My 7-yr old DD has epilepsy. In the past, I have never felt the need to share or request support or join the epilepsy foundation or anything... but lately things have gotten a little tough to deal with. Her Epilepsy is mild - her seizures are mild, and mainly show only in her face (her left side goes slack and her mouth and tongue pull and tick, as well as her cheek, etc.), but they scare her and she hates it. We have basically been able to control them with meds over the last few years, but lately it's getting harder, and she's now on such high doses of meds that she's having dizzy spells and actually fell asleep in school last week one day after we had increased her dose yet again!
Anyway, I couldn't find a support board for children with epilepsy here on PO, so I thought I would just ask here and see if there is anyone here who could share their story. I guess I just need to meet a few other moms who have or are going through this and can understand my feelings and frustrations with the whole thing... I feel so guilty as her mom that I can't just make it go away. She has dealt with it so well, and understands everything about what's going on... and I just wish that she didn't have to, you know?? I just feel so... helpless and sad about the whole thing, I guess.
And I'm thinking that being pregnant and dealing with the extra hormones isn't helping...
I don't have a child with epilepsy but my DH has it. I also have a very good online friend who has a daughter with it. I could probably get you Jenn's email if that would help. Dealing with seizures is not fun and I only have to deal with an adult.
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"The soul always knows what to do to heal itself. The challenge is to silence the mind." Caroline Myss
I'm so sorry that you're having to deal with this! I cannot even imagine how difficult that must be. Like pp, I don't have a child with epilepsy but my DH has seizures and we have had to deal with the meds and side effects that to along with that. It's not fun! One dr mistakenly put my DH on a lethal dose of a medication and he was overdosing for days before we figured it out and got it changed. I know how rough it can be just with my DH. I would imagine having it be a child and being pregnant would make it so much worse. My heart goes out to you! I hope you can get things figured out so it gets better soon!
While I don't have a child with epilepsy I do have a child with medical issues and it can be very trying to say the least. I was just wondering if you've thought about posting on the Special Needs & Birth Defect board? While I can't specifically think of anyone off the top of my head, there may be some ladies can relate. And I can attest they are an AWESOME group of ladies.
I don't have a child with epilepsy but I have experience with it. My sister as a young child had grand mal seizures whenever she hit her head. Back then, the doctors called it "external trigger epilepsy" like when some people have seizures from bright flashing lights, but it has a different terminology now.
Anyway, that's my history. And since I'm a geek I tend to over-research a lot of things. So when my infant son had what I believed to be febrile seizure last year, I did a ton of research about seizures & epilepsy just in case. I was intrigued to discover that a Ketogenic Diet has been shown to greatly reduce the number of seizures in children, sometimes even completely!
It's a very difficult diet to follow, but even modified versions like Atkins, Sugar Busters, and the Low-Glycemic Index Diet can bring great relief, and they tend to be easier for adults to follow since they allow a bit more freedom but more balancing.
Obviously, consult her doctor first, but this might be something for you to consider since her medication is no longer working well and the side effects are starting to outweigh the benefits. I think, if I had a child in that situation, that I would probably try one of these diet changes for at least a month or two & see how my child responded. Yes, these diets are hard, but it might be very empowering for her, if it works, to know that *she* can do something to help control her condition. Good luck to the both of you!
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My son Kaden, has epilepsy. Tonic Clonic Frontal Absence. he is 4 yrs old. He had a very difficult time on western meds...serious side effects to the 3 he tried ...Was so so so hard giving him those meds knowing the side effects ..I am sure you understand . I decided to take him off the meds about 2 or so months ago. He is on the GARD diet, less soy (casien free, soy free, corn free (blue corn ok), gluten free). Overwhelming and scary to take all in at first..but after a few months, it really does get easier ... Vitamins he takes for now are, Taurine, DHA, Multi, Magnesium, and Melatonin (will prob add a few b's as well...6 and 12). Kavinace..(GABA, but better? supposedly) is a thought, only if tonic clonics become an issue again...That said, I would likely try to increase Taurine first, as more research still needs to be done on Kavinance .. plus I feel blood work prior, would be important..Ketogenic is something I would consider only if the diet he is on now, was not working, and would want his pedi or neuro to hospitalize him first, than I would continue at home. Most neuros won't even consider agreeing to the keto diet unless 7-8 meds have failed tho ..Hang in there....I know how hard it is! Kaden's seizures are nocturnal..He sleeps next to me and I check his breathing every time I stir ..Horrified of the tonic/clonics that come then..He has gone status elepticus twice. I am considering an epilepsy monitor maybe sometime this year.
Last edited by AVoiceInTheWilderness; 04-13-2012 at 11:16 PM.
Old username ~ Mom@41
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DS ~ Kaden
DS ~ Carson
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