Has Anyone Elses Child Ever Had a Seizure/epilepsy

Yes! Likely had been having them for a while, but since they were in the sleep-wake cycle, it was never *seen* like that -- until the night she had one while up and fell behind the bedroom door (fun getting in there!). Guess my pedi had ~me~ trained as I just observed what happened after finally get back in the door! (gotta remember - it was after 11pm and by the time we got her out, it was over - here they'd have thought we lost it as it just looked like she was sleeping!) --oh yeah, she was about 13 at this point!

They did no testing until the second SEEN one (even tho it was suspected since she was a PITA to wake) - guess that's probably insurance related!

Easier said than done, but just get back to as normal a routine as possible and relax. He may never have another!

ps - if you were near here, I'd give you the name of a good pedi neuro!

Make an appointment ASAP with a pediatric neurologist. They'll be able to run tests and get your son on appropriate medications if necessary and take a full medical history and suggest possible causes. If you can narrow down a cause, you can make a lifestyle change to try to minimize the occurrences.

It's also possible that he'll never have another one.

My husband's family is prone to every different type of seizure that's possible, including his brother (febrile and grand mals), our niece (petite mals), and our daughter (petite mals), several cousins (febrile), and cousins kids (one-time seizures).

I know how scary that is. My son had a grand mal seizure when he was 8 years old. It's not always bad though; my son is 17 years old now and is healthy as can be.

One evening while me & my son were talking in the kitchen he grabbed his head and screamed that it hurt. He was crying. He had been fine 30 seconds before. I told him to go to bed and I'd be right behind him (had to turn the stove off since I was cooking). He took 3 steps and fell on the kitchen floor having a grand mal seizure. It felt like it lasted for hours, but it was only a minute or so.
I scooped him up & rushed to the hospital, speed dialing my husband who was in the field for 2 of weeks of training (Army).

The hospital checked him over, but didn't tell me anything except take him to regular doctor the next day, who referred him to pediatric neurologitst. After some tests he was diagnosed with epilepsy, and it turned out he had been having small seizures (sometimes more than 100 in a day) almost every day for years, but no one realized it. We thought he was just staring off into space or got distracted easy. Turns out what we all thought was spacing out were really seizures, but since they weren't the fall on the floor and convulse kind none of us realized what was happening. If he had not had the grand mal seizure he would probably never have been diagnosed, which could have led to more problems.

My son was put on anti-seizure medication and never had another grand mal. He did have a few small seizures when he had to change medications (first one caused rapid weight gain).

There are different kinds of epilepsy. The doctor told us the kind my son had would probaby stop during puberty, and it did. My son was weaned off of all medication 5 years ago and has not had a seizure since.

I'm surprised he wasn't admitted at least overnight for observation. My cousins daughter had one only once but she spent the night at the hospital for observation and sent home with medication incase she had another one. It's been two years and she hasn't had another.

My daughter had epilepsy. She has seemed to grow out if it. She used to take meds and see the neurologist regularly. We were fortunate to have mild seizures. They were calle partial complex i think. She would space out and see flashing light and spots.

I wish you both the best.

Im so sorry! My sister had a grand mal seizure when we were 5. It was random and weird. They had a hard time bringing her out of it and had no idea where it came from. She was on phenabarbatol for a few years and we are now 32 and she has never had another one. Moral of my story, he may never have another one but if he needs medication its ok mama. Praying for yall

Don't have any experience with this but I truly wish you and your son the best : ) I can't even imagine!! Praying for you!!

i don't have a child with this. but growing up, my sister had a friend who was epileptic. she had seziures, but not too often. she took meds for it. she actually grew out of it. a lot of times childhood epilepsy is grown out of from my understanding.

I am so sorry you've had to experience this. Get him to a neurologist asap!

DH

I really feel for you! My youngest son had his first grand mal (tonic clonic) seizure at 16. It was the scariest morning of my life!!
We were referred to a neurologist, who did an EEG, sent us to an imaging center for CT scan and MRI. All came back normal. Then we did a sleep deprived EEG. One night he went to bed at midnight and we woke him up about 4 am, and we just hung out for a while and went in to the office for a 9 am EEG. As soon as he started falling asleep, there was abnormal brain waves detected. He could have had another seizure there, but the neurologist determined it was important to know what caused it.
My son's seizure was caused by lack of sleep. He had gotten really run down and exhausted in his sophomore yr. He has had one more since then, about 6 months later, and now is on meds. We hope to wean him off meds by 18 or 19 and see if this goes away in adulthood.

Your neurologist will be able to tell you a lot more on Monday. Some seizures caused by hormone changes during rapid growth, some by stress, by lack of sleep, by very low blood sugar or very low heart rate....some kids have seizures caused by video or computer games. That is tested for in the EEG---the strobe light test. My teenager passed that part and was very glad.

A seizure is a very scary thing to witness! There are a lot of resources out there on seizures, but please go to the medical sites in you want more info. Do not go to the blogs that people write...they are very scary and not medically accurate.

We subscribed to Neurology Now, a free quarterly magazine that has lots of good info in it. There should be free subscription cards in the office on Monday. Gives good, solid info and ideas for tracking seizures in a log/ journal. They might even be online.

Good luck. Keep us posted!!!

Hi Allison, I know exactly how you are feeling. My three year old had a seizure in the car on evening and I could have sworn she was dying. She was admitted to the hospital for two days while under obsevation. She had a MRI, CT scan, blood work and EEG, and they were still unable to find a cause. We were given preventative meds and rescue meds and sent home. Your fear will slowly start to subside. I pray that your son will never have a another one but, I will suggest that you have a reaction plan he does. This will ease some of the fear and anxiety. hope this helps

My younger brother had seizures when he was a baby and toddler. He started on dilantin and I dont thnk he ever had another. He went for years taking the meds and finally he decided to stop. No Dr had even asked about it or ran tests to find anything more. He was told it wasnt epilepsy, but just called it a seizure disorder. We thought that was odd, but he grew up fine. He went to school, drives, married, had a child. Hes in his 40s now.
So I bet it was scary for you and I send you a ton of hugs!

I would see a neurologist as soon as possible. Emergency rooms docs are good, but they are specialist in emergency medicine. He needs to see
a neurologist.

Mama I feel for you! My 3 1/2 year old son had 3 seizures in 1 week, pretty much out of nowhere, about 2 1/2 months ago. After the first one they sent him home too after a few hours of monitoring, but we were back in a few days later, and after the second things moved a lot quicker.

If you feel to take him to the neuro by all means do , though the attending we saw said that nowadays they tend to wait till the second seizure before meds etc, though they may do an eeg or mri. A lot depends on the interval between the first and second seizure too...

I know for me the first few weeks after the seizures were awful, thinking every moment he would have the next one, but as time goes on I am able to breathe again, even leave him with others :)

I promise it will get better, and you will take your eyes off him again:) please pm me if you ever want to chat. Right when it happened someone connected me with a woman whose daughter had seizures, and it was invaluable to have someone to talk to who knew what I was going through, and it showed me that life would go on as normal someday again. But for now I wish you peace in this difficult time.

Frankly, I'm surprised they didn't tell you to follow up with your PCP/pediatrician.

I have epilepsy, and for years, had seen a neurologist regularily, starting in elementary school.

They can do an EEG (Electroencephalogram) where electrodes are placed on his scalp, and he will lie on an exam table while the electrodes pick up the different brainwaves. (Very boring, but necessary.)

Even if there isn't active seizure activity, there is a particular waveform they look for... a "spike and slope" that indicates there is epileptiform activity going on. There are ways they can stimulate epileptiform activity.. through flashing lights, hyperventilating, things like that.

For years, that was all I had... you could see the activity going on, but only during hyperventilating... I never had an active grand mal seizure, until 1995, when medication I was taking triggered one.... I had another 3 years later.

I would REALLY take him to your PCP, and ask for a referral to see a neurologist. You don't have to wait until he has another seizure. (My first grand mal seizure, the ER didn't think I had really had one.... I called my sunday school teacher (he is a local physician) and told him what happened, so he immediately called in a prescription for Dilantin, to help keep from having another. I then saw my Dr. on Monday, who set me up with an appointment with a neurologist. ) Yes, I had already had a diagnosis of Petit Mal epilepsy from childhood, but even still, I think you need to take your son to his pediatrician/PCP.

This is a cut/copy/paste of an update on a friend's son. his seizures started shortly after he turned 6, a few months ago. lasting 30-90 secs, then very sleepy/ grumpy. he had one in the McDonald's playplace, one in front of his dresser...3 in a week. the ER said there was nothing they could do, so they got him in to a neuro very quickly b/c there was a cancellation. all tests came back normal. they put him on a med that made him very volitile until it was in his system, about a week of sceaming/ biting/ thrashing. then that stopped. here is the email:

Here's an update on what's going on with Matthew. His seizures haven't stopped and have gotten more frequent. We went to the dr. this last monday and he got a new medicine. He's now taking 2 medicines. We go back to the dr. on the 18th. [july18th].

These are the type of seizures that matthew is having now. The only real worry is if he falls and gets severely hurt. These can't cause brain damage or any other damage except he can get hurt if he lands on something or falls off of something.

TONIC-CLONIC SEIZURES

What are they like?
Here's a typical story from a parent's view: "These seizures frighten me. They only last a minute or two but it seems like an eternity. I can often tell Heather's going to have one because she acts cranky and out of sorts. It begins with an unnatural shriek. Then she falls, and every muscle seems to be activated. Her teeth clench. She's pale, and later she turns slightly bluish. Shortly after she falls, her arms and upper body start to jerk, while her legs remain more or less stiff. This is the longest part of the seizure. Finally it stops and she falls into a deep sleep."

How long do they last?
Generally, 1 to 3 minutes. A tonic-clonic seizure that lasts longer than 5 minutes probably calls for medical help. A seizure that lasts more than 30 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment.

Tell me more
This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal." As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.

Who gets them?
They affect both children and adults.

What's the outlook?
For children who have had a single tonic-clonic seizure, the risk that they will have more seizures depends on many factors. Some children will outgrow their epilepsy. Often, tonic-clonic seizures can be controlled by seizure medicines. Many patients who are seizure-free for a year or two while taking seizure medicine will stay seizure-free if the medicine is gradually stopped. The risk that an individual will have more seizures depends on factors such as whether his or her EEG shows any epilepsy waves, or whether the doctor finds any abnormalities on a neurological exam. Among children with no epilepsy waves and a normal exam, about 70% of those who have had tonic-clonic seizures will stay seizure-free without medication. The comparable number is less than 30% for children with epilepsy waves and an abnormal exam. All these figures are more favorable than those for partial seizures.

How is the diagnosis made?
The typical appearance of a tonic-clonic seizure is usually easy to recognize. The doctor will want a detailed description of the seizures. An EEG and other tests may help to confirm the diagnosis or suggest a cause.

Here is a great site if anyone wants to know more about epilepsy and seizures. It's very informative and easy to understand.

http://www.epilepsy.com/101/101_EPILEPSY

Good luck with your little one. You are not alone!!

MIne had a seizure in church last year. It was thankfully the only one she has had. She is 13. .
We went ot thepediatrician, then he gave us a referral to a neurologist
We saw a neurologist and had an EEG, the whole body head scan where it looks like a earthquake on paper, but she didn't show signs of anything abnormal.
They took all sorts of blood and ran a bunch of tests.
I have been told that ours was possibly because of the Gardisal shot.
I watch her closely, we make sure she is always well fed and hydrated.
I keep things for her in the car and my purse, gummies and such.
It took a while for me to calm down and not be so vigilant, but so far nothing else.
I still check on her quite a bit. Mine is homeschooled but her Girl Scout leader and Youth leader both are aware of what happened, they were both trying to help her when she was in the middle of it.
It could be that this is the only one he will have. Try not to show him the fear you are feeling. It will make him feel like something is wrong.
I still freak when my daughter gets woozy. I am always afraid for another one.
We all have this sense when it comes to DD #2, noone says anything but if she looks pale or starts acting "off" we are more hypersensitive to what her needs might be.
I am praying for this to be the only one he ever has, they are very scary.