Do seizures look like shivers? - Mothering Forums

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#1 of 11 Old 08-30-2008, 10:21 PM - Thread Starter
 
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I am back with another question.

I can not tell you all how much I appreciate you. Often when I write I am overwhelmed with information and trying to figure it all out. You are so wonderful and patient and helpful! I love all of you!

Okay to my question.

Do seizures look like shivers? My DS (30 months) has several struggles
-verbal apraxia
-sensory integration disorder
-hypotonia
-? GERD
-eating difficulties
-he signs pain and then points/touches/kisses his legs and sometimes also his head - no cause for the pain can be found, but it keeps him up at night
-his toes have been progressively pointing in more and more
-he has started stiffening his fingers in strange positions while walking
-before I was taught how to brush him, he had 25-40 tantrums a day and would hit himself and throw himself on the floor

Doctors have asked me if he has seizures and I have always said no, but now I am not sure.

At speech therapy on Friday morning DS sat in front of the therapist on a mat. I noticed DS (? 1 sec) shiver about 4-6 times over about 3-5 minutes. I wasn't paying much attention and I really don't know how long or how many. I didn't think it was cold. I mentioned to the therapist that I was surprised that he was shivering. It was just weird. The last time he did it she commented about it and kinda asked what he was doing. I said shivering. I thought that was a silly question at the time. Now I want to talk to her again and ask why she asked me. I want to know what she was thinking. She also commented several times that he looked really sleepy. I then looked at his eyes and thought he did look sleepy. I thought that was strange but passed it off as nothing. Now tonight my mommy brain is worrying and I can think of times in the past that he has shivered repeatedly and it looked strange. I don't know why I thought it looked strange. I don't remember anything specific about his eyes.

He zones out often, but I never ever thought of that as a seizure.

I want to get this all straightened out for him. I am at least an hour away from any cities. We have very little resources and I am not sure what to do. Getting into specialists has been very hard and time consuming and therapies are hard to find. Our school district does not summer programs and most of my concerns have been during this summer so I have had no help. DS being in pain and my not knowing how to help him is bad. The pain does not affect his play, but it does affect his sleep. His sensory integration disorder has affected his pain response, he doesn't cry with blood draws and so I worry about how much damage he may not feel and how bad it might be and he doesn't feel it.

I am tempted to take him to Mayo or the Cleveland Clinic and just get a diagnosis so I know how to help him. I am so frustrated on not knowing what to do or where to turn. The speech therapist has never helped a child with apraxia before. We went to the Kaufman Center for a diagnosis, but that is HOURS away.

What do I do next? Is there a chance these could be seizures? What is causing all of this? Why? I just want it all to get organized and happen.
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#2 of 11 Old 08-30-2008, 11:55 PM
 
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They do sound like they could be seizures, and it also sounds like possibly there could be something progressive going on with him. Or maybe nothing.

Has he ever had a metabolic workup?

I think it would be good to get a full workup and diagnosis, just to make sure everything's okay.
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#3 of 11 Old 08-31-2008, 11:09 AM
 
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Hi Mahre,
I am sorry that you have this new worry. (((hugs)))

The nature of the sz beast is that it can look like just about anything. And yes, from what you described, it certainly can be a sz. Are you or the therapist able to communicate with him while these shivers are happening? Does your ds seem out of it, tired or dazed after the shivers? Any drooling or slurring of words? Does he feel the need to lay down after?

Follow your mommy gut and videotape these episodes if you can, then show them to his neuro. and if he dismisses it (our neuro. #3 did) and you are not comfortable with what he/she is telling you, find someone else that will pay attention to your concerns

My 2-1/2 yrs. old dd Devon has sz as well. Hers are the tonic jerk variety. It took moving a MOUNTAIN to get the dr.s convinced that she was having sz. She too looks sleepy a lot of the time and zones out.

I really hope its not sz but you know there are ways to treat them if they are.

(((more hugs)))


Mary:

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#4 of 11 Old 08-31-2008, 12:55 PM
 
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As a pp mentioned, seizures can be so different and so subtle.

I was never able to get anything on video. My seizure journals were not useful because I was rarely sure if something was a seizure or not. I kept hearing about parents going in with video and journals and felt like a horrible mom that I didn’t have all that – don’t beat yourself up if you cannot provide documentation. However, I’ve found the doctors take it more seriously, especially at the beginning, if you can provide something. According to the EEG's my daughter is having seizures - lots of them. However, there are normally very few outward signs. Like you, I suspected seizures based upon her 'zoning out', staring, acting oddly, melt downs, and occasionally tremors in her hands and feet. The tremors were seen by one of her therapists. Having the therapist's note in my hand helped the pediatrician finally listen to me and made me stop doubting myself. That is when I demanded an EEG – 2.5 years after I noticed the first tremor. As you know, adding other medical issues into the mix makes it even more difficult to tell if the behavior is seizure related. My daughter has sensory issues and possible ASD. She also lost speech for six months and considering the location of her seizures her loss of speech c/b seizure related. Besides the loss of speech she was not developmentally delayed so the ped kept telling me she could not be having seizures.

I’m not sure where you are located but you mention Mayo…Our current nuero is at Mayo – she also specializes in metabolic disorders. (PM me if you want her name.) Our first two were at University of Chicago. After our Oct appointment we will be making the decision to continue the trips to Mayo or switch back to a Chicago or Indy hospital. I would like to find a nuero that will consider lessoning my daughter’s meds. (Both of my children see neuros so we’ve had to do a little changing over the years.)

Go with your gut. I allowed the pediatrician to talk me out of my suspicions – partly because I wanted to believe she wasn’t having seizures.

One more thing…You can ask your ped for an order for a 1 hour EEG and have it done locally. Many times seizures won’t show up on this type of EEG but if they do, which was our case, I think you can get in to see a nuero sooner. Originally we were told there was a six month wait for my daughter to see the neuro; and my son was already a patient! Once we sent over the EEG results they saw us within the week.

Sorry for the long post!
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#5 of 11 Old 08-31-2008, 06:17 PM
 
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While I agree with previous posters that seizures can look like shivers, and I really think it's a good idea to capture them on video if possible, I wanted to share that my son's infant and toddler "shivers" were not seizures. My son would shiver often, and he would get a weird expression on his face at the same time. As it turned out, this often happened while he was eating and also when exposed to a new type of sensory stimulus, such as sand on a beach. My child, too, has minor sensory integration issues and the shivering was a response, I guess, to the unpleasant sensations that caught him off guard. I did video my son, and I also had him checked out by a pedi neurologist. He'd had an EEG at a very young age because I was concerned about something else. Just wanted to give you another possibility.
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#6 of 11 Old 09-01-2008, 12:00 AM
 
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It sound suspicious of SOMETHING. I agree with having a complete metabolic work up.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#7 of 11 Old 09-02-2008, 11:16 AM - Thread Starter
 
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Thank you for your help.
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#8 of 11 Old 09-02-2008, 04:30 PM
 
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Go get an EEG done. The results of the test is pretty accurate.
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#9 of 11 Old 09-02-2008, 05:23 PM - Thread Starter
 
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Thank you the doctor thinks it could have been a seizure and he has ordered an EEG and an MRI. Thank you!
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#10 of 11 Old 09-02-2008, 05:28 PM
 
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FYI, if the EEG is normal and you're still noticing suspicious behavior I would push for a longer EEG. My son's 30 minute EEG was normal but two weeks later he had a 24 hr. VEEG done and it was very abnormal.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#11 of 11 Old 09-04-2008, 01:52 AM
 
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Glad to hear the ped took you seriously. The MRI is so important, moreso even than the EEG. There are so many things that could be going on. Glad to hear the doctor's on top of it.
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