. I can say that today I manage my triggers better.
As to seizure dogs, I have copied here a link with more information on it: https://www.epilepsy.com/stories/dogs-household-pets-or-medical-equipment-for-those-living-with-epilepsy?utm_medium=email&utm_source=pardot&utm_campaign=epilepsynews_04032024
On YouTube, you can find good videos explaining more about seizure dogs.
Have a nice day!
Chris (@santosha)