Any neurologists or neuro-psychologists on board?

Parent Cafe
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<p>The parents of the class of 2012 sent me here in my desperation to find out info about my youngest son - age 16 - and on the Aspie scale, but toward the “normal” side rather than the “autistic” side. His Aspie traits (social) have been improving over the past few years for what that’s worth.</p>

<p>About 1 month ago he told us he was running and fell and hit his head. I heard about it three days after the fact when he told me his headaches were gone. I chided him about not telling us sooner, then forgot about it.</p>

<p>Four days after that he felt his first “twitch” - a movement very akin to someone trying to twitch to wake themselves up. Usually it’s just his head and shoulders, but it can go to arms and legs - always starting from the top. It’s there, and done. The frequency of these vary, but on average I’d say there were one or two an hour. We didn’t really pay attention to them nor did he call them to our attention.</p>

<p>Five days later he left for France on a class trip. After five days in France we received a call from his French teacher telling us he was in the hall of their hotel, on the floor and really twitching/trembling and they couldn’t get them to stop, but there were no other symptoms (fever, vomiting, eyes rolling back, etc). Did she want us to take him to the hospital? Thinking it was brain overload for an Aspie we said to watch him for an hour or so and if any physical traits were seen, then yes, otherwise, see if his brain could “restart.” This, I now call Episode 1. It stopped and the trip went on with more of the other twitching mentioned above, but no more episodes.</p>

<p>We chalked it up to overload and life went on as usual - he returned from France with great pictures, had Easter with us, then restarted school. </p>

<p>A week ago Wednesday night he was at our church youth group and a leader noticed him going into an empty dark room. After a minute or two she followed him wondering what he was doing in there. She saw Episode 2 - same thing - with what she called violent convulsions. She called 911 and we met them at the ER. By the time we saw him he was fine. The ER Dr never saw the convulsions as the EMTs gave him something to stop them. They did a CAT scan (normal), blood tests (all normal except for one thing muscles produce that was high, but not super abnormal), and urine test (normal). Nothing was out of line really. They sent us home with directions to follow up with our family Dr (that visit is tomorrow) and see about a sleep deprived EEG.</p>

<p>Life resumed normal with me wondering what was going on - real - faked (all adults who saw it said no) - psychological?</p>

<p>This morning in the car on the way to school he non-nonchalantly mentioned he must have been tired last night because he heard voices in his head before going to bed… twice. Once it was his dad calling him by a nickname people at school use. The other time it was an unknown voice telling him, “The King is dead.” Neither were anything related to anything that had happened recently. He knows he wasn’t asleep as he hadn’t gone to bed yet.</p>

<p>Then Episode 3 happened at school - 8 days after Episode 2 - first middle of the day episode. Here’s what I relayed on the 2012 thread. I work at the school where this happened.</p>

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<p>I need to catch up on this thread later, but right now I just want to make a desperate appeal for a pm if ANYONE has had (or knows about) what I’m about to relate. Literally, right after I wrote my last post on this thread I was called to the nurse as youngest was having another episode. Seeing it in person has really vamped up my stress and concern and scared the wits out of me. After this thread I’ll try to keep it off here so as not to interfere with the good college stuff being shared…</p>

<p>The nurse said she’s never seen anything like it in her whole experience (she’s not super young) of dealing with epilepsy, panic attacks, tourettes, and similar. She was ready to call 911 - except the ER doctor told us not to unless he had vital signs that were off - those were all normal (pulse in the 90’s but normal - oxygen at 100%). Blood sugar was ok. Everything was ok. He’d been tested for drugs at the ER - nothing - and he’s not on any non prescription meds of any sort either.</p>

<p>He can feel these coming on. He said yesterday he felt one coming on in French class, but was able to suppress it. His French teacher said she saw a lot of twitching. The twitching is sometimes an upper body thing or a whole body thing - like someone would do when they are trying to wake up or shake something off. They’re quick, then done and he gets about 1 or 2 an hour by my best guesstimate. Anyway, yesterday he said he was able to suppress a full episode.</p>

<p>Today he said he felt one coming on in French and would be able to do the same thing, but it kept getting worse. By Chemistry (next class) he asked to go to the nurse and was escorted down there (roughly 1:35). By the time I got there he was having whole body convulsions that looked like he had flat lined and was being shocked (Clear!). Sometimes he’d stay straight"ish" and other times he convulse into a fetal position, then back. It looked incredibly painful and he was sweaty, but he was awake the whole time and said it wasn’t painful - just had some tingling in his fingers at times. He also hurt his ankle a time or two from the motion. Sometimes these were non-stop and sometimes there were a few seconds between them. The convulsions always went from the head down. There’s no way they were faked. He didn’t lose muscle control (bladder, etc) and could respond to questions. He said he could feel them coming on, then they would happen. He tried to stop them, but couldn’t. Efforts by both the nurse and I to redirect his brain by conversation didn’t seem to have an effect, though he would still answer our questions as he could.</p>

<p>Around 2:20 they got less. By 2:27 he stood up - had two of the “normal” twitches, and then said it was over. I’ve seen a few normal twitches since then, but he tells me not to worry. Otherwise, he seems normal (now).</p>

<p>I asked him more about hitting his head a month ago and he updated to tell me he didn’t have “a” continual headache for 3 days afterward, but had headaches and felt lightheaded at times during that time. He also says he feels lightheaded right before these episodes happen (now 3 of them about one week apart). This was his first one during the day and there was no test or otherwise stressful event after it. He did take the PLAN test this morning, but seemed fine and felt the test was easy.</p>

<p>The voices he’s poo-pooing now. I don’t know if it’s related or not. He doesn’t say they didn’t happen. He just says he doesn’t think they’re related. He thinks the headaches might be, but not the fall. However, he’s 16. I’m just relaying anything.</p>

<p>I had the nurse call our doctor’s office and she spoke with a nurse there putting her observations into his medical record. I did not have a cell phone on me to record it on video, but I’m going to try to keep something with me at all times now so I can if/when it happens again.</p>

<p>In the meantime, anybody? Dr? Parent? Someone who saw something maybe related on TV? My brain is on overload right now and I’d love to hear something - but make it via a pm so as not to tie up this thread. I’m grasping for info. The nurse didn’t feel it was epilepsy of any sort (but she emphasized not a diagnosis, just an observation based upon her experiences).</p>

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<p>Since then, he’s been normal and I’ve only seen a couple of twitches. Tomorrow is our family Dr visit, but I no longer really want to wait 3 months to see a specialist (originally what guesstimate we were given). Any suggestions in the meantime? Anyone I should ask for? We live in PA and most people referred to specialists around us are sent to Hershey or Johns Hopkins (I’ve been to neither as we’ve never had need.).</p>

<p>This kid is on no meds. We don’t do artificial sweeteners on a regular basis (can’t count what he eats in school). He rarely drinks caffeine of any sort - usually coffee when he has it, but not regular drinking it as we don’t have it at home. No energy drinks. He’s 20 on the BMI index (just got that from school while he was in France), so not overweight.</p>

<p>The only possible “issue” is he’s on the Aspie scale, but not super far into it as some kids are. He’s social (albeit, somewhat clueless, but learns social skills well when taught as he WANTS to be social/normal).</p>

<p>In general, I’ve had epileptic seizures in my classroom before. I’ve had Tourette’s kids. I’ve had panic attack kids (anxiety issues). I’ve even had a cardiac case (talk about scary)! Our school nurse has seen all of the above and more. This doesn’t match any in my experience or hers. Tourette’s comes closest with the twitching, but nowhere near the scale when the episode hits. Then, after an hour or so he’s back to “normal.” He’s not sleepy. His speech isn’t slurred. It’s unreal - and definitely not faked. Describing it I’d say if I didn’t know better his head was being shocked by a high voltage charge and his body was reacting to the shock.</p>

<p>Any thoughts are welcome - esp if you’ve dealt with something similar. Honestly, until I saw today’s episode I had no idea of the scale of what he’s dealing with and I feel guilty not having the French teacher take him to the hospital with Episode 1, but at the time, it truly seemed like an Aspie issue (and he’d had one of those before at school). This is not that. It might be an Aspie issue, but not a “can’t cope with it all” Aspie issue.</p>

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<p>With a head injury like that, he should have had an MRI or ct scan.
I had both after I bonked my head a few years ago.</p>

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<p>Yikes- this must be very nerve wracking. I have found some valuable info on the forum [Health</a> Board : Your Online Health Community!](<a href=“http://www.healthboard.com%5DHealth”>http://www.healthboard.com)
There is a blue banner a couple inches down and i think it is “find a forum” that you should click on and then maybe one of the nervous system links. Maybe someone there can offer insight. Good luck</p>

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<p>The fall could have done something. It sounds like he had a minor concussion (from what was put down) and then recovered from it. I found this, though,:</p>

<p>[Post-traumatic</a> seizure - Wikipedia, the free encyclopedia](<a href=“http://en.wikipedia.org/wiki/Post-traumatic_seizures]Post-traumatic”>Post-traumatic seizure - Wikipedia)</p>

<p>I know you’ve probably ruled them out, however:</p>

<p>“Early PTS occur at least once in about 4 or 5% of people hospitalized with TBI, and late PTS occur at some point in 5% of them.[9] Of the seizures that occur within the first week of trauma, about half occur within the first 24 hours.[11] In children, early seizures are more likely to occur within an hour and a day of injury than in adults.[12] Of the seizures that occur within the first four weeks of head trauma, about 10% occur after the first week.[5] Late seizures occur at the highest rate in the first few weeks after injury.[7] About 40% of late seizures start within six months of injury, and 50% start within a year.[11]”</p>

<p>It is possible that he has been experiencing this. </p>

<p>I would also like to note that medical conditions come in all shapes and sizes, just because one person may be textbook, another may not be. What he seems to be going though reminds me of it (i’ve seen people have siezures and i’ve also seen animals have them too).</p>

<p>The next time he starts to get that feeling, tape it with a camera, that way you have more to show the doctor.</p>

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<p>Just a thought…look up cataplexy. It’s usually associated with narcolepsy and so is hearing voices as you fall alseep. During a cataplexy attack, you are awake and aware what’s going on but can’t move for a minute or two. Very similar to a seizure. My son has narcolepsy (without cataplexy) so I’ve read a lot about it. Onset is during the teenage years. It’s diagnosed with a sleep study.</p>

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<p>You asked for a name and mentioned Johns Hopkins. Dr. Henry Brem is the chief of neurosurgery at JH, and I believe the neurology and neurosurgery depts. are combined. Brem or someone on his staff would refer you to the appropriate person.</p>

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<p>needs an EEG…possible video monitored … a seizure is more function of the brain, not necessarily structure but agree mri would be good…have him referred to a neurologist</p>

<p>a normal eeg does not eliminate seizures which is why a video monitored prolonged eeg would be beneficial…if he has an “attack” while wired up…if the brain waves change that would be indicative of seizures, whereas if the brain waves remain normal, they can look for other causes or they may possibly be non-epileptic seizures (more of a stress reaction)</p>

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<p>The football community is ramping up its research/appreciation of head injury. Anyone remember what they’re calling concussion/head injury reaction? Lots of research underway - ppl talking about their experience more and more. Also, did the fall initiate the seizures or whatever they are or was the fall perhaps the first instance of one? Does your son have any insight into how he was feeling right before the fall?</p>

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<p>Hugcheck- that is an interesting thought…</p>

<p>Creekland - it possible that he was seizing and then fell & hit his head?</p>

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<p>I was wondering the same thing. Perhaps the fall was a result of a seizure rather than the other way around.</p>

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<p>Hopefully your family doc is more proactive than the er doc. If you don’t want to wait for a specialist bring him to the er at Hopkins (my guess is that the er you took him to was not Hopkins) - which is what you should have done a month ago.</p>

<p>If this post scares you, it is meant to. It is ESSENTIAL for you to find out what’s happening and address it. Brains are fragile.</p>

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<p>These are all good questions. Is your son a reliable historian? Can he accurately report the events surrounding his running and hitting his head? Were there any witnesses? There is a report that as many as 25% of kids on the spectrum have comorbid seizure disorders [Autism</a>, PDD-NOS & Asperger’s fact sheets | Seizures and epilepsy, co-morbid disorders associated with Autism Spectrum Disorders](<a href=“http://autism-help.org/comorbid-seizures-autism.htm]Autism”>Autism, PDD-NOS & Asperger's fact sheets | Seizures and epilepsy, co-morbid disorders associated with Autism Spectrum Disorders) An EEG will help differentiate functional from real seizures. Also, the auditory hallucinations could have been seizure-related as well. Keep us posted.</p>

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<p>Thanks all. I’ll fully admit to not taking this seriously enough back when episode 1 happened. My mind was full of things I’ve seen at school (not life threatening) and a “pull back from society” Aspie issue he’d had a year ago. For whatever reason, I assumed this was more of the same when I got the call from France - and since he recovered - we were thinking that was it. His French teacher is new to our school and had never seen an epileptic seizure (or any type of seizure).</p>

<p>Episode 2 should have clued me in, but this was his trip to the ER and we were told by the ER Dr (who didn’t see the convulsions at all) that nothing was life threatening and all tests came back normal (including prolactin and electrolytes), so to get to the bottom of it, but I fully suspect he was thinking psychological rather than physical too.</p>

<p>Now I’ve had my Road to Damascus “Saw the light” experience and it scared the ___ out of me (and the school nurse). It’s not at all what we were thinking or what either of us have ever seen from epilepsy or panic attacks/anxiety (and she’s seen far more than I have). We checked during the rare seconds between convulsions to see if he was still alive (all vitals were still normal).</p>

<p>Back to the fall. I don’t know. Being an Aspie one has to specifically ask, so I will. He was running along our rural road, so could have tripped on something, but it would be unusual to do so. He only told us about it 3 days after it happened when he also related that he no longer had a headache from it. He had told a teacher at school (who told him to tell me). She is very much regretting that she didn’t tell me herself (different departments - we don’t see each other often), but none of us knew the scope at that time and being an Aspie, he was never conveying urgency as “normal” kids do (body language, voice, etc). Episode 1 hadn’t even happened yet, nor the twitches.</p>

<p>I looked at the last link (Aspie-seizure) and so much doesn’t match. He’s totally conscious and knows what is going on from start to finish. They last 40 min - 1 hour. He’s perfectly normal when they are done (aside from “usual” twitching). He knows when they are coming and when they are done in a similar manner that one knows when they are going to puke - then it happens - then you feel better.</p>

<p>As adults talking about things in hindsight, we don’t think he’s doing these for attention. With episode 2 he was trying to get away from people to be on his own and would have succeeded had a youth leader not been watching him go into the room and check on him a few minutes later when he didn’t return. He’s embarrassed about these and wishes we didn’t have to tell anyone. He’s annoyed that he can’t drive until we figured it out - yet still had episode 3. Teachers (and staff) at school have orders to not let him go places by himself, esp if he looks like he’s getting ready to have an episode. We’re afraid that he would try to go into a bathroom rather than to the nurse.</p>

<p>Less than 2 hours to our first Dr appt and I hope to have a referral soon to a specialist. If not, I’m thinking of spending next Wed - Fri (the time I’m most worried about due to the periodic happenings before) near Hershey, but if it were to happen, I have no idea how to get him into a car. At least we’d be closer. Maybe I could have him doing his studies in the waiting room. </p>

<p>Is there any chance something ??? is building up in his brain to make these so periodic, or is that purely coincidental? If one happens at school or home we’re going to try to catch it on film at the very least - hopefully without it making it on Facebook or YouTube.</p>

<p>Having heard descriptions before, I fully understand how difficult it is to grasp what is happening from mere words. I went off my experiences and this is different. As soon as I actually saw it I was floored - and wondered why the teacher in France called us rather than medical personnel. I’d have called 911 had we not been in the ER a week earlier and having a nurse to check vitals present. I’m hoping specialists have a greater set of experiences to where this one “fits” and how to fix it.</p>

<p>ANY thoughts are welcome. I fully admit to not having been serious enough about this in the past and want to avoid it for the future. I’m a math/physics person so am not up on medical knowledge. I’m working on improving that, but those with experience know more - I’ll glean.</p>

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<p>Sorry to hear this and best of wishes. I strongly suggest taping the next episode to help the docs figure it out.</p>

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<p>If he was my kid I’d get him seen by a good neurologist ASAP. Hopefully you will get that referral today. Best to you!</p>

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<p>Creekland,</p>

<p>Take a look at this site, maybe it will offer insight and resources for you. Not just this section, but other sections of the site as well. </p>

<p>[Tremor</a> Fact Sheet: National Institute of Neurological Disorders and Stroke (NINDS)](<a href=“http://www.ninds.nih.gov/disorders/tremor/detail_tremor.htm]Tremor”>http://www.ninds.nih.gov/disorders/tremor/detail_tremor.htm)</p>

<p>good luck at your appointment today.</p>

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<p>IF these last 40-60 minutes and he is conscious and alert and can respond, and has not had any eneuresis or encopresis, its doesnt sound like classic seizure symptomatology. Sounds a bit more, perhaps, like tics that then generalize. Look forward to hearing back.</p>

<p>Please don’t be offended by this, but there was a somewhat similar issue (though no prolonged dystonic jerking, I dont think) with girls in upstate NY having unusual tic-like symptoms. [Twitching</a> disorder affects 12 girls at New York high school - CNN.com](<a href=“http://www.cnn.com/2012/01/19/health/new-york-students-illness/index.html]Twitching”>http://www.cnn.com/2012/01/19/health/new-york-students-illness/index.html)</p>

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<p>There are types of migraines that present with very atypical symptoms and not all types include headache. My S was diagnosed with a complicated migraine (similar to the one experienced on-air by reporter Serene Branson), after being rushed to the ER with symptoms of a stroke. He underwent a battery of neurological testing to make sure other possibilities were ruled out. Please persist in getting testing and answers, this can be serious.</p>

<p>I suggest keeping a diary of all episodes and everything Your S ate, drank and did on those days. It could provide helpful info the doctors. Environmental factors can trigger neurological reactions. Good luck.</p>

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<p>We’re back and our family doctor is curious, but of course, no real answers other than it’s not typical of seizures.</p>

<p>An EEG is scheduled for next Wednesday in York, PA. We’re waiting on the pediatric neurologist to schedule an appt (Wellspan of York).</p>

<p>I’m ok with next Wednesday actually. If there is any sort of build up, then Wednesday would be closer to the tipping point. It’s a regular EEG and he’s supposed to get half his normal sleep. Should I have him sleep even less than that?</p>

<p>If he has one between now and then we will definitely try to get it recorded.</p>

<p>I also talked a little more with our nurse. She said when he came to the nurses office he was visibly shaking all over akin to shivering. Then the twitches came and got more violent and more often. It seemed to build up, peak, then wane, then done. We’re putting it at 45 minutes if you don’t count when he knew it was coming. All but a few minutes had the violent types of spasms. From the tremors, Dystonic tremor, matches the best, but it did not go away with touching (the nurse tried multiple times). It also didn’t go away or lessen when we tried to distract him by talking about other things - though he would answer totally off topic questions (short answers).</p>

<p>It is not at all like the twitching disorder with the girls. Stress doesn’t appear to set it off and there’s definitely no stuttering.</p>

<p>The fall came first. He told me he was running on our road and decided to see if he could do a dead stop on some gravel. It didn’t work. His feet slid out from under him and he hit the asphalt. The headaches started after the fall.</p>

<p>NOW, I also learned he feels he’s blacked out twice since then - once at track practice when he threw a javelin and then fell. He said he didn’t come to until he was found by other students, but doesn’t feel it was a long time. The other was when he went to get up from bed and fell back down. Oh, and he says he blacked out with the first episode in France and woke up during it. I have yet to confirm that (if possible) with the French teacher. I don’t think I can confirm it. Only he and his roommate were there at the time (according to his story) and his roommate went into the room. He couldn’t make it. His roommate came out later and found him in the hall and got the French teacher later. In all cases he felt lightheaded first.</p>

<p>Today the “normal” twitch level is low. I’ll see how that changes as we head toward next week. The whole school staff has now been informed and will be watching - just in case. We’re still trying to actively keep it from the other students except those he’s really close to.</p>

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<p>xoxo Creekland.</p>