<p>dittoing calla!</p>
<p>Thats some good news at least. </p>
<p>It could be lyme disease, as its symptomes can vary.</p>
<p>Lyme can do awful things and be v. hard to dx. One kid in our town had lumbar puncture before they figured it out. CALDA is the place to google to get info. If you live in tick area and are outside lots lyme can def. cause lots of neuroloical problems. We’ve had it here and all the dogs in our neighborhood have, too. It causes lots more than aches and joint pain. And you do not need to have a rash to have it. Good thought, Creekland. I won’t go into all the stories I know first hand but you might just be on to something.</p>
<p>I hope you are able to get a definitive diagnosis soon. If you do not, I hope that you will seek a 2nd opinion from another neuro. The auditory hallucinations your S has described are consistent with temporal lobe epilepsy (TLE). Many neurologists are unaware that TLE can cause hallucinations. TLE patients are aware that their auditory and/or visual hallucinations are not real. They are still very much in touch with reality. Sadly, many TLE patients suffer these seizures for years without being correctly diagnosed. They are frequently misdiagnosed with a serious mental illness.</p>
<p>Some patients with TLE do sometimes have grand mal seizures and/or automatisms such as a hand opening and closing seemingly of its own volition. Unfortunately, even the gold standard tests for epilepsy - MRIs and sleep deprived EEGs - sometimes miss the diagnosis. That’s something I am sadly very familiar with!</p>
<p>Creekland, sorry, I haven’t read the whole thread, but have you seen a CBC (complete blood count) for your son? I think I remember you mentioning that something related to the muscles may be off? Creatinine? Be sure to get one and evaluate whether there are ANY abnormalities there. In particular, look for any flags, even slight, surrounding Blood Urea Nitrogen and Creatinine, AND ratio between them. Sometimes, when adolescents are growing, there can be changes in the internal junctions of the kidneys/ureters, increasing blood toxins and causing seizures. This happened to my DS, also an Aspie, and was corrected surgically. </p>
<p>(The neurologists did NOT diagnose my son. I had to request a consult with a nephrologist on the basis of the blood tests. Pediatrician and neurologists did not feel it was necessary – but they were completely wrong in our case! Never did receive an apology and my son suffered undiagnosed for eighteen months! He has no seizures now – completely well.)</p>
<p>Many parents of children with unexplained seizures report dramatic improvement with Omega 3 (fish oil) supplementation – worth Googling and there are probably medical studies out there as well. I think the medical establishment agrees that fish oil supplementation seems to prevent seizure-related brain damage if nothing else. Many parents report a dramatic reduction in number of seizures. Worth experimenting with, but make sure you buy a brand that is molecularly distilled, so as to avoid heavy metal contamination sometimes found in cold water fish such as salmon, etc. That was my strategy when DS was going through his seizures and it made a big difference! Hope this helps!</p>
<p>Hi Creek,
I am not a doctor, but when you mentioned strep, this popped into my mind. Have you ever heard of PANDAS?<br>
[PANDAS</a> - Wikipedia, the free encyclopedia](<a href=“PANDAS - Wikipedia”>PANDAS - Wikipedia)
A colleague of DH’s child had it following strep; until it was diagnosed, it was a nightmare for them. She is much younger - I think around 7 or so - but in her case, her entire personality changed practically overnight from being a perfectly lovely little girl to being such a terror that they were literally afraid to leave their younger child in the same room with her alone. That doesn’t sound like your son, but some of the other symptoms are tics and Tourettes-like symptoms. Might be worth looking into this too.
Good luck…I hope the doctors find the root of the problem and are able to treat him effectively.</p>
<p>I was wondering what happened Creekland, so thanks for the update</p>
<p>New Update:</p>
<p>Just got the call from the Neurologist after today’s EEG and it IS some form of “Generalized Epilepsy” as per the sleep deprived EEG. Words I wrote down include “Juvenile Myoclonic Seizures” He had some twitching during the EEG both while awake and asleep, but not a whole episode (though a little bit close at times).</p>
<p>He was conscious through it all (though asleep for 20 minutes or so). He’s always been conscious through even the 45 minute long episodes.</p>
<p>Our next appt is next Monday and we’re still going to try to film a major episode should one occur between now and then. At this point, I expect one in the next couple of days (based upon the previous cycles and the twitching increasing lately).</p>
<p>Anyone want to point me to a website for learning about this all? It sure doesn’t match any epilepsy I’ve seen or heard about.</p>
<p>How does this all start? He’s 16 and never had anything like it before.</p>
<p>Medication is in his future, but we’re waiting until the next appt to discuss options.</p>
<p>Any thoughts?</p>
<p>I posted in the other thread too, but wanted to repeat that I am happy for you that you have a diagnosis. I was so concerned that you would not, after months of testing. This is something that can be treated and managed, and not life threatening. </p>
<p>Who knows how it started? It could have been a small underlying issue all along that was brought to the surface with the head injury, a virus, hormones, or nothing at all. The head injury might not have even had anything to do with it. It is hard to tell sometimes. </p>
<p>I know that this sounds really scary, but it is managable, it is not going to kill your son, and there is still a possiblity that he will “grow out of” this too. That is the good part of this, hang on to that the next few months as you get this under control!</p>
<p>I am also thankful you have an answer - not knowing is so horrible. I had sent you a PM a while back and this sounds somewhat similar to that situation. They never had an answer as to “why” it started or how she went so many years, undiagnosed when the EEG clearly showed activity. As I mentioned in the PM, hormones are one suspect.</p>
<p>As vlines mentioned, this is manageable. The story I told you via PM was so scary to witness, but with medicine she lives a completely, normal, happy life.</p>
<p>Best of luck.</p>
<p>If it were my child, I would get a second opinion before starting any interventions. Good luck!</p>
<p>
</p>
<p>Like what (100% curious)? We were told the EEG clearly showed epileptic seizures happening. Is there something else that would cause it?</p>
<p>I’m kind of liking the idea of manageable and a normal, happy life.</p>
<p>He’s mainly distraught that this means no driving for some time, but he’s an Aspie and is not well-known for showing his inner feelings. I learned about more symptoms he’d been having at the neurologist (blurred vision coming and going, headaches coming and going - lasting about 10 minutes and coming/going abruptly).</p>
<p>I am still thinking this had to have started with his fall - it’s way too coincidental otherwise (but I know, not 100%). I’m secretly hoping there’s some small injury that will heal given time.</p>
<p>But I am curious what another option could be. Is there anything we should ask about?</p>
<p>We’re still going to try to get the next episode on film if at all possible. My fear is it will come in the middle of the night and he won’t let us know by calling out.</p>
<p>
</p>
<p>I went back and re-read your pm. Thanks. I really do like manageable and normal. He will too. There are many worse things it could have been.</p>
<p>Creekland, I was thinking that I would want a second person to read the results, (and they may be the same) and then after the Dr. recommends a treatment, (meds, behavior mod, whatever), I would talk with multiple specialists to see what they recommend. If long term medication to control the seizures are recommended, I would definitely seek out other alternatives. </p>
<p>Anyway, it sounds like you have a good handle on the situation and that you are doing your best to make the right decisions</p>
<p>Parent1986- what other options are out there to control seizures other than meds? I am curious now!!</p>
<p>Creekland - thanks for the update. </p>
<p>My best friend’s D was diagnosed with epilepsy when she was 12 years old. It took awhile for them to get her on the right medications to control the seizures, but today she is a happy 20 year old college student who has learned to live with this.</p>
<p>[Juvenile</a> myoclonic epilepsy, a common epilepsy syndrome](<a href=“http://www.neurology.org/content/73/13/e64.full]Juvenile”>http://www.neurology.org/content/73/13/e64.full)</p>
<p>If the diagnosis remains as JME, discount the fall as the cause because JME is often genetic.</p>
<p>From the linked article:</p>
<p>The cause of JME is genetic, and up to one-half of people who have JME can identify other family members with the same illness. However, not everyone with JME knows someone in their family who has seizures. A person can have the gene, but never have seizures. Another way of thinking about this is that some people are “carriers” of the gene—for them, the gene is “silent.” However, they can still pass the gene to their children. Their children may (or may not) ever show the gene, meaning that many people in a family could have the gene, but only a few of them will have seizures. So far, several different genes have been identified as possible causes for JME.</p>
<p>Also from the linked article:</p>
<p>JME can begin between the ages of 6 and 36, though for most people the seizures begin between the ages of 12 and 18. Why JME starts in adolescence is unclear, though some have proposed that the “trigger” is hormones. The reason for this is that the onset of the seizures coincides (for most people) with the physical changes that occur in puberty: hair growth, voice changes in men, and breast enlargement in women.</p>
<p><a href=“http://www.epilepsy.com/EPILEPSY/EPILEPSY_JUVENILEMYOCLONIC[/url]”>http://www.epilepsy.com/EPILEPSY/EPILEPSY_JUVENILEMYOCLONIC</a>
^another article which suggests that JME may have a genetic basis.</p>
<p><a href=“http://www.webmd.com/epilepsy/what-is-juvenile-myoclonic-epilepsy[/url]”>Juvenile Myoclonic Epilepsy Symptoms, Causes, and Treatments;
^more info for you</p>
<p>“Parent1986- what other options are out there to control seizures other than meds? I am curious now!!”</p>
<p>Vlines, not really sure - there may be nothing, but you don’t know until you ask or research.</p>
<p>I would look at alternative practitioners as well as traditional ones.</p>
<p>nysmile - thank you very much for that link. Most seems to fit perfectly (short twitches, etc). These are the types of things he was experiencing during the EEG (both awake and asleep). The large seizure-type episodes don’t as he’s fully conscious during them and they last for 45 minutes to an hour. Any clue on those?</p>
<p>He can live with the first type without meds. They look weird, but are a minor nuisance. The second type are scary, but don’t affect anything vital (vital signs). Those need to stop. Both came on after the fall, but that could be coincidental as he’s in the age of onset range.</p>
<p>He’ll be happy to know that some outgrow it.</p>
<p>And no one in either of our families has ever had this in anyone’s memory, but I understand the carrier bit.</p>
<p>I’m not a parent, but saw this thread and decided to chime in. At the end of February I passed out while riding my horse and fell off and landed on my neck ( I had a helmet on and it helped keep this from being much worse than it already was) and began having a seizure. I was taken by ambulance to the hospital, kept in a coma for 24 hours (they were worried about possible neck/spine injury and paralysis), immediately put on seizure meds, and then stayed in the hospital for a few more days. I had multiple MRIs and an EEG and they all came back negative, but the neurologist wanted me to stay on seizure meds for a couple months just to be safe. It appears that my seizure was just caused by Traumatic Brain Injury. I just wanted to warn you about the seizure meds. Depending on what he gets put on, the side effects can be pretty nasty. Thankfully I will be coming off my meds next week, but they are well known for making people irritable, depressed, and moody. Just something to keep an eye on since he is an Aspie and may not tell you he is feeling this way without being directly asked. I too was crushed about the whole not driving thing. But I should be cleared soon. Obviously if the medicine works then keep him on it by all means, but just wanted to throw in my two cents. There are lots of different seizure meds, but the current “popular” one is known for these side effects. Make sure to talk to the doctor if he is experiencing this because there are other meds to try! Oh, and the first month is the worst as your body gets used to the drug. I am on the lowest dose they make and it still hit me pretty hard. Good luck to you and your son! Hope everything works out for you guys. I completely understand the frustration of not understanding what is going on and what caused it! I have been absolutely fine since my accident and have not had any more episodes. So now we just hope that it will stay the same after next week when I start weaning off the meds!</p>