Partial seizures or sleepwalking?

mrssperls

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Hello,
I'm looking for some direction, as I'm currently quite concerned that my 7 year old son, Quin, is having simple/complex partial seizures.
About a year ago, he started coming into my room at night, sobbing and inconsolable. He would be wide-eyed and often had his hand clamped over his mouth, and his expression wasn't one that he'd ever made before ... It was physically him standing there, but his eyes were blank and his face was just different. About a minute later, he'd "come back" to reality and would go back to bed without much fuss. This happened about three times (twice at my house, and once at his Dad's), and he started occasionally wetting the bed around that time also. We all assumed that it was him sleepwalking, as he's always been a "crazy sleeper" and often wakes up in random places in his bed and room. He's also always exhausted during the day and has memory/attention problems. The strange thing is that he could remember the episodes and would always mention that "a weird thing" always happened before it, and he would feel himself shrinking and the room would get bigger and bigger. From then on, he referred to it as the "weird thing" and would occasionally mention it happening without a sleepwalking episode.
Fast forward to this past week .... He got the flu and had a low-grade fever. While at his Dad's house, he climbed up the ladder into his brother's top bunk and his brother said that Quin was "holding his mouth tightly and reaching for things with his other hand in the dark." He said that he was crying and totally not himself. Again, after a minute or so, he was back to normal and went back to sleep. The next day he was back at my house, still with a fever, and laid down for a nap beside me. After being deeply asleep for almost an hour, he sat up, sobbing and totally disoriented. He wouldn't answer me, and only held his hand tightly over his right eye and kept saying "I can't see!" I removed his hand and he was looking around frantically and yelling that his eye was blurry and he couldn't see out of it. I wrapped a blanket around him and laid him back down, and, again, he came out of it suddenly and asked to watch a movie. He remembered the episode and said that the "weird thing" happened (the shrinking feeling) and then he was blind in one eye, and then it went away.
Throughout the rest of the day, he would lie down to rest (still having the flu) and twice said "Mom, the weird thing is happening," and then it would go away.
For the past two days, he hasn't told us about anything happening, and seems to be back to normal. His Dad's girlfriend had epilepsy as a child and mentioned that she knew what he meant by the shrinking feeling (know I know it as micropsia). My son's Dad thinks it's nothing more than sleepwalking, and thinks I'm over reacting.
Does this sound like something you've ever dealt with? If he doesn't have any more episodes, should I even bother getting him checked out? Also, he has a Dx of Chronic Tic Disorder, and has had facial and finger tics for the past three years. Not sure if that's connected or not. I really don't want to stress him out with tests if it's nothing to worry about. Please help! Thanks in advance!
 

Porkette

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Hi mrssperls,
Welcome to CWE! I've had simple and complex partial seizures for 44 yrs. and I what you are describing sounds like what happens to me before I go into a complex partial seizure. I will start to see colors flashing back and forth in my eyes, then I get a nervous feeling in my stomach, then all of the sudden the room looks a lot smaller or it doesn't look familiar to me and I'm conscious during all of this time, then a few seconds later I blank out, get up and wander around and come out of the seizure finding myself in a different room and I'm a little confused not realizing how I got there until I realize I had a seizure. Take note and see if your son smacks his lips, or pulls at his clothing this is all part of the complex partial seizure also.
You should have your son see a neuro or an Epileptologist if you haven't yet. You may want to ask them to do a sleep study and e.e.g. on your son it won't hurt at all. I had this done and they found I was having seizures in my sleep 1-2 hrs. before I woke up in the morning. Also your son may have a sleep disorder which could be causing the seizures.
Each time when I get sick with a cold or a virus I have more seizures because the virus is throwing off my body chemistry a little or I have to take cold med and that will mess up my seizure meds. Keep track of your sons possible seizures get a calendar and write down what time the seizure happened with a description of the seizure this will help the Dr. a lot and they may see a pattern in his possible seizures. I wish you and your son the best of luck and May God Bless the Both of You!

Sue
 

N Sperlo

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Hi mrssperls and welcome.

Porkette, as usual, gave some good advice that I, too, would suggest.

I would like to share one of my experiences with epilepsy that may be similar in some ways. I was diagnosed withe epilepsy about 14 years ago. Most the time I've known that I have it, it has been under control, but it will show it's face every once in a while. One of the more recent experiences I had was nocturnal, or manifest when falling asleep or waking up. Sometimes I remembered doing strange things "in my sleep" and other times my wife would tell me about the strange things I did. It usually started with me sitting up in bed suddenly with a blank stare and freakish grin. This was a bit confusing as my neurologist thought it was RBD (REM Behavior Disorder) and prescribed me medication for it. It only partially controlled it. The next step was sending me home with the EEG equipment hooked up and a camera running. We would press a trigger every time something happened. It was only at this point, my doctor was able to deduce that this was seizure activity because the same activity would manifest repetitively as my brain activity read I was awake, yet I did not remember the activity.

This sounds similar to your son's activities as it sames to be repetitive, but you can draw your own parallels. I would highly suggest seeing a neurologist. After the addition of medication, my wife is no longer being beat up by me while I'm asleep. Also keep in mind, my EEG had shown no seizure activity while this was taking place. My neurologist only deduced it was relative after observing my physical activity. EEGs are not proof a seizure does or doesn't happen, but only a tool used to study.

Best of luck.

P.S. I think we may have very similar names. :roflmao:
 
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masterjen

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Hi, mrssperls and welcome to CWE!

I agree that your son needs a referral to a pediatric neurologist to investigate the possibility of epilepsy. Just to expand your researching and gathering of information before you see a specialist, however, google "childhood parasomnias" and "epilepsy imitators" (of which parasomnias will likely be included) to inform yourself as to what these are and to determine if your son has symptoms consistent with anything besides epilepsy. Chances are, these other disorders will be what the neurologist will be considering in addition to epilepsy, and it would be great to know and understand where the specialists thoughts may be coming from.

Be demanding of your son's family doctor, and state that you want him to be seen by a pediatric neurologist (preferably epileptologist, a neurologist who specializes in epilepsy) as soon as possible.
 

mrssperls

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Thank you!

Thank you so much for your replies! You all have contributed a lot of very useful information.
Since my son is with his Dad for the week, I haven't been able to do any observing of his behaviour, but I have been able to have a talk with his Dad and explain what I think is going on. He actually was very receptive and agreed that it's something serious that we need to keep a close eye on. So that's a GREAT first step, since we have 50/50 custody and his support is pretty essential.
I'll look up some more information about parasomnias and epilepsy imitators, and see if his behavior seems more consistent with something other than epilepsy. As well, I'll make an appt with his pediatrician to figure out our next steps.
I appreciate your responses ... Mostly, they helped me to feel like what I'm seeing is something REAL and not just something that came out of a Google/WebMD rabbit hole. Even though I'm an RN, I'm constantly second-guessing myself when it comes to my own children!
:cheers:
 

Cint

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Even though I'm an RN, I'm constantly second-guessing myself when it comes to my own children!
:cheers:
Please don't take this personally, but most RNs don't know much about the different types of seizures/epilepsy that do exist. Actually, most doctors don't know either, unless they are in the neurology field. I was misdiagnosed years ago as having hypothyroidism instead of CP seizures. And things only got worse. So like suggested, your son needs to see a pediatric epileptologist.

Some of the symptoms you describe are symptoms of a seizure. Look here:

http://www.epilepsy.com/learn/epilepsy-101/what-happens-during-seizure

Common symptoms during a seizure:

~Awareness, Sensory, Emotional or Thought Changes:
~Loss of awareness (often called “black out”)
~Confused, feeling spacey
~Periods of forgetfulness or memory lapses
~Distracted, daydreaming
~Loss of consciousness, unconscious, or “pass out”
~Unable to hear
~Sounds may be strange or different
~Unusual smells (often bad smells like burning rubber)
~Unusual tastes
***Loss of vision or unable to see
~Blurry vision
~Flashing lights
~Formed visual hallucinations (objects or things are seen that aren’t really there)
~Numbness, tingling, or electric shock like feeling in body, arm or leg
~Out of body sensations
~Feeling detached
~Déjà vu (feeling of being there before but never have)
~Jamais vu (feeling that something is very familiar but it isn’t)
~Body parts feels or looks different
~Feeling of panic, fear, impending doom (intense feeling that something bad is going to happen)
~Pleasant feelings
Also, a person may walk "in circles" or somewhere without direction during a CP seizure.

I hope you find answers soon.
 

acshuman

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You Can Find Out a Lot About E Simply by Googling Your Questions!

mrssperls,
WELCOME TO CWE!! You will meet many helpful people here!
I have had E for 51 years now. Before the Internet came around it could be difficult to find information about E. That has been solved by the Internet! If you have any questions about what may be happening with your son you will get help from many people here at CWE. You can also find many of the answers you are looking for by using Google. There are thousands of articles about E that have been written by experts that can be found that may have the answers you may be looking for! With as long as I have lived with E I can definitely say that I learn something new about E each and every time I go looking for answers. It may not be the exact answer I was seeking, but it will be something that will be very helpful for me myself or give me the knowledge to answer a question someone may have! This makes these articles very valuable to me AND to anyone who reads them! :clap:

acshuman
 

Hobbes

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You might find info related to your son's 'weird thing' perception change with shrinking and the room growing under Alice in Wonderland Syndrome.
 

Sabbo

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I agree about them not knowing about the different types of seizures/epilepsy. I was in the middle of a STRONG complex partial when my husband took me to the emergency room, and the nurse who was there didn't believe him at first.
 

Music36

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mrssperls,

I don't know if your child has epilepsy, but it probably would be a good idea to take him to a pediatric neurologist. I was born with epilepsy, but not correctly diagnosed until I had a tonic-clonic at age 21 and saw a neurologist for the first time in my life. I can remember having what I called "attacks" as far back as 7 years old. My doctors assumed they were anxiety attacks b/c my aura is intense fear. I was never sent to a neurologist. In my teen years, the "attacks" became more frequent and more intense. I was having complex partial seizures all those years and we didn't even know it. If I would have been correctly diagnosed and put on anti-seizure medication as a child, things may have turned out very differently. Maybe, I would have become seizure-free, but instead they got worse and became a lot more frequent. I started medication at age 21 and tried different meds and was never able to be seizure-free. I'm 48 now. I finally decided to have surgery which took place last year. The surgery was successful. I found out right after the tonic-clonic at age 21 that I also had a tonic-clonic the day I was born.
 

Sabbo

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Music36,
What you've described is similar to my story. I complained of "weird feelings" in my head since childhood--nobody could understand what they were. At the age of 14, I suddenly had Tonic Clonics, & that was when the "feelings" were finally diagnosed as Simple Partials. I was a forceps delivery in England, & there is scar tissue in my brain. That is where the SPs originate. No TCs since, but I began having Complex Partials about 17 years ago. Those have been very dangerous for me.
 

Music36

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Sabbo,

I was also a forceps delivery and I have scar tissue on my left temporal lobe which is the focal point where my seizures start. I don't know if the forceps are related or not. Last year, they removed my left Hippocampus and part of my left Amygdala so I believe the scar tissue should be gone.
 

seagull

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I think of the simple first are they night terrors that not uncommon and very alarming for parent and go from there
 
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