mm9221
02-05-2004, 12:31 PM
I don't know what to think. My little one started doing this thing while watching tv and even while we were out this morning: blinking his eyes as though something was wrong with them. I waved my hand in front of him several times and he didn't seem to see me...a couple of times he did and pushed my hand away. He's almost three.
He fell asleep in my lap a bit ago-----the pattern for other seizures----and has had the myoclonus----and I know that's what it is. They haven't seen anything that looks like seizure on the EEGs. Is this a type of seizure?
Thanks,
Elaine
He fell asleep in my lap a bit ago-----the pattern for other seizures----and has had the myoclonus----and I know that's what it is. They haven't seen anything that looks like seizure on the EEGs. Is this a type of seizure?
Thanks,
Elaine
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LisaGuthrie
02-05-2004, 12:58 PM
Hi Elaine,
Very well could be... What other types of seizure activity does your son have? Is it controlled? Is he on seizure meds? I think I should know this - I believe I've spoken to you in the past. So please forgive if I'm asking a second time! :)
My oldest was treated for ADHD for years and come to find out that most of what we were seeing was in fact a type of seizure. She calls it "Going Away". She said that she could hear what was going on around her, but couldn't tell what it really was she was hearing or at times she could see everything but not have sound to her world - and she was unable to respond during these spells. But it was this strange little eye thing, not blinking so much as looking through you.
Now we know what it is/was and she's off ADD meds and only on anticonvalsants. It's made a huge difference in her life!
Hope that helps... even a little!
Light
Lisa and kids
Very well could be... What other types of seizure activity does your son have? Is it controlled? Is he on seizure meds? I think I should know this - I believe I've spoken to you in the past. So please forgive if I'm asking a second time! :)
My oldest was treated for ADHD for years and come to find out that most of what we were seeing was in fact a type of seizure. She calls it "Going Away". She said that she could hear what was going on around her, but couldn't tell what it really was she was hearing or at times she could see everything but not have sound to her world - and she was unable to respond during these spells. But it was this strange little eye thing, not blinking so much as looking through you.
Now we know what it is/was and she's off ADD meds and only on anticonvalsants. It's made a huge difference in her life!
Hope that helps... even a little!
Light
Lisa and kids
mm9221
02-05-2004, 05:21 PM
"Very well could be... What other types of seizure activity does your son have? Is it controlled? Is he on seizure meds? I think I should know this - I believe I've spoken to you in the past. So please forgive if I'm asking a second time! :)"
Hi Lisa,
According to the neurologist, he isn't having regular seizures, he's just had a couple of grand mals after febrile seizures started in November. The EEG has been normal and the Video EEG was determined to NOT be epilepsy. :rolleyes: However, he is on Trileptal for preventative.
What I didn't mention is that I started to reduce his medication last week because it doesn't make much sense to keep him on meds if he doesn't have epilepsy. The speech therapist who has been coming to see him told me she is concerned because he has regressed in his ability to sit still and attend. He can't tell "stories" like he once did and he is SO hyper----more than he ever used to be.
I want to call the neurologist, but what I'm really tempted to do is taper him off the meds and see what happens. I'm also in the process of looking for a second opinion. It's not because I don't like his neurologist or think he's no good. On the contrary, I think he's great. It's because in the beginning, the docs were concerned about metabolic issues and syndromes and now they say he's normal. "Let's keep him on the meds for a year in stead of two and take him off if his EEG remains normal." So, why the meds at all? What about the other anomalies???
Sorry------you're getting my rant today, but I am very frustrated. I'm not interested in putting my son through more testing, but if it's something else, then I want to know what!
Thanks for listening,
Elaine
Hi Lisa,
According to the neurologist, he isn't having regular seizures, he's just had a couple of grand mals after febrile seizures started in November. The EEG has been normal and the Video EEG was determined to NOT be epilepsy. :rolleyes: However, he is on Trileptal for preventative.
What I didn't mention is that I started to reduce his medication last week because it doesn't make much sense to keep him on meds if he doesn't have epilepsy. The speech therapist who has been coming to see him told me she is concerned because he has regressed in his ability to sit still and attend. He can't tell "stories" like he once did and he is SO hyper----more than he ever used to be.
I want to call the neurologist, but what I'm really tempted to do is taper him off the meds and see what happens. I'm also in the process of looking for a second opinion. It's not because I don't like his neurologist or think he's no good. On the contrary, I think he's great. It's because in the beginning, the docs were concerned about metabolic issues and syndromes and now they say he's normal. "Let's keep him on the meds for a year in stead of two and take him off if his EEG remains normal." So, why the meds at all? What about the other anomalies???
Sorry------you're getting my rant today, but I am very frustrated. I'm not interested in putting my son through more testing, but if it's something else, then I want to know what!
Thanks for listening,
Elaine
LisaGuthrie
02-05-2004, 06:04 PM
Hey Elaine,
:) Girl rant away... it's what gets us Momma's through this somedays. Tomorrow it may be me!
I have 2 E kids, Jenny 15 (mentioned above) and Jake 2.
We were treating Jenny for ADD well before we even thought about Jake... In March 00 her peditrician (sp) asked her how she was doing on the Concerta. And Jenny tells her this wild story about "Going Away". The ped sent her out and said that she had just discribed a text book example of an Absent Seizure! Blow me away... did testing - EEG *normal* MRI *normal* Bloodwork *normal* so we leave it alone and continue treating ADD.
Along comes baby Jake - and his rockem' sockem' Grand Mals (started at 10 mths)... Is there a family history they ask... Well not really, only a hunch and normal tests with Jenna. We left her meds be - based on the normal test. She had a REAL seizure while Jake was in the hospital last May. IT was witnessed by a whole group of kids in the lunch line at school...
Back she goes for more testing. ALL of it normal! She decided to wait until she returned from her Dads before starting meds. What a difference!
You are right to contact another Dr. Jake's neuro was the first one to suggest it. He wanted a second oppion himself when he got so bad... That's a smart move. Jake's neuro's trade off visits and copy each other in files. Just a second set of eyes!
There are many people on the board who have normal EEGs and MRIs who have all sorts of seizures, including activity that looks so much like ADD - it's scary.
Trust me I can so relate to what you are saying about taking him off the meds. I want both my guys off SSSOOO bad. But, please be careful and take him down very - very - very slowly if you do it without a Dr, and know that he could have the Grand Mals again, even without the fever.
As a side note: Jake sees a SP as well. He lost all his words during a huge round of activity during the summer. He has also been diagnosed with Sensory Intergration Dysfunction. This more then anything makes if hard for him to sit still and attend. You might want to ask your SP if she knows anything about it. If not maybe look into having an OT specially trained in the area to evaluate him. Just a thought!
Love and light
Lisa and kids
:) Girl rant away... it's what gets us Momma's through this somedays. Tomorrow it may be me!
I have 2 E kids, Jenny 15 (mentioned above) and Jake 2.
We were treating Jenny for ADD well before we even thought about Jake... In March 00 her peditrician (sp) asked her how she was doing on the Concerta. And Jenny tells her this wild story about "Going Away". The ped sent her out and said that she had just discribed a text book example of an Absent Seizure! Blow me away... did testing - EEG *normal* MRI *normal* Bloodwork *normal* so we leave it alone and continue treating ADD.
Along comes baby Jake - and his rockem' sockem' Grand Mals (started at 10 mths)... Is there a family history they ask... Well not really, only a hunch and normal tests with Jenna. We left her meds be - based on the normal test. She had a REAL seizure while Jake was in the hospital last May. IT was witnessed by a whole group of kids in the lunch line at school...
Back she goes for more testing. ALL of it normal! She decided to wait until she returned from her Dads before starting meds. What a difference!
You are right to contact another Dr. Jake's neuro was the first one to suggest it. He wanted a second oppion himself when he got so bad... That's a smart move. Jake's neuro's trade off visits and copy each other in files. Just a second set of eyes!
There are many people on the board who have normal EEGs and MRIs who have all sorts of seizures, including activity that looks so much like ADD - it's scary.
Trust me I can so relate to what you are saying about taking him off the meds. I want both my guys off SSSOOO bad. But, please be careful and take him down very - very - very slowly if you do it without a Dr, and know that he could have the Grand Mals again, even without the fever.
As a side note: Jake sees a SP as well. He lost all his words during a huge round of activity during the summer. He has also been diagnosed with Sensory Intergration Dysfunction. This more then anything makes if hard for him to sit still and attend. You might want to ask your SP if she knows anything about it. If not maybe look into having an OT specially trained in the area to evaluate him. Just a thought!
Love and light
Lisa and kids
mm9221
02-06-2004, 12:41 AM
Thanks for your encouragement Lisa. Since Chris will be turning three in less than two weeks, he's being tested next week for the preschool program in our school district. I suspect he will qualify.
I just don't know what to think. I did call and have the ball rolling on the second opinion. The doctor I want him to see has a 1-2 year wait, BUT they asked me for office notes and tests----all of which I can get my hands on. I am going to try and round up the rest of the information I'm missing next week. At least I think I will be able to get the muscle biopsy done. Looking at the mitochondria would be a big help I think.
Anyway......thanks for the heads-up on the ADHD. As long as he keeps developing and going onward and upward, that's good. :)
Elaine
I just don't know what to think. I did call and have the ball rolling on the second opinion. The doctor I want him to see has a 1-2 year wait, BUT they asked me for office notes and tests----all of which I can get my hands on. I am going to try and round up the rest of the information I'm missing next week. At least I think I will be able to get the muscle biopsy done. Looking at the mitochondria would be a big help I think.
Anyway......thanks for the heads-up on the ADHD. As long as he keeps developing and going onward and upward, that's good. :)
Elaine
LisaGuthrie
02-06-2004, 07:26 AM
:) I hear you on the development Elaine... Jake is about a year behind his peer group. But, he's been seizure free for 137 days!! His physical side is catching up faster then the verbal. But, I keep looking up as well. I hear new sounds and see less drooling everyday! I think Jake will go to the preschool progran here as well. His next EIP eval is 2/13.
Keep me posted on Chris' progress.
Lisa
Keep me posted on Chris' progress.
Lisa
gagcas
02-06-2004, 08:56 AM
hi Elaine. what you are explaining is exactly how this all started with my gage. except for the febrile seizures. his started out as blinking and hyperactivity too. and a little temper to add some spice. we were going to treat him for adhd untill his EEG came back for seizure activity. completly blew me away. i believe you are on the right track getting a second opinion. lisa had some good points. gage will be 5 on the 22nd of february, and we think he has had epilepsy since he was 2 and having night terrors and didnt realize what it was till this past november, to look at him you wouldnt even know he had it because it is absence as well. i do because i know what im looking for. but anyone else would just think he was an over active child. the meds for "E" have helped with his temper as well as the unability to sit still and concentrate. we are in the process of trying to adjust it because it seems he has adjusted to it and not working quite as well. sometimes it just helps to read other posts in here as well. i have found out alot of info from alot of these guys. the sensory intergration that lisa was talking about i will be discussing with the neuro on the 25th. she brought that up awhile ago and i read on it and i think gage is a classic case. i hope you find what your looking for and they are able to help you on your long journey thats about to start.
mm9221
02-06-2004, 07:12 PM
Hi Jennifer and Lisa,
It's interesting when you look at sibs, because his older sister shows signs of ADHD. She doesn't seem to pay attention at times. She also suffers from night terrors and sleepwalks. I don't know what to think about all of this. It's so confusing. I don't want him to be epileptic, but I do want to know what's going on. I have found that reading here is helpful. He hasn't done it that I observed today. That's a good thing.
Thanks for the support. I have so much going on. I'm ready for the world to stand still under my feet for awhile. :)
Elaine
It's interesting when you look at sibs, because his older sister shows signs of ADHD. She doesn't seem to pay attention at times. She also suffers from night terrors and sleepwalks. I don't know what to think about all of this. It's so confusing. I don't want him to be epileptic, but I do want to know what's going on. I have found that reading here is helpful. He hasn't done it that I observed today. That's a good thing.
Thanks for the support. I have so much going on. I'm ready for the world to stand still under my feet for awhile. :)
Elaine
Danaseeks
02-06-2004, 07:54 PM
hello mm9221 I don't know if this is any help at all, but often someone having myoclonic seizures will also have absence seizures. They don't generally occur at the same time though. Absence seizures are also often misdiagnosed as ADD because it makes it difficult to concentrate. I have both and most of my EEGs were normal. Good luck with your son. Dana
mm9221
02-07-2004, 12:42 AM
Thanks Dana. This is all new stuff for me and I don't know what to think about it sometimes. I was told the myoclonus he had while sleeping is not epilepsy and nothing showed on the EEG. I think a second opinion is worth pursuing though.
Elaine
Elaine