That sucks
Is it something that might be a regular occurrence now?
I thought it was a one time thing that happened, suck that it's still happening, hope the Dr. find a way to keep it from ocurring. So sorry to hear
Where were you two when it happened this time? were you able to remain calm or panicked again?
Getting EEG and MRI tomorrow wish us luck that the MRI isn't scary/traumatic plz and that she STAYS STILL! (she wont be sedated LOL)
She has what they called mesial temporal sclerosis. She has epilepsy from it. It's supposed to be medication resistant and she'll probably need surgery but the surgery is supposed to fix it entirely.
We started a medication yesterday. I don't know what happens next. I'm kinda in limbo.
Holy crap, Cindy I'm sorry! I'm off this board so much I had no idea. Nothing is worse than having a child with a health problem, and I honestly can't imagine seeing your kid have a seizure.
You know there are assistance dogs that can tell when a seizure is coming on?
Another thing you may want to look into is a ketogenic diet. It was originally developed for medically resistant epileptic children.
I noticed a lot of times when a patient is going to have a seizure if you look at the cardiac monitor you'll notice a change in rhythm i know that's not to help for since you don't have a cardiac monitor but little pulse ox show the change in heart rate not sure this will be helpful but it won't hurt to know
Well, I'm not on Facebook anyway ...It sucks. I just found out a week ago it was something that wasn't going to stop, and I understand if people aren't rushing to read this thread. It's a depressing topic. I just haven't had the desire to post about it on FB.
I have looked into the Keto diet, as much as I have been able to in the past week. I've been hesitant to put her on the diet, just because it seems so difficult for a little kid to adhere to but I may have to go that route. I wish I knew what started all this.
She fell and hit her head. Supposably, it was a minor bump on the head. She didn't even have a bump from it though. No goose egg or anything. But now the seizures. Now she has this scarring in her temporal lobe. I don't really understand whats happening. Makes me think maybe it wasn't such a minor bump on the head.
Hey Cindy hope she's doing better now. Kid I know use to have seizures and just grew out of it I guess. Keep your head up you guys will figure it out.
why are you always tryin to bang mitchs girl way to be a good bro u scumbag fuk eat a grenade
Well, I'm not on Facebook anyway ...
I don't understand something, where's her pediatrician in all this? Do you have a pediatric neurologist you're working with? With something like this, talking about a child, you need an involved advocate. That might mean you need a different specialist. Unfortunately, sometimes that means going out of network and into your own pocket for decent medical care. It's better to have a doctor you connect with and who actually makes time for you, that you can talk to, than the cheapest one. Most of the time, even if a physician is out of your network, studies can be performed within in-network facilities. That's kind of where I'm at with both my sports medicine guy and chiropractor. No decent pediatric specialist should be blowing you off the way you're describing.
Got a list here, don't know if you've already seen it or not: U.S. News Best Children's Hospitals: Neurology & Neurosurgery
Anyway, if you are used to cooking from scratch the diet isn't as awful as you might think. My husband and I have been following it for nearly a year. Once you get "used" to eating this way (and one thing I do know is that you really need a dietrician and involved physician for the pediatric epilepsy version) the next biggest problem is the real tendency to fall into a food rut. The nutritionist should help with this to a degree. It IS something that needs to be medically supervised though. The diet changes just about everything you can think of metabolically, from how your brain operates to how your body processes water and salt.
Anyway, if the keto diet turns out something you're going to follow this board has an AWESOME recipe forum: Low Carb Friends
However, I would suggest you check this website, as well, if you haven't already. The Charlie Foundation - The Charlie Foundation for Ketogenic Therapies They have a contact page and could possibly be a really good resource for giving you some ideas on how to proceed. It really sounds like you're out in limbo. The best advice always comes from people who have already navigated the maze. Seriously, at least find a support group in your area for parents of epileptic kids, THEY know who the good doctors are! Heck, most of them are as good as a physician when it comes to interpreting labs and studies.
Hey Cindy hope she's doing better now. Kid I know use to have seizures and just grew out of it I guess. Keep your head up you guys will figure it out.
If it helps any, I have a young cousin probably close to the same age that was born with a disorder, not sure of the name, that causes seizures. It took a little while and different medications but they've been reduced down to where they're pretty rare now.
Visited this site for the first time in 2 years and saw this thread.
My friends 3 year old started having seizures all of a sudden. The kid would just fall flat on his face. It got more and more frequent, eventually more than every day. He had to wear a bike helmet all day.
Mom was a wreck. I would see her, and see the tired and scared look in her eyes. It was very sad.
They put the boy on medicine but it made the poor kid a zombie, and didn't stop the seizures. I don't what the medicine was.
Then they discovered high CBD marijuana and CBD oil. Started giving the kid CBD oil and the seizures stopped almost immediately.
It was like a miracle and I don't really know how else to describe what a blessing and a relief it was for this family.
My wife just told me that now the kid doesn't take it anymore. He was on it maybe 1.5 years or so. He seems to be cured. Dad was growing high CBD plants for while. I am in Colorado, so it is a much simpler matter to find and try this.
I can imagine what you are going through cindylou, and hope you find a solution soon. You should google "CBD oil for seizures."
I'm not planning on becoming a regular around here like I used to be, but if you want me to find out more specifics about this family let me know, and I will find out all I can. I will check back in here for the next few days.
Good Luck!
That's how I am. Abby's have increased frequency from once a month to once every three days. I hope I don't make it to the every day mark..omg I couldn't handle it. Or the multiple a day. I don't know how people cope with that. :/
I would appreciate that, I am a Colorado resident although I don't have any cards for getting anything, if you could find out anything for me I would appreciate it. I've read that some kids need thc and some don't and I don't know where to start at all. Anything helps, I would appreciate anything. Thank you so much for taking the time to respond.
Cindy, rally the troops. Seriously. Take every bit of help and information you can. You can't inform yourself adequately PLUS hold down life PLUS be mom PLUS ... you get the point.I need to drink more water
I know a lot of mothers reach out to people online and rally the troops so to speak, but I don't want to do that. I guess...I don't want anyone feeling sorry for us so I don't say anything to anyone. But I get a twinge of jealousy when I see people living their lives, dressing up for Halloween, arguing over politics, having a glass of wine, sending their kids to school. I'd stop looking but I already feel isolated.
That's how I am. Abby's have increased frequency from once a month to once every three days. I hope I don't make it to the every day mark..omg I couldn't handle it. Or the multiple a day. I don't know how people cope with that. :/
I would appreciate that, I am a Colorado resident although I don't have any cards for getting anything, if you could find out anything for me I would appreciate it. I've read that some kids need thc and some don't and I don't know where to start at all. Anything helps, I would appreciate anything. Thank you so much for taking the time to respond.
You don't need a card for cbd oil. Most rec places have it in oil and gummy form.
So sorry Cindy and I will be praying for you. As a dad of 3 littles my heart breaks for you. I can't imagine watching your child hurt and feeling like you don't know what to do. Prayers.
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