Parent advice on a childs possible nocturnal seizures

[raggedyann]

Hi All,

I am new and as I have looked I notice that most all of you have a diagnosis of one form or another. I have done research on my own based on the things that I have seen with my daughter and have put two and two together and come up with what I think is nocturnal seizures and there may be other things I am not aware of. My daughter has two syndromes that both give her higher chances than non-syndrome girls (these syndromes are gender specific). We have a family history of I think just grand mals, my grandfather and my aunt who passed at 18. This is what I see:

She has since she was old enough to attend school been very hard to wake, to the point that we would dress her in her sleep and carry her in to daycare for them to get her to school. On some days she is tired and can't stay awake long enough to dress herself. There are times when no matter what I do I can't wake her, I see that her eyes are half opened. She never stops moving in one way or another in her sleep and especially if she sleeping with me and or my husband. This doesn't happen every night. I have a hard time getting her to go to school on these days or she goes late. She begs to stay asleep that she is so tired and you can see it in her eyes, they look weak.

I see and feel alot of twitching in her legs and arms and it starts within a half hour after she seems to have fallen asleep. I have seen her look like she is going to throw up in her sleep, like she is gagging, but not in her face, it is in the body in the abldominal area. It's like she bends in at the waist and does this a couple of times. I feel and see her extend her legs out hard, stiff. She moves and rolls alot. Punches and kicks. I have not tried catching this on video yet. I am so frustrated at the thought of this I know I am leaving something out.
Please, if you have ideas and questions to make it clearer for me please ask away. I can probably be more specific that way. I am really worried about this as I think it has been ongoing since at least her first couple of months after birth. High anxiety also......

 

[RobinN]

Is there any possiblity of making an appointment with a neurofeedback practioner in your area to talk about NFB therapy. It really is a way to treat sleep disorders without medication.

I highly recommend it.

 

[Nakamova]

Given the family history of epilepsy, it makes sense to talk to your daughter's pediatrician and/or get a referral to a pediatric epileptologist or a sleep specialist.

 

[raggedyann]

I have never heard of a pediatric epileptologist, what do they do that is different than what a ped neuro would do? We are supposed to have her evaluated for learning disorders and I wanted her seen for seizures while we were there. Am I wasting my time having the neuro check her? One other question, do EEG's tell you about past seizures? I was wondering if it was worth it to make a run to the ER the next time I can't get her to wake.....

 

[epileric]

an epileptologist is really just a neurologist that specializes in epilepsy. As for whether you should have a neurologist check her, In my opinion it's never a waste of time to check for medical issues, even if it's just to rule something out.

An EEG can't tell what seizures have happened in the past, it just measures the brain waves at the time it is taken. They usually ask you to do certain things like hyperventilate or put a strobe light in front of you to see if those things effect your brain waves. However a "normal" EEG doesn't mean that the person isn't epileptic. Sometimes the abnormality isn't picked up.

 

[Endless]

Raggedyann,

EEGs only have an average of 84% accuracy.
EEG Info
Look on page 1101. (yeah, it's a textbook)

Some of the reasons that an eeg can come out negative and not detect previous seizure activity are:
1) The seizures haven't made permanent changes in the brain yet so there aren't abnormal brain waves between seizures.
2) The seizures are partial seizures that are happening too deep in the brain to detect. Frontal Lobe and Temporal Lobe seizures are two types that are particularly hard. Seizure which involve the whole brain (e.g. tonic clonic, absence) should show up on an eeg, if it is happening at that moment.
3) The seizure isn't currently happening.
4) The abnormal brainwaves are ultra-high frequency. But most centers now use gold plated electrodes, so they should pick those up. It might pay to look at the electrodes to see what color they are.

In a previous post Ranman said he went 23 years before his EEG showed positive.

You may find this article interesting. It has info on EEG's, plus videos of some types of seizures.
http://emedicine.medscape.com/article/1137908-overview

 

[RobinN]

A top University Pediatric Epileptologist here in SoCA, told us that our daughters seizures were not Epilepsy. Perhaps that was a good call, now that I think about it, however they said they were Psychogenic. MRI brain abnormality was not classic epilepsy.

Two other neurologists said that her seizures were epileptic, based on the MRI.

My daughters seizures are most likely NOT epileptic, but they are due to a blood sugar disorder. Something called reactive hypoglycemia. So other neurologists wanted to put her on meds, which caused her system to spiral out of control.

You can get the best medical care possible, but if you do not keep a journal, use good intuitive skills, observation, and a clear understanding of the disorder and related symptoms, understand the tests that are given, etc., then you are just buying a ticket for a wild roller coaster ride.

My opinion... that is.

 

[raggedyann]

We are going to WVU to see a neuro there that deals with the learning disabilities she has. It was something that her ped endo wanted done because it is common in girls with Turner Syndrome. I also read that this Dr. works with kids that have chronic headaches too.
I know the strobe lights can cause seizures, so do they let it get to the point that they have one, is there a span of time that they have you look at it?

What about a sleep study, would that tell them the same thing? I read about ambulatory EEG's, is that a possibility instead of strobe lights or would they get faster results with the light?

 

[Endless]

The strobe lights last about 3 minutes or so. There is a set of patterns they go through.

A sleep study wouldn't tell the same thing. It has a lesser number of electrodes and wouldn't pick up all abnormal waves that might indicate epilepsy, plus a neurologist isn't reading the output, which may make it less accurate when diagnosing epilepsy. On the other side of the coin, a sleep study may be more helpful in diagnosing sleep disorders. They have additional types of readings - like breathing, leg movement, etc.

Yes, ambulatory EEGs are possible. Talk with your doc about what kind might be best for her. If you think she might pull the electrodes off then an inpatient one might be better.

 

[raggedyann]

Thank you Endless, if you can think of anything else I could look for in her seizures and anything else for the neuro I would appreciate it. Any advice for anyone would be welcomed.

 

[raggedyann]

Thank you RobinN, that is interesting material and the reactive hypoglycemia, how is that controlled? This is very interesting.......

 

[RobinN]

It is controlled through nutrition.

I also wanted to add that my daughter has had learning issues, and we saw an improvement with neurofeedback in this area. Better concentration, focus, note taking, etc. It also is helpful for those with headaches.

It is my belief that neurofeedback helped to stabilize the brain frunction that was occurring, but it was nutrition that is the reason she is improving and no longer having seizures.

 

[raggedyann]

She was diagnosed by a psychiatrist with ADD w/ADHD tendencies. I don't really believe that diagnosis but it got her an IEP for her problems. With Triple X girls can have short term memory loss, reading comprehension issues, and math. The reading is getting better, but the math is the big issue right now. These girls are supposed to have a condition called Non-Verbal Learning Disorder. They told me she did alot of shutting down in class in first grade. The principal told me that she worked with her on math once and did a few problems of simple adding and she did okay, once they got to the six or seventh problem she said it was like she forgot how to "add". Spelling is a different story because she has a photo graphic memory.
Can seizures get worse or maybe this is as bad as it gets?

 

[Nakamova]

Unfortunately it's hard to predict what course a given individual's seizures will take -- it's different for everyone. In some cases, kids grow out of seizure disorders. Untreated seizures can start to increase in frequency or duration, and/or progress from simple or complex partials to tonic-clonics, so it's worth trying to find a treatment plan that helps control them.

 

[RobinN]

I just want to stress that treatment does not always mean prescriptive meds. My daughters seizures, unmedicated, have been decreasing. When she was "treated" her seizures increased.

There is a term called kindling. It is where the brain learns to seize. Whether medicated or unmedicated.

Raise the seizure threshold and you might see a change in seizure patterns.