Anyone with unknown cause of seizures? And is 1-4 years old please write back.

Patricia - posted on 10/29/2008 ( 30 moms have responded )

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How come doctors can't give me an answer? Why does this happen? He had 4 of them. I have him on Tegretol and it has helped cause its been a year. I am told if he is seizure free after one more year than I can stop. But what if he has them again and I not there. He will be starting Kindergarden at that time-and kids can be crule. Especailly when they don't understand. I just don't understand. I am told that this is common. I am told that this can be the result of an underdeveloped brain? If you were to meet him you would never know. He appears completly normal. He is not delayed in anything. Just these seizures-I don't get. What is going on? Anyone else Is this happening too? Please write to me. I would love that. Thank-u

Patty

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Rebecca - posted on 04/06/2014

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I feel for all of you, my grandson woke up a few weeks back and had 5,6 seizures within a few hrs, they put him on Keppra and sent him to Fargo, all of his tests are comming back normal, but since the seizures and keppra he is not himself, he was bubbly, fun laughing, loved life, we weaned him off the keppra he has not had any seizures but he's not himself either, he flies into rages hits bites scratches, throws things, it's horrible and heart breaking, more poor daughter whom is pregnant and due at the end of the month is fit to be tied, at our wits end......

Kate - posted on 10/17/2013

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I totally understand your thought process and I went through EXACTLY the same confusion and 'why?' period after my little girl was diagnosed. At 150 absences a day i was sent home with a package of unanswered questions and some medication (which we didnt use) - no investigations into causes/reasoning - nothing! Shes 8 now and seizure free - I hope that this gives you some small comfort

Warmest wishes

Kenias - posted on 02/27/2013

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I have 4 yr old son that has been having seizures since he was 6 months. Neurologists said it was trigured by fevers. Well that was the case for the fitst 2 yrs of his life but now at 4 he has them at randomn. As i write he just had one with no fever and it the 3rd day in a row.

Its very depressing and we are looking for a good doctor in the Houston area if anyone knows of any. He plays and behaves just like any normal 4yr old. All scans and EEG have shown normal.....HELP

Ruth - posted on 10/02/2012

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My three year old granddaughter has just been diagnosed with epilepsy. Her EEG was normal her Sleep deprived EEG was normal and she has a MRI tomorrow. She had one "staring seizure, one full blown "tremendous seizure:, and last night one when her moth twitched, she drooled and wet herself. This one lasted 2 minutes. She doesn't seem to fit any of the patterns for any one seizure and the doctor last week said she had temporal seizures and today he is calling it "Rollins" seizure which doesn't usually need medications but he wants her on medication. I guess what I am saying that a lot of times the doctor just is making his best guess. Every child is so different and every child's seizure is different. Medicine has come a long way but it has a long way to go. The brain is the organ that they know the least about.



It is so hard when their are no concrete answers. I am a nurse and always feel bad when we have to tell a patient or a parent or a family that we don't know what is going on. I know how much I am upset about all this with her and I am just her grandmother. Just hang in there.

Amie - posted on 01/26/2011

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i have the same worries about my son he is 3 and a half and has them every few months, he has had 10 in the last 2 years..every test and scan they do is normal they don't no why he has them, if he gets a cold or flu or even just a viruse in his system he can have a seizure, thats all they can tell us is a cause..the strange this is he does not have to have a fever to bring them on, and he has had them even when he was sick at all...they say his seuzures are considered "controlled" but still has them ever 4-6 months..first they said he would grow out of them but now his neuro is saying he is doubting tht he'll grow out of them..they also at first said the seizures werent going to cause any delay in his development but now he is saying that he thinks the seizures are what are causing his delays...it is very frustrating and i feel for you, there is no worse feeling as a parent than knowing there is something wrong with your childand knowing you cant do anything about it and cant get any straight forward simple answers...

Sioban - posted on 11/13/2008

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Hi patty,

My little girl is 7 and she started having febrile convulsions at 6months old but from the age of about 3 was having them without fever the doctors had her on tegratol from age 4 for a year which hadnt really stoped the sezuires but after i had my son she had a week with sezuires every night she is now on epilim which i helping but they still cant give me a diagnosis of what she has! about 4 months ago we found out she also has spina bifida occulta so i do wonder if that has anything to do with it but until such tiles as the doctors actually do better testing it just sucks!

My girl howver has been delayed in most areas she didnt walk till she was almost 2 and didnt talk well enough to understand her till she was almost 5 she is in grade 2 at school doing not so bad now! i am hopeing to get her weened of the epilim soon enough as she hasnt had a major sezuire for about a year!



All you can do is hang in there and dont take no for an answer from the doctors i dont know about you but im sick of hearing there is nothing we can do and waiting to do tests far to long after the actual seizure hapens!



sioban

Elise - posted on 11/13/2008

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I feel your frustration! Has there been anyone in your family who ever had a problem with seizures? Though our doctors have said they don't know the cause of my son's seizures, there is a family history of infant seizures. I had them when I was an infant and was medicated until I was 3. My son is going through the same thing. I also have 3 other family members who have had this simmilar situation. Everyone who had seizures in my family outgrew the condition and never had one after age 1. I still worry about my son. He had so many more seizures that were more severe than anyone else's as far as anyone can remember. My son is now slightly delayed in speech and is in a preeschool that helps with his challenges and is familiar with his past. He is now off his meds completly and so far so good! I still wish I knew WHY! The human brian is so mysterious and hard to study...

Michelle - posted on 11/11/2008

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I feel your frustration, I'm just happy I'm not the only one feeling this way. My son doesn't have any delays either, in fact, he was always ahead of his classmates. My son is 3 1/2 years old and his first seizure about 6 months ago out of the blue. It lasted about 10-15 minutes, which seemed to be an eternity. He went to the ER, and of course the neurologist felt it might be a fluke, especially since all of the testing he went through(MRI, Catscans, EEGs...) came back normal. Basically he sat up and started gagging like he was trying to throw up, which on some occasions, he did throw up. Then he would just have blank stares, and became limp & pale, but could not respond to me, no matter how much I tried to get his attention. Sometimes just before he went into the seizure(partial complex), he would speak to me, but it wouldn't make sense. Incontinence has occurred, as well, during 3 of the 5 episodes. After 10-15 minutes passed with just the blank stares, he would make a sigh, close his eyes, and then fall asleep for about 3 hours, and then when he would wake up, he would have a terrible headache crying with the pain. I would just give him Motrin, and then after a while he would be fine. Up to date within the past 6 months, he has had 5 total seizures. They are not consistent, but they only occur during his sleep at night, or first thing in the morning when he wakes up. I didn't think anything at first, but then 2 weeks later, he had another. Of course, I went to different specialists, and never could really get a clear answer. They wanted to throw him on medication, but I needed to investigate some more. Still no answers... Then after about a month, he had another nocturnal seizure, which has the same symptoms as the first episode. Then I thought it could be the environment or a reaction, so I removed him from his bedroom, and kept him with me, and for 2 1/2 months, he had no episodes. Then, I went up North to visit some family, and he had his 4th episode, for no reason, so the eliminated his bedroom being the culprit. During his 4 episode, he walked to the bathroom with my guidance as if he were intoxicated. Finally, I decided it may be time for medication. When I returned to Florida, shortly after about 2 weeks, he had his 5th episode, but this time, I gave him Acustat Dial rectally, so his episode lasted about 10 minutes. I consulted with his neurologist, and we agreed to put him on 1cc/twice a day of Keppra, which at first didn't agree with him, because another neurologist decided to put him on Keppra, but starting with 2cc's/twice a day, but he could hardly keep his balance, and kept falling, so I almost stopped completely, but then, we changed to only 1cc/twice a day, and he has adjusted well, and has been seizure free since Oct. 9... One thing I might add, I finally went to Miami Children's Hospital for a 48 hour EEG, and they finally were able to detect epilepsy activity, but they were never able to record a seizure, but finally I had an answer. The neurologist said he had focalized occipital epilepsy, and if medication controls his seizures, that he would most likely grow out of it. He also said that my son was born with this, and it will work out on it's own. 66% of the cases, children grow out of it, unless the seizures are not controlled with medication. Feel free to email me anytime... God bless you and all other mothers and families...

Melody - posted on 11/11/2008

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Hi Patricia! I have a son who will be seven in March, when he was 4 months old he was diagnosed with idopathic seziures. It was very scary for my husband and myself. His seizures were so mild (thank God), we weren't sure what was happening when he started having them. Had it been a different time of year I would have chalked it up to he was chilled,it was August when they started. When he would seize he would shiver like he was cold, the only difference was he was non responsive. My husband would stand beside him and call his name or clap his hands and he wouldn't turn his head, he just had this blank stare. It was truly very scary. Idiopathic seizures basically meant the doctors did not know why he was having them; EEG was normal, no family history, every test they gave him came back normal. He too was given Tegretol, unfortunately as he grew the Tegretol had to be adjusted several times. The doctors told us that his metabolism was chewing up the Tegretol faster than it was helping him. When he turned three they changed his medicine to Carbatrol. We loved the Carbatrol because it was a time release capsule. The only thing I didn't like about the Carbatrol is that I think, doctors disagree with me, the Carbatrol broke down the enamel on his teeth. He had several cavities about a year after he started taking the Carbatrol, because it was a capsule and he couldn't swallow pills yet we had to put it in food or just pour it in his mouth. But because the Carbatrol was a time release capsule it controlled his seizures more effectively. We didn't understand his seizures either and the doctor's kept telling us that hopefully he would out grow them. I had the same fear you do, I kept praying that the Lord would heal him before he started school; that did not happen. He started pre-K still taking the medication and did fine, only one time while on the medicine did he have what they think was a seizure at school. He was never teased by the other children, I think it helps when they're younger and have a disorder like this one. I am happy to say that he just got released from his neurologist in October!! They started weaning him off of the Carbatrol in June and he's doing great -- seizure free for two years (that's the rule)! I just wanted to let you know it is possible and he will be okay, your son sounds just like mine. On outward appearance you would never know there was anything wrong with him. I will pray that your little one will have the same good fortune as my son.

Traci - posted on 11/10/2008

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Patricia, I can feel for you, we are in the same boat. My son had his first seizure at 6 months old. This only happen with fever and was 2-3 times a year til he was 7yrs old. Then last year after the death of my 4 year old niece (from brain cancer), he had 3-4 seizures a week. We have been on and off medications since December with still no answers. He has started having panic attacks, because he is so afraid every time he feels weird that he is going to have a seizure. He does not like to be the center of attention and unfortunately he has had several seizures at school. I just started taking him to a counselor to help him get through the death of his cousin and dealing with Epilepsy. He just saw a Neuropsycologist Friday, because he is showing signs of memory loss, concentration, being very aggressive, as well as going from an A-B student to failing all subjects. It is very frustrating, I know!! I work for a family practice doctor, so I have a little bit of help. He has contacted a Neurologist he knows and that doctor told me the only place to get answers and be truly satisfied is The Cleveland Clinic in Cleveland, Ohio or The Emory University Hospital in Atlanta (which is about an hour from me). But the problem with this is I can not get him in to Emory til March and I am still waiting to hear back from The Cleveland Clinc on an appointment. Sadly there are not enough Pediatric Neurologist to cover the mass number of children with neurologic problems. Keep your chin up (I try to laugh as I say that, since I spent the entire evening crying. I am having problems with my job because i have been out of work so much). Just keep on top of it and push the physicians for help and answers. Kids are crule, and unfortunately we can not protect them forever, but I have found that for the most part they are very understanding and concerned. I have only had one problem at school with a child that required assistance from the teachers. Keep in touch and let me know how you are doing, I will try to help in any way I can. Traci

Carolyn - posted on 11/09/2008

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My oldest was diagnosed is infantile spasms at 7 months and progressed to myoclonic type at 16 months. They were never able to identify a cause. Now at 2.5 years, we know she also has autism, sensory intergration and sleep disorders. Again, they don't know why. The genetisist has been doing work-ups for the better part of a year with no solution (on top of the multiple MRI's, LP's, and various other tests). She's just wired weird.

It's difficult not knowing why your child is different. I used to think God was punishing us, until someone wisely pointed out that if God punished people by giving them special-needs children, everyone would have one. Kids can be cruel, but they're also more forgiving than we realize. My daughter is non-verbal and virtually ignores most other children. We get a lot of queries from curious 3-4-5 year olds who try to play with her. I just tell them that her brain works differently and that she hasn't learned to talk yet. They accept that and continue playing with her anyways.

Blessings to you and your family. I pray that you are able to find a solution.

Erin - posted on 11/09/2008

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We have a 3 year old who started having seizures in March. We had to go through 3 EEG's and an MRI before they were able to see the seizures. The neurologist that we have been seeing told us that it could take a few tests before the find a definitive answer. I was concerned about her having a seizure at her babysitter's and the other kids were fine with it. She's never had a major seizure but she has had little ones and the kids didn't do anything. If you're worried about school, you can get a medic alert bracelet or necklace. My daughter loves hers. She knows what it says and she knows when she has seizures now.

The other thing is to find out if anyone in your families had them, even as a child. My dad did a LOT of research and found out that if a parent has them as a child (even fever convulsions) the a child has a 50% chance of having them. If it's in the family too. Good luck!

[deleted account]

As many before on the board, I have a daughter who started having seizures at 18months. They have never been able to give me a reason and they do say that it is the best sign. They also say they may grow out of them. She is now three years old and has been seizure free for 9months.

Amber - posted on 11/07/2008

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Hi Patty, my name is Amber and my now three year old started having seizures in March at 2 1/2 for no apparent reason. They didn't last very long and only one of them, the first one, of course, was the worst one but then again only lasted about 2 minutes. They did CAT scan MRI at the hospital then sent us to Akron Children's Hospital the next day where over a course of 2 weeks they did 2 EEGs and one 3-day video monitored EEG which confirmed seizures even in his sleep but still no cause what so ever. He has been on Trileptol for almost nine months and hasn't had a seizure since the last one in hospital. But I haven't slept in nine months constantly checking to make sure he is breathing. And like your son u would never know he had them he's quite intelligent. The doctor told me the same that in a year or two if he doesn't have any that it was just Seizure Disorder but if we take him off meds and they continue, then it is Epilepsy. Who knows, its just not fair I know and very frustrating.

Becky - posted on 11/06/2008

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My daughter is 6 and has many different types of seizures. She has been seizure free during the day for a year now, but continues to have grand mals and atonic seizures at night. She is part of the 70% of unexplainable seizures. From what I understand, there are so many different types, it is difficult to pinpoint a cause. It is nice to know there are so many other parents dealing with this issue. We all just want our kids to be healthy, don't we? I am so scared she will have one at school and will be alienated. I am thankful they only happen at night, but hope that someday, we will be seizure free. I think all we can do is keep going to those appointments. Keep loving your little angel's. They need us.

Patricia - posted on 11/05/2008

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Thank-you for taking the time to write. You all were a great help!

Please feel free to keep responding.

Rebecca - posted on 11/05/2008

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Hi My son has been diognosed with epelepsy he is in Kinder this year and he has had no problems so far.... he is also on tegratol, the doc took 2 years to diognose him! Hayden is a normal active 5 year old boy, this condition hasnt slowed him down at all (thank god) he still has sleep overs and goes to partys, I just make sure there isnt going to be any flashing lights. I get nervouse when he stays over at a friends place i think what if he has a seizure what if they dont give him his medication? but so far he has been safe and well. I was told it could have been caused by lack of oxygen at birth, but depends on who you ask to what anser you get its verry frustraiting thats for sure. does your son seem to be hungry all the time on tegratol? Iand I have noticed my son gets massive bruises which is a side affect from the medication.

[deleted account]

Hi Patty- When my oldest daughter was 8 she had (out of the blue) 3 seizures in a 6 hour time span. Doctors can not tell me why she had them, which I was told is a good thing because it means there is not an underlying cause such as a tumor. She is on trileptal twice a day & her neurologist told us the same thing, after 2 years of being seizure free she could stop the meds. She made it 2 months shy of the 2 year mark & she had another one. Her first seizures were grand mal and the one she just had this past April was a petit mal. As a mother it's hard not to have an answer as to what is causing this to happen but I do take comfort in the fact that there seems to be no reason, which means there is nothing like a tumor causing them. I think some kids brains are just wired differently. Good luck with your son :)

Laura - posted on 11/04/2008

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Tricia...my advice to you (and I happen to be a nurse) is get a second opinion from a pediatric neurologist!!! If you already went to a pediatric neurologist...go to another one!

Tricia - posted on 11/04/2008

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My two-year old has been having dizzy spells, ehich they are calling seizures, but they don't know for sure. They want to put her on Lamtril but I am scared to start an anti-seizure med when they don't really know what these dizzy spells are.

Natasha - posted on 11/02/2008

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Hi Patty! My name is Natasha and I have a 5-year-old little girl that had 2 seizures right before her 4th birthday. She had another shortly after her 4th birthday and one more 4 months later. She under went numerous tests, only one (the sleep deprived EEG) showed abnormalities. We chose not to medicate her, because she was not having seizures very often and the ones she did have were not that sever. She has now been one-year seizure free also! She is on track developmental and maybe even advance (she is already reading). Like your son, you would never know that she has this disorder (if you want to call it that), because she appears normal. I was also concerned about her starting school (she started Kindergarten this year), but she is doing great. The school keeps a rescue pack just in case. I still worry, but I have to let her be a kid. I remember thinking how could this happen. This isn't fair, but I have hope that she will out grow it. And I know the longer she goes with out having a seizure the less likely she is to have one. I hope my story helped.

Laura - posted on 11/02/2008

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Hi Patty!
My daughter is not in the age range of your question, but I thought that I would share with you how we handle our situation with her, school and friends.
My daughter (who is now 11 and in 6th grade) started having seizures right before she turned eight. She was diagnosed with Partial Epilepsy and has what's called Rolandic seizures. They are primarily facial seizures and can or cannot be followed by convulsions. She has the convulsions. Characteristically, they occur right after she falls asleep or right before she wakes up. Chances are she won't have them during the day, but you never know. So, I took the necessary precautions by alerting the school and parents of her friends on what to do should she have a seizure when I am not around. Here's what I did to prepare my daughter, her friends, and the school:
1. First of all, we are very open with our daughter and her epilepsy. This is how God made her. It is nothing to be ashamed of. I think you can do this with any school aged child in a way they can understand. We reassure her that she is OK and that she is safe no matter where she is.
2. DON'T PANIC, DON'T PANIC, DON'T PANIC!!! This is a tough one. Even for me and I'm a nurse. I know what to do and how to handle this, but it's different when it's your own child. It is very important to me that she comes out of her seizure knowing that she is OK. Safety is the #1 concern especially with convulsions. I have come to learn that she can hear me during a seizure, but she can't react to what I am saying. When she has a seizure I make sure that there is nothing around her that she can hurt herself with. NEVER, NEVER, NEVER put anything in their mouth!!! Talk in a calm voice letting him know that you are there with him and that he is going to be OK. I have found that when I do this, she comes out of seizure much more easily with a sense of security.
3. When it came to her friends and the kids in her class, I went through their parents. It was important to me that they understand what is going on and that if they ever witnessed an event and an adult was not around...that they would know what to do to get her help. The parents explained to their kids what was happening and the kids have really embraced my daughter. Especially the girls...I think that their "maternal instincts" come out a little bit. I have NEVER EVER had a problem with kids making fun of her because of her epilepsy. I think that when they understand the seriousness of the issue it puts a little bit of responsibility into their hands. If the parents can explain to them what is going on it won't be a surprise to them if they ever witness your son having a seizure. I think that they would feel a sense of accomplishment if they knew that they could help him.
4. As far as the school goes, I received a form from my doctor on steps to take should my daughter have a seizure at school. It remains in her file and all faculty and staff members are given a copy of it at the beginning of each school year. The school has now applied that form as their policy on what to do should any child have a seizure while at school. I would be more than happy to e-mail you (or anyone else for that matter) a copy of the form. You can e-mail me @ LLS472@aol.com .
5. Be open with yourself, your son and people that he comes in contact with. I do not hold back on this one. Anyone that knows our family knows about her epilepsy. I think that you'll find security in knowing that when you are not around (especially when your son gets older) people will know what to do. Talk to everyone...family, friends, teachers, coaches, mentors, etc... Fear is what holds people back. When they see that you are comfortable with the situation...they will be less likely to overreact. They will know what to do and how to help your son...and that should give you some much needed comfort.
I wish you and your family all the best.
Sincerely,
Laura Stewart~

Kerry - posted on 11/02/2008

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the drs put my daughter on tegretol when she first started having seizures no help at all they kept increasing the amount until in the end she was having 3 tonic clonic seizures / day, up to 20 drop seizures / day and an uncontrollable amount of absent seizures she was a walking time bomb. they then put there hands up and said I don't know what else to do.I then insisted i get sent to a specialist in a children's hospital and the drs there could not believe what they had done to her. over the weeks and countless tests eegs scans etc and medication changes we found a good combination that keeps Zoe semi controlled, she is currently on epilum and frisium. she now doesn't have to wear her head helmet unless she plays outside , she is in kindergarten currently and the teacher had explained to the kids through a book she got from the epilepsy foundation what can happen, and the few time she has had a seizure at school the kids have been great in supporting her during and after

Amber - posted on 11/01/2008

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Also, our daughter is delayed. She didn't roll over for her first time until she was a year, crawl til 14 months, stand til 15 months, walk or eat till she was 20 months.

Amber - posted on 11/01/2008

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Our 23 month old daughter has been having seizures since she was 5 months old. We have had her to SEVERAL childrens' hospitals & doctors in 4 states (Minnesota, Texas, New York, Washington) and still no answers. Our daughter was also put on 3 different medications over this time and none have worked, most just made it worse. Even though we don't have any answers (like many here) it is nice to know we are not alone!

Bonnie - posted on 11/01/2008

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Hang in there Patty, I think these are just one of those things that no one is suppose to have an answer to. My daughter started having seizures when she was 5, she is now 10. Luckily we live in a small community where the teachers and students were and are very understanding. She luckily didn't have a problem with kids teasing her. She was put on Tegretol at the beginning and lets just say that was not her friend. She was switched to a combination of depakote and trileptal which works well for her. She just actually had a seizure on the 23rd of Oct. after almost a year and a half of being seizure free. Talk about a bummer!!! She has had so many tests, sleep studies, etc, and like most other parents...no reason or cause :( We did however basically pin point it to what triggers them for the most part. She had her own alarm clock for school in the morning as well as me having mine. Lots of mornings I would get out of bed to notice she wasn't down from her room yet, at that point I knew what was happening. Soon after we took the alarm clock out of her room. That seemed to help for a long time, she went from lots of them to what seemed like nothing. This last one she had she happened to be sleeping in bed with me and I heard her talking in her sleep right after she fell out of bed...so I don't know if it is what caused her to fall out of bed or if falling out of bed is what triggered it. I do remember her very first one when she was 5 she fell out of bed then too and started having one. Scariest thing ever..watching your child go through it. I used to get extremely angry, not at her of course but at the situation and all the doctors that couldn't tell me anything. I actually found myself shamefully pulling myself away from her because I was so scared. Thought it would maybe hurt a bit less, but quickly put myself in check and realized that you and only you know your child and some doctors are just better off being the average joe. My advice to you is to hang in there, find all the support you can and use it and if you havent found a doctor yet that you really like keep looking and don't settle. If by chance you have a wonderful doctor good for you..you are lucky. Sorry for the rambling, it is nice to share stories. Congrats to those Moms and children that are seizure free. WAY TO GO!!!

Christine - posted on 11/01/2008

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My daughter was 4 when she had her first seizure ( a grand mal that lasted over 1/2 hour).... from what I am told, it is a GOOD thing when seizures are idiopathic and have no known cause. If they find a cuase for seizures it is usually a serious underlying health condition (tumor, bleeding in the brain, or some underlying health issue). We have no know family history of seizures either... Dr's feel Melissa will outgrow this... they told me between 80 and 90 percent of kids with idiopathic seizures, childhood epilepsy will outgro it by time they are young adults. My daughter was seizure free for a year and a half and we started talking about weaning her off of the meds when out of no where, after so long, she did have another seizure (partial compex 20 minutes). A great book to read is "Seizures and Epilepsy in Childhood A Guide" Third Edition by John M. Freeman MD. (Johns Hopkins Press Health Book)... it really helped me understand a lot of things that the Dr didn't take the time to talk about. I wish you all the best.

Andrea - posted on 11/01/2008

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Hi Patty,

I have a son, Bradley who began having seizures at seven weeks old. Had many until 2 1/2, free for two years and four in one week at 4 1/2. We were never given a reason why Bradley had seizures. From all my research, I am able to say it is because his brain is wired differently than other people's brains, and that is just the way it is. Most Neurologists don't know what causes seizures. There is just misfiring in the brain, and that is the cause. As a mom, though, that vague answer was hard to comprehend. I thought it might be from something he had a reaction to in his environment or something he was eating. I went through many alternative therapies and 'tests' to figure out a better answer. It was all for nothing. He stopped having seizures all on his own, only to have more two years later.



My advice is, love your son (like you don't already :). He is still the same cutie pie he always has been. You may be lucky and the seizures don't affect him or his learning. Kids can be cruel, but they can also be loving and caring and understanding. My son is in K4 and he has some major delays. He has an aid in the classroom and the kids have been great to him. He wouldn't care/understand if they were not, but I know. He's a super happy kid and a light in my life. I make the best of the situation. Even if it isn't ideal. We don't have all the answers, and neither do the doctors.



Good luck.

Andrea

Holly - posted on 10/31/2008

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Hi Patty, I have a 5 year old that had his first seizure at 3 months old, that one I think could of been from a spik in a fever but 5 years later he is still having them and each month seems to be having more of them, and can't find a med that really wants to work for him. Same thing the drs have not idea why he is having them be sides he does not have a normal eeg but thats because of the seizures.



Yes it is very hard not knowing why they have them and what did they do to deserve this. My son is also very delayed.



Holly

[deleted account]

Our son began having seizures out of the blue when he was 2 months shy of turning 3. He was diagnosed with Lennox Gastaut Syndrome a form of epilepy which means Nathan had multiple seizure types, grand mal, drop, muscle jerk, etc. We first put him on Depakote, the seizures became worse. After 4 weeks we weaned his Depokote and put him on Zonegram. That didn't help either. Nathan was started on a diet for Seizure control...Ketogenic Diet. He had his last grand mal seizure the 3 day on the diet. His muscle and drop seizures ended 2 months later. We remained on Zonegran for a year, the diet for 2 years. He began Pre-K on the diet, but we were in the process of weaning him. He began the Keto Diet on December 6, 2004, he began a normal life again January 1, 2006. He is seizure free, medication free, diet free now. We actually had our last visit with our Nuerologist August of 2008. Our doctor in Texas indicated that he believes Nathan was on of the 1/3 of kids that has been able to catch the seizures early, get them stopped early, and allow his brain to develop and heal over the part that was misfiring. We may someday have seizures again, only God knows, but Nathan is a very bright 1st grader now. He is seen as being on target and even maybe a bit advanced intelligence for his age. The only setback was speech but with Speech Therapy at school since PreK he has overcome that problem as well.



Our Doctor could not give us an answer to our questions either. There is not a history of epilepsy in our family. Nathan suffered no injuries or illnesses which linked him to the condition. Our Doctor indicated the fact there is NO REASON they could see for the seizures was actual in our favor, because we are only having to treat the seizures not potentially tumors or other issues causing them. There is no genetic defect, etc.



Hang in there. I definitely know what you are faced up against. We worry everyday they will return and now watch our 19 month old son too wondering will we be faced with the same thing with him in the future.



Hope this helped.

JANA

Mom to Nathan, Seizure free since February 2005 thanks to God, our wonderful Doctor and the KetoGenic diet!!!

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