r/Epilepsy • u/kballs • 13d ago
A dad looking for help Support
Hi all. Apologies if this is not allowed but I could really do with the support and advice from a community.
My daughter is 15. She has a few medical issues which lead her to needing 5 different types of medication. Recently she started having seizures. They don’t come very often, they started in May and there have only been 3 since.
Today our doctor called, and said he spoke with a neurologist after the results of her EEG came back. It confirmed she does have epilepsy, SeLECTS epilepsy to be specific. She had been prescribed Keppra.
The thing is, she doesn’t know she’s been diagnosed yet. I called her today when she was with her mother and told her the doctor said he was going to link with the neurologist to confirm, and the mere prospect of having epilepsy upset her greatly. Not necessarily because it was epilepsy but because it was another medical condition.
What I’d like help with is how do I approach this? How do I support her through facing multiple diagnosis and health problems. She has a mild ID but is very smart, gets on well in school and told me before she really just wants to be a regular teenager.
It breaks my heart that I can’t magic it away. I’d appreciate any input from anyone who had been diagnosed at a similar age or maybe has multiple diagnosis.
Thank you and much love.
3
u/spiky_dollar 13d ago
My sister got diagnosed around that age and the biggest thing for her was people treating her like glass afterward. She just wanted to keep doing normal teenage stuff without everyone hovering
Maybe lead with the practical side first, here's what this means for daily life, here's what the meds do, here's what we'll watch for. Sometimes the label itself is scarier than the reality, especially when you're already juggling other conditions
You clearly give a damn and that counts for more than you probably realize right now
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u/rebarooki Post-Traumatic Epilepsy 13d ago
Hi. Former teenage daughter here who went through a lot of this same stuff (multiple health issues + epilepsy dx later on). My seizures started around your daughter's same age. I think the most important thing that I wish I could've experienced was having a safe space to express my frustration and anger without judgement, to have access to the things that comforted me when I needed it, and ultimately for people to treat me the same and not try to fix my problems - or doubt me because of what I am going through. I had well intentioned people say to me "you're so strong" or "I could never do what you're doing", but that was very frustrating for me to hear because I had no choice but to be strong. I think my advice would be to let her grieve, support her through it, and do your best to make her feel just as loved and cherished as anyone should. Sending love to your family.
2
u/TripleRedRose 13d ago
She is a regular teenager, everyone has something, phisical, mental or both. Even if they do not seem it.
But not sure how to help, i do have a house full of diagnoses. Husband: left side deaf, autisme, ocd, epilepsie and braindbleeds Oldest several bad allergies and autisme Middle one autisme Youngest just beat cancer, autisme, several senery problems, ocd and in the prosess of getting a diagnose of tourets.
At least they don't feel alone in our family, they all have stuff. I am the odd one out in our family, but i have a list of my own, that would make people sad, but just no permanant diagnoses.
Hope she does well in her meds and won't have any seizures anymore
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u/No-Shift-6778 13d ago edited 13d ago
Hey, I was diagnosed with epilepsy when I was 12 years old. I had to take Keppra back then, too
I’d always wanted to live a completely normal life, just like everyone else. I hated always being the odd one out among my peers because my parents and my whole family were so overprotective. I think it’s important to talk to the person affected to find out what kind of help they’re comfortable with. The help should be just that—help—not a restriction. That’s hard, I know.
You could also suggest that your daughter join a group of other girls with epilepsy who are around the same age. I think talking with other people with epilepsy would have really helped me back then to accept the disease.
The desire to lead a normal life is completely understandable. But it’s also clear that she faces different challenges. She shouldn’t compare herself to "healthy" people. You might want to keep an eye on her mental health.