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.

Almost forgot to add some possible important key facts in my hurry to see if others have experienced something similar... My son will sometimes "space out" he can be in the middle of a sentence at times and just go "nobodys home" on us. My sister has learned she can mention passing out candy or something and he'll zone back in but sometimes it takes a touch or saying his name loudly to bring him back to his normal self. We thought for the longest it was selective hearing at its best but i wonder sometimes. Also after bad episodes my son is off for days. Hes extremely sleepy (even after hes caught up on his sleep) and will fall asleep even while talking, his memory retention seems to go down after one (he doesnt remember say brushing his teeth 20 secs after doing it, things of that nature), and he has an extreme reluctance to go to sleep for a couple weeks after one for fear "the bad twitches" will come back. Dont know if this adds any clarity but I felt it should probably be added

Hi again,

I'm just a mum and my two children are adults now, but I remember being in a similar situation as you in trying to find out what was going on with my son in particular when he was little and dealing with many different opinions at the time from doctors.

14 hours!!! That's terrible for the little boy. No wonder he gets exhausted.

I know little regarding seizures but I know there are ambulatory devices (AEEG) that can be worn at home. I guess the doctors haven't seen your son have one of these episodes. Another thing that may help would be taking a video yourself. Considering he's asleep usually when these happen, it's not intrusive.

You mention he possibly spaces out, but he will respond to louder direction and touch when spacing out.
ADHD.
toe walking issues.
Asthma.
GERD.
and these espisodes with movement.

Good you're getting OT evaluation!

Does he take any medications for the ADHD, Asthma and/or GERD?

How is he doing at school?
Has he followed all his developmental milestones when he was little?
Is he a sociable little guy or not?
Has school mentioned anything out of the ordinary to you? Children spend a lot of the day in school so have you asked his teacher how he's doing in that environment.

Have a look at the sticky at the top of the Epilepsy Forum "Types of Seizures". There's an abundance of information there about different types of seizures although if you've been researching yourself you probably have read most of the descriptions already.

Do these movements only happen when he's in bed or asleep? What about when he's just walking around during the day?
He wasn't sick with anything before the very first episode that he had? No Strep. throat or anything like that which needed treatment?

So very sorry if I asked too many questions.

p.s. The Epilepsy Foundation - Types of Seizures

Edited to add: I had to change some things. Had trouble reading the block of text so missed some things.

Hi pixa-angel,

I'm sorry to read about your son, and what you've both been going through. I don't have any advice for you but I did want to welcome you to NeuroTalk.

I hope you're not offended, but I broke your initial post down into paragraphs to make it a bit easier to read.

Welcome again; I hope you soon get the answers that you need.

K im trying the quote thing so hopefully I wont miss answering any questions and thanks greatly for the reply!

1)Medications~ He is on an abundance of medications. He takes 4 a day for gastro issues, he is on 3 a day for allergies (to help with asthma flair up which is allergy induced), 1 seizure medication, and on 2 for asthma when he has flair ups. He is no longer on adderol (which for some reason his neurologist put him on even tho it red flagged with some of his other meds when i searched them) because his last bad myoclonic episode happened roughly 2 weeks after he was put on the medication.

2)School~ School is a sticky situation at the moment. He was in one teachers class (awesome teacher) at the beginning of the yr after first report cards they brought in an extra first grade teacher to the school and though i tried to let the principal know he didnt not handle change well they switched him into a class with the new teacher. She has a totally different teaching style and disposition i guess you can say then his original teacher so after the switch we noticed his grades falling etc. Im having to work with him at least 1-2 after school is over(basically being mama drill Sargent) just to help him retain what they've learned, his grades are still passing but as someone who sees the after math at home i can honestly say he is struggling to stay afloat, however if you ask the teacher only praises are sung. I requested testing for special education though and we have an eval for testing soon.

3) Developmental milestones~ i would have to say yes although my memory is horrible and i tend to always want to see positive the ones hes had were so slight they can be easily over looked. He had speech regression around the age of 1 due to needing tubes in his ears once we got the tubes he started moving forward again. Hes never been diagnosed (and i don't know if there is such a diagnosis) but even now he has problems trying to i think the term is self sooth? Which oddly enough seems to be getting a little worse as the yrs go by but not horribly so.

4) Sociability ~ He is fairly sociable. He has the normal wariness of strangers but all the parents of children from his school sing his praises about how much they hear his name from their children. The teachers at his school also go on about what a sweet child he is. However if you ask him he'll say he has no friends and no one likes him and unlike my nieces he doesn't have any friends who invite him over to play or anything.

5) Movements~ All of them typically occur while he's in bed right before REM sleep (which is typical for myoclonic jerks) and he typcially has none during the day unless its the day after one of his "bad episodes" then they can occur while hes awake as well as a palsy like head movement. What confuses me about the movements is the severity and the duration of them during the "bad episodes" they don't fit any of the research I've done on myoclonic jerks. The actual movements his body makes are also different, I've only seen one video on youtube of an infant that was even slightly similar. Also during the day he can be caught "zoning out" so to speak where as my family calls it the lights are on but no ones home.It typically takes touching him, calling his name loudly or saying it multiple times or my sister yelling theres candy to snap him back in. It doesnt happen everyday and I'm sure can possibly be attributed to the adhd but after reading of absence seizures recently I find myself wondering now.

6) Sickness~ No not that i know of short of the typical booboos and colds and such.

There was a period over the past few years where he did have strep every time we turned around but he still has his tonsils.One of the cases of strep he had was weird as well since it never showed on any strep tests, the only reason we knew he had to have it is because his hands and feet started peeling. I think the doctor called it scarlatina? Which i guess is only caused from untreated strep. One day though we just didn't have an issue with strep anymore. Now he rarely gets it.

It was a very stressful time for my family however when his first episode came due sickness in other family members etc (we had 2 family members die in the week his first episode occurred but neither were before his first episode) that day he was as happy as he always was then nothing out of the normal by that night when he went to sleep though is when his first one occured and it was bad enough to take him to the emergency room. None of them could say what it was besides a bad case of myoclonic jerks they sent him to a neurologist who put him on anti convulsants for roughly 2 weeks then they took him off again because he had no more activity like what had occurred.

The EEG was normal, and of story he had no need for the neurologist or anything. It wasnt until roughly 2 yrs later that he had another bad episode. Also as he gets older the nightly jerks are getting worse (in the aspect that now the very mild ones occur atleast 6 night out of every 7)

I hope I answered everything sufficiently I tend to be scatterbrained with details at times, and this week has me feeling kinda loopy lol (they added another test for the upcoming week for gastro lactose intolerance test :/ and his mri is also coming up) Oh and still no report back on his most recent EEG results. Will keep you posted tho! And thanks again its so nice to have someone to talk to !

Thanks so much ! And no not offended attall ! lol I tend to space off when Im typing trying to make sure i dont miss anything so its greatly appreciated! Im still learning this posting thing hopefully Ill get it down soon

Haven't read your last msg yet, but just wanted to say it was good to see you post. I was SO worried I'd chased you away with all my questions.

What do you mean by self sooth? You don't mean self stim do you?

No, no, no ! You definitely didn't run me away This week has been spring break for the kids and we've had a few appts for one child or another this week ...I felt bad it had taken me so long to respond!

I think the term they use with babies is self sooth. Where they learn to calm themselves down on their own with out a parent rubbing their back or talking to them. My son gets easily distraught at times sometimes in the blink of an eye (its gotten worse over the past yr or so) but when he gets like that he has a hard time calming him self down. Sometimes he doesnt even know why he is upset or crying just that he is.