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Old 11-30-2011, 01:01 PM
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My daughter had what I believe was a seizure about 3 weeks ago. I took her to the ER and she had a CT scan there which was normal. Since then she has also had an MRI which was also normal. She is scheduled for an EEG this week. Here is my problem, and I hope I don't sound like a terrible mom for saying this, but my daughter lies a lot. She is acting really weird about all these events that have happened. I'm not sure what to think and am afraid I am spending a lot of money (we are basically paying for all this out of pocket because our deductible is so high) for some sort of attention-seeking plot. She is only ten though so I just find it hard to believe that she would make all this up and don't even want to mention my suspicions to her doctor because I could be totally off base on this and I want to make sure this is looked into in case it is something serious.

I saw the first seizure. I'm just not sure if it was a seizure or something else. What happened was I heard her making this weird noise (sort of sounded like snoring) and turned around to see her one arm flapping up and down, her head turned to one side, and her eyes were gazing up and to the left. She was unresponsive at first but then after I tapped on her face a few times she eventually "came to" and then started crying. I would say the whole event lasted a minute but not quite two minutes. I didn't turn around right away so I didn't see it from the start and only turned around after hearing her make this noise for a little while. It was annoying me and I thought she was just horsing around at first.

She has also been reporting issues with not being able to stand up. I haven't seen her do this but she's told me about it before she had the first seizure and said she kept falling down. My son saw her do this and said her foot fell asleep. So I think that is what it looks like but he said both of her feet fell asleep. She says they weren't asleep and that it hurt. What I don't know is if this was just her feet falling asleep and her being hysterical or if this is something more significant. If it is significant, how could this be related to the seizure. I can't seem to find any info about this foot numbness/pain or whatever it is.

When she went to ER they asked me if she wet herself or acted weird after the seizure and she didn't. She pretty much acted normal after it happened and I don't know if that is normal. From what I've read they normally are really sleepy afterwards and she wasn't.

She may have had another seizure since the first one but I didn't witness it so I'm not sure. My son said both her arms were pounding the ground and that she was looking straight ahead but not responding.

She has been acting very weird since all of this started happening and I am not sure if she is just curious, anxious, or enjoying the extra attention or if the whole thing is contrived. I've only talked to a couple people about my suspicions and my sister says she doesn't think she could have faked a seizure and I tend to agree but maybe this wasn't a seizure. Maybe it was something else.

I feel really guilty even doubting her about this. I just don't know what to think. I don't know what could cause these different symptoms and if this is something that I should be really worried about.

I'd appreciate any insight on what could be going on.
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Old 11-30-2011, 03:25 PM
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Hi mommieinmi, welcome to CWE!

I think your daughter is having real seizures, rather than faking them. She may well be feeling strange in the aftermath and behaving accordingly, or, as you say she may be enjoying the extra attention. But her symptoms sound real. The initial snore sound, plus the turning of the head and eyes -- these would be unusual choices for a child who was faking it. They ARE characteristic of seizures. The majority of seizure disorders don't involve convulsions or complete loss of consciousness. Not everyone wets themselves after a seizure. And many seizures are fairly brief, and the post-seizure recovery can be quick without necessarily resulting in sleepiness.

The stuff going on with her feet sounds like peripheral neuropathy. More info here:
http://www.mayoclinic.com/health/per...opathy/DS00131 Seizures are one cause of peripheral neuropathy, although there are others, such as nutritional deficiencies or diabetes. But with the other seizure-like symptoms, they suggest a neurological cause, and you are doing the right thing by having her tested. Make sure you provide as much information as possible to help with the diagnosis -- even the details that you aren't sure about.

Don't feel bad for doubting your daughter. But do give her the benefit of the doubt and trust the doctors to help sort things out.

Best,
Nakamova
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Old 11-30-2011, 04:15 PM
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Originally Posted by Nakamova View Post:
Hi mommieinmi, welcome to CWE!

I think your daughter is having real seizures, rather than faking them. She may well be feeling strange in the aftermath and behaving accordingly, or, as you say she may be enjoying the extra attention. But her symptoms sound real. The initial snore sound, plus the turning of the head and eyes -- these would be unusual choices for a child who was faking it. They ARE characteristic of seizures. The majority of seizure disorders don't involve convulsions or complete loss of consciousness. Not everyone wets themselves after a seizure. And many seizures are fairly brief, and the post-seizure recovery can be quick without necessarily resulting in sleepiness.

The stuff going on with her feet sounds like peripheral neuropathy. More info here:
(removed the link so I could post)
Seizures are one cause of peripheral neuropathy, although there are others, such as nutritional deficiencies or diabetes. But with the other seizure-like symptoms, they suggest a neurological cause, and you are doing the right thing by having her tested. Make sure you provide as much information as possible to help with the diagnosis -- even the details that you aren't sure about.

Don't feel bad for doubting your daughter. But do give her the benefit of the doubt and trust the doctors to help sort things out.

Best,
Nakamova
You have no idea how helpful you've been. Thank you so much for the quick response. I have felt really guilty about doubting her. I think it may just be that this is a real shock to me. It all came out of the blue and just shocked me. Plus, I think as time passes you start to second guess what you saw. I know when this all happened I was real close to calling 911 and then she came to so I think you are right. When the ER doctor mentioned that she didn't wet herself and didn't act confused aftewards it made me question if this was seizure.

I really hope the EEG doesn't take too long to get the results on. I don't know how long it will take to get into the neurologist though.

Thank you for the link on the neuropathy. This sounds almost exactly like what she described.

We also have a family history of diabetes. My sister has two kids with Type 1 and I've had gestational diabetes with most of my pregnancies. This was actually one of the first things I thought of when this started but I'm pretty sure they checked her blood sugar and she's not really having any other diabetes symptoms.

I really appreciate your post.
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Old 11-30-2011, 04:41 PM
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I am sorry to here that your daughter had a seizure. My daughter kept falling and we thought it was her unsteady gait but it turned out to be a "drop seizure" or atonic seizure. She started having them in clusters that is what got us to realize they were seizures and when we went for an eeg it showed up when she did it in the hospital. Check out the NYU epilepsy center web site to get a better understanding of the many types of seizures. My daughter has never had grad mal seizures like you see on TV. She has atonic seizure, absance ( stares in to space for afew seconds) and partial complex seizures ( twiching of the hand or lip smacking, or fluttering of eyes). She has never lost her urine.
Please feel free to ask any questions. I am of the opinion there is no such thing as a stupid question when it comes to epilepsy if it is important to you it IS an important question. Search some of the other threads as there is alot of usefull information in the forums.

Robert
Father to Abigail 11yo Lennox-Gastaut Syndrome, SBH
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Old 11-30-2011, 06:19 PM
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I hope the EEG points in a helpful direction. Keep in mind that there can be both false positives and false negatives with the EEG. Many people with epilepsy never have it show up on their EEGs -- the seizure activity may not be present during the test, or it might originate too deep in the brain to show up. In these situations, it's important that the neurologist has as much info as possible about the actual symptoms your daughter is experiencing. If you can write down everything that you or others have witnessed, even stuff that you're not sure about, that will be helpful for the doc in making a diagnosis.
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Old 12-08-2011, 02:53 PM
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I just wanted to post an update. I feel like an idiot for doubting my daughter. I think I was just in denial and having a hard time believing it all.

Anyway, her pedi called and told me her EEG results were very abnormal. I don't know what that means. They are going to start her on Keppra and I guess we just wait and see how that works. She doesn't see the neurologist until March. I still feel like I don't know what's going on. Will the neurologist be able to tell what kind of seizures she is having based on the EEG?
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Old 12-08-2011, 05:46 PM
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Thanks for the update, it's good to know that you and your daughter are getting some answers. "Abnormal" just means that the brainwaves that showed up on your daughter's EEG are characteristic of a seizure disorder. This is a good thing in the sense that it provides very clear evidence for the neurologist to work with. The EEG results combined with the actual symptoms your daughter is having should allow the neurologist to figure out what kinds of seizures she's having.

As your daughter ramps up on the med, keep a close watch for side effects, and make a note of any unusual changes. Keppra is particularly known for heightening emotions and anger, so if your daughter starts getting moody and cranky you'll know what to blame. A B6 vitamin can sometimes help to minimize those side effects -- check with your doc about that option if necessary.
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Old 12-09-2011, 05:20 PM
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My son also takes Kepra, another side effect, in addition to what Nakamova has indicated is sleep disturbances, this is the biggest one for my son, we had to start giving him Melatonin to help him fall asleep. My son is very emotional since the Keppra and he has bursts of rage. It does get better but it is a bumpy road, at least for us. The good news is my son's seizures have completely stopped, so you take the good with the bad I guess. Good luck.
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Old 12-16-2011, 03:37 PM
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The keppra definitely seems to be affecting her moods. I mentioned this to her pedi but he said this med was the one with the least side effects. It doesn't seem to be stopping her seizures though. She had another one today that scared the heck out of me. It was much worse than the first one.
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Old 12-16-2011, 05:53 PM
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I'm not sure that Keppra has the least side effects. Lots of folks have complained about it on this site. Just because the pediatrician thinks Keppra has the fewest side effects doesn't mean it's the right med for your daughter. There are several others out there for her to try -- hopefully you can get to see a neurologist who can go over all the options.
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