First Experience with Seizures

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DadofTwins

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I am the father of twin 16 year old girls. I also have a 20 year old son. On May 1, I received a call from school that my Daughter had a seizure. I was told that my wife and her sister were there, but neither spoke to me. I was petrified. I left work and sped to the hospital. Blood and urine clean. Cat scan clean. She was released from the hospital that night. It happened again on her first day back to school, May 7, but this time, my wife called. She was very upset. Again to the hospital. This time, she was admitted and had a 60 hour EEG with two nights of sleep deprivation. No seizure, EEG perfect. She has had a continuous headache since the first seizure. No doctor seems to be concerned, but she is suffering. MRI scheduled for May 28.

She is a multi-sport athlete (soccer keeper, basketball, softball, swimming, diving, cheerleading). She has pared her athletics back to soccer and basketball, although not last basketball season due to an injury and the rigors of her school work. She is an avid volunteer, Habitat, Share our Strength and a number of local causes. She has stopped playing soccer on April 14, due to a knee injury. She has been in season for soccer, spring and fall, since age 5. This is the first time that she has been unable to participate in spring soccer.

I am very concerned about the headache. She is also complaining about reading books, saying that the lines of text merge, but she seems OK on the computer screen.

Any words from experienced parents or patients would be appreciated.

Thanks,
Tom

:e:
 
Hi Tom, Just to add my support. I'm an experienced mum but new to this epilepsy lark too, so I can totally relate to your anxiety.

My daughter is an undergrad student and recently had her first adult seizure, scared the daylights out of me when I heard. She's waiting now for further investigations, and it's a very worrying time, MRI is just after yours. I joined here to learn more and find and give support.

Hoping you daughter can have her headache sorted and they get to the bottom of what's causing her seizures.
 
Thanks Bathtub.
I hope that you and your daughter can also find something to ease the stress.
 
Welcome to CWE. I am also a parent of a teen and we are working our way thru the diagnosis of Juvenile Myoclonic Epilepsy. I hope you are able to get some answers soon. Until then, I am sure you will find CWE to be filled with caring, helpful and friendly members. Again, welcome!
 
Hi Tom, welcome to CWE!

Don't be afraid to push your daughter's doctors for some answers about her headache and vision problems. Does her headache respond to any pain relievers? Does it respond to cold (like an icepack on the back of the neck or top of the head)? Does it get any better or worse when she lies down, or when she closes her eyes? Did she have any aches or pains as a result of her seizures? Did they do a spinal tap after either one? Have her doctors checked her vision? Has she had any major or minor head injuries due to her sports activities? Does she head the ball a lot in soccer?

I hope this turns out to be a one-time thing, but the second seizure suggests that for the time being it's a good idea to play it safe until you have a better sense of what's going on. If the MRI doesn't indicate anything, it may be worth trying another EEG. If the tests come up negative, then the choice becomes whether to treat for seizures or to wait and see, something you should discuss in detail with her neurologist.

Best,
Nakamova
 
Just to give you some help, I hope!

Had seizures in various parts of my life. I am now turning 35 and I only get one it seams around the same time which is May/June. Got my first when I was 11 then went on and off until I guess is what they are calling the rights Meds. Then I got one my freshman year I got one in English and when I woke up in the ambulance since they happened to be parked outside. As I got older after trying tegretol, Dilantin, Depakote and some other when I can remember until I got my first one in over 10years when I was 26 and was so worried and stressed that weekend in taking off from work, family issues, and making my engagement to my now wife went well. After all plans set and picked up to call my girlfriend BAM had one when I was on the with her. Thank god there has always been someone around. Then I got another 3 since then. At the age of 31,32 (1per year in May/June) and yesterday I got 2 in one day which I am now turning 35. During all three of those times I was severely stressed with many issues.I have been on Lamictil/Lamotrogine 175mg. 2x's daily and seen by one of the leading doctors in epilepsy for children adults at Beth Israel in New York, NY. He did every test on my EEG,MRI CT and Sleep Study. He said ?Hmmm Generalized Seizure is all he could say to my wife and I and did not know where they were coming from but I never expressed to him the stress/anxiety/pressure and weight I carry on my shoulder's ever since my Father passed when I was 21. So everything has ganged up and hit me in the ass. He has agreed but I am going to see another doctor not because Dr. Cohen isn't great just so happen that he doesn't take my insurance and cant afford to pay $500 a visit for him at this point to re-fill my prescriptions. So for parents with questions about there kids and there seizures or for themselves I will give you my life experience to the best way possible. Through story private e-mail. I know how scary it is to see a seizure I have seen one and acted upon it and I have them. But the difference is when you have it all I can say is that you dont know where you are and when you open your eyes you panic and your words collecting into sentences in your brain come out like you have binge drinking, have a massive headache/migraine, you cant breather, your eyes hurt, your muscles hurt and embarrassed and scared. I notice when there has been a familiar face when I do open my eyes I am not that scarred but if there are other people even paramedics I feel like I got attacked and try to defend myself. But I am also a lot bigger now then when I was a kid. PLEASE AFTER YOU KNOW SOMEONE HAS HAD A SEIZURE AND THEIR FOR THE ACTUAL SEIZURE MAKE SURE YOU TAKE CARE OF HIS/HER HEAD AND IF YOU CAN DO RESTRAIN BUT CUSHION. THEN WHEN THEY COME TO COMFORT THEM AND JUST IN A CALM VOICE TELL THEM WHATS GOING ON UNLESS THEY ARE TOO YOUNG THEN JUST TELL THEM EVERYTHING IS ALRIGHT. MAKE SURE THE PEOPLE AROUND YOU EITHER LEAVE THE AREA UNLESS MEDICAL PERSONNEL CAUSE THAT WILL SCARE YOU MORE WHEN THERE IS A CROWD. THATS MY STORY STILL ON LAMICTIL AND YOU ARE ALLOWED TO DRIVE IF THE DOCTOR DOES NOT FIND IT MEDICALLY NEEDED AND DIAGNOSED. YOUR NEW FRIEND AND WILLING TO HELP.

NICK
 
Thanks for sharing that Nick. Stress does seem to make us more vulnerable to illness and it sounds like you've had a lot to deal with :( I'm encouraged that you went so long with no seizures once they got the meds sorted.
 
Nakamova said:
Hi Tom, welcome to CWE!

Don't be afraid to push your daughter's doctors for some answers about her headache and vision problems. Does her headache respond to any pain relievers? Does it respond to cold (like an icepack on the back of the neck or top of the head)? Does it get any better or worse when she lies down, or when she closes her eyes? Did she have any aches or pains as a result of her seizures? Did they do a spinal tap after either one? Have her doctors checked her vision? Has she had any major or minor head injuries due to her sports activities? Does she head the ball a lot in soccer?

I hope this turns out to be a one-time thing, but the second seizure suggests that for the time being it's a good idea to play it safe until you have a better sense of what's going on. If the MRI doesn't indicate anything, it may be worth trying another EEG. If the tests come up negative, then the choice becomes whether to treat for seizures or to wait and see, something you should discuss in detail with her neurologist.

Best,
Nakamova
Click to expand...

Nakamova,

Thank you for the input. She had a third seizure, the first was May 1,last night at 2:00AM. Least intense of the three. Ten to twelve seconds. She woke up in less than five minutes. The problem is that she forgot the whole day. Saw doctor this AM. Headache continues. Dr described it as muscular skeletal and recommended Vitamin B2 and Mg and heat on base of skull for the headache. MRI tomorrow. It has been a rough week. 60+ hours in one EEG Monday night to Thursday and a second EEG on Friday night to Saturday for 12 hours. MRI tomorrow with and w/o contrast. Prescribed Keppra 250 x2 daily for the first week and double the second week followed by a blood test to measure levels. We'll start that after the MRI.

Advil, Tylenol and Motrin didn't help the headache. Stopped after 2+ days to avoid a rebound headache.

Doctor recommended EEG a month or so after getting a maintenance level with Keppra.

I'm trying to learn as much as I can as quickly as I can.
Thanks for your help.

Tom
 
Respone to Bathtub

I was still on medication when seizures occurred bet it does a occur and can be an onset from stress, sleep deprivation, anxiety and depression so I have learned this from going to many Neurologists and exams. When they cant pin point the type then its considered into a broad category and the things listed are triggers. But hey I have had and researched them for over 20 years and seen a lot of doctor's and exams. Then if you go see a shrink they want to give you Xanax that shouldn't be taken with seizure meds for the drug interaction. I dont know your experience but this is what I live through and learned!
Please mean no harshness!

Nick
 
Thanks

nikokos said:
Had seizures in various parts of my life. I am now turning 35 and I only get one it seams around the same time which is May/June. Got my first when I was 11 then went on and off until I guess is what they are calling the rights Meds. Then I got one my freshman year I got one in English and when I woke up in the ambulance since they happened to be parked outside. As I got older after trying tegretol, Dilantin, Depakote and some other when I can remember until I got my first one in over 10years when I was 26 and was so worried and stressed that weekend in taking off from work, family issues, and making my engagement to my now wife went well. After all plans set and picked up to call my girlfriend BAM had one when I was on the with her. Thank god there has always been someone around. Then I got another 3 since then. At the age of 31,32 (1per year in May/June) and yesterday I got 2 in one day which I am now turning 35. During all three of those times I was severely stressed with many issues.I have been on Lamictil/Lamotrogine 175mg. 2x's daily and seen by one of the leading doctors in epilepsy for children adults at Beth Israel in New York, NY. He did every test on my EEG,MRI CT and Sleep Study. He said ?Hmmm Generalized Seizure is all he could say to my wife and I and did not know where they were coming from but I never expressed to him the stress/anxiety/pressure and weight I carry on my shoulder's ever since my Father passed when I was 21. So everything has ganged up and hit me in the ass. He has agreed but I am going to see another doctor not because Dr. Cohen isn't great just so happen that he doesn't take my insurance and cant afford to pay $500 a visit for him at this point to re-fill my prescriptions. So for parents with questions about there kids and there seizures or for themselves I will give you my life experience to the best way possible. Through story private e-mail. I know how scary it is to see a seizure I have seen one and acted upon it and I have them. But the difference is when you have it all I can say is that you dont know where you are and when you open your eyes you panic and your words collecting into sentences in your brain come out like you have binge drinking, have a massive headache/migraine, you cant breather, your eyes hurt, your muscles hurt and embarrassed and scared. I notice when there has been a familiar face when I do open my eyes I am not that scarred but if there are other people even paramedics I feel like I got attacked and try to defend myself. But I am also a lot bigger now then when I was a kid. PLEASE AFTER YOU KNOW SOMEONE HAS HAD A SEIZURE AND THEIR FOR THE ACTUAL SEIZURE MAKE SURE YOU TAKE CARE OF HIS/HER HEAD AND IF YOU CAN DO RESTRAIN BUT CUSHION. THEN WHEN THEY COME TO COMFORT THEM AND JUST IN A CALM VOICE TELL THEM WHATS GOING ON UNLESS THEY ARE TOO YOUNG THEN JUST TELL THEM EVERYTHING IS ALRIGHT. MAKE SURE THE PEOPLE AROUND YOU EITHER LEAVE THE AREA UNLESS MEDICAL PERSONNEL CAUSE THAT WILL SCARE YOU MORE WHEN THERE IS A CROWD. THATS MY STORY STILL ON LAMICTIL AND YOU ARE ALLOWED TO DRIVE IF THE DOCTOR DOES NOT FIND IT MEDICALLY NEEDED AND DIAGNOSED. YOUR NEW FRIEND AND WILLING TO HELP.

NICK
Click to expand...

Nick,

Thanks for your help and information. She had a third seizure, the first was May 1,last night at 2:00AM. Least intense of the three. Ten to twelve seconds. She woke up in less than five minutes. The problem is that she forgot the whole day. I was calm. Saw Doctor and prescribed Keppra. Will start tomorrow after MRI. I appreciate your insight and the info on stress triggers. As a sixteen year old athlete in a highly competitive school, I know there is stress. She is taking pre-calc and AP Physics as a soph. Maybe we can adjust her schedule next year.

Thanks again,

Tom
 
Thanks for the trigger info.
She has many stresses.
Starting Keppra tomorrow after her MRI.

Thanks again,

Tom
 
DadofTwins said:
Nick,

As a sixteen year old athlete in a highly competitive school, I know there is stress. She is taking pre-calc and AP Physics as a soph. Maybe we can adjust her schedule next year.
Click to expand...

Do not discount trying to get something adjusted for THIS year. My daughter was diagnosed in mid-February and her teachers all aware of what is going on. Although her "health plan" does not allow for accommodations, her teachers are working with her for the remainder of the year. We are meeting June 1 to start the 504 process. School ends June 8. I am hopeful that we will have things in place over the summer so she can start next year with the 504 in place. Are you familiar with 504 plans? It may be something to look in to, especially if she is at a high stress school. I am a teacher in the District my daughter attends and am working with her school to complete this process.
 
DadofTwins said:
I am the father of twin 16 year old girls. I also have a 20 year old son. On May 1, I received a call from school that my Daughter had a seizure. I was told that my wife and her sister were there, but neither spoke to me. I was petrified. I left work and sped to the hospital. Blood and urine clean. Cat scan clean. She was released from the hospital that night. It happened again on her first day back to school, May 7, but this time, my wife called. She was very upset. Again to the hospital. This time, she was admitted and had a 60 hour EEG with two nights of sleep deprivation. No seizure, EEG perfect. She has had a continuous headache since the first seizure. No doctor seems to be concerned, but she is suffering. MRI scheduled for May 28.

She is a multi-sport athlete (soccer keeper, basketball, softball, swimming, diving, cheerleading). She has pared her athletics back to soccer and basketball, although not last basketball season due to an injury and the rigors of her school work. She is an avid volunteer, Habitat, Share our Strength and a number of local causes. She has stopped playing soccer on April 14, due to a knee injury. She has been in season for soccer, spring and fall, since age 5. This is the first time that she has been unable to participate in spring soccer.

I am very concerned about the headache. She is also complaining about reading books, saying that the lines of text merge, but she seems OK on the computer screen.

Any words from experienced parents or patients would be appreciated.

Thanks,
Tom

:e:
Click to expand...
Tom, have they checked her for TMJ? That can cause nasty headaches.
 
Thanks Chop.

Is a 504 like an individual education plan (IEP)? If so, that process starts soon.

Tom
 
No problem. Ask the neurologist if his/her opinion of an anti-seizure med called Lamictil that is shown not to have a long lasting issue against the liver like most meds do.
 
I was a very very young kid and don't remember a lot but I have had it bad a long long time. At 5 yrs. old we invented the A.E.E.G.
 
Dad,
Is this the week of her period? or the week leading up to or before her period? Hormones play a huge role regarding seizures in women. It is possible her seizures are catamenial in nature (linked to her cycle)

Also, if she did not have a seizure during the EEG, the EEG will 90& of the time not show any irregularities. Plus sometimes it takes up to 48 hours prior to the physical seizure for that seizure to start. So if the EEG provoked the seizures it could be a while before she actually has the seizure.

Also get her to wear a pair of polarized brown sunglasses in the class room (call the school ahead of time to let them know she will be doing this) Fluorescent lights can trigger seizures as well. I know with me, reading under fluorscent lights makes it look like the words flicker. Wearing polarized lenses helps with this. You can pick them up at any sunglass hut or walmart around you for about $10-$30
 
Dad: Here is a quick breakdown/differences between a 504 and an IEP (taken from a University Website):

The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.

The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

Subtle but Important Differences
Not all students who have disabilities require specialized instruction. For students with disabilities who do require specialized instruction, the Individuals with Disabilities Education Act (IDEA) controls the procedural requirements, and an IEP is developed. The IDEA process is more involved than that of Section 504 of the Rehabilitation Act and requires documentation of measurable growth. For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document is created to outline their specific accessibility requirements. Students with 504 Plans do not require specialized instruction, but, like the IEP, a 504 Plan should be updated annually to ensure that the student is receiving the most effective accommodations for his/her specific circumstances.
 
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