What does it look like?

[Msimpson]

My son saw a neurologist a month ago, and based on some of the things we described she suspects that he might be having seizures. At the recommendation of his occupational therapist we set up a camera to record while he is sleeping. This has been quite an eye opener for us. We have learned that he is not a sound sleeper, but we have also seen some strange movements and shaking taking place. I have no idea what a seizure should look like and I know there are many different types. I can't post the link of the youtube video of him sleeping on here so I am not sure how to get any insight as to what we are seeing. Help would be appreciated.



Thanks!

 

[Nakamova]

Hi Msimpson -- you can PM me with the link, and I can take a look and post it.

The shaking may be myoclonic seizures. Your son might benefit from a sleep study. Will you be showing your recording to his neurologist?

 

[AndrewIrish]

I don't think they'd be myoclonic seizures... those would be more of a quick burst of movement here and there, not really a consistent shakiness... maybe a simple partial seizure of TC's... hard to tell by hearsay of a video...

 

[Nakamova]

Here's the link to the recordings: http://www.youtube.com/user/simpsonsluvpigs?feature=mhee

It may be easiest to see some of the shaking in the last of the series.

 

[Msimpson]

Hi Msimpson -- you can PM me with the link, and I can take a look and post it.

The shaking may be myoclonic seizures. Your son might benefit from a sleep study. Will you be showing your recording to his neurologist?

I called the Neurologist this week to inquire about a sleep study. They asked for the link to the videos, but I don't know when I will hear back from them. Prior to recording him in his sleep we had seen a few episodes of shaking during the day and occassional hand tremors. It never occurred to us that he might be having the same episodes while he was sleeping.

 

[donnajane]

Hi, My son, who is now 15month old. Started having events around 7 months. They were arm shakes they gradually became more and more. Often he would lock his head, eyes wide open and he would shake his arms rapidly for a few seconds. He also would have episodes during the night. Some shaking others were he would slam his arms and legs back into the bed, it seemed like what we might do if we had a dream that we were falling. I remember being shocked watching him sleep one night while he was in hosptial having a 24hr EEG. I had to stay awake and press a button every time he did something I felt was not right. The EEG showed something small but we were told not to worry and that he had something called "Shudder Syndrome". I googled it and int the video's I saw the tremors/shudders looked very small compared to what my son did. The Nureo at the hospital even asked for copies of my sons footage as he aksed if he could show it at a conference. Shudder Syndrome does not need medication and apparently they grow out of it. My son has grown out of a lot of it but still has Sudder every now and then. He now though unfortunately has other types of events/seizures as we as some other strange things going on. Just over a month ago after 4 clear EEG's his 5th came back showing he has a slight slowing on the back right of his brain. He is booked if for an MRI when he turns 18months in July and also has appointment with the Metabolic unit at the children's hospital.
My sons condition may be nothing like your sons but who knows. I know we are still searching for an diagnosis for my son. The original Nureo who diagnosed him with Shudder Syndrome refused to see him again even with his new event/seizures unless we went through the ED and they decided they needed to call him so we now have a private Paedeatric Nureo who is amazing. He said he is going to keep an eye on my son and doing non invasive tests until he either outgrows what is happening or until he has a better idea as to what is going on as he would hate to miss something.
Good luck with it all. If you feel something is not right with your child keep looking for answers as I can not imagine anything worse than if I gave up searching and there was something there that affects my childs life.
Donnajane

 

[Msimpson]

The neurologists office called back today and said that the doctor thinks it is all normal sleep. I don't see how the shaking and tremors during sleep are normal but I am not a physician. They said to continue to monitor him (obviously). The one thing we have not caught on camera is when he wakes up screaming and is inconsolable for a half hour afterwards. It is so hard to not know what is going on with him. I am not a parent that wants my child medicated but I do want answers.

 

[Staceypt]

My son (who is 2 -no seizures or anything, that is my 7 y/o) wakes up screaming and is inconsolable for an extended period of time - thrashes around and it is just awful. I was told they are night terrors and to not try to wake him... just rub his back and soothe him however I can and that he would grow out of them. His usually happen when he is really, really tired or not feeling well. Just thought I'd mention it b/c the screaming and inconsolable sounds like my little guy. Good luck getting your answers!

 

[Msimpson]

My son (who is 2 -no seizures or anything, that is my 7 y/o) wakes up screaming and is inconsolable for an extended period of time - thrashes around and it is just awful. I was told they are night terrors and to not try to wake him... just rub his back and soothe him however I can and that he would grow out of them. His usually happen when he is really, really tired or not feeling well. Just thought I'd mention it b/c the screaming and inconsolable sounds like my little guy. Good luck getting your answers!

I initially though maybe he was having night terrors too, but everything I have read says that in a night terror the child is asleep. My son is very much awake during these episodes. It is just so difficult when you don't know what is wrong, and because of his speech delay he can't tell me what he is experiencing. He goes back to see his neurologist in June. I will just continue to gather information and maybe we will be able to get more answers then. I do appreciate the feedback from everyone!

 

[Staceypt]

I feel your pain with the speech delay -- my 7 y/o is autistic and didn't talk till he was almost 4. It's tough when they can't tell you what they need.

My 2 y/o son looks like he is awake when he has his night terrors but he is unable to respond to us - his eyes are wide open, but he is not awake. It is the weirdest thing. Once he starts to calm down then he is able to talk to me and I know he is awake. He is just two, and just starting to talk - it was tough to tell when he was younger and couldn't respond to me. Supposedly they don't remember them - which is a good thing - my poor little guy is a mess when they happen. Good luck with the neurologist!

"Children who have night terrors are usually described as 'bolting upright' with their eyes wide open and a look of fear and panic on their face, and they will often scream. Further, they will usually sweat, exhibit rapid respiration, and have a rapid heart rate (autonomic signs). In some cases, individuals are likely to have even more elaborate motor activity, such as a thrashing of limbs -- which may include punching, swinging, or fleeing motions. There is a sense that the individual is trying to protect themselves and/or escape from a possible threat which can lead to physical injury of the individual. [2] Although it seems like children are awake during a night terror, they will appear confused, be inconsolable and/or unresponsive toward attempts to communicate with them, and may not recognize others familiar to them."

 

[Msimpson]

The latest episode occurred Saturday morning. Both of his arms were visibly shaking and he kept rubbing his eyes and nose. He was awoke shortly before the shaking began. He stayed a wake for a little bit afterwards but then went back to sleep and slept until noon (he is usually up by 8:30). He slept a total of 14 hours which is also not typical for him. The video is posted on the same link that is further up on this thread.