Epilepsy Foundation

We are having a problem with our son.  It appears he is having seizures at night only.  The last month he has missed 1 day a week average needing to stay home and sleep most of the day.  His teachers are not seeing anything during the day and his grades don't seem to be suffering.  I don't know if I should be worring about this or not.  I have called the neuro twice, taken him to the pedi once and called the pedi once.  The neuro says take him to the pedi and the pedi says call the neuro.  The staying home and sleeping seems to get him by for a few more days but then he needs another day to sleep.  With no other problems presenting should I be content and not worry or make yet another call to the neuro.  Any comments would be appreciated.  Thanks

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When he needs to sleep, do you try to wake him? Is he hard to wake? What is he like on those days? Disoriented? My son has primarily nocturnal seizures. He will have a difficult time following simple directions. he can be moodier, if he does school work it is much sloppier, he will often have more trouble passing a test if he has a seizure the previous night. (he might pass it usually, but not on those days). He will sleep post ictally.

He may have trouble with coordination, his speech may be a bit slurred. He will notice the next day that he is MUCH clearer than the day right after a seizure, but he is not always as aware the morning of a seizure. (sometimes he will tell us he is not sure unless it was a BIG seizure). We do not always hear his seizure.

You may ask the neurologist for a Video EEG since your son seems to be having these so frequently
I started having seizures at 3 and wasn't diagnosed until my first grand mal at 14. What symptoms is he showing? If u believe they're seizures, I'd have him checked. I was a straight A student, great I sports and lived a fairly normal childhood with seizures. Even though, do I wish I could've been diagnosed sooner?  Yes. Even though my first seizuremalwaysmcpmes at night, they come in clusters, so I may have them 3-5 days at a time - now. 
As a kid I could just have one, wake up and lead a normal day. But I always knew I was different than others, I just didn't know what it was.  You might want to ask him if ever has any "weird" feelings, and see if he can describe them to u. I've always had auras, which tells me the seizures are coming. 
My son is only 2 but he sleeps a a lot during the day. The only time during the day my son has had a seizure is when he first wakes up (and that only happened twice). In fact, the reason we began seeing neuro (the appt was made before we ever witnessed a seizure) was because of excessive daytime sleepiness. All my sons seizures though are believed to be only in his sleep. I would get him into his neuro personally just from our experience and what we are dealing with it sounds like my son. Good Luck!
I say its time to get a new nuero or at least suggest a sleep study having doctors that don't listen are not good for you or your son.
Thank you so much for the replies. We are increasing his night dose of meds to see if that helps. If not, after a couple of weeks the neuro is suggesting more testing. Hopefully one of these will get us some results.
My sons med dosage is 1ml and 1.5ml at night. His doctor has him taking the larger dose at night so that it will hopefully carry through his whole sleep cycle and we prevent any seizures so I hope that works for you guys too.


LAPods said:
Thank you so much for the replies. We are increasing his night dose of meds to see if that helps. If not, after a couple of weeks the neuro is suggesting more testing. Hopefully one of these will get us some results.
Hello-

I had nocturnal seizures as a child, so I understand your dilemma. He is probably sleep-deprived due to the disruptions the seizures cause to his sleep cycle He may need to have an ambulatory EEG done to rule out uncontrolled seizure activity. Also, he may have additional sleep issues going on, so a sleep study may be indicated. I have Upper Airway Resistance Syndrome, Narcolepsy, and Restless Leg Syndrome that went undiagnosed until I was an adult. An EEG will not pick up on these disorders.

The fatigue is real and can be totally disabling and exhausting at times. I think you are doing the right thing by letting him stay home occasionally. However, I know I did have to be pushed to go to school on some days, even when I was tired. About halfway through the day, it would ease up slightly. If the fatigue is affecting his schoolwork, he may need to be placed on a 504 plan or an IEP. If it is not affecting the quality of his work, I would just keep doing what you're doing.
Night szs and those especially happening during the early morning period, when their body's are going thru the light sleep, wake cycle is a common time for szs.

I had to laugh when you said you call the neuro, they say call the ped, and then you call the ped and they say call the neuro - I get that all the time too! My daughter is nonverbal, so a lot of time when the ped's office asks what's wrong, I have to say, I'm not sure if anything is, but the neuro is going to want to make sure she is NOT sick, so we need to see you first : D Fortunately her ped and the others in the practice are very caring and understanding, and want to make sure there is no problem, so it's not looked down upon.

Hope the increase in med helps.

Good luck and hugs.....

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