Question: My little boy had a strange episode last night that could have been a nocturnal seizure or could have been a nightmare. It is just the two of us and he sleep with me, although he does have his own bed and bedroom for whenever he is ready to sleep on his own. At any rate, he was just wildly tossing and turning last night. At first, I thought that he was having difficulty sleeping, but then he began whimpering. I tried to comfort him for what I believed to be a nightmare, but then realized his eyes were open. He was making some repetitive movements with his arms and then repeatedly kicking one leg in a funny manner. I would ask him questions and he would react to my voice, but would not reply. it lasted about 5-minutes and then he said that he was thirsty and would like a glass of milk. He used to have these episodes on rare occasions as a baby, usually when he was very tired. We did see a neurologist at the time who didn't want to put him through an EEC as a 2-year old since the episodes were rare and did not appear to be long in duration or repetitive throughout the night. He said that if he had to bet, then he would choose night terrors over frontal lobe epilepsy. He has tossed and turned a few nights and perhaps I have missed prior episodes, but to my knowledge he has not had any further episodes between the time that he was about 2-years old and now. The episode occurred about 3 hours after we went to sleep. Should I request another visit with the neurologist or simply take a wait-and-watch approach to see if the episode occurs again?

Correction, my little boy is 5-years. There is not enough coffee in the world this morning. It has been approximately 3-years since there have been any obvious episodes.

I do apologize. There is one more detail that I thought that I would mention. My little boy was talking to me one night and said that sometimes he doesn't feel like he is "alive." He went on to say that sometimes he feel like he was never born. He asked me what one felt like when one isn't alive and then said that his "...body just felt..." and then didn't go on to finish the description because he said that he didn't know how to describe it. Understandably, I was and am a bit alarmed to be having such a discussion with a 5-year old, although he is very intelligent and quite a deep thinker. However, now I am wondering if he could possibly be describing feelings of petit mal seizures that go unrecognized by us. I am sure that you have no way of knowing either, but I just thought that I would mention the discussion in case it is relevant.

They are extremely rare..more than a month apart. I think I have noticed possibly two in the past three years. They always occur at night when we are sleeping -- usually about 2 hours after bed, but this one occurred about 3-hours after we went to bed. They typically occur when he is extremely tired. Last night, he was very tired, but very strongly resisted bed time.

They have never been associated with fever. When this first began, I thought that it sounded a lot like frontal lobe epilepsy. However, unlike the descriptions of frontal lobe epilepsy, he only has one episode during the night, goes quickly back to sleep and then sleeps calmly throughout the night.

His eye never roll back in his head, but look straight forward.

His paternal grandmother has seizures which she developed in her fifties

I will also mention that he does have some cafe au lait spots. 5-6 are larger than 6 mm, but only three appear typical. He has no other manifestations of NF. Neither his dad nor I have NF.

I forgot, there is no urination after the episode.

We discussed it with his pediatrician, who admitted that she was not terribly familiar with NF. She has one patient who has an obvious and inherited case. But my little boy is very intelligent (as commented on by the physician) and extremely coordinated. He doesn't have any of the other manifestations such as freckling in the axillary or groin region. I do realize that these often appear in adolescence. She did agree that two of the CALs, which look like very faint splashes, are atypical. I have an appointment on May 11th with the neurologist, so hopefully we can have that addressed as well.

Since these episodes are extremely rare in occurrence, and occur at night, would you expect them to resolve as he gets older if they are seizures? Would medication be necessary? I know that the medication has quite a few side effects.

I don't see an option for images. Could you tell me how to do it?

I teach entry-level anatomy and physiology at a college. I always joke about the fact that I know just enough to become alarmed, but never enough to find peace-of-mind. This is the article by JAMA that I found on typical cafe au lait spots versus atypical. Our pediatrician asked to have a copy of it : http://archderm.jamanetwork.com/article.aspx?articleid=712161

My little boy has two or possible three spots that are typical or classic. He has two that definitely appear to be atypical and, unless he has been out in the sun, are almost not visible at all. He is very fair-skinned, so we have been conscientious about protecting him from too much sun exposure, but I do wonder if more would become apparent if we weren't so aware of sun damage and skin cancer risks.

There are also two new lesions on his back. They are very small, maybe 2 mm. They first appeared as macules, but are now slightly raised. Although it has been discounted by other physicians as a risk concern, his paternal grandmother (the one who suffered from seizures) thought for a period of time that she might have NF. She never went through with the testing. I realize that 50% of cases are autosomal dominant, but my husband does not have any apparent symptoms.