First time experience with seizures

Tina - posted on 03/15/2013

Hi Kim .... I know your post is from 2010 but after reading it sounds so much like my son's experience...and I can really relate to that "irrational" thinking because I am feeling the same way. My son was 13 when he had his first seizure and has had 3 episodes in the past 4 months. We did the sleep deprived EEG showed abnormal on right side, MRI was normal and 24 hour video EEG still waiting for the results of this test. Did you ever find out what was causing your son's seizures. Just looking for others that have been through this and I hope you son is doing well. Such a scary thing. The only feeling is just awful.

Sandy - posted on 09/14/2012

Ann ... my son (13) has been on Concerta 54 mg. every morning for maybe 4 years and it never affected his seizures or seizure free times.



You son must of hit his head at camp but not hard enough to show up on CT scan or MRI. It's difficult cause seizures can just pop up for no reason at all. I've been dealing with my son for 13 years now, along with 6 brain surgeries and the left brain being removed, and he had a stroke in his right frontal lobe, leaving him with 40% of his brain. He is doing well and is in 7th grade. You just have to take each day as a new day.



If you read my other posts, you can see that I give my son Lecithin (1200 mg.) for over 3 years and it has helped him tremendously to control and even stop his seizure for 7 3/4 months. Puberty messed him up but it's finally calmed down to one seizure every month or two. Great for a kid who was having them daily, arms and legs flailing.

Good luck,

Sandy Lora

Ann - posted on 09/14/2012

Experiencing the same thing here and could really use some advise from the nice people who have lived through this. 13 year old son had a seizure last month at an overnight church youth activity. Nothing scares a parent more than a call at 4 am, telling them to get to the hospital! They rushed him to the hospital. He had a CT scan, normal. He's had a sleep-deprived EEG...abnormal. He's had an MRI. Normal. Now we get to see a pediatric neurologist.



Upon tests in the emergency room, his electrolytes were out of balance (can cause seizures).

Sleep deprivation (can cause seizures).

Was watching Star Wars (flashing lights, etc.) (Can cause seizures.)

Puberty onset (Can cause seizures.)

On Concerta (one of the possible side effects is seizures)...we have since removed him from the medication...we figure hyperactivity is better than trips to the hospital.



Any advise? What questions should I be asking?

Sue - posted on 01/28/2010

Hi Kim, It is a shock to see you child having a seizure, I have twin boys who started with nocturnal seizures aged 9years old, I shock when Chris had his seizures then an even bigger shock when his twin started with identical seizures, it does get easier to cope with, they are 24yrs now and have independent lives, one of them is now a daddy, so please stay positive and be patient with medication trials. XSue UK

Angela - posted on 01/27/2010

Hi Kim,

My daughter is 12. she always had absence seizures but 3 months ago she had her first grand mal. I know what you mean about the fear that goes through you. I had been raised to handle seizures because my sister was brain damanged at birth and she would have them, luckily i knew to keep her from hurting herself but from there I was lost. If you're like me, you're checking on him every few minuets and worried about things like letting him stand at the bus stop alone, but not to worry, this feeling shall pass. I will keep your son in my prayers and you as well. it may take some time for him to tolerate the meds so don't be discouraged. Like I said we started this 3 months ago and she is finally feeling more normal again from meds. (PS the kids always handle it better)

God Bless,

Angela Bailiff

Chantay - posted on 01/26/2010

Our first experience & diagnoses with my daughter was when she was 11. She will be 15 this April. I was driving home from christmas shopping on Black Friday and she was talking to me and then nothing. She went into a gran mal seizure in the passenger seat. It was such a helpless feeling and tough to watch. The Dr. said at that time they were seeing alot of seizures coming on in children coming into puberty. We did the EEG as well and she was diagnosed with myclonic seizures. Her seizures are caused by strobing flashing lights, the sun flashing through the trees on a bright day is what brought her's on. I was afraid at first also to let her do things, I watched her bath, called school to check on her etc... it does get easier. And as you said, they do handle it better than we do. She is such a joy. She would talk to her friends and they were protective of her too and that did help me also. It is frightening I know but if it's going to happen there's not much we can do. I did talk to the teachers so we were all on the same page and so they weren't caught off guard if it happened at school. I told them I didn't want special treatment but that if she's spacing that it may be a seizure and not just her not payig attention so be considerate of the situation.. My heart does go out to you but keep your head up. My daughter takes Zonegran (Name brand only - we didn't have much luck with generic.) There have been no side effects except in the beginning she didn't have much of an appetite but she had been seizure free for a little over two years and we go for another EEG in April. Good luck to you and God Bless!!

Kaye - posted on 01/26/2010

Well having experienced my sons first epileptic at his age 13 it was VEERY frightening I do feel for you it is the most terrifying and stressful time that anyone could imagine. Mat will bounce back as all kids do the scars he will gert over the emotional scarring it leaves you will last longer. You are completely normal in wanting him with you all the time, but do not smother him he will accept what is ahead far better than you imagine. Hopefully you find the answers you want and that it is atreatble short term problem My son still has seizures that frighten me and he is 32 . Good luck and good health to Matt

Molly - posted on 01/22/2010

This is one of the hardest things to have to watch, especially if it's your child. My daughter is 16, and just underwent her 2nd craniotomy for a brain tumor. She suffers with many variations of seizures, from generalized to partial seizures. She is currently on two separate meds to help control them and since her surgery she hasn't had one! You have to be strong for them because nothing scares a child more then when they see fear in their parents eyes. It's scary enough for them (if they can remember) having to go through this that it really makes a huge difference how you react to it as well. I've been reading through all the comments and my heart goes out to all the parents who have to watch their child go through this. New discoveries are made everyday in medicine and my daughter is living proof that miracles can and do happen! God bless ♥

Tammy - posted on 01/22/2010

Kim: My son had his first seizure about 2 years ago. He woke me at about 5 a.m. with this strangled scream. When we ran into his room, I could hear his breathing, and it sounded like his was aspirating fluid. I knew before I turned the lights on that one of my kids was having a seizure. My mother is a nurse and spent my young life teaching me what to do in any situation so that if I was in a public place and someone was having a problem, I could help. The training proved invaluable. While my husband panicked, I could level-headedly get him into the recovery position, and then I pulled down his lower lip because he was trying to breathe through his mouth, but didn't seem to get enough air. He started to calm down right away. Jared is very sleepy and disoriented after his seizures, and usually sleeps about an hour afterwards. When he gets up, he acts like a normal kid, but complains of a headache. He was diagnosed with benign rolandic epilepsy. He has been placed on Carbatrol, and has done very well with it. They did have to increase his dosage a few months ago because he would sit straight up in bed at the same time every night (4 a.m.) in a panic, and he told the doctor it was like he was having a muscle spasm in his tongue. The increase in medication stopped it completely. The thing to remember is that he's not in pain while this is happening, but that his brain is shooting irrational signals to his muscles. Somehow, that seems to help me if I can hold onto that. We are lucky that his medication works so well for him and that we don't have to endure watching that happen to him very often. We have been able to keep ourselves from overprotecting, and he swims and plays both baseball and football. He's about to go away for his first overnight trip without parents, and I'm trusting him and his chaperones to make sure he gets his seizure medication. I hope that your EEG results come back as benign as ours did and that your son continues to be able to do all his favorite things. God bless.

Jennifer - posted on 01/22/2010

I have those headaches!! Has your son had any concussions or hit his head very hard?? I get my headaches in the same place where the concussions occured (yes, unfortunatly, more than one). UGH. Poor lil guy!!

And my 6 yr old started having seizures when he was four. So I know how frightening this all is.

All I can say is that it's normal to worry. But never let HIM see you worry. And say positive things as often as you can. Also, I make it a point (not that I have to remind myself or anything) to tell him how wonderful he is and how much I love him. And hearing him say similar things in response just warms my heart and makes me feel better too!!

Good luck!!!

Sandy - posted on 01/21/2010

Kim,
Joey was 9 months old when he had his first seizure .. for no reason that I know of. He is 11 years old now. Joey has epilepsy/seizure disorder and on adult doses of meds and STILL has seizures! They need to do a video EEG. This enables doctors to see the brain activity while also seeing the body movements. One thing you may want to try is cranial sacral therapy. I recommend this only because I had Vertigo (dizziness, falling over, massive headaches that were debilatating ~ I'm over stressed from dealing with Joey's seizures & headaches and I am sure has a lot to do with it) and it helped me get my life back. Joey will be starting it soon in an effort to decrease his seizures and intensity of them and also the headaches that leave him laying down and has a possibility of vomiting. Doctors tried to say migraines but NO, they aren't, I feel it is intercranial pressure. Did Matt hit his head in the past several weeks? Even a slight bump is enough to start seizures. Have they done spinal tap, CT scan or MRI yet? If not, I would insist on it being done. If they put him on seizure drugs ... beware ... they all have side affects that can be hard to deal with. Keppra and Zonagran can have violent/behavior issues. Joey is on Trileptal since 2 years old. As for you ... been there and am still there. You need to relax and take care of yourself some .. so you can be strong for Matt. Easier said than done for sure. I hope this helps you out.
Sandy Lora

Sharon - posted on 01/21/2010

i know exactly how you feel,my daughter who is now 12,had a seizure about two years ago,and i have never been so scarred of something in my life,she continued to have them maybe once every month, then they started more frequently,and we had to get her on medication to control them,touch wood since being on her medication she has not had a seizure.i use to worry that when no one was with her,i managed to learn to cope with it ,it does get easier if they are giving the right medication and thankfully we got the right one first time .sharon clark [edinburgh]

Amanda - posted on 01/21/2010

Kim, my son has a seizure disorder but his is due to a traumatic brain injury. Unfortunately the only way we found this out however was because we found an awesome neurologist who put him in the hospital for a 24/7 video EEG. He was in the hospital for 6 days -left on the 7th and was hooked up to the EEG the entire time he was there. This made it so they didn't miss anything should he have a seizure and no one be there to observe it and also since seizures are not predictable, they could catch one for sure. Well they did and now we know. Make sure you ask about the possibility of getting one and see if your insurance will cover it. Good luck, I know how you feel :)

Kimberly - posted on 01/20/2010

Hi Kim, so sorry to hear about your son. I do not have a child with epilpsy but I do have a husband with this. He last year almost died he was have anywhere from 5 to 40 seiures a day. He is unable to stay by himself for long periods of time and on bad days doesn't know how to do anything> But he is slowing recovering but the memory loss is very trying at times. As a wife it hurts so as a mother I could only imagine !! My hubby is on heavy meds and may get better some day. I have been fighting for help for 19 years all you can do is tell people like his teacher and make sure no one tries to stop a seisure or try to put things in his mouth.
I hope this helps and you will have good days and bad ones.With the right meds he can live a almost normal life.

Mary - posted on 01/19/2010

having your child have a seizure right in front of you and not being able to stop it makes you feel helpless, my 12 year old has had seizures since she was 10 months old. i don't let her out of my sight for long. your not irrational your protecting your child like mothers do !!! sounds like the headaches may be linked to the seizure, get every possible test done you can until you find out the cause even a second opinion if needed to make sure that he gets the best care possible!! hope that everything turns out alright

Kim - posted on 01/18/2010

Thanks so much for your advice, Katie! I am trying to stay calm and I am calling my pediatrician everytime I think of something. We are in Kentucky, so we don't get to your part of the country very often. I do have a good pediatric neurologist that I am acquainted with. She treats my youngest son for migraines. Take care, and thanks again!

Katie - posted on 01/18/2010

Take a deep breath and try to stay calm. I can remember the day my daughter had her first seizure. We where eating out...and I though she was choking. We had all the tests also..and they all came back negitive. We had to search and search and plead with the insurance compnay but finally we saw a doctor that was able to give us an answer. You have to trust your instincts.. your his Mom if something does not feel right to you... let your doctor know or ask for second options.

The best thing you can do for him while he is having a seizure is to remain calm... talk to him in a calm voice... I have done that with my daughter... I know that she will not know what is going on.... but rubbing her back, and talking calm to her seams to make her come out of it easier. When she saw me franctic after the first one I believe it just made it worse. Now staying calm, and collected her seeing it on my face has helped her remain calm after. Best of luck, we will keep you in our thoughts. If you should be in the Ca, Az, Nv area I know of some GREAT neurologist in the area.

Kim - posted on 01/18/2010

We don't know anything yet. I am hoping that we will learn more when we see the neurologist. Hope you and your son continue to do well.

Tammy - posted on 01/18/2010

I totally understant the panic. Our son Jay had 3 concussions and he started having seizures and passing out. We took him to the ER 3 times in one night just to be sent home after they ran drug test. They didnt look any further once they got the negative drug test, just sent him home. It took us months, 3 hospitals, 8 doctors and a parade of medications but he is finally doing great. We finally found a doctor who was willing to listen to Jay and get him on the right medications. It was extremely scary and heartbreaking to watch him have seizures and go through all that. You can do it. We didn't let Jay out of our sight for a long time because it was scarier to be called and needed to come to him then just being there. Do you know why he is having seizures?

Kim - posted on 01/18/2010

Just to let you all know, we got the results of Matt's EEG today. Fortuantely, or unfortunately, it came back as a normal EEG. He has an appointment of feb. 2nd with a neurologist, so we will wait until then to find out what our next step is. Again, thanks to all of you. Your support has been a blessing!

Aileen - posted on 01/18/2010

i feel for u as i can remember being in that situation myself x hope all goes well for you x

Kim - posted on 01/17/2010

Heather, I will pray for your son and family as well. We are just at the beginning of this journey, and I am praying that for us, it will be a short journey. I have been so touched by the people who have responded to me on this site. I really do not feel alone in dealing with this. I am hoping that the eeg will tell us something, however, my pediatrician has prepared me that it may show nothing. Years ago, I worked in an institution for the mentally handicapped. I dealt with children and adults with seizure activity. But that didn't prepare me to deal with it in one of my own children. Everyone who has responded to my post has given me good advice and hope and I want to thank all of you once again.

Heather - posted on 01/17/2010

Kim, my heart just almost breaks for you! Over 10 years ago my then 2 1/2 yr. old son was playing with his brother and grandpa and came around the corner in the kitchen, stopped in his tracks, his eyes rolled into the back of his head-fingers & toes curled-and he thrashed on the floor for only about a minute. We thought he might be over it, then about 30 seconds later he had another which lasted over 3 minutes. We called an ambulance, they did a CT and found nothing! In the past 10+ years we have seen almost every form of seizure from my son - the tonic/clonic (grand mal) are by far the worse to have to see and attend to! We have been thru a dozen or more medications for them, but he has continual but not quite constant petit mal firings all night long! He is not a candidate for surgery as he doesn't fire in the same place twice (there's no focal point). He is on a combination of 2 medications right now, Keppra & Lamictal. Ironically the seizures were just the starting point for a whole list of other issues that have developed over the years - ADHD, moderate retardation, auditory hallucinations, depression and a distorted perception of the real world. We have also dealt with increased liver enzymes to which we tried weaning him off of the Lamictal - his seizures were so severe they hit him hard and interfered with his breathing! I fully agree with looking for a trigger for the seizures; my son's are sleep deprivation, flashing lights & loud noise. For the first few years I was like Sarah - I couldn't leave him alone, slept in the same room & ended up with a monitor in his room. If you get anything out of this, please let it be that you are not alone. Educate yourself on seizure activity and I will pray with you that your son will outgrow this or they will spontaneously cease. Be strong.

Kim - posted on 01/17/2010

I just want to thank everyone who has responded to my post. Matt had another mild seizure just a little while ago. While it is still frightening, I feel better prepared to deal with it. I will keep everyone informed. All of you are in my prayers as well.

Bronwyn - posted on 01/17/2010

Your son, you and your family are in all our prayers. They usually need to have more then seizure to be diagnosed.

Bronwyn - posted on 01/17/2010

Just to let you know my partner has gran mal epilepsy(most serious) for 16 years. The seizures are the scariest thing for anyone even after dealing with it for 8 of those years. after a seizure he has a severe headache, which can last two days, and remembers nothing. He needs to sleep for afew hours after. We were dealing with them on fortnightly basis at one stage years ago but now he rarely has them. Due to great medications now available. He does need to take 2 types twice a day but at least he has quality of life. There is hope now for all epileptics. the assossiate in your state should have some good resources.Good place to start..Triggers are so important.some get a aura music or smell record all these things in a seizure diary for your Doctor.

Kim - posted on 01/17/2010

Belinda, that is wonderful advice! We are trying to keep him as calm as possible and are hopeful that this may have been a one time thing. I hope to have the results of his eeg on Monday, but I am very well aware that it may not show anything. My youngest son has been able to joke around with Matt about it a little bit, and I have seen that keeping your sense of humor seems to help, too.

Belinda - posted on 01/16/2010

Hi, sorry to hear that. My daughter had the same thing happen. At 8 years old she just all of a sudden started having seizures. It was the scarriest thing I had ever gone through. Like your son, she doesn't remember anything afterwards. When the seizure ends she cries and I have to calm her down but then I ask if she remembers anything, she doesn't. After her first, she had many tests and everything came back normal. The doctors have no reason for them to have started all of a sudden. She has never had a head injury or a high fever. She is on phenobarbital and that seems to help. I have noticed that she has some triggers. Lack of sleep and excitment (like her waiting for her birthday party and christmas to come) seem to set them off. My advice is to be calm. Being over excited won't help. If they continue, try looking for signals. Sometimes there are signs before it happens and you maybe able to help figure out what sets them off. We have been dealing with this for a year now, we can't stop them all together but we have been able to help them not happen as often.

Darlene - posted on 01/16/2010

Kim, I hope you post what the test results are when you get them . I'll continue to pray for you and your son . Good Luck !!

Kim - posted on 01/16/2010

Hey, Darlene! That is exactly what we are hoping for. He had his eeg yesterday and we are waiting on the results. So far, nothing else has happened, and we are praying for it to stay that way! Thanks so much for your encouragement!

Darlene - posted on 01/16/2010

Hi Kim , Try to Calm down some ....if it's at all possible ,Thats easier said than done i'm sure . We have learned to TRY not to panic untill you are sure theres a reason to . My nephew Matt (also ) was 14 yrs old (two yrs ago ) and had a seizure in the church parking lot after a camping trip. The ER let him go after 4 hours and he never had another one .That was two and a half years ago.
I'm praying you have the same Blessing we did . Good luck and may god bless you and your family .

Kim - posted on 01/15/2010

Sarah, I will add your family to my prayer list. I hope that they are able to find medications that will help your daughter with her seizuers. My son had an eeg this morning and hopefully we will learn something soon. Don't forget to take care of yourself, because you can't care for her if you let yourself get too run down! If you ever need to talk, just let me know on here.

Sarah - posted on 01/15/2010

Hi Kim, sorry to hear about your son.

I just reccently found out my 4 yr old has epilepsy, she had 2 abssent ones but at the time thought she had fainted.

The next morning i woke to my 6 yr old screaming Imogens dying mum, she was shaking and twiching.

We drove her to the hospital, the seizure lasted 55mins.

Imogen had tests, the EEG comfermed she has epilepsey, since then she has had two fits only of a morning say like 1 am, where i have found her in spew and urine its heart breaking.

It has been so frighting for me i am a 22 yr old mum, but for any mum its scary.

I can never leave my little girl alone but i am in the process of getting a moniter for her room with a screen so i can sleep for the first time since her first masive fit.

My only advise is a moniter for night if you are worried about that, but i am a bit in the dark atm Kim all i know is she has this epilepsy that causes fits.

Hopefully this sight may help us take care best wishes to you and your family xx

Sarah - posted on 01/15/2010

Hi Kim, sorry to hear about your son.

I just reccently found out my 4 yr old has epilepsy, she had 2 abssent ones but at the time thought she had fainted.

The next morning i woke to my 6 yr old screaming Imogens dying mum, she was shaking and twiching.

We drove her to the hospital, the seizure lasted 55mins.

Imogen had tests, the EEG comfermed she has epilepsey, since then she has had two fits only of a morning say like 1 am, where i have found her in spew and urine its heart breaking.

It has been so frighting for me i am a 22 yr old mum, but for any mum its scary.

I can never leave my little girl alone but i am in the process of getting a moniter for her room with a screen so i can sleep for the first time since her first masive fit.

My only advise is a moniter for night if you are worried about that, but i am a bit in the dark atm Kim all i know is she has this epilepsy that causes fits.

Hopefully this sight may help us take care best wishes to you and your family xx