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Hello Everyone,

I am new to the forums and am just reading through different stories in an effort to find something that might 'click' and help us to figure out what challenges my son is experiencing. I am the extremely lucky mother of a fantastic 14yo boy. He's bright, funny, and has a great heart. He also has been experiencing some strange episodes over the past year.

It started in December 2012, while he was at the computer playing a video game. It was a bit later than usual, but not incredibly late. I was in my bedroom reading when I heard a crash in the dining room. I came in to find my son flat on his back, in a dining room chair. His eyes were wide open and he was 'frozen' in place. I panicked, screamed, yelled, shook him until he came out of it (about 1 minute) and helped him to his feet. He was a little upset about me causing such a fuss, but assured me he was okay. I checked his pulse, respirations, his pupil size and called my best friend (who is a doctor). All signs seemed to point to him being okay. My husband took him to the pediatrician the next day, and we were told he may have nodded off in the dining room and just 'knocked himself out'. We were told to bring him back if it happened again.

There were no episodes until September 2013. He had an episode again where he fell, this time out of bed about an hour after going to bed for the night. I heard a crash and walked into his room. He had opened his closet door at some point, only a few feet from his bed. He was laying on the floor between the closet on his back, eyes wide open again and again it took about a minute for him to come to. After this episode, we were able to see a neurologist. First EEG came back normal, so we did a 3-day ambulatory EEG. That came back normal as well. The neurologist could not find any signs of epilepsy, and felt it might be more of a sleep disorder. However, she couldn't rule it out since no one knows what causes the fall since it is at night and he's in his room alone. She said to 'live life' and call her if it happened again.

Since then, we have moved and we are in a newer/larger townhouse. So, here we are with episode 3. It happened last Thursday, and again I heard a crash. I went into his room and saw his empty bed. I looked again and could make him out on the floor of his room, again with the closet door open. He was on his back, eyes wide open, body rigid/muscles tight. In fact, he was holding something so tight in his hands that I had to pry it out. I was able to notice that he was breathing, at least, so that was reassuring (other times I was too panicked to notice). It took about a minute to get him to come out of it. Afterwards, he just wanted to get a drink and go back to sleep. I called the neuro, and she said "wellll, if it happens AGAIN, give me a call. Just monitor him".

At this point, I am panicked. I can't sleep, since my room is on the opposite side of the house. I have been sleeping on the couch so I can hear any sounds. I jump at every sound and I don't know what to do next. I don't know how to help him and it terrifies me and breaks my heart. I am fearful that he will fall and really injure himself, or that he will fall down the flight of stairs that we have here at the house (technically, our unit is the 2nd and 3rd unit of the building and we have a set of stairs immediately when you enter).

I just feel so helpless, so I am trying to see if there may be someone who has experienced something similar or might know what more I can do.:crying:

Has anyone else experienced something like this?
 

arnie

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Hello and welcome to the CWE board. What's going on with your son sounds pretty scary. For what it's worth, I think seizures are usually more frightening for the people watching them than for the people having them. My wife will attest to that, I'm sure! As to your individual situation, I personally have not had seizures that quite fit the description you gave, but it seems to me that what he has had would qualify as a generalized tonic seizure. (Generalized because it affects the entire brain, as opposed to a partial seizure. Tonic, because the muscles become stiff and rigid. There are also tonic-clonic seizures, where there is stiffness and jerking or convulsing, and atonic, where the muscles go limp). The fact that nothing showed up on an EEG doesn't mean much. Many of us, myself included, have never had abnormal EEGs although we definitely have epilepsy. Epilepsy, or a "seizure disorder", often has to be diagnosed on the basis of symptoms only since oftentimes no actual brain abnormalities are found.
I'm not sure if that helped too much, but I hope that if he has any further episodes of any sort you can get to a neurologist who might be able to give you some more answers. Also, read up on the various seizure types (google "types of seizures") so you can see if he might be having any other seizurey sorts of episodes. Please keep in touch with us here to let us know how things go, and to get support for yourself and your family. Seizure disorders can be scary, but they don't have to take over your life. Post again or PM any of us if you have more questions.
All the best to you and your family! Carry on!
 

Nakamova

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Hi GSL, welcome to CWE!

Arnie's advice is spot-on. Your son may be having tonic seizures -- see https://www.epilepsy.com/epilepsy/seizure_tonic for a description. It does seem that something neurological is going on, and whatever it is may be escalating, given that the most recent episodes were only three months apart. I think it's worth keeping track of your son's symptoms and taking a close look for any other unusual symptoms/behaviors or something out of balance in his habits or diet. You might want to ask his friends or teachers if they have noticed anything unusual as well.

Since the first episode occurred while he was playing a video game, that could be a sign that he is having a bit too much screen time, and/or is photosensitive. Blue screens can interfere with sleep, so it would be ideal if your son could have a least a half-hour break from any computer devices before going to bed. Fatigue is the #1 trigger for seizure disorders, so make sure your son is getting plenty of good quality sleep. If he drinks a lot of sodas, it might be a good idea for him to cut down.

You can find information about ways to be proactive here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ Even if what your son is experiencing is not seizure-related, the advice at the link can be very helpful.

Best,
Nakamova
 
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Hi Arnie and Nakamova,

Thank you for the kind words and tips. I have been reading up on seizure types for months now, and nothing seems to exactly fit what is happening. I just feel so incredibly frustrated, lost, scared, and clueless on how to help him :(

Since his last episode in September, we've regulated both sleep and electronics. He is in bed by 20:30 (what a feat for a teenager! Plus it gives him 9 hours of sleep a night), and is not allowed to use electronics within the last hour before bedtime. It makes me feel like the best and worst mom at the same time. We've also ensured that he is constantly making good food choices, avoids caffeine, and stays hydrated.

The most frustrating part is that he doesn't show any other signs that I see listed for anything. He's never had (visible) convulsions, he doesn't make sounds, he doesn't have any telling movements....so I don't know how to tell something is coming. His teachers, who have been kept aware of everything, haven't reported anything when I check in, either. What I am most terrified at is the way that he falls and knowing that he ends up on his back. I am afraid of a head injury of some kind, or even neck/back.

Thankfully, he is a resilient kid who just bounces back. Me? I'm a nervous wreck. For those of you who go through this on your own, or for your kids, how do you get any rest? Do you ever get past the terror all the time?
 

Nakamova

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I think tonic seizures are probably the closest fit: They don't involve convulsions or sounds, just rigidity of some or all of the body (including clenched fist). The person is not usually conscious during them, though their eyes tend to be wide open. The episodes last less than a minute, and they often happen during sleep. If the person is standing when the seizures occur then they will fall down. Were your son's arms by his side or held up in front of his upper body when you've found him? The latter position is also characteristic of certain tonic seizures. They can be associated with frontal lobe epilepsy, which often doesn't register on EEGs.

I'm sorry that you don't have a definite diagnosis to respond too -- the element of the unknown just makes things harder, especially for you. I hope that the unusual symptoms never occur again. In the meantime it's terrific that you've worked to ensure your son's good sleep and overall health.

The links below are to threads by parents of teens with epilepsy -- their situation may be different from yours, but you may find some helpful information, and can also PM the parents with questions.
http://www.coping-with-epilepsy.com/forums/f42/12-year-old-son-diagnosed-jme-20311/
http://www.coping-with-epilepsy.com/forums/f20/new-wonderful-world-epilepsy-21288/
http://www.coping-with-epilepsy.com/forums/f20/feeling-overwhelmed-15108/
http://www.coping-with-epilepsy.com/forums/f42/12-year-old-newly-diagnosed-scared-19640/
http://www.coping-with-epilepsy.com/forums/f20/introducing-myself-21070/#post235373
http://www.coping-with-epilepsy.com/forums/f20/college-bound-teen-w-epilepsy-15800/

:hugs:
 

BrandiBrat

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Hi! I'm sorry to hear about your son and it sounds like you are taking a proactive approach to this. I have tonic seizures in my sleep that match your son's description to a tee. My entire body gets stiff as a board and I clench my jaw so tightly that I've actually chipped a molar. If I'm sleeping on my stomach, my back arches in a "U" shape due to the muscles tightening. No convulsions, just stiff until it passes.
I do hope that his doctor is able to find answers for your family and begin treatment. Welcome to the forum, it's a great place! :)
 
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Once again, I have to say thank you for the information, kind words and encouragement. They mean so much right now as I struggle to get through each day. Honestly, I think it is worse on me right now then him. Kids are amazing!

Nakamova, his arms are typically in front of him, kind of held out like he'd be holding a box. This past time, they were out in front, but held against his chest since he was clutching something. Reading over all the links and forums and articles and everything I can get my hands on, I do feel it sounds the most like a tonic seizure. I am trying to read up on everything that I can, and I've started work to get him to see another neurologist. I feel like there has to be someone who can figure out what this is.

Brandi, have you ever fallen during one? What precautions do you take? Do you stay conscious? Sorry for all of the questions, I am just trying to piece the puzzle together and figure out what more I can be doing. I wish it were possible to bubble wrap a teenager...I would definitely do it! :)
 

qtowngirl

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welcome ginger, and hugs.
i agree with the above, if it truly is a seizure it sounds much like a tonic. it's not overly common to be simply tonic or clonic (rather than both together), but not 'rare' either.
my first thought is why the docs haven't scheduled him for an mri (unless they did and i missed that when reading?). as arnie said eeg's are rarely definitive, it's common to have epilepsy (even with lesions, tumours etc). and nothing shows up. an mri is the key test. best of luck my dear, and keep us posted.

:hugs:
 
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Thank you for responding, qtown. He has not had an MRI, which I questioned, but I hadn't dealt with this before with a neuro. (I have fibromyalgia and migraines, so I am well versed to neuros and testing, just not in this capacity) I struggle to know what to ask, since I have little to go on. I was told to let him live life, but if I don't know what's wrong, or anything to avoid, how can I keep him safe? Every sound I hear at the house makes me jump, so I think the right thing to do is to take him to a different neurologist to see if I get different results.
 

N Sperlo

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Hi Ginger,
I was just scrolling through and stumbled upon the thread. Welcome. Some of your questions don't quite have answers.

I struggle to know what to ask, since I have little to go on. I was told to let him live life, but if I don't know what's wrong, or anything to avoid, how can I keep him safe?
Often times parents have trouble asking questions. I was diagnosed at 16 and my mother struggled in the same way. I suggest to everyone that you keep a journal. The journal should eliminate many questions that can be asked by giving the neurologist as much information as possible.

You're the mom and your job is to worry about him. All I suggest you do is relax, like the doctor said. So far he hasn't been hurt, right? Hopefully it remains that way. There isn't really much you can do unless you want to wrap him in bubble wrap. If these episodes are happening only at night, you can bet drowsiness has something to do with them, so there isn't much to worry about in the day.

Anyway, best of luck! Don't let the stress get to you.
 

chop456

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Welcome to CWE! I am the mother of a 15 year old (almost 16) daughter who was diagnosed with epilepsy at age 14. You have found a GREAT resource. There are so many wonderful people here. I remember those initial days and months after diagnosis well. The days were a blur and I could not stop reading and trying to educate myself. I understand your needing to sleep on the couch. Paige actually slept in bed with me for a month! Please know it does get better. Take you time getting there - but you will. From one mom to another - if you ever need to talk, feel free to PM me or post here. Life will find a new normal. I have made our way through the needed supports at school (504 plan) and have initiated diet therapy in addition to Paige's meds. She is currently talking Driver's Ed, is a two sport varsity athlete, plays the tuba, is in choir and has gone on an outward bound camping expedition. Now, if you ask Paige I completely overdo to reading and research and am a worry wart - but I am the mom... that's my job ;)
 

QueenieKP

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I was 17 when I was diagnosed. My mum worried far more than me I was very blasé. You are doing an awesome job and managing all the triggers. Log everything 'odd' and good luck with a diagnosis or these tonics just maybe buggering off. Keep us posted.

Q
 

LisaBee

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Oh honey, reading your post makes me sad. I remember all too well that feeling of desperation and fear. Not being able to sleep or eat. Wanting answers and help! I promise you will get there. We are 2 years post diagnosis and doing well. Keep pushing for answers and if you dont feel like you are getting them, switch drs. We did 3 times. Good luck and hang in there!!!
 
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