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kiddo had another seizure today

thank you pick xx She's totally normal and back to her normal self, but they're sooo scary.. I don't know how Im gonna keep doing this ughhhh
 
That sucks :(

Is it something that might be a regular occurrence now?

That's the direction the doctors are going. I have to carry emergency medicine with me everywhere and give it to her teachers and anyone that is watching her, ever. We see a neurologist this week but I dunno if that's gonna help anything. Maybe get some medicine to stop them completely which we haven't been given yet. Just sucks. She's a very athletic kid she's not going to be able to do some things if I don't get this under control soon.
 
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?
 
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?

I panicked still haha but not as bad as the first time. I told the 911 dude that I was panicking so he helped me focus a bit. Appears I'm going to have to learn how to be calm by experience. :/ I kept saying hurry over and over again lolololo

They told me it probably wouldn't happen again but now that it has they've changed their tune completely. They did say sometimes kids grow out of it though. I hope she's one of those kids or mamma is gonna lose all her hair. And her heart. Lol
 
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)
 
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Really sorry to hear that. Nothing anyone can say to make it lessen. It can get better.
 
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.
 
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.

That's gotta be such a helpless sensation :( hopefully they can treat it quickly. How is she taking afterwards?
 
She doesn't remember them at all. She has what starts as complex partial seizures which then generalizes to the whole brain. They start in her temporal lobe. It's interesting to read about. I guess they start with an aura but I don't know what hers is she hasn't communicated anything to me. I know that she knew the last one was coming you could tell she tried to get out of bed to come get me before it generalized into the tonic clonic kind. She was hanging off the foot of the bed when I found her.
 
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
 
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
 
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.

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.
 
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

interesting.

any bit will help me, maybe not now but maybe in the future,

thanks xx
 
Can't even imagine how scary that must be for a mother to keep going through. Hope things improve soon, cindy!
 
I can't get her EEG results I've called so many times and people say they'll call me back but they never do. The wait times are unacceptable to be seen by a specialist and I still haven't had anyone really communicate what exactly she has or what it means. I am so frustrated with this whole process.
 
I was told after I balked at the wait time to be seen by a specialist to call every day and check for cancellations. I can't even get that far I keep getting answering machines where I leave a message and no one calls me back.
 
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.
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.
 
why are you always tryin to bang mitchs girl way to be a good bro u scumbag fuk eat a grenade

Yea I was really pouring it on strong you midget dick turkey neck piece of monkey shit. How you doing mitch? :)
 
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.

Her regular pediatrician hasn't been involved because I've only worked with the children's hospital and their referrals. This started in the ER and I have just gone from there.

There aren't any pediatric neurologists outside children's mercy network at least that's what I've been told so far. I'd have to leave the metro area, possibly the state. I don't know where to start or how I'd even go about doing that and I don't know if I'd have to start over or what. Yes, I'm kinda in limbo. Although, after four hours on the phone today I did finally get EEG back today and as a result they have changed her meds. she has started to have seizure activity at night too now, basically all night. The myclonic kind. I'm worried because that's new. I'm hoping the new meds she started today stop that. The neurologist part has been a nightmare. I'm hoping the epilepsy specialist will be better, but initially she coudlnt' see him until mid november! That is with three ER visits in a month and new seizure activity at night, with multiple witnesses, one was a nurse, and MRI to back it all up. I begged and pleaded and lied to get that down to two weeks. Today the EEG saved me because it wasn't what they were expecting and I might get to shave some time off that without having to beg. Thank god. Today was productive, took hours but I think I got somewhere.

I have a PPO, so I don't really have to stay within any network. I've already met my deductible. I just don't know where to go or how to switch docs. I've never really done anything like this before. :/

Having said that, the support group is a great idea, they would know exactly what to do. That is an excellent idea, thank you
 
Well, first of all I honestly think her pediatrician should be up to speed with what's going on. They have more connections than anybody. If I had a patient who had increasing seizures I sure would want to know.
Now you said epilepsy specialist ... pediatric epilepsy specialist? The thing is, some medical people have a tendency to consider most parents (in particular) to be just a teensy bit, uh, drama queenish. You should have a good enough rapport with your pediatricians office that they're going to know if you're over reacting. And if one doctor says to another doctor "I've got a decompensating kid here" they other goes "send them right over". Seriously. You can't get an appointment for two weeks. Your pediatrician could probably get her in today or tomorrow.

Believe me, I get where you're coming from in terms of trying to find that elusive "perfect doctor" (and remember, I'm right outside of Philadelphia, medical college central). I still went through the same thing trying to find help for my stepdaughter (late diagnosis autism spectrum). You literally have to sit down in front of a computer with a notepad and phone and just start Googling. I would end up calling so many neurologists/psychiatrists/neuropsychologists, special needs schools and government agencies that I had to keep track of their names so I didn't duplicate myself.

Going through hospital directories in the department you're looking for is a way to find doctors who work strictly in a hospital setting. You find a name, then you google the name and you can look up their credentials on Healthgrades or some other doctor review site. I've even called the department and spoken to people who work there to ask for referrals of private practice physicians.

Contacting your PPO customer service of your insurance company is a way to start if you haven't already. Googling "best pediatric neurologist in your city", is another. And, yeah, sometimes getting in with a good doctor can mean traveling a couple hundred miles. Your (very young) child has a rapidly deteriorating epileptic condition and brain scarring. Somebody should be all over this and honestly, I kind of am wondering if she shouldn't be in the hospital until she's been stabilized.

In terms of how to change doctors, you just find one who can see you, make the appointment and go. Before you go you contact every place she's had studies done and you get copies of everything in your hands (you should be doing that right now). Going forward you always get a copy of any studies she has done as well as the reports (imaging studies are always on CD, and you should get that AND then swing by the place for a copy of the written report, it's usually available a week or so after the study. You always tell places in advance you'll want a copy of the study and a copy of the report for your records). Keep a file of everything! Allow doctors to make copies but demand they return your copy. If you have a full set of your daughter's studies you can jump to a new practice in a moment's notice. You can always keep track of studies so they don't double up.

I'm probably repeating myself here: ALWAYS, ALWAYS, ALWAYS tell doctors/labs/imaging places you want copies of EVERYTHING sent to you directly, for EVERYTHING, office visits, consultations, you name it. They don't automatically send that shit to parents, you have to make a point to ask, then make a point to tell them to send it to you, sometimes pay for the copies, then keep an eye open to make sure they actually send it, then dog them if they haven't sent it. Trust me on this. Not acquiring records and information holds up care, potentially your daughter may need this information in the future, and you'll sure as hell need it if your daughter, gods forbid, needs to go on disability in the future.

And when it comes to the support groups, most only meet once a month or so, but often they have a contact person for the meeting in your area. Write that person an email timelining your daughter's situation, include your phone number and ask if there's anything else you could be doing or if they have any suggestions. Worst they can say is no.

And Cindy, you might want to get some bedrails for the kid, maybe something like a call button she can wake you at night. Or just get monitoring equipment, there's tons of stuff out there: https://www.google.com/webhp?rls=ig&gws_rd=ssl#q=pediatric+seizure+monitor

Having a record would help, again until they get a handle on things. The more information the better.
 
I don't have a lot to contribute except I'm a father of two boys age 6 and 4 and I understand how scared you must be. I don't think I have anything to constructive to add but I really feel for you and will pray for your daughters health and your sanity. This is so scary any one who isn't a parent just wouldn't understand. I'm so sorry cindy.
 
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.
 
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.
 
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.
 
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 :D

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
 
I need to read hear more stories like that! :D

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.
 
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!
 
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!
 
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!
 
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.
 
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.

I'll get some info for you tomorrow.
 
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.
 
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.
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've heard of some near miraculous things for some children with medical marijuana. It's great you live in CO, it means you've got more options. Insurance almost definitely won't pay for the medicine but it frequently will pay for all sorts of alternative treating physicians.
 
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.
 
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.

^^^
good bro
 
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