Estée KlarThe Joy of Autism

I’ve taken a look at that and it doesn’t actually manifest (from what I’ve seen in videos) like Adam’s.

I am an RN long with being my autistic sons mama. He has many other health concerns related to prematurity & bad genes :) mine. I feel for you. I have often said that god sent him to my husband & I because we are nurses. Even with our back grounds there is an art to figuring these things when ASD is in the mix.
Tardive dyskinesia would have protruding/writhing tongue movements.
Seizure movements have a rhythm and are not usually consistent through out a day.
Our big one was always constipation-still is some how even though my guy has gotten moderate verbal skills @ 9 he can not process the sensation or articulate it.
Good luck

Sometimes it can present a bit atypically. If any meds have that listed as a possible side effect, I would bring the issue up with his doctors.

Joe

Sorry, I have no clue regarding seizure but did you see a doctor?

might be a good idea to see one if you haven’t.

Alain

Yes. Seen the doc. Waiting for EEG and other psychopharma appointments. It’s a process of elimination.

He is not constipated and all other health issues have been ruled out at this point. I appreciate everyone’s time in making inputs.

My jaws clench a lot and I cannot control it. I also used to get the myclonic (conscious) seizures – they’re scary as hell and hurt if one of your muscles happens to pull. Have you considered seeing a neurologist who specializes in movement disorders? Get an EMG (electromyelogram) done if you can. I used to work in such a clinic and we saw this sort of thing a lot (not with autism, but with other neurological disorders). This is why I hate the notion that ASD is “behavioural”… it’s not.

Yes, DJ. Definitely doing that. It sounds like we’re doing the right thing by Adam. It’s just difficult to wait when you see one’s child suffering.

Adam is doing okay right now. It was triggered yesterday by stress and lasted until I could get him to sleep by melatonin.

Question for you D.j.

Describe how it feels for you to have the seizure.

I have to think about the symptoms you’ve noted, Estée,will write more—how is he after sleeping?

Hi Estee,

I do craniosacral therapy with kids with ASD, and find that it is very helpful. Here’s some info about it http://fourdirections.wordpress.com/2009/11/26/craniosacral-therapy-for-kids/

Hope that helpful, as your blog has been so helpful to me.

My son Henry (15, who has autism and mental retardation) recently began getting “grand mal” seizures. We’d hoped he’d dodged that particular bullet but apparently not. Anyway, a few years ago he went through a period when he had what we thought were seizures, but this was diagnosed as stereotypy, instead. Probably not much help, but just in case…

I know how scary this kind of situation is. Warm wishes and the best of luck!

Kristina,
The sleeping has also been off. We landed in hospital over the weekend. We did blood work that all came out normal. So we have an EEG scheduled for this week because hospital couldn’t do it this weekend. If nothing shows up there, we are dealing with potential side-effects of Zoloft which he is also on, but for two years has shown no side effects (in fact the goal is have him grow out of his dosage but if this is all stress-related, then we have to look at that).

I’m also wondering, even though, Henry and I have been separated a year now, that all the back- and- forthing is causing him anxiety. He sees his half-sibs not that often as they are so much older and there are new people in his life….Adam is known to have delayed reactions.

Re: how does it feel to have the seizure? What happens for me is my muscles just start randomly spasming at various intensities. Sometimes, it’s just a tremor and sometimes it’s a hard spasm which will pull a muscle or cause a charlyhorse. It may be just one spasm and nothing after that, or it could be a few minutes of random spasms and shaking while I’m conscious. This is not a regular occurrence, but it seems to happen if I am very ill, have a very high fever or if I am under a lot of stress.

If I have a panic attack and cannot get down from it after a few minutes, I’ll get one of these as well. In 1999, I was very ill and under a lot of stress (2 jobs, working almost 18 hours a day). I would have 5 or 6 of these a day where the top half of my body would seize up during a panic attack and I’d be unable to move my upper body for almost an hour. A friend of mine who was living with me said that my pupils would dilate and stay that way for the whole time.

I know the stress is bad if I am jaw clenching all the time and cannot control it. That’s usually how it goes before the panic attacks and conscious seizures start.

Stress, illness, pushing myself to my limits (or being pushed to my limits by others) or extreme upheaval in my life usually cause it. This also happens because I feel like I’m in a rut and cannot get out of it or things are happening that are beyond my control and I feel totally helpless. This is the extreme cases of stress and such and have to build up over a long time.

Things that work to relieve it. Taking care of myself, not pushing myself too hard. A sudden big change, like a move or a new job (instigated by me or at least that I have control of) that works in my favour usually gets me out of it.

I don’t like to speculate on why this may be happening to Adam, but I know there have been some big changes in his life that he has no control over. It may have just built up to the point where his body is responding to some extreme internal stress for him. I know I tend to internalize my feelings to keep attention off of me. That’s why it happens to me.

Anti anxiety meds might be needed… or the Zoloft may be causing the problem. I’ve seen that happen in the clinic I used to work at.

This is really helpful, D.J. Adam is holding on and rubbing his legs a lot as well as his feet. The “charlyhorse” effect as you put it may be exactly what’s happening.

He’s been on such a low dose of Zoloft for two years now with no adverse side effects. That’s why I’m wondering why now. We increased his dose (still very low) after the spasms started and note that they began before the H1N1 vaccine too. I’m highly suspicious of delayed stress effect with all that’s been happening in Adam’s life, although checking EVERYTHING out now is a must. I just want to make sure all these new tests don’t add to much added stress. I feel like I’m the conductor in a complicated orchestration and Adam is the bevy of instruments.

Something else that might cause this is a vitamin D deficiency. (It’s happened to me) The symptoms include aching bones and muscles, as well as charlyhorses, etc. It might be worth getting a blood test done to see if Adam’s Vitamin D levels are ok.