<p>Often the doc can call the specialist to get the earliest possible appointment, stressing urgency. Has the pediatrician done so in this case so that your S will see the specialist after the testing so it can be properly interpreted and your S can get appropriate treatment? I’d be concerned he could hurt himself badly during these episodes, especially if he’s blacking out & already is hurting his foot from them.</p>
<p>Best of luck!</p>
<p>The neurologist is Monday - before the EEG. The Dr will interpret the results later when he gets them. I’m feeling a bit better knowing things are sooner, but I ALMOST wish he’d have just one more episode to get it on tape - or then, while he’s there. But just almost. It was way too scary to totally wish for that. In reality, I hope it can get fixed without another episode.</p>
<p>Will be thinking about your son on Monday and Wednesday. Hope for answers and a plan to return to normal. {{Hugs}}</p>
<p>Is it possible that in his fall he dislocated his occiput on his atlas? The skull sits on little points of the first vetebra of the neck and it can actually become displaced as in whiplash. This can cause a narrowing of the opening for the spinal chord. Some chiropractors look into this. There might be one in your area (after all the neurological work ups with regular medical system). I know this because I had it! Had to have my head put on straight, lol. Fixed a long standing neck problem on one side. xoxo to you!</p>
<p>Here is a thought, have you ruled out anything psychological? (just a suggestion)</p>
<p>My mother will have anxiety attacks sometimes where her body shuts down and she shakes so bad. Then, sometimes it will either go away on its own or she’ll have to take something.</p>
<p>As an aspie, I know what stress and other such things can do. Just a thought.</p>
<p>Creekland, I’m a lurker on the 2012 thread, because I have a 2013er and I’m torturing myself. ;-)</p>
<p>In all seriousness, I think what your son (and consequently, you) are going through is awfully scary. I don’t have advice but will definitely say prayers for him and for you.</p>
<p>Please keep us posted. I definitely want to follow his story.</p>
<p>creekland,
I STRONGLY suggest you print out your posts here and give them to the Neurologist, so he has something to read after he also hears your report. Going to a Dr, especially when you are scared, can nerve racking, and no one wants to forget to mention something that may be end up being important. Having a written record [or history] of what has happened to your DS , which essentially is what you already have produced here on CC, can make it easier and faster for a Dr to make a diagnosis.</p>
<p>
</p>
<p>Nothing has been ruled out except typical seizures (if they are seizures, they aren’t typical).</p>
<p>Someone else suggested it could possibly be a parasite he picked up elsewhere… Maybe, he was in Jamaica this past summer. I’ll have to ask if they did fresh water swimming. I know he ate locally prepared foods (along with other kids and adults there). It’s a longshot, of course, but… I’m not ruling anything out. I’m keeping ideas and pondering them. I’ll remember to mention the Jamaica thing and I might go back through these notes to see if we missed anything when we related it all to the doctor today. He was typing a bit. I had the school nurse call in her observations yesterday during episode 3. My thought was, “the fresher the better” and from a medical person rather than via my memory of what she said.</p>
<p>If I understand our doctor correctly, they’re going to try to see if it’s something physical first, if not, then head psychological. It’s just awfully coincidental with it starting shortly after the fall IMO.</p>
<p>I know someone who had non-epileptic psychogenic seizures. The body twitches and looks like it is having a seizure but there is no seizure activity in the brain. It is psychological in nature but NOT under the person’s control. UCLA diagnosed this person. They have a special unit where these patients have cameras on them at all times and are hooked up to EEG machines as all times: when the seizures happen they can record them and analyze the data.</p>
<p>I’m sorry I can’t be of help, but I urge you to go to the doctor ASAP. I don’t want to scare you, but I had a friend with an aspie son who son began having seizures in his teens. He passed away last year in his sleep. He was in his early twenties. Just devastating. My friend is pretty distrustful of modern medicine and I know they were trying to deal with it in lots of non-traditional ways, but I don’t know exactly what they had tried or rejected.</p>
<p>^^^ Sorry to hear about your friend’s son. Those are the types of things that worry me and I’ll admit to checking on him each morning I wake up - just in case.</p>
<p>We’re not going non-traditional. I’m a big believer in the body being able to heal itself most of the time, but not always. We’re not anti-meds or anti-physicians. Middle son (not the one with the current issues) actually is starting next year heading either pre-med or med research.</p>
<p>I am definitely wondering if this is psychological in nature, but I don’t want to assume that and find out there was something physically wrong - then regret not checking.</p>
<p>Creekland, I wonder if you can find an Osteopath in your area? This is an MD with additional knowledge of bones and alignment. It does sound like the fall and conk on the head initiated things…</p>
<p>I believe an osteopath is an OD not an MD. Different orientations in medical training.</p>
<p>I’m sorry you are going through this. I have a friend whose child started having mysterious, disturbing neurological symptoms after she received her Gardasil shot series. The story is long and involved but the short of it is that the child is doing better. </p>
<p>If your son had the shot(s), I suggest that you do some internet research about reactions. You will see a lot of garbage and anti vaccine hysteria but there is also some compelling information. Please keep us updated about your son.</p>
<p>Also check out Sydenham’s Chorea, a neurological disorder caused by an untreated strep infection.</p>
<p>[Sydenham</a> Chorea Information Page: National Institute of Neurological Disorders and Stroke (NINDS)](<a href=“http://www.ninds.nih.gov/disorders/sydenham/sydenham.htm]Sydenham”>http://www.ninds.nih.gov/disorders/sydenham/sydenham.htm)</p>
<p>Creekland, we must be near-neighbors - my son was referred to the York Wellspan office when he was having neurological espisodes after Lyme disease. I just wanted to say we were very pleased with the doctor we saw there (Todd Barron), although my implulse was to take him to someplace like Hopkins. It is scary, and I hope you and your son get the answers you need.</p>
<p>^^^ Thanks for relating the positive experience with Wellspan.</p>
<p>Otherwise, my guy did get treated for two strep infections within the last year. It has me wondering. He spent almost all of yesterday with a friend at the friend’s house so I’m not sure about twitching level. I didn’t see much here at home. The fact that he’s not fearful about continuing everyday things makes me wonder about it all. But we’ll see.</p>
<p>Wow that strep connection is so very interesting. We had awful strep here as the kiddos grew up. Just couldn’t lick it; they’d be treated and “healed” but then two weeks later it’d be back again. We learned that dogs and people can be silent carriers; they don’t get sick but others around them do. For about 7 years we yo yo’d back and forth to the doc’s for strep. I learned to watch for a redness around the mouth - like a reddish minor chapping as a sign. DH had strep for months (undx’d) as a 5th grader and his teacher thought he was mentally handicapped. Turned out he had been sick most of the year. Nasty nasty bug is strep. I was aiding in a classroom once (decade ago now) and saw the chappy look on a kid’s mouth. I knew the family so suggested that he tell his mom that I thought he might have strep. He did. And his school performance had been plummeting for a couple months. They were glad to figure this out.</p>
<p>Before I get into the update, is there any chance this could be Lyme Disease? One of hubby’s engineering clients said he knew of someone with something similar and, long story short, it turned out to be Lyme. This kiddo is outside a LOT and we do oodles of hikes, etc. There are ticks around. We try to be careful, but… just putting it out there and hubby will ask when talking with the neurologist tomorrow. She didn’t think the strep was related, plus, he was treated for strep throat (twice) when he had it.</p>
<p>Anyway - Update:</p>
<p>Yesterday we met with the neurologist and all went quite well. She seems knowledgeable and took an extensive history from both youngest son and what we knew/saw as well as read reports from others. Then she did some basic testing - all of which he passed (balance, muscle control, etc).</p>
<p>In the end, she doesn’t think there’s anything related to the fall as it’s just not showing up anywhere else. It matches my thoughts that he is so “normal” when not having issues.</p>
<p>We’re doing the EEG tomorrow, but she doesn’t really expect anything to show up there as it doesn’t sound epileptic or true seizure"ish." Based on seizures I’ve witnessed, I agree, but we want to rule it out as much as we can.</p>
<p>Then we’re waiting to see if another episode happens between tomorrow and Friday. IF so, it’s going to be taped if at all possible. Then we might head into an MRI near the next time one would occur to check for any small injury (or buildup) that might not show up on a CAT scan.</p>
<p>However, barring that, she’s thinking (and hubby and I concur) that it’s likely to be Aspie related and not physical. Apparently, as the teen brain grows, sometimes it’s difficult for teens to adjust and it manifests itself in anxiety attacks. IF this is it, it’s different than “normal,” but in some aspects, there is no real “normal.” She questioned him a bit looking for a stressor and found none, BUT sometimes they won’t share. We did conclude that he has more twitching (and 2 of the 3 episodes) as he’s reaching “down time” rather than when stressed. He’s an extroverted Aspie (perhaps not as common on the spectrum?), so maybe that has something to do with it? (I’m brainstorming - not said in consult.) He’s ok when active, but has difficulty adjusting to his growing brain when not - at this point in his life. She’s hoping by being sleep deprived tonight that he will have some twitches tomorrow… Personally, I wouldn’t mind him having an episode tomorrow - as long as it’s at the hospital.</p>
<p>Either way it ends up, I just want to get to the bottom of it and get it fixed. Without any injury, I can deal with the twitches. The episodes are scary and need to get stopped. They MAY get stopped just because he would then know there isn’t anything physical (and his brain may have conjured up the stress thinking there was). I imagine I’ll be a bit stressed out for the next 3 - 4 days, but I’ll be at school - staying busy. Hubby is taking him to the MRI. I’ll be teaching math at school - able to get to the nurse if something happens here. Middle son will cover youth groups (keeping the Aspie on his schedule).</p>
<p>If we reach the weekend with nothing, then I’ll breathe again. I can deal with Aspie issues (or I’ll learn how to deal with them as I have been doing the past couple of years). </p>
<p>If it turns out to be physical - at least we’ll know and can hopefully fix it, but that is seemingly a rather thin chance at the moment since nothing else has been impacted.</p>
<p>I’m really happy to think there’s nothing truly life threatening even if it looks like it during an episode.</p>
<p>Oh, and sorry about not updating last night. Middle son won an essay competition again (3rd year in a row) and last night was the award presentation. This year he also won the next level up and will give that presentation in June. I didn’t want his success to be overshadowed by my having to update on here.</p>
<p>This is middle son’s year to shine with graduating, getting various awards (winning some local scholarships) and heading off to college in 4 months.</p>
<p>That MAY be youngest’s stressor, but I don’t want to deny middle son the enjoyment of his accomplishments.</p>
<p>It’s a tricky balance (and I wish I could say I always have it right, but that’s doubtful).</p>
<p>I’m glad the reports so far are hopeful, Creekland. And congratulations to middle son. Well done!!</p>