Trying to deal with a child with Epilepsy

[WorriedParent]

Dear all,
My son has had three small seizures today and it has left my wife and I in a bit of a panic.

Luke started having seizures three years ago. He almost always has them while he is sleeping and he used to just go still. We noticed that he wasn't breathing and thought it was some form of sleep apnea. We even ended up in the emergency room and then spent three days in a hospital in Canada without anyone mentioning epilepsy. It wasn't until we saw a neurologist in Miami that we finally had the correct diagnose.

Luke is taking trileptal and after it his dose was increased in early August, he has been seizure free until today. Around 5:00 this morning he had his first seizure. He was sleeping with us and started shaking. It lasted for around a minute and he didn’t really wake up. We noticed that he had a slight fever, but let him go back to sleep. He woke up again around 6:00 and we gave him some liquid Tylenol to help him sleep. Around 7:00 he had a second seizure similar to the first. We kept him home from school and he seemed to be tired and a bit out of it. At 3:00 today he had this third seizure, similar to the first one, but lasting two minutes instead of one.

We have diastat and are ready to give it to him if they reoccur.

Quite frankly, part of our problem is that we live overseas (Dominican Republic) and our neurologist is very hard to reach. When things go wrong, like they did today, we get very scared.

One of our worries is that it really seems like Luke is not breathing during his attacks. Sometimes he turns quite purple. Is this a normal part of a seizure? My wife used to give him mouth-to-mouth when his seizures first started, but we stopped when we realized that he would come out on his own.

Are we doing the right thing?

Worried Parents in Santo Domingo

[Bernard]

Hi WP, welcome to the forum.

I think it fairly common for people to stop breathing for short periods of time during a tonic clonic seizure. It might also happen with complex partial seizures.

Diastat has never worked for my wife. Ativan has almost always done the trick in the ER though.

I hope Luke feels better soon! Sometimes, when people get sick and/or their immune system is depressed, they are more susceptible to having a seizure.

[skillefer]

Hi Worried Parents! Welcome to CWE. It's actually fairly common for a person having grandmals (tonic clonic) seizures to stop breathing for a little bit. After mine, my lips are pretty purple. My husband was worried the first time he saw it...but he's gotten used to it and responds calmly now. I hope Luke feels better soon. It's actually not that unusual for an epileptic's seizure threshold to lower when we have infections or fevers. So don't feel too disconcerted about what happened yesterday. If anything, call his neurologist if you can....and see if there's anything he suggests that you do...like giving an extra dose of medication when he's sick.

[drarvindr]

It is fairly common to stop breathing for short periods of time but if it persists , keep up the CPR and get him to an ER . he may need intubation. The ABCs of emergency health care are Airway , Breathing and Circulation. Check his pulse during the attacks. keep his neck slightly flexed and push his jaw towards you ( you must know this already if you took CPR classes. it's called a jaw thrust and helps keep the airway patent.)try to prevent him from biting his tongue. Ask your neurologist for any meds you should give him in an emergency. Ativan works best ( lorazepam) but i don't know if you cn get it outside a hospital setting. i have frisium tabs on me wherever i go( clobazam) . it's supposed to work the same way. thankfully i've never had to find out. hope he gets better soon