kiddo had another seizure today

[cindylou]

thanks zwhit, FT xx Sorry I haven't had a chance to respond to you MM I will when I get a chance..she did have two more this week and I haven't a chance to really respond. There aren't any live support groups that I've found yet nearby but I did find a couple online and found some support there but also find reading though some of these people's experiences very depressing.. only the ones that have surgery seem to be really living seizure free. Maybe the ones having a hard time, or new people like me visit online support groups. I don't know. I have also called everyone I can and have a plan B, C and D. It is scary, but it gets less scary with each one. Or I guess a person just gets used to things. We doubled the Keppra, and wait to see if that works. Hospitals are getting that hotel room feeling. It's not home but I've gotten comfortable being in one.

This feels very superstitious, lol You know like when you're watching a baseball game and you wear a shirt and your team wins, so you wear it the next day because if you don't wear it what if they lose? But they lose the next day and you realized you did have on a new hat so you ditch the hat next game because if you wear the hat you might lose again. But you keep the shirt. This is the same thing. That is basically what the doctors do, just with medicine and so-called "triggers". Lol. 10 hours of sleep, no carbs, take out soda, no soda isn't a trigger it's fine, add this medicine and take that one away hop on one foot, touch your nose and say your ABCs.

 

[nangiggles]

 

[sexyMFer]

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.

 

[cindylou]

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.

Is your cousin okay? Like, socially and developmentally? Mentally? It's okay to tell me the truth it will put more fire under my feet.

Abby did everything early. She rolled over early, she sat up early, she spoke early, she wrote early, she is athletic and coordinated. The idea that this started from a developmental disorder in her brain vs. a head trauma is what doesn't make sense. To me, she hit her head and the problems started. They're trying to say she's always been this way. No. She hasn't. And if this keeps going I don't know if it's hurting her brain. Your brain is who you are. It's everything. I'm scared.

 

[sexyMFer]

Honestly I'm not that close with them. They don't live near me so I only see them once or twice a year but he seems to be in line with the other kids around his age.

Just remembered I went to school with a girl that had fairly frequent seizures too. She was fine socially and she was in my classes so she had to be pretty smart

But seriously, the only thing different about her was that she couldn't get a driver's license back then. Seems like I've seen her out driving since high school though. I'd want to make them stop too but there's still hope

 

[cindylou]

I need to read hear more stories like that!

Not getting your drivers license immediately sucks for a teen but isn't the worst thing in the world for a parent lolol

she had another one last night

it was short and brief, and she didn't turn blue. We didn't go to the hospital for this one.

 

[cindylou]

I want to post a good update but I'm afraid to jinx it

 

[cindylou]

I've been reading and reading and reading

I can't find anything on mesial temporal sclerosis and generalized epileptic seizures. She has generalized seizure activity that isn't starting in the temporal lobe and isn't having complex partial seizures. (unless they change their mind, I have given the epitologist some more info and have another appt on tuesday...) but so far the EEG shows generalized seizure activity but the MRI shows temporal sclerosis. So I don't really understand..they both conflict each other. She doesn't have focal seizures. Would be a hell of a lot more interesting if she did, to be honest. The temporal lobe kind sound almost, like they could be a cool experience. But she doesn't appear to have that. Unless of course, they change their mind again. Anyway. I am so confused. Im never going to find out what caused this if I can't even figure out if she's having focal or generalized seizures!

 

[Headholio]

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!

 

[Headholio]

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!