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I'm just an upset Mom :(

Mon, 10/05/2015 - 17:05

I do not understand what is happening to me.  At 3 years old it was the Autism label which I greeted with a smile and had fun with my kiddo making visual schedules, tons of therapy, IEP meetings, and doing social skills training through a terrific art school near by.  At 7 it was the ADHD label which I shrugged off and gave him a reassuring hug (because I *could* finally give him a HUG) and enrolled him in Karate to help with mind and body coordination and awareness.  But my smile faltered when now at 8.5 years they tell me he's having seizures and probably has been for some time.  That hopefully his kind of seizures will be responsive to medication and that in several years he may out grown them.  We'll carry the autism and ADHD tags for life.  The seizure tag maybe not for life (if we're lucky) but for some reason the seizure label has made me a depressive wreck.  I think I'm scared of loosing my baby.  I'm scare of the concept of brain surgery.  I'm scared that this has been going on with him for some time, possibly since the beginning, and I didn't think it was a big thing.  I'm scare that I have absolutely NO control over this.  There's no amount of therapy and working with him and connecting with him and reassuring him from me that can make it go away.  I am absolutely helpless in helping him other than getting the medication that may or may not work and continuing to see a really good pedi neurologist.

About all I know at this point is "Right Hemisphere seizure" "Tonic" and he's more prone to them when tired, on stimulants and/or dehydration.  The diagnostic code description is pretty vague "seizure and other convulsions", but that's probably just for insurance and not really useful to anyone else.  We're going in for an MRI and some more testing over the next month or so to get more information.  He's starting on lamictal with a titration schedule (10 mg for 2 weeks, 15 for two weeks, 20 for two weeks, 30 for 2 weeks and so on with part of that dosage in the morning and part in the afternoon).  I trust the neurologist and our developmental pediatrician.  I just know nothing about the world of seizures so I'm fumbling in the dark by a lot.  And I have a lot of mom guilt over the fact that I'm falling apart rather than keeping it together because my child is the one going through this and not me. 

Thanks for reading my rambling.  I just needed a safe place to break down and put it in writing which makes it real for me.  I'm pretty well known for putting on the mask and pretending like everything is awesome even when it's not.  It's how I feel useful in crappy situations.

Comments

I remember when I first found

Submitted by kristicain12@gmail.com on Mon, 2015-10-12 - 23:23
I remember when I first found these boards.  I was absolutely terrified.  At the time I had always lived the life of having a "normal" daughter.  Everything I saw about the life of kids with epilepsy the traumas endured by their parents seemed anything but normal and I wanted nothing to do with it.  You have already been so strong and carried so much for your little guy, it is totally understandable to feel overwhelmed, and that this is so much more than you can or want to handle.  Let me tell you, these boards will be your lifeline.  These boards educated me about my daughter's condition more than any medical book, article, or pamphlet ever could.  These boards will teach you what is "normal" for your child's epilepsy, when to get help and where to find it.  These boards will give you a safe place to vent, cry, and rage against the universe and the demon of e that binds us all together.  These boards will save your sanity and may even save your child's life.  I know they did mine.  I've had many friends in my life but few come closer than these brothers and sisters in the storm, most of whom I have never met in person.  Even though there is no good place for a family battling seizures (other than seizure-freedom), these boards are a good place to start.

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