So, That was weird!

[peglem]

This evening Allie had a major meltdown. I gave her some tylenol, which she had a bit of trouble taking because she was jerking her head. So, my husband is dealing with her legs, so she doesn't hurt me or herself by kicking and I've got the rest of her- she is trying to scratch, pinch, bite and head-butt me, while trying to gnaw her own arms. Then, in the midst of all this turmoil and struggle...she stops it, like somebody hit the "off"switch. Then she is perfectly still for about 30 seconds, and sits up and signs for her talk box. I don't know what triggered the meltdown or what caused the shut-off...puzzling. I've become more or less accustomed to the meltdowns, but haven't seen a shutdown since she was 2 or 3 years old.

[LIZARD]

(((((((((((Peglem))))))))))))) ((((((((((((((Allie))))))))))))))).

I wonder if it could have been a seizure. If it stopped as suddenly as it started, and especially if she hasn't had anything like this for years, it's something to consider. They can come in all forms. I had simple partial seizures for 25 years before we knew what they were. Please mention it to her doctors.

Good luck!

LIZARD :)

[peglem]

yeah, I'm thinking seizure. We're in the process of tapering up on lamictal- just started 2 weeks ago. She had a very tough time getting to sleep last night-kept waking up and running around, then returning to sleep. Had a tougher time getting up this morning for school. This always makes me feel like a crappy mom- I'm supposed to make it better, but I'm helpless.

[Isabelle]

:) :( :rolleyes:

[gynwhyver]

Lamictal is also noted for aggressive symptoms (geez, for that matter what seizure med isn't? Sorry, retorical question and sarcasm fully intended.)

Has anyone recommended melatonin for the sleep issues? My dd's psych and neuro has recommended this to help her sleep better.

I also suspect it could have been a sz from what you described.

I understand the helpless feeling. Been feeling it quite a bit myself over this stupid school issue (or lack of school issue). All I can say is, hang in there! (((HUGS))))

Gwyn

[PainInTheNeck]

Something kind of like this happens with my son too. If he has been asleep and we have to wake him when it has been less than an hour or two. Like if he falls asleep in the car or on the couch. Sometimes even if he was asleep and we go give him a kiss on our way to bed. He will wake up acting as though someone has just done something horrible to him. He usually cannot speak coherent words(this is the ONLY time he has speech problems). He will kick and growl and sometimes he will be able to speak and he will say "Why are you doing this to me?".

About a week ago we had the most wonderful experience. In a way it was a bit disquieting but mostly it was just really sweet. Instead of being all angry...he started laughing hysterically. He kept trying to say things but his words were totally wrong...not even words and then that would seem to make him laugh even more. My husband heard from the other room and couldnt tell if he was laughing or crying and so came to investigate. We both just sat with him while it continued for few more seconds and then he just laid down and was asleep. It lasted between 2 and 3 minutes. I touched his shoulder and asked him if he was ok and he was out like a light. No response and snoring within a minute.

If anyone is keeping score......I want the laughter more!!

[peglem]

Something kind of like this happens with my son too. If he has been asleep and we have to wake him when it has been less than an hour or two. Like if he falls asleep in the car or on the couch. Sometimes even if he was asleep and we go give him a kiss on our way to bed. He will wake up acting as though someone has just done something horrible to him. He usually cannot speak coherent words(this is the ONLY time he has speech problems). He will kick and growl and sometimes he will be able to speak and he will say "Why are you doing this to me?".

About a week ago we had the most wonderful experience. In a way it was a bit disquieting but mostly it was just really sweet. Instead of being all angry...he started laughing hysterically. He kept trying to say things but his words were totally wrong...not even words and then that would seem to make him laugh even more. My husband heard from the other room and couldnt tell if he was laughing or crying and so came to investigate. We both just sat with him while it continued for few more seconds and then he just laid down and was asleep. It lasted between 2 and 3 minutes. I touched his shoulder and asked him if he was ok and he was out like a light. No response and snoring within a minute.

If anyone is keeping score......I want the laughter more!!

Now that sounds like a seizue to me. Has he been checked for seizures? There are actually "laughing" seizures- they are called gelastic seizures and many times children will fall asleep after a seizure.

Gwyn, I don't think the rages are due to the AED because she's had them for years. Unless, its causing muscle/joint pain, She does seem like she's in pain, just can't figure out what hurts. It sometimes helps to massage her feet and legs, so I've been giving her cal/mag supplement. She eats bananas so I figure she gets enough potassium from that.

In retrospect, I think my little girl has been having seizures for years. It has been very difficult to get professional types to consider that because the kinds of seizures she has can be "explained" by autism- like autism explains anything:mad:

[Mother's Heart]

my son's neurologist always just assumed that he was likely to have seizures...because there's a high proportion of kids with Autism who have seizures.

[LIZARD]

my son's neurologist always just assumed that he was likely to have seizures...because there's a high proportion of kids with Autism who have seizures.

To this, we should ask, "Why??" This just proves that autism is neuro-based and not merely a behavioral disorder. After living 40 years with epilepsy myself, I believe the presence of seizures begs for an intense investigation as to why they occur.

LIZARD :)

[Lara]

my son's neurologist always just assumed that he was likely to have seizures...because there's a high proportion of kids with Autism who have seizures.

Wow, you know, I've been thinking about this same thing since I caught up and read the latest of peglem's posts yesterday. I remembered reading a topic on the 'Centre for the Study of Autism' site a long time ago. It actually scared me when I read it because it wasn't something I'd been aware of at the time although I do recall reading something else about seizures on Tony Attwood's research papers section of his site.

Here's the article I remember..

http://www.autism.org/seizures.html
by Stephen M. Edelson, Ph.D.
excerpt from the article here... About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body. Sometimes these seizures are noticeable, (i.e., associated with convulsions); but for many, they are small, subclinical seizures, and are typically not detected by simple observation.

Some possible signs of subclinical seizure activity include:

* exhibiting behavior problems, such as aggression, self-injury, and severe tantrumming;
* making little or no academic gains after doing well during childhood and pre-teen years;
* and/or losing some behavioral and/or cognitive gains.

darn, they've changed their whole site. There was something else in there that I wanted to post, but it is all changed now so can't find it yet.

[gynwhyver]

Peg:

Funny you mention the neuro is explaining sz type symptoms away as autism. Our neuro is convinced that her epilepsy is "causing" the autism symptoms and that everything - the sz, ocd, autism, dev. delay, behaviors are all neurologically based. That's not to say that there's not something either genetically or immune-wise going on causing the neuro problems, but that in essence, everything is neuro-based. And from what I've seen and we've been through, I have to agree. Her EEGs were a mess with all the electrical activity going on. Sometimes I forget how much that impacts her.

I only mentioned rages and behavior stuff in relation to AEDs because Lamictal is new for your daughter, and well, you know how all those inserts for AEDs warn of "unusual" or "rare" side effects? We've been "fortunate" :rolleyes: to have seen just about every "rare" side effect, especially behavior changes, with every AED we've tried. She's been taking AEDs for 7 yrs now. We tried combinations of 5 different meds until we found something that is effective (Keppra), with Diastat and Ativan thrown in for emergencies for good measure. Until she's gotten used to the new meds, she's always exhibited changes of some form or another from each med she tried. That's why I wondered if Lamictal couldn't be doing the same.

Hope you figure out what's going on soon with your dd.

Take care,

Gwyn

[peglem]

Peg:

Funny you mention the neuro is explaining sz type symptoms away as autism. Our neuro is convinced that her epilepsy is "causing" the autism symptoms and that everything - the sz, ocd, autism, dev. delay, behaviors are all neurologically based. That's not to say that there's not something either genetically or immune-wise going on causing the neuro problems, but that in essence, everything is neuro-based. And from what I've seen and we've been through, I have to agree. Her EEGs were a mess with all the electrical activity going on.
Gwyn


See, I think Allie's autism symptoms are seizure related, as well as her regressions, and I have for quite awhile. The problem is that she's never really had any tonic-clonic type seizures and neurology appointments have only been here and there by referral when I get pushy with PCP's. They keep looking at it bassackwards- thinking anxiety is triggering rage and behaviors. I think there is something triggering the anxiety- like pain and/or seizures. So, I'm hoping if the AED helps with seizures, we should see less SIBs. Anyway, i'm being believed and helped now and can only go forward- no do overs.

[Tootsie]

The behavior associated with awakening from sleep, sounds very similar to something called "Night Terrors." This is basically a sleep disorder, as the child is still asleep but can be screaming, talking or totally "out of it."

It is seen in children without any neurological diagnoses or other physical or behavioral issue and can have a hereditary component. Usually, the child outgrows these episodes.

I can't help but wonder if some of the medication is triggering the episodes is susceptible children. Cheerio.

[gynwhyver]

Tootsie:

What you described has happened to my dd with Keppra. When we first started her on it (in conjunction with Depakote), she would wake up frantic, screaming and crying in the middle of the night. She had no clue what she was doing and no memory (at least that she could share if she did) of it. The only thing that seemed to help her was to swaddle her in blankets and rock with her on my lap until the screaming subsided. Fortunately, as her body adjusted to the Keppra, those "terrors" stopped. But it was quite frightening when it was happening.

Peg:

So glad you're getting the help she needs. With my dd, we've seen so many different types of seizures, including non-convulsive ones, and some that are so subtle and so brief that if you blink you might miss them. Even experts have missed them. Now that I think back, once she was hospitalized for "nonconvulsive status epilepticus" (basically she was sz almost non-stop) but there weren't overt convulsions you could see. But you could tell if you looked closely at her that she was not aware of her surroundings or of what was going on. It was almost like a wall had fallen down over her eyes. Her color was off as was her breathing. Neuros in a major Children's Hospital were to have orders to give her something to bring her out of status, but they couldn't find the orders, and because she wasn't overtly szing, then didn't do anything for her despite my pleading (and using correct terminology). They left her like that overnight. Needless to say when her neuro got there the next morning and found out what happened, she was livid!

I too hope the AEDs settle down the SIBs. I wish that more doctors would pay attention to that "mommy radar" - usually if you've got a gut feeling about something, it's more than likely true, and if you think the anxiety could be tied to sz, it probably is. The anxiety itself could be a type of sz. I'm so glad I've finally got someone that takes me so seriously. I hope you do too.

Do you think a video EEG (VEEG) would help figure out what's going on? We had this done to see if we could pinpoint where the sz were originating and as a first step to see if surgery would be an option (it's not, too much of her brain is involved). It's not fun, and can last several days if not longer (ours was 8 days), but was very informative.

Take care,

Gwyn

[peglem]

Do you think a video EEG (VEEG) would help figure out what's going on? We had this done to see if we could pinpoint where the sz were originating and as a first step to see if surgery would be an option (it's not, too much of her brain is involved). It's not fun, and can last several days if not longer (ours was 8 days), but was very informative.

Take care,

Gwyn

We did an 8 day Veeg in April- lots and lots of abnormal activity, but no seizures and none of the episodes we think are seizures. She did have a couple of meltdowns though. Our follow up with the neuro was not until the end of June. She said that although there were no seizures on the eeg, the abnormal activity was consistent with somebody who is seizure prone and what I described did sound like seizures...so she's treating it.

[milivica]

Hi Peg, I really have no knowledge of seizures or anything related to them, I want you to know I'm following the thread, and feel just rotten that on top of the friggin step (oh yeah, and autism) she and you have this also to go through. I'm waaaaaay over here not even living in your home, and feel like "what else! what else is supposed to happen to this kid" - very frustrated, and very sad about it all. Just want you to know she on my mind every day every time you post about her, you too of course.

Mili

[peglem]

Hi Peg, I really have no knowledge of seizures or anything related to them, I want you to know I'm following the thread, and feel just rotten that on top of the friggin step (oh yeah, and autism) she and you have this also to go through. I'm waaaaaay over here not even living in your home, and feel like "what else! what else is supposed to happen to this kid" - very frustrated, and very sad about it all. Just want you to know she on my mind every day every time you post about her, you too of course.

Mili

Thanks for thinking of us, Mili. I'm so hoping that this will finally help and give us some explanation for many of Allie's problems. She's a complicated little mystery for sure. But, I'll tell you WHAT ELSE? She is beginning to go through puberty and What else is what the heck we're gonna do about her period/and the cramps and what not that go along with it. She rips her clothes off as soon as she gets home, everyday and its an exhausting task to get them back on and keep them on....Y'know how our kids are about things having to have a reason that makes sense. I can't think of a good logical reason why people wear clothes, especially in their own home when they are more comfortable naked. Sometimes it works to shut down whatever she's doing and tell her she can't do it w/o clothes on, but the minute I turn away, she strips again.

Everytime I try to talk to her about the coming physical changes, she runs away- she wants no part of this!

[gynwhyver]

Peg:

What kind of abnormal activity was noted? Do they know where it was originating? I have an few ideas, so if you don't mind sharing, I may be able to look some things up, give you a few new leads.

[LIZARD]

But, I'll tell you WHAT ELSE? She is beginning to go through puberty and What else is what the heck we're gonna do about her period/and the cramps and what not that go along with it. She rips her clothes off as soon as she gets home, everyday and its an exhausting task to get them back on and keep them on....Y'know how our kids are about things having to have a reason that makes sense.

Puberty is a known "target time" for either improvement or worsening of szs. It's especially difficult when the szs don't manifest as "classic" szs but can anything--tantrums, SIBs, bouts of confusion or depression, etc. I would press this matter with her doctors. Hormones kicking in can really rake a brain that's seizure-prone. Been there, done that. :rolleyes: Even at 40, that's a problem for me. Also, don't dismiss the idea of any meds resulting in some of this, especially if they're new, but even if they aren't, a change in hormonal makeup can bring on new reactions and sensitivities.

((((((((((((((((((HUGS))))))))))))))))), and good luck!

LIZARD :)