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tjholt2016
07-09-2016, 12:29 AM
I have an 8 year old son who recently has been going through some wierd medical things. Here is a bit of background...

In April I picked him up from school one day and he was sleeping face forward and very hard to wake up. It took me 5 mins to wake him up and when I did he was very confused, and out of it which lasted a minute or so. A teacher saw me and at first said he had to have been joking around because he had just been in PE class and was very energetic, He was not fooling around and had definitely fallen asleep.

About a week after this incident I got a call from teh school around lunch time telling me he was very tired and kept falling asleep. They told me I did not have to get him. When picking him up at the end of the day I found out that he had continued to "fall asleep" roughly 7 times during the day. Several times falling out of his chair and once while walking around the room passing out papers. His sister is also in his class and she said when he did it passing out papers his upper body was twitching. When bringing him home he did it to me in the car when taking him to the ER. He was very unresponsive and could not be woken.

He told us that before each episode his eyes get very tired, he sees everything blurry and double vision, his eyes begin to hurt and his head hurts and he knows he is going to "fall asleep". I should point out that he was not over tired and he gets very good sleep at night. He falls asleep quickly and always wakes up rested and full of energy. The ER ran tests to rule out blood sugar issues, heart issues, and other metabolic conditions. They released us, but after getting home it happened again so we went to a hospital with a neurologist. He was admitted to the hospital and they did an MRI with and without contrast on his brain which came back normal. Along with an EEG and EKG, both were normal. We were released and told to just watch him.

In June he was playing outside and he told me that he had a vibration and stinging feeling in his chest. At the time he was playing basketball and doing a lot of jumping and shooting the ball. He said everything felt very week and he felt like he was being shocked in his chest. THe feeling subsided and he was fine.

Yesterday he told me that if his hands get hot or cold or feels things that are scratchy (like writing with a crayon that scratches paper funny, or chalk on a chalkboard), or hears sounds like scraping a fork on a plate he gets vibrations. The vibrations start in his head and travel all the way down to his feet. On a day when he is having them he will have lot's back to back throughout the day and they are very annoying to him. When watching him closely you can see the little twitch when they happen. Today he didn't have very many. He told me that this has been happening for a very long time, but they are just happening all the time and he is very annoyed by them and wants them to stop.

He is a very smart little boy, very active, and has a lot of friends. I can't help but feel like something is seriously wrong, but it has not been caught. What could this possibly be and what should my next move be? I feel like cardiac issues were ruled along with brain issues. But it sounds like he is describing something neurological. Please help!!

MSNik
07-09-2016, 09:42 AM
I am sorry you are going through this. I am sure you are scared and frustrated. Yes, it does sound neurological. I live with Multiple Sclerosis and although a few symptoms seem familiar, falling asleep is not one of them. MS causes extreme fatigue, but not the type which would make you fall over asleep without warning.
This sounds like narcolepsy. Has he been checked for this?

You need to talk to the neuro who examined him and find out if they want to do further testing, or where they would refer you. He obviously needs a specialist and the neuro at the hospital probably just wantd to treat what he was brought in for, without going the extra steps to find out what is the underlying cause.

Best of luck to you and your son...please let us know what happens!