Seizures in Children

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Unexplained seizures in 21 month old

Jan 2007

My 21 month old boy began having seizures last month while we were in Hawaii. He was put on Phenobarbital for 2 weeks and then taken off because all the tests, including MRI, EEG, EKG, spinal tap, X-ray, blood, urine, stool and more came back normal. Then 2 days later the seizures came back with a vengance. He had seizures about every 2 hours for nearly 4 days before they were able to find the right level of medicine. They sent us home with a load of meds (Kepra and Depicote). I would love to hear from parents with a similar experience who have gotten throught this nightmare. I hate the idea of him being on so much medicine and afraid it will hurt his developement and learning and his body. They have not been able to find the reason for his seizures, which scares me even more. I have left my job, brought him to bed with us at night and cannot take my eyes off of him. Worried to death mama

Our son began having complex partial seizures when he was six. The pain of watching your child with uncontrolled seizures is something we are very familiar with. It is very likely that you will be able to find a medication that will control his seizures. There are several classes of anticonvulsant medications; if one doesn't work it is still very possible that another will. Only one medication worked for our son (after more than six months of trying others without success), but once established on this he was able to return to normal life. The essential first step is to see a pediatric epileptologist. This specialty is a significant step ahead of a pediatric neurologist, both in terms of the sophistication of diagnostic equipment and in terms of detailed knowledge of, and experience with, available medications. Dr. Donald Olson at Lucile Packard Children's Hospital, Stanford, is excellent. I recommend making an appointment to see him as soon as possible. With some effort, we were able to get our health insurance to cover this this out-of-plan service. UCSF's program may be excellent as well, but at the time our son needed help, their program was in a transitional state. Jonathan
A friend's child had seizures and was diagnosed with West Syndrome. The child had many tests and all were normal except for the test for this syndrome. Pam
I didn't read the original post, only the title and some responses. However, I thought I'd respond because of the age of the child. My 21 month old son has had two ''febrile seizures'' - seizures that occur during toddlerhood due to a rapid rise in temperature. They are unrelated to epilepsy or any other seizure condition and the risk goes away after the age of 5 or 6. While extremely scary for the parents, they are actually not harmful to the child and do not increase the chances for epilepsy or other seizure conditions in the future. If your child had a high fever just before/during/just after the seizures, you are probably dealing with these. Jenny
I'm so sorry you've been experiencing this nightmare! I feel for you and don't have a clear insight, but just a big question. We were traveling in Japan when my daughter had 2 non-febrile seizure (also unexplained - or rather, explained that it was just something that happens sometimes - especially w/ toddlers around 18months & young adolescents). We also had the whole battery of tests. . . CT scan, EEG, bloodwork, etc (in Japan & at UCSF). It took some time to get into a neurologist, but we finally saw Kimberly Erlich, a nurse practitioner who specializes in child neurology (we also saw the doctor there, but spent the most time w/ Kimberly). Anyway, it was under her and our pediatrician's supervision that we ever-so-slowly weaned our daughter off the phenobarbitol that she had been on for about 6 weeks. The whole process took almost a month to go from 6 ml to zero. I am wondering if your son may have been weaned to quickly. I specifically recall being told that a healthy adult who has NEVER experienced any seizures could possibly start if weaned off phenobarb too quickly. My daughter's dose was dropped down 1 ml every 4 days (the very minimal number of days recommended) and she experienced horribly nightmares each night after we downed the dose. I hope that you find some answers soon. I know how awful it is to live in this fear. Our only consolation, at that time, was learning that our daughter would not die from having these seizures. Now I am happy to report that it's been almost 12 months w/ no more seizures. And we are told we can expect that trend to continue (w/ no guarantees, of course!) Feel free to contact me directly if you'd like. paula
Hi - I have such sympathy for you. My heart goes out to you - how scary. Watching someone you love have a seizure is beyond frightening.

I am not a physician and I don't know the details of your child's case - I just suggest you talk to your pediatrician/neurologist and seek out resources for more info. Getting info. is key. Fortunately, we live in an area w/ a lot of great, cutting-edge resources.

My sister developed epilepsy in her 20's. I've done quite a bit of research. Stanford just had an all-day symposium of local ''experts'' - with panels on children, women, drugs, etc. sponsored by the Epilepsy Foundation. It was incredibly informative. The good news is that it can be treated, controlled and there is a lot of research and drug development going on.. Check out the Epilepsy Foundation's web site for more info. Stanford has a great research center too (Packard Childrens Hospital) - and you can get your child referred there for a ''work up''. UCSF is also very good. Good luck to you. Sister w/ Epilepsy

12-year-old prescribed seizure medicine

Sept 2005

Two months ago, my 12-year-old daughter had two brief seizures, the second one about an hour after the first. She recovered quickly and seemed her normal self -- and we hoped to chalk it up to puberty -- but a subsequent EEG showed some some seizure activity in her left temporal lobe. The neurologist subscribed Trileptal, a seizure medicine, which he estimated she would take twice a day for two years if there are no more seizures. I did not like the idea of a growing girl taking medicine with potential side effects, but he said the threat of seizures is a greater risk. She has been taking the medicine for about 10 days. I would be interested in other families' similar experiences, and perhaps talking with other parents. Thank you. anon

I, too, was prescribed anti-seizure medication as a young teenager (15?) after having had two seizures and an EEG that showed seizure activity. And, while the (outward/direct) side effects were few for the drug I was prescribed (Tegretol,) it did contol any other seizures and help to calm my and my parents' fears of my having more - especially once I learned to drive. I ended up taking the medication fairly regularly for about 10 years or so and suffered only 7 or 8 seizures (total) in my life - each at times when I was not taking or had forgotten to take my medication. I'm not sure of your daughter's full diagnosis from what you wrote, but if you'd like to talk about it at all, feel free to email me and/or we can talk by phone. alison
Mark Schauss' daughter has had seizures and Mark would therefore likely be a good resource for you. He can be reached via His company, in fact, runs specific tests to identify problems leading to health issues, including seizures. He did find out what toxicity his daughter had and developed a program to help her through it. Nori Hudson

Atypical febrile seizures and preschool

July 2005

Wanted to see if anyone out there has experience with atypical febrile siezures. My son has had one when he was 10 months, and then two back-to-back when he was 18 months.

The first one he had at 102 degrees, turned blue and I had to give him CPR. I think he turned blue because my husband tried to block his tongue (which we now know is a huge MISTAKE, they can't swallow their tongues)

The second one was at 106 degrees, and he was on codeine (which they think may have caused the seizures. They were one hour apart. He had the full brain work up, and he is fine.

They say they are atypical because he does not have a siezure and then get up. He siezes for a few minutes, his 02 levels go way down, and then afterwards he falls asleep for a few minutes. The last couple he had a little trouble getting air because he was frothing at the mouth. (we put him on his side and tried to clear it)

Also, although the siezures have always happened in the evening, I worry about them happening during the day, at preschool.

Anyone have any experience with this? I know there isn't much we can do, although we do try to cool him down with tepid baths when the temp gets over 103, which seems to help him not sieze. Right before he siezes, he crawls into a ball.

Many thanks! anon

Our son also had a couple febrile seizures at around 18 months due to high fevers/fever spiking. The first one lasted for almost 10 minutes and like you I did CPR (while talking to 911) b/c he turned blue. It is an experience you never forget and don't want have happen again.

Luckily for us at he has never had another one. After the first two we were hyper vigilant about fevers. We switched from children's tylenol to motrin or did a mix of the two, we put him in the bath tub if his fever got higher than 102/103, we made sure he drank plenty of fluids AND most importantly I gave him motrin every 6 hours. We also made sure that he either drank water, pedialyte(sp?) or even gatorade when he was very sick with a high fever. His first seizure was due to the fact that I delayed giving him more motrin (so fever spiked) and he was slightly dehydrated b/c he refused to drink liquids.

I will admit that I was a bit crazy about giving him motrin, when in doubt I gave it b/c I could not stand the thought of his fever going too high and another seizure.

Luckily, the doctor's reassured us that children ''grow out of'' these kind of seizures, and we no longer worry as much.

We have never had an issue at school or with his nanny. I would however mention it to the school and ask them to notify you if he has a high fever. Then I would give them instruction on what to do if he has a seizure. Good luck. Been there

We had the EXACT same situation. Our daughter had three atypical febrile seizures. Talk about a TERRIFYING EXPERIENCE, especially the first one. She had them at about 10 months, one at 14 months and the last at 18 months. We also had the full work ups a couple of times, but nothing ever showed up on the neurological tests. She is now 8, and has not had a seizure since she was 18 months, but I always worry when she gets a fever. We did send her to pre-school, but I told the school if there was even a hint of fever to give her motrin RIGHT AWAY and to call me, but she never got sick at school. Our pediatrician says this is a pretty common pattern, and she thinks it is unlikely to happen again. Nevertheless I am very vigilant when she gets a fever. In summary, it sounds like your child will be fine based on my experience, but do understand your fear. I have never been so frightened in my life. Good Luck
I can totally sympathize with your situation. Mine is quite similar. One thing that (mysteriously) helped my son was not giving him tylenol/motrin/advil, etc. with ASPARTAME when he was ill. It is known to dramatically reduce the seizure threshold in children with already low thresholds, like your child. Some generic fever children's fever reducers have ''artificial flavors'' (can we get more ambiguous?) and not specifically ASPARTAME, which may be better. Also, make sure your child does not get overheated or over tired when ill. This also lowers the threshold. Lastly, read the ingredients of everything you give to your baby while sick. Pedialyte, Jello, ''sugar-free popsicles, and ''sugar-free'' anything most likely has ASPARTAME. Please avoid this when your child is ill. Also, if your child is given antibiotics, make sure the doctor and especially the pharmacist knows you'd like to try to elimintae ASPARTAME and see if it makes a difference.

Pharmacists put Aspartame in generally all baby/children's medication for flavoring. Oh, and don't let them put your little one on anti-convulsants unless they can prove he has epilepsy, which he probably doesn't, as febrile seizure are common at that age. Please email me if you want to discuss further. mssslade

I understand your concerns. My son only had one febrile seizure, but it was undoubtedly the most terrifying day of my life. It happened about six months before he started preschool, so I was wary making that transition, too. Here are a few things I learned that I hope will help you feel more confident.

First of all, every medical professional I have spoken to about febrile seizures has told me that they become less and less likely as the child grows older. That means that every day there's less of a chance that they will happen again. Second, febrile seizures are brought on by fevers, so unless there is something else going on (and you should talk to your doctor about that), most days will be fine. Most of the time, if your child is sick and at risk for a fever, you will know and will know early enough to keep him home from school. However, it is possible that your child might not show symptoms of illness until he is at school. If that happens, you will need to rely on the preschool staff to help.

Remember this: if a child starts to show signs of having a fever, the school will try to find you to come bring him home. They don't want a feverish child there any more than you do. So find comfort in the fact that they will do what they can to get your son into your care as soon as possible. Most preschools will ask you to fill out a detailed medical history, and specify if there are any optential problem. At my son's preschool, I had to fill out a special form for the teachers to be able to give my son Tylenol, which brought his potential for febrile seizures to the surface in a very responsible way. I authorized the teachers to give my son a responsible dose at the first sign of fever and then to call me right away. But as I said before, schools want very ill children to be home with their parents, and will do what they can to find you.

Chances are your son will be just fine in preschool. If you have found a place you feel you can trust, then you can trust them with this situation, too. Consider the teachers to be a kind of partner, and you might feel a little better. And remember that, no doubt, they want what's best for your son, too. Carolyn

My Son has seizures and is at the center I founded, A Brighter Today. We have nurses on staff as well as staff that is highly trained in dealing with seizures. We are going to offer training in Epilepsy, it is free and open to the public. The most important thing is your child's safety! As a Mom and the Founder I can tell you that training and education is paramount! Tracy

Toddler's seizure at daycare

July 2004


Last Friday when I arrived at our day care to pick up my two year old twin daughters-(lets call them ''twin A'' and ''twin B''). I was asked if ''twin B'' has seizures. Apparently - ''twin B'' had, had a seizure 10 minutes before I arrived. She appeared to be a little lethargic when I arrived and sat on my lap for approximately 3 minutes - and then ran off to play with the other children.

Unfortunately, I was not there to witness what happened. Our daycare explained that her seizure lasted 10 seconds, her legs stiffened, and her eyes rolled in the back of her head. She had no temperature, and had not fallen during the day. My husband and I do not have a history of seizures in our family. We took ''twin B'' to her Dr. and learned that approximately 3-5% of children have seizures in their life time. We were told she may never have another seizure and not to worry because seizures are not life threatening and usual harmless - just incredibly scary to witness. For now we are hoping and praying she never has another seizure but also aware that she may have others.

I decided to write this email - to learn about other peoples experiences with seizures. I look forward to learning from you. Afraid - Concerned - Mum!

Don't panic but DO take your child to see a neurologist. A seizure should not be ignored even though ultimately your child may not require treatment. Some seizures require treatment and others don't; a neurologist will help you figure out what happened and why and decide what is best for your child. In my experience, the way neurologists figure out what's happened/happening is non-invasive and won't hurt your child. In my opinion, the child-care center should have notified you immediately when your child was having a seizure. In general, I think it is a good idea to take your child to the doctor or hospital immediately if this is the first seizure --or any time a child loses consciousness-- even if they come out of it and seem fine. parent of child with epilepsy
What had she eaten that day? Seizures can be caused by food allergies despite what traditional doctors say. Food allergies don't always show up on tests. Abbie

Fever Seizures

March 2003

My son had a fever seizure for the first time yesterday. He's fine now, fever down, anti-biotics at work. Although the common medical wisdom is that these fever seizures are essentially harmless, I found the whole experience--including the ride in the ambulance and the six-hour stay with multiple tests at the hospital--to be terrifying. And we've been advised that it may or may not happen again next time hehas a fever. I would appreciate hearing from other parents who have kids with fever seizures for some advice about how I can control my anxiety next time my boy has a fever, and some nuts and bolts about how to deal with this mysterious condition. Thank you. cbw

from what i know, the febrile seizures occur when the child's body temperature spikes too quickly. my son had one when he was 2. it was a short one and it has never happened since. he is almost 5 and i think that is when the occurences decrease significantly. the next time your son gets a fever, he will not necessarily have a seizure. i don't think there is much you can do about your anxiety except that if it happens again, you will have more knowledge and experience. (the first time i went to the ER with my child, i cried; since then, i have been to the ER 3-4 more times, but with less anxiety.)

my coworker's daughter had frequent seizures that would last up to 30 minutes!!! she even had to do CPR on her own child. how scary. she eventually had tubes put into her ears and that really helped. been there

My daughter had 3 febrile seizures between ages 1 and 2 and 1/2. The first one was the most terrifying. Call to 911, ride to the hospital, tests and more tests, but the other two were not much better. I got the same advice that they are not a big deal and there are no lasting effects. I am not sure I believe that because my daughter did start having language problems shortly thereafter (but I am not a doctor so could not say definitively what was cause and effect).

Anyway the doctors all said nothing we did could prevent the seizures (a result of the fever spiking up suddenly), but once I started paying close attention to her temperature when she was sick and making sure she took motrin when it first got elevated she never had another seizure although she has had fevers.

I don't know that this will easy your anxiety, but my daughter is now 5 and a half and a has not had a seizure in 3 years. A Mom

Our daughter had her first fever seizure at about 13 months. It scared the hell out of us, and we also spent hours in the hospital emergency room making sure everything was OK. But the doctors (as well as all the books we read) assured us that, although harrowing, fever seizures have no impact on the child. She's now a happy, healthy, very verbal, very active 3 1/2 year old. She's had 2 other seizures since that first one--each just as traumatic for us--but they seem to have had no lasting effect on her. Doctors and books also said that this condition seems to only affect children until they are 5 or 6 years old.

That said, here's how we deal with it: If it appears, even remotely, that she's getting a fever we give her a dose of children's Tylenol, and get her in the bathtub. Either my husband or I get in the tub with her. We don't make the tub water cold, just warm and comfortable for us both to sit in. Most of the time we've been lucky and caught it on time. Also, now that she's older and bigger, it really doesn't seem to happen as much (knock on wood). Feel free to email if you want to discuss further. ruth

My son also had fever seizures when he was younger, four in fact. The first one occured on Christmas Day. I tell you, I still can't see the pictures of the family dinner we shared on the 24th because it only brings back horrible memories of our ride to the hospital at 2AM. It was horrifying.

The best advice I can give you is that you need to always try and keep your child's temperature down. When you notice she/he is getting a fever, immediately dose him up on advil which is good at reducing fevers. From what our pediatrician told us several years ago, the seizures occur because our son's temperature rose too quickly for his brain to stabilize. I'm sure there are plenty of other factors, but that was the one that made most sense and since then it has been my husband and my mission to always keep his fever under control. My son is now 8 years old and has been seizure free for the last 5-6 years. However, I know it can always happen again. Just maybe not as frequent as when he was smaller.

Remember, reduce your child's fever as early as possible. Bathe him in luke warm water and do whatever it takes to make sure his temperature does not rise too quickly. If it does happen again, although it is hard not to, don't panic. Make sure he is breathing properly and take him to the hospital if he is not conscious or responsive after the seizure subsides. I know it's hard. I know it's difficult and scary to see your child go through this. But the good thing is that children tend to outgrown this. It'll be okay. J's Mom