newbie here with questions and ramblings..

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My daughter had her first seizure at 7,it was the beginning of summer and we were having parties that weekend. She was drinking ssips ice tea juice boxes like they were water, not sleeping and being crabby, she had a seizure that noght. A battery of tests were done and the neurologist said it was an overdose of caffeine and lack of sleep. She has been caffeine free since then. She is now almost 11 and had a seizure at 4am halloween, took her to the neurologist who said it was still lack of sleep, i have been trying to get her to bed before or by 9pm the latest, i have also tried to keep her as xalm as possible before bed, she had a seizure at 2am this past thursday. She gets very "pissy" the night before, its kind of hard to keep a almost 11 year old girl calm. Especially when you also have an 18 year old daughter and a 2 year old son. The neurologist put her on keppra, 500 mls at night for a week and then 500 mils twice a day for the following week and then 750 mls twice a day after that. We havent started it yet because frankly i am scared shitless as to putting my baby on meds i know nothing about, i have been giving her melatonin e ery night which ofcourse just knocks her out, she still twitches pretty hard in her sleep, she also thrashes around vetu badly while sleeping. How do i know? She sleeps with me, she refuses to go to sleep at night unless my husband or I is laying down with her.. I know we are nuts but after 2 seizures in a month, I feel better with the sleeping situation.. i am lost as to what to do? If she gets in trouble, thats when she has a seizure. So how am i supposed to discipline and then worry if she is going to seize? She is in 5th grade and the common core crap is driving her insane, pmus hormones and she is very sensitive... help please!!

Comments

Mothers are great and I do

Submitted by Anonymous on Sun, 2014-12-07 - 12:33

Mothers are great and I do love them. If the doctor prescribes medications like Keppra he knows what the medication can do and he has or had a patient taking the medication that is about your daughters age. Now you want to keep her safe whiich I do understand. I also know that the longer she goes without the medication the stronger the seizures will get.There are seizures which many people do not know about because the person in them does not lose conciousness and they look like they are in a day dream. Been tehre done that. I havd been written up for day dreaming in class when in reality those day dreams were absecne seizures or focal seizures.If she twitches hard in her sleep and thrashes like you posted those too can be seizures. Nocturnal seizures generally show up in a person sleep.I had my first known seizure when I changed fron kid to a teen. Hormones change and the body changes so that can also be why her seizures are showing up. Before the changes her seizure threshold was high enough to keep her from having one. I would suggest yo ustart the medications as prescribed by her neurologist. It does take time for the medication levels to build in a persons body. Seizure medications are not like asperin.As for the keppra she was prescribed you may have read posts about it which is why you want to delay her taking it. I have been in drug studies and I do know that medications have side efects. However i also know that those side effects only happen to 5-8% of the people taking it. So all teh posts you read are generally comming from 5-8% of the people taking it. Why would a person taking the medication and it is working for it come to a forum if their seizures are being controlled by that medication. Keppra is the best medication I have used in the 50+ years I have been living and dealing with epilepsy. It not only reduced the number of my seizures but it also reduced the time in those seizures and the time it takes to get back to normal. The partial seizures or focal seizures I have now are seconds in length. The time to get back to normal are also seconds. I could have a seizure while standing in front of you and if you didn't know what to look for you would know nothing about that seizure. I would also suggest you get the My Epilepsy Diary which can be found in hte get help section at the bottom of this page. Watch teh video there is a note pad in it so you can put in information about the length of time in said seizure or if she took her meds on time anything that isdifferent from her normal activities should be noted. If you give her neurologist permission to bring it up he can look at the graphs and othe information which could help him come up with other medications, dosages and procedures that might help gey her seizure free I do hope this helps and she gets the help she needsJoe The reason I opened this post about mothers is because if it weren't for my mothers prayers I wouldn't be here today. I went into status epilepticus having 40 seizures an hour which lasted for 8-10 hours and once I came out before mom got there I went back into it again. Back in 1970 if a person went into status and came out they would be fine. If they went into status again very few survived. The doctors had done everything they could and the head of the hospital said "Split a hair a thousand times and that how close to seeing Gods Eyes I was they had done everythig they could." followed by "Your Mother didn't give up she was praying and her prayers were answered" All I know is I cane to 3 days later. So I do love mothers who want their childern to get what is best for them.

Mothers are great and I do love them. If the doctor prescribes medications like Keppra he knows what the medication can do and he has or had a patient taking the medication that is about your daughters age. Now you want to keep her safe whiich I do understand. I also know that the longer she goes without the medication the stronger the seizures will get.There are seizures which many people do not know about because the person in them does not lose conciousness and they look like they are in a day dream. Been tehre done that. I havd been written up for day dreaming in class when in reality those day dreams were absecne seizures or focal seizures.If she twitches hard in her sleep and thrashes like you posted those too can be seizures. Nocturnal seizures generally show up in a person sleep.I had my first known seizure when I changed fron  kid to a teen. Hormones change and the body changes so that can also be why her seizures are showing up. Before the changes her seizure threshold was high enough to keep her from having one. I would suggest yo ustart the medications as prescribed by her neurologist. It does take time for the medication levels to build in a persons body. Seizure medications are not like asperin.As for the keppra she was prescribed you may have read posts about it which is why you want to delay her taking it. I have been in drug studies and I do know that medications have side efects. However i also know that those side effects only happen to 5-8% of the people taking it. So all teh posts you read are generally comming from 5-8% of the people taking it. Why would a person taking the medication and it is working for it come to a forum if their seizures are being controlled by that medication. Keppra is the best medication I have used in the 50+ years I have been living and dealing with epilepsy. It not only reduced the number of my seizures but it also reduced the time in those seizures and the time it takes to get back to normal. The partial seizures or focal seizures I have now are seconds in length. The time to get back to normal are also seconds. I could have a seizure while standing in front of you and if you didn't know what to look for you would know nothing about that seizure. I would also suggest you get the My Epilepsy Diary which can be found in hte get help section at the bottom of this page. Watch teh video there is a note pad in it so you can put in information about the length of time in said seizure or if she took her meds on time anything that isdifferent from her normal activities should be noted. If you give her neurologist permission to bring it up he can look at the graphs and othe information which could help him come up with other medications, dosages and procedures that might help gey her seizure free I do hope this helps and she gets the help she needsJoe The reason I opened this post about mothers is because if it weren't for my mothers prayers I wouldn't be here today. I went into status epilepticus having 40 seizures an hour which lasted for 8-10 hours and once I came out before mom got there I went back into it again. Back in 1970 if a person went into status and came out they would be fine. If they went into status again very few survived. The doctors had done everything they could and the head of the hospital said "Split a hair a thousand times and that how close to seeing Gods Eyes I was they had done everythig they could." followed by "Your Mother didn't give up she was praying and her prayers were answered" All I know is I cane to 3 days later. So I do love mothers who want their childern to get what is best for them.

Mothers are great and I do love them. If the doctor prescribes medications like Keppra he knows what the medication can do and he has or had a patient taking the medication that is about your daughters age. Now you want to keep her safe whiich I do understand. I also know that the longer she goes without the medication the stronger the seizures will get.There are seizures which many people do not know about because the person in them does not lose conciousness and they look like they are in a day dream. Been tehre done that. I havd been written up for day dreaming in class when in reality those day dreams were absecne seizures or focal seizures.If she twitches hard in her sleep and thrashes like you posted those too can be seizures. Nocturnal seizures generally show up in a person sleep.I had my first known seizure when I changed fron kid to a teen. Hormones change and the body changes so that can also be why her seizures are showing up. Before the changes her seizure threshold was high enough to keep her from having one. I would suggest yo ustart the medications as prescribed by her neurologist. It does take time for the medication levels to build in a persons body. Seizure medications are not like asperin.As for the keppra she was prescribed you may have read posts about it which is why you want to delay her taking it. I have been in drug studies and I do know that medications have side efects. However i also know that those side effects only happen to 5-8% of the people taking it. So all teh posts you read are generally comming from 5-8% of the people taking it. Why would a person taking the medication and it is working for it come to a forum if their seizures are being controlled by that medication. Keppra is the best medication I have used in the 50+ years I have been living and dealing with epilepsy. It not only reduced the number of my seizures but it also reduced the time in those seizures and the time it takes to get back to normal. The partial seizures or focal seizures I have now are seconds in length. The time to get back to normal are also seconds. I could have a seizure while standing in front of you and if you didn't know what to look for you would know nothing about that seizure. I would also suggest you get the My Epilepsy Diary which can be found in hte get help section at the bottom of this page. Watch teh video there is a note pad in it so you can put in information about the length of time in said seizure or if she took her meds on time anything that isdifferent from her normal activities should be noted. If you give her neurologist permission to bring it up he can look at the graphs and othe information which could help him come up with other medications, dosages and procedures that might help gey her seizure free I do hope this helps and she gets the help she needsJoe The reason I opened this post about mothers is because if it weren't for my mothers prayers I wouldn't be here today. I went into status epilepticus having 40 seizures an hour which lasted for 8-10 hours and once I came out before mom got there I went back into it again. Back in 1970 if a person went into status and came out they would be fine. If they went into status again very few survived. The doctors had done everything they could and the head of the hospital said "Split a hair a thousand times and that how close to seeing Gods Eyes I was they had done everythig they could." followed by "Your Mother didn't give up she was praying and her prayers were answered" All I know is I cane to 3 days later. So I do love mothers who want their childern to get what is best for them.

Medications work. Do not

Submitted by mammak on Sun, 2014-12-07 - 15:21

Medications work. Do not delay them. Definitely get an EEG. I am glad you ceased the caffeine. I will not allow my daughter (9) to have caffeine because it can really mess with the brain. I was apprehensive, too, about starting meds, but I was told just a few days ago that without them, my daughter would have had more seizures than the two she's had in almost 14 months.

Good advice Kendra.... I

Submitted by just_joe on Mon, 2014-12-08 - 14:56

Good advice Kendra.... I answered your post before comming to this one It is advisable to not give caffeen but when I was diagnosed they didn't have forums. They didn't have computers. We hadn't even gotten to the moon. I have drank coffee for over 40 years. I used to drink a pot by noon. After noon I drank sugared TEA (also has caffeen) But then when I started doing that I was taking 3 medications one was phenobarbatol. In 1971 when I moved to Dallas I had to find a new neurologist.We talked and he asked me what I took. I handed him the list. His next question was "How do you wake up in the morenig' I looked at him and asked why? His next statement was "The ammount of phenobarbatol you take will put the averags man to sleep for 24 hours" So the coffee and tea helped me stay awake.