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Epilepsy/seizure folks...


amo_mea_filiis.
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Ds has an overnight EEG on Monday. The neuro is nearly positive he's having nocturnal seizures.

 

Any "good" ways to increase the chance we'll see anything? I know that doing little things (like a slightly later bedtime) will not cause seizures, but if he's already having them, it really, really needs to be seen.

 

I've been staggering his bedtime for a month. Should I let him "party" this weekend and just go to bed even later?

 

What about food? Food dyes cause some serious rages in him, so he's not allowed to have any. Should I allow it this weekend?

 

***Please don't think that I *want* anything to be there, but if it is, I'd like to be able to treat him.

 

If this EEG is normal, his neuro doesn't have any ideas and wants to send him back to genetics who just saw him last summer and found nothing. Genetics brought neuro in. I feel like we're playing ping pong.

 

I'm tired of being told that ds is "complex" with no other ideas. I don't even get complex *something* with him. Just plain *complex.*

 

The children's hospital is 3.5 hours away and there's nothing I can do to keep him awake during the drive, but I can make sure he goes to bed really late Sunday night and eats a poor diet. :(

 

He's been so mean and aggressive lately and I can't wait for Tuesday when we can go back to normal.

 

Basically, how much should I stress him? :(

 

April will be 8 years since he started having night terrors, was obviously delayed, started intense screaming at all hours, started head banging hard, had his first asthma attack, and we started diagnostics. At 22-23 months, his first neuro said he'd calm down when his expressive language increased. That was 6 years ago and he's still in speech therapy and still has limited *functional* expressive language.

 

I just want to know what is there, how to treat it, and how to help him have a better life.

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even if he doesnt have a seizure during the test, there are "markers" that might be picked up. Certain patterns they see on the EEG that indicate seizures are happening.

 

my understanding is many seizures happen when people first fall asleep and early in the am after they wake up.

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I assume this pattern can be missed, or not happen during a 45 minute EEG?

 

 

No, I think the markers can be picked up in a 45 minute EEG.

 

One neuro described it to me that it's not a seizure but it's is a message that seizures are possible.

 

But this was years ago, so I might be not explaining very well.

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Oh, and sleep deprivation won't cause a seizure in someone who doesn't have epilepsy but it WILL POSSIBLY lower someone's threshold that has epilepsy to make her more likely to have a seizure.

 

 

That's what I'm "hoping" for.

 

I guess if this EEG is not abnormal, it could go back to his sleep. His studies are very abnormal. But I've been on the Drs about his sleep for 8 years and we just get a shrug that his sleep is less than ideal.

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Why don't they check him and run a continous eeg over several days to catch them. My hubby has had to do that several times as a kid and adult

 

 

He's never had anything that could be positively identified as a seizure. A sleep pattern that's suggestive, behaviors that are suggestive, delays and scattered skill that are suggestive, etc. I'm sure if the overnight is abnormal, we may eventually do this, but right now there's nothing other than suspicions.

 

If we play ping pong too long, I'll talk to neuro about it because there's also nothing that suggests he's "normal" and everything points to brain/neuro issue of some kind.

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From the epilepsy foundation site:

 

Various ictal (seizure) and interictal (between seizure) EEG patterns correspond to specific seizure types and types of epilepsy, although the correlation varies. While the EEG is almost always abnormal during a seizure, it may be normal between seizures. Thus, lack of interictal EEG abnormalities does not exclude a diagnosis of epilepsy. However, at some time, most epilepsy patients have abnormal EEG discharges. In contrast, some persons with EEGs that show epilepsy-like activity never have seizures. Thus physicians interpret EEG results within the context ofother information they are gathering.

 

eeg

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From the epilepsy foundation site:

 

Various ictal (seizure) and interictal (between seizure) EEG patterns correspond to specific seizure types and types of epilepsy, although the correlation varies. While the EEG is almost always abnormal during a seizure, it may be normal between seizures. Thus, lack of interictal EEG abnormalities does not exclude a diagnosis of epilepsy. However, at some time, most epilepsy patients have abnormal EEG discharges. In contrast, some persons with EEGs that show epilepsy-like activity never have seizures. Thus physicians interpret EEG results within the context ofother information they are gathering.

 

eeg

 

 

I've read that a few times and it makes everything even more confusing! Lol.

 

Eta: thank you for adding this.

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I posted it because of the part that says interictal EEG patterns correspond to specific seizure types and epilepsy.

 

This means that between seizures, you can still see patterns that indicate seizures and epilepsy in some cases.

 

It just confirms what I first wrote...that there might be a chance you'll get an answer even if your DS doesn't have a seizure during the test.

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You've gotten accurate responses. The 45 min "is" enough time to detect if there are what are called "spikes" OR full-fledged breakthroughs/seizures. My dd is epileptic. She had a grand mal at 7 y 10 m in 2007. For the rest of the year she had absence seizures (that was the only grand mal). With meds she became and continues to be seizure free since 2/5/08. Now, she was doing so well that she was weaned from all her meds the last half of last year. She went in for an eeg and spiked twice. One was a 2 second which is not a big deal. But, the 20 second absence was a loooong one. What can you do? You MUST follow their instructions that they gave you to a tee. Do not do anything out of the ordinary. KEEP your regular routine. He MUST.NOT, MUST.NOT sleep on your drive to his appt. If you can ask a family member or friend to go with you that would be best! There is a reason for giving a sleep deprived eeg and another reason for giving an ambulatory. He may not be having seizures. But, then again, he may be. You're not with him when he sleeps and he could be seizing. Please know I'm not saying he is, but he could be. Or, it could be another condition. Typically a patient is not to have any meds the night before, no napping the day before, shower and wash his hair in baby shampoo with NO conditioners. He should not have caffeine in any form (candy, cake, tea, coffee, and whatever else). In short, follow their directions to a "t". The eeg "should" pick up on spikes/discharges and/or full seizures "if" he's having them. HTH!

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Let me also add this. My dd had her grand mal March 2007. I saw NOTHING until the day before her 8th birthday, 2 months later! Then I started seeing something here and there and by summer she was seizing a lot. She seized a lot from summer 2007 to when she became sz free Feb 2008. Has you ds had a ct scan! Has he had injury to his head? Difficult delivery? There are so many different kinds of seizures. There are other Moms on this board who have sz or they have kids who have sz. HTH! Leads - don't worry about it. My dd usually has 20 maybe. She goes in for a routine eeg (sleep - deprived) April 1!

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I have Complex Partial Seizures and nothing showed on my EEG b/c I didn't have a seizure during it (they are really sporadic). Still, based upon my symptoms my neurologist was able to make a diagnosis.

 

Sleep deprivation definitely affects me, as well as stress. I haven't been getting very good sleep this whole week, so yesterday, during my sleep last night, and today I have been having seizures pretty frequently. They tend to come in clusters for me.

 

Good luck!!

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I have Complex Partial Seizures and nothing showed on my EEG b/c I didn't have a seizure during it (they are really sporadic). Still, based upon my symptoms my neurologist was able to make a diagnosis.

 

Sleep deprivation definitely affects me, as well as stress. I haven't been getting very good sleep this whole week, so yesterday, during my sleep last night, and today I have been having seizures pretty frequently. They tend to come in clusters for me.

 

Good luck!!

Yes, there "is" always that possibility, but "usually" spikes show up "if" there is anything. But, you are right, it's not 100%. My dd's neuro said that new research in the last 1-2 years indicate that if someone will seize it "should" show up in the "slice of time" during the eeg. How long have you had szs? Just wondering if it was since childhood or as you entered adulthood.

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He does sleep with me occasionally and he is a very active sleeper.

 

Dd is coming with us, but he's sooooooo aggressive towards her that I'm not sure it's a good idea for her to keep him up during the drive. I can try leaving earlier and stopping often to wake him.

 

He ALWAYS sleeps on drives longer than 30 minutes. There's not a drive over 30 minutes in his life that he was able to stay up. This of course means that he still has to wear a diaper on drives because sleeping = peeing (night wetting is another thing neuro thinks is related).

 

I *will* try, but it's much more complicated than "mommy doesn't want to deal."

 

Only meds he takes is advair for asthma.

 

His neuro said not to keep normal routine to stress him prior to monday night.

 

No caffeine and washing routine same as sleep studies.

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Sleep deprivation is a good trigger for seizure activity. It's been a few years since we've done an EEG, but I remember for an early morning EEG, we were supposed to put dd to bed a little late, but the hard part was that we were supposed to wake her something like 4 hours early. I guess waking up too early is more of a trigger than being up too late (dd was seizing when I woke her this morning and I wondered, hmmm, how long have you been awake?).

 

But you said this is for an overnight EEG. What time of day does it begin? If it starts in the evening, you may have different instructions than we had. I do think it is important to not let him sleep on the drive there as much as you possibly can.

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Let me also add this. My dd had her grand mal March 2007. I saw NOTHING until the day before her 8th birthday, 2 months later! Then I started seeing something here and there and by summer she was seizing a lot. She seized a lot from summer 2007 to when she became sz free Feb 2008. Has you ds had a ct scan! Has he had injury to his head? Difficult delivery? There are so many different kinds of seizures. There are other Moms on this board who have sz or they have kids who have sz. HTH! Leads - don't worry about it. My dd usually has 20 maybe. She goes in for a routine eeg (sleep - deprived) April 1!

 

He's had one night terror that I have always believed was a seizure, as well as his confusional arousals. His worst night terror had him walking around the house with this blank "death stare" and he was completely unresponsive and aggressive. He "woke up" on the ride to the ER and was normal by the time we got there. This could have been just a night terror, but the ER was never concerned and seizure wasnt on my radar.

 

For several months, he'd get out of bed, come over to me hitting and yelling that he wanted to go home, try to chew my arm or hair or whatever, pee on the floor, lay on it and go back to sleep and wake up normal. This happened before we moved so not a stress thing. It also happened one night when a friend was over and i was thrilled that someone else had finally seen it!

 

He still sometimes has the confusional arousals during rare naps. I know he's woken up strange when he pees somewhere.

 

Several times he's come to me saying he was dizzy or "felt high," and I've wondered about them. He always has a strange look when he says this, almost a "high" or "stoned" look. **yeah, I'm terrible and have let him watch family guy which is where he got the "high" term. He's not allowed to watch it anymore.

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Sleep deprivation is a good trigger for seizure activity. It's been a few years since we've done an EEG, but I remember for an early morning EEG, we were supposed to put dd to bed a little late, but the hard part was that we were supposed to wake her something like 4 hours early. I guess waking up too early is more of a trigger than being up too late (dd was seizing when I woke her this morning and I wondered, hmmm, how long have you been awake?).

 

But you said this is for an overnight EEG. What time of day does it begin? If it starts in the evening, you may have different instructions than we had. I do think it is important to not let him sleep on the drive there as much as you possibly can.

 

He's being admitted at 11:00am to be hooked up. Then i have to somehow occupy him all day in front of the camera! Not my idea of fun.

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Could you go early the day before an stay in a near by hotel? Then even I he naps during the drive you can keep him awake late and it will be a short drive over for the EEG. When my son needed that test we would let him sleep from 11pm- 3am an then keep him up for the test which started at 630am. I know that finances may be an issue- but I thought I'd throw it out there anyway.

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Could you go early the day before an stay in a near by hotel? Then even I he naps during the drive you can keep him awake late and it will be a short drive over for the EEG. When my son needed that test we would let him sleep from 11pm- 3am an then keep him up for the test which started at 630am. I know that finances may be an issue- but I thought I'd throw it out there anyway.

 

 

I considered seeing if we could stay somewhere, but i doubt his behavior would be acceptable or fair to subject anyone to.

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Yes, there "is" always that possibility, but "usually" spikes show up "if" there is anything. But, you are right, it's not 100%. My dd's neuro said that new research in the last 1-2 years indicate that if someone will seize it "should" show up in the "slice of time" during the eeg. How long have you had szs? Just wondering if it was since childhood or as you entered adulthood.

 

 

They started about 3-4 years ago, I'm 35. I also have tonic clonic seizures, but they are only triggered by drinking hard alcohol, so that is easy for me to avoid. Those began when I was a teen. *blush*

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Let me also add this. My dd had her grand mal March 2007. I saw NOTHING until the day before her 8th birthday, 2 months later! Then I started seeing something here and there and by summer she was seizing a lot. She seized a lot from summer 2007 to when she became sz free Feb 2008. Has you ds had a ct scan! Has he had injury to his head? Difficult delivery? There are so many different kinds of seizures. There are other Moms on this board who have sz or they have kids who have sz. HTH! Leads - don't worry about it. My dd usually has 20 maybe. She goes in for a routine eeg (sleep - deprived) April 1!

 

Forgot to answer- no brain CT scan, but a normal MRI. No official head injuries, but he's been a head rocker and banger since he was a newborn. Delivery was easy.

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My husband had a sleep EEG recently to see if he was having seizures at night, and to determine if he should stay on preventatives. He did not have any seizure, but they told us that they could easily see that he still had some abnormal brain activity that was -- hyper sensitive? or something like that. It was a condition that makes him more prone to seizures. He is staying on the meds.

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They started about 3-4 years ago, I'm 35. I also have tonic clonic seizures, but they are only triggered by drinking hard alcohol, so that is easy for me to avoid. Those began when I was a teen. *blush*

You're being hard on yourself. You let him watch a show. He knows the word. My dd knows about things such as this. Listen, that word "stoned" or "high" aka "blank" is exactly how my dd functioned when she was seizing. She would drool and lose continence sometimes (or maybe it was only during her grand mal). The aggressive behavior is, sorry to say, a "side" or "residual" issue with epilepsy. We've had many behavioral issues with dd and she is still a work in progress. :) I agree, and was also going to mention, with a pp about getting a hotel room for you all. Ask for a corner room. Explain up front why you're there. It is just.not.a.good.idea. for "ANY" sleeping to occur during the "awake" hours - no matter how you cut it/whatever reason. You can NOT make up for sleeping. There has to be so many hours between being awakened at 2 or 3 and until the scheduled eeg. One thing I find interesting though and I question is why on earth is he on this sleep schedule with an 11 am eeg? I would reschedule the eeg for an earlier eeg time. My dd's eeg are always b/t 8 - 9 am. She's awake up to 11 pm. Sleep: 11 pm - 2 am. Awake: 2 am to eeg appt time of 8 - 9 am. The office you're working with seems to have a very unusual schedule.

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We just had one, no problems keeping DD entertained during the day - nice big 40" TV with movies on demand, CHild Life bringing in stuff, a visit from CHip and Dale! Really, she didn't want to go home!!

 

DD has been having behavioral issues since weaning off her zarontin for absence seizures. The EEG didn't show any seizures, but did show abnormalities while she slept. She slept like a ROCK that night too. He wants her to go back for more neuropsych testing - and psych for anxiety meds, neither can really work at the moment due to insurance reasons.

 

He wanted me to try to do the things that caused her issues - but alas, I couldn't bring her sisters to antagonize her into an "attack". I'm not sure where we are going at this point....

 

Good luck!!! :grouphug:

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Oh and I have been told that it isn't so much the sleep deprived part - it is the fact that they want them to "go to sleep" during the EEG, so they do the sleep deprivation thing. She was pretty sleep deprived by the time the afternoon rolled around, but not like we had her for her other EEGs.

 

ANd, it sucks driving 3 hours to a sleep deprived EEG and trying to keep them awake - btdt.....

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He wanted me to try to do the things that caused her issues - but alas, I couldn't bring her sisters to antagonize her into an "attack". I'm not sure where we are going at this point....

 

Good luck!!! :grouphug:

 

Dd will be with us. I already talked to the nurses about his behavior. He'll cooperate with getting set up, but I'm sure we'll have at lease one rage to include cursing.

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Oh and I have been told that it isn't so much the sleep deprived part - it is the fact that they want them to "go to sleep" during the EEG, so they do the sleep deprivation thing. She was pretty sleep deprived by the time the afternoon rolled around, but not like we had her for her other EEGs.

 

ANd, it sucks driving 3 hours to a sleep deprived EEG and trying to keep them awake - btdt.....

 

I was told the same thing, but I was unable to fall asleep during mine. Insomnia and INSANE sensitivity to the conditions around me in order to sleep kind of prevented that. I can be ready to pass out b/c I'm so tired, but if things aren't just so I can't fall asleep.

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He's had one night terror that I have always believed was a seizure, as well as his confusional arousals. His worst night terror had him walking around the house with this blank "death stare" and he was completely unresponsive and aggressive. He "woke up" on the ride to the ER and was normal by the time we got there. This could have been just a night terror, but the ER was never concerned and seizure wasnt on my radar.

 

For several months, he'd get out of bed, come over to me hitting and yelling that he wanted to go home, try to chew my arm or hair or whatever, pee on the floor, lay on it and go back to sleep and wake up normal. This happened before we moved so not a stress thing. It also happened one night when a friend was over and i was thrilled that someone else had finally seen it!

 

He still sometimes has the confusional arousals during rare naps. I know he's woken up strange when he pees somewhere.

 

Several times he's come to me saying he was dizzy or "felt high," and I've wondered about them. He always has a strange look when he says this, almost a "high" or "stoned" look. **yeah, I'm terrible and have let him watch family guy which is where he got the "high" term. He's not allowed to watch it anymore.

 

WOW! That is so what my dd was like before we found out about her seizures! We did not suspect seizures and when the dr quickly looked over the chart at discharge he didn't see anything that indicated seizures immediately....but at looking closer at it he saw her having absence seizures increasing while she sleeps. So all I can do is wish you luck and hope you have the same kind of dr who is willing to take a look and then a second look.

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I was always told that the night terrors and confusional arousals were related to growth spurts. No one ever answered me when i questioned him being in a continuous growth spurt for years with no other indicators, like growth! It's not like he'd have a group of incidents and all of a sudden develop a new skill or outgrow some clothes.

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A symptom of my type of seizures is what you call confusional arousals, and it is the manifestation of my seizures in my sleep (although I get my regular ones as well, I think when I am not in such a deep sleep). I sit up, and mumnle stuff to my DH, but I can't get a coherant sentence out and nothing I say makes sense. Then I just lay back down and go to sleep.

 

Also, you said he feels dizzy or high...that is exactly how my seizures feel as well. I get a feeling of deja vu, like what ever I am doing or seeing at that moment I have done or seen before. Then I get the dizzy feeling, usually the room spins a little, and I feel really flush and usually get nauseous. I can completely function through the whole thing, but they are really uncomfortable. Depending on how bad it is, it completely wipes me out and all I want to do afterward is sleep. Some are worse than others.

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Dd will be with us. I already talked to the nurses about his behavior. He'll cooperate with getting set up, but I'm sure we'll have at lease one rage to include cursing.

 

Listen, they "understand"...it's that simple. There's no need to be embarrassed about it. It just happens. Seizures are an abundance of electrical discharge that interrupts brain activity (sometimes I call them hiccups). The "activity" flows down the brain's pathways. IF the activity (electrical discharges) are running down the same pathways, then those pathways are becoming "worn". With childhood epilepsy the good news is that the child's brain is still "growing" and they are "growing new pathways" by which the activity can travel....many children (not all) can "outgrow" their seizures. Don't give it a second thought about your son's lack of appropriate behavior - the staff has seen it before and will see it again. I hope this encourages you.

Oh and I have been told that it isn't so much the sleep deprived part - it is the fact that they want them to "go to sleep" during the EEG, so they do the sleep deprivation thing. She was pretty sleep deprived by the time the afternoon rolled around, but not like we had her for her other EEGs.

 

ANd, it sucks driving 3 hours to a sleep deprived EEG and trying to keep them awake - btdt.....

 

Yes, that is it. They "do sleep" b/c they have been up all night! However, when the patient doesn't sleep during the eeg, many times it's b/c there is activity present keeping them awake.
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Listen, they "understand"...it's that simple. There's no need to be embarrassed about it. It just happens. Seizures are an abundance of electrical discharge that interrupts brain activity (sometimes I call them hiccups). The "activity" flows down the brain's pathways. IF the activity (electrical discharges) are running down the same pathways, then those pathways are becoming "worn". With childhood epilepsy the good news is that the child's brain is still "growing" and they are "growing new pathways" by which the activity can travel....many children (not all) can "outgrow" their seizures. Don't give it a second thought about your son's lack of appropriate behavior - the staff has seen it before and will see it again. I hope this encourages you.

 

 

It encourages me, but I've heard it before. :(

 

We went to a pediatric neurologist (not the current) a few years ago. I called them and gave the nurses a warning and heads up. They all assured me they'd seen and heard it all before.

 

The appointment was a disaster. No one warned me that this was a mixed ped AND older adult office. None of the staff had anything close to patience with my son. I was told several times (in front of him) that his mouth was out of control. The nurse who checked him in rolled her eyes several times when i asked her not to touch his Nintendo ds. Neuro spent 5 minutes with us, completely dismissed the sleep studies, "diagnosed" him severely autistic and tossed a script for Ritalin at me.

 

The whole medical world has "seen and heard it all" until my son actually steps in their office. Most of them have no business dealing with hard kids.

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It encourages me, but I've heard it before. :(

 

We went to a pediatric neurologist (not the current) a few years ago. I called them and gave the nurses a warning and heads up. They all assured me they'd seen and heard it all before.

 

The appointment was a disaster. No one warned me that this was a mixed ped AND older adult office. None of the staff had anything close to patience with my son. I was told several times (in front of him) that his mouth was out of control. The nurse who checked him in rolled her eyes several times when i asked her not to touch his Nintendo ds. Neuro spent 5 minutes with us, completely dismissed the sleep studies, "diagnosed" him severely autistic and tossed a script for Ritalin at me.

 

The whole medical world has "seen and heard it all" until my son actually steps in their office. Most of them have no business dealing with hard kids.

 

Oh my, I'm so very sorry to hear that. I would gently remind them again! Also, I'd seriously check out other ped neuros! Certainly there is another one in the vicinity. Are you close to a college/university town? Perhaps they have a school of medicine/practice you could check into. That really disturbs me that the staff treated your ds that way. What is the manner of the neuro him/herself? Nice? Understanding?

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Our current neuro is great, as is everyone else we've met at DuPont. Neuro described above was number 3 that i fired.

 

When he had his recent MRI, the nurses moved him away from everyone to start the IV just in case he freaked and started cursing. He didnt, but the precautions they took were great.

 

They noted his chart for Monday, but I'm always worried about how his behavior may complicate things.

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As Tracey said, sleep deprivation is more about making it easy for him to sleep then it is about stressing him. If you don't have anyone with you to keep him awake the easiest thing to do is make it so interesting for him that he doesn't want to go to sleep. For our son that means video games, videos, loud music, special treats, pit stops, whatever it takes.

 

If its an overnight test, you don't have to worry about this stuff unless he has difficulty sleeping in new places. If its a sleep-deprived EEG (it should say on the form) then just do the best you can.

 

If sleep is an issue and he doesn't show signs of waking seizures, then I hope this is an overnight EEG. For some of those subtle seizures types a normal 45 minute EEG doesn't cut it.

 

I wish you the best, amo.

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