Hmm where do I begin. I have a just turned 7 year old who has multiple medical issues most are simple diagnoses which i understand (ADHD, allergy induced asthma, gastro issues including GERD, and is being evaluated for OT coming up, he also attends pt for toe walking which i thought i understood on the basis it was muscle related however the therapists is beginning to believe its sensory related hence the OT eval) the biggest clueless point for me with him is neurological however.

The neurologist we started seeing when he was 5 gave a diagnosis of myoclonic jerks/seizures stating it was a seizure disorder. He has jerks 6 out of 7 nights a week(sometimes 7 out of 7) when he is roughly hitting REM sleep, which in our household we consider very mild, they do not wake him therefore we've learned to over look them but even being mild they're strong enough to lift his limbs, head and torso off the bed at times.

The mild version only occurs over a five min period with maybe only 3-5 jerks during this brief time and it does not wake him out of a sound sleep. I give this information as a comparison for his "bad episodes" which I'm about to describe. The "bad twitches" as my son calls them have only occurred 3 times in his life roughly about 2 yrs apart from each other (i count my blessings they are infrequent however due to the lack of frequency doctors are not as hurried to find the issue) our first run in with myaclonic jerks was a bad one at roughly the age of 2.5/3..

The jerks started when he was asleep and were severe enough to wake him out of a dead sleep the entire "episode" lasted approx 14 hour period of him jerking himself awake every time he tried to go back to sleep.

The emergency room referred him to a neurologist for an EEG which was deemed normal. At the age of 5 he had another bad episode which ran along the same time frame 14 hours of full body jerks every time he would try to fall asleep followed by a period of awake exhaustion which his head has a pasly like shaking movement and slight jerks through the head a neck area.

He was referred to the neurologist we are now seeing who ordered yet another EEG this one was deemed "abnormal but not enough to cause serious worry" it was suggested he start an anti convulsant (lamotrigine) which we did.

Our most recent "bad episode" occurred roughly 3wks to a month ago. This one has changed a little in the way his "twitches" occur (the previous 2 seem to start about mid body up then work they're way down to lower limbs the most current one seemed to work from the bottom up) this bout of jerks started at about 835pm over the yrs I've wised up a little and counted the number of jerks he had with in 10 mins periods over the 12.5 hours this one lasted. In the beginning of the 12-13 hour period he had 40 plus jerks which brought his legs (his torso then legs torso hands and head) off the bed each of the 10 min periods ended up with him awake and afraid. as the time progressed the number of actual jerks went to roughly 30 plus but as frequency went down the severity of movement went up.

I tried taking him to the ER only to be told he was on a "low priority" to treat list as its not considered a true seizure disorder at which point my motherly hackles were raised and i took him home with the theory that "twitching in the comfort of the bed was much better and safer then twitching himself off a waiting room chair. His neurologist has finally ordered an upcoming MRI and he went through another EEG last week( still waiting on results).

I've tried to do all the research i can, have logged many hours on youtube watching children who have been diagnosed as having the same thing however the severity is not the same (either too little or too great) nor are the general body movements that occur with his jerks. Does anyone know what this could be???

If someone has any advice to offer (or speculation) on what this may be even if its to say it sounds like a normal thing that happens with myoclonic jerks i would appreciate any answers to this post. Thanks so much for reading my" book" and sorry this post is so incredibly long.