My son was admitted yesterday for his sedated MRIand EEG. We spoke with the dr last night and his MRI looked great which is a relief. He has not had any episodes during his stay so we will be discharged some time this morning. Whereas I am thrilled by the MRI results it is little frustrating to be leaving with still no answers. The neurologist seems comfortable with the fact that everything is ok because nothing happened here....but what about last week when his head was shaking and he wasn't responding to me? I know his spells are few and far between, but something IS going on. Has anyone else experienced this and how do you get doctors to take you seriously?
Sons MRI and 24 hour EEG
- Thread starter Msimpson
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Alexi'sMom
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Msimpsn,
My oldest son had a 4 day video EEG when he was young. Not one episode the whole time. Yet for years he had what I now know to be simple partial seizures (or whatever the name is). He's struggled in school. All his EEG's have been abnormal, but because these episodes only last a few seconds, with no after affects, the doctors have continued to chalk it up to daydreaming and ADD. This last year or so he's seemd to grow out of them or they've become so few and far between they haven't affected him to the extent they did when he was younger. Recently my daughter was diagnosed with Complex Partial Seizures. Now that I know what was happening with my son, I won't let the doctor's take her situation lightly! If you can't get answers from the neurologists you're currently seeing, go to a different one. One who specializes in children. What were his original EEG results after last weeks episode?
Stacy
My oldest son had a 4 day video EEG when he was young. Not one episode the whole time. Yet for years he had what I now know to be simple partial seizures (or whatever the name is). He's struggled in school. All his EEG's have been abnormal, but because these episodes only last a few seconds, with no after affects, the doctors have continued to chalk it up to daydreaming and ADD. This last year or so he's seemd to grow out of them or they've become so few and far between they haven't affected him to the extent they did when he was younger. Recently my daughter was diagnosed with Complex Partial Seizures. Now that I know what was happening with my son, I won't let the doctor's take her situation lightly! If you can't get answers from the neurologists you're currently seeing, go to a different one. One who specializes in children. What were his original EEG results after last weeks episode?
Stacy
He has only had two EEG's. The first one was done on his first appointment with the pediatric neurologist and the 24 hr EEG being the second. Both have been normal. He first began seeing the neurologist because he had hand tremors. When we first saw the neurologist and explained to her what was going on and some of the strange things we had seen she said she it sounded like he was having seizures and that we might be seeing the after effects from it. Along with the tremors/seizures he has speech and fine motor delays, and low muscle tone.
Alexi'sMom
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WOW your story is quite similar to my now 16 year olds story. He was born with no muscle tone and his milestones were very delayed. We had him in every kind of therapy you could think of. He postured in both his hands and feet. In the beginning his EEG's were normal too. Unfortunately, this really could be due to his lack of muscle tone. Just trying to use those muscles alone can cause tremors. Also, if he has any kind of brain damage (my sone's never showed up on any scan or test) he will have weird episodes that are unexplained and mimmick seizures. We finally had a neurologist state his damage was so deep in his brain no scan was ever going to see it. Clearly by his actions and slowness to learn or reach a milestone was enuff. I hope you have him in physcial, speach and occupational therapy. It was a God send for us. He's now a normal 16 year old other then the seizures that have never been treated 
( He is just like any other child Hang in there and keep fighting for you baby! We never did get a diagnosis on my son. He also had hand tremors, feet remors for many years. Eventually once he got stronger they subsided.
( He is just like any other child Hang in there and keep fighting for you baby! We never did get a diagnosis on my son. He also had hand tremors, feet remors for many years. Eventually once he got stronger they subsided.Get them to keep looking if you think something is up. My now 18 month old has had 5 EEG's and it was only his last which showed slower brain waves on the back right of his brain. The first 4 were clear. His MRI which his Nureo didn't think would show anything did but instead of giving us answers has just made his Nureo and his other specialists even more confused.
I was sent home from the children's hospital being told its just Shudder Syndrome he will grow out of it. I even rang up and tried to talk to the nureo we saw in hospital and expalin his seizures had increased to 150 a day, thankfully no more days like that, and that he was vaguing out and falling off my knee. Bascially I was dismissed. I am just so glad now that I found a fantastic Nureo who I am sure originally thought my son was "going to grow out of it" as well but kept watching his video's and reading the journal both his child care and my husband and I wrote and something he said in his gut said something is NQR. So he has kept in contact with us via weekly emails and appointments every month or 2 and now it seems we are finnally starting to uncover what may be causing my sons condition. These last 11+months feel like a life time and in reality it has been my sons life being only 18 months old.
Keep looking into it if you are worried.
I was sent home from the children's hospital being told its just Shudder Syndrome he will grow out of it. I even rang up and tried to talk to the nureo we saw in hospital and expalin his seizures had increased to 150 a day, thankfully no more days like that, and that he was vaguing out and falling off my knee. Bascially I was dismissed. I am just so glad now that I found a fantastic Nureo who I am sure originally thought my son was "going to grow out of it" as well but kept watching his video's and reading the journal both his child care and my husband and I wrote and something he said in his gut said something is NQR. So he has kept in contact with us via weekly emails and appointments every month or 2 and now it seems we are finnally starting to uncover what may be causing my sons condition. These last 11+months feel like a life time and in reality it has been my sons life being only 18 months old.
Keep looking into it if you are worried.
KarenB
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We had the same thing happen when our son had his first 48 hour EEG -- he was having several seizures a week, but none happened while hooked up. Even though he has grand mal (tonic clonic) seizures, his EEG is normal when not having a seizure.
I would suggest keeping your camera handy, and next time he has a seizure, try to video it, and then you can show that to your doctor. Just seeing the nature of the seizure will be helpful for him in diagnosing meds. Our son was having more severe seizures than our neurologist realized (because he usually had them at night, we never caught on tape), and she prescribed one medication that was not really for tonic clonic seizures. Finally, he did have one really bad weekend -- 36 grand mal seizures in one weekend -- and she observed that right in the hospital and saw his oxygen rate dropping and heart rate going up almost to 200, and wondered how we could be so calm.
I would suggest keeping your camera handy, and next time he has a seizure, try to video it, and then you can show that to your doctor. Just seeing the nature of the seizure will be helpful for him in diagnosing meds. Our son was having more severe seizures than our neurologist realized (because he usually had them at night, we never caught on tape), and she prescribed one medication that was not really for tonic clonic seizures. Finally, he did have one really bad weekend -- 36 grand mal seizures in one weekend -- and she observed that right in the hospital and saw his oxygen rate dropping and heart rate going up almost to 200, and wondered how we could be so calm.