[my3peanuts]

We ended up getting in for an EEG yesterday. I got the results today and they were normal.

Maybe I shouldn't be disappointed, but I am. I just don't believe that he's not having seizures and now I feel like we still have no answers and the pediatrician is going to try to convince me he's obviously not having them since the EEG was normal.

I only talked to her nurse but she said she'd have the doctor call later and let me know what she wants to do. I told the nurse that I'm not going to just accept that it's normal because I believe he's having seizures.

I'm starting to wonder if I'm losing my mind. I mean, I know I have "proof" so to speak but maybe I'm seeing something that isn't there. Maybe the behavior on the video ISN'T a seizure. I'm really starting to second guess myself.

 

[maxymum]

don't really know your ds's story but thought i'd add...

one of my 7 month old twin girls has been having seizures and is now on anti-convulsants. all of her tests came back neg. she had them ALL, some multiple times, all negative.

have you seen a ped neurologist?

hugs,
paige

 

[my3peanuts]

Quote:

Originally Posted by maxymum don't really know your ds's story but thought i'd add... one of my 7 month old twin girls has been having seizures and is now on anti-convulsants. all of her tests came back neg. she had them ALL, some multiple times, all negative. have you seen a ped neurologist? hugs, paige

How did you prove she was having seizures then? What kind of seizures does she have?

 

[JohannasGarden]

I don't know the specifics, but I have certain heard that EEGs can be wrong. Sometimes you have to have a seizure during the EEG to get an atypical reading.

By reading descriptions of petit mal seizures as an adult, I am pretty sure I had them as a child, but my basic sleep eeg was also negative. Same thing happened with me, that everyone assumed I wasn't having seizures since the EEG was negative.

You still have the neurologist appointment, though, right? It sounds like your DS has seizures frequently enough that you'd have a possibility of catching it.

Sherri

 

[wytchywoman]

Can you request one of the longer EEG tests. I know the sleep deprived "quicky" EEG tests often miss things because the test itself isn't run for all that long a time. I do recal that the next one up is a 24 hr EEG ( I think this is right). Stand firm and insist on more testing. Trust your mommy instincts.

 

[Sierra]

I think we ended up following up ds' eeg with an MRI because the normal eeg results came back as a surprise. The MRI also came back as normal, as did the genetic testing to date. Now we are moving on to metabolic testing. I could have sworn the descriptions of seizures fit, but so far that doesn't appear to be the issue.

I'm sorry you didn't get your answers.

 

[RedOakMomma]

The short EEG is just a first screen...it isn't always enough to catch seizures that are short or that are deeper in the brain. Keep recording the events on video, and keep writing them down. Ask your pediatrician to refer you to a pediatric neurologist, preferably one at a Children's Hospital. Be "reasonable" with the pediatrician--say (if you feel comfortable with it) "I still feel strongly that the're seizures. I'd like one appointment with the pediatric neurologist just to cover our bases and make sure we've followed through on this."

Another question to ask your pediatrician is "what else could this be?" and "what might we be missing here?"

s, mama.

 

[dianamerrell]

Quote:

Originally Posted by RedOakMomma The short EEG is just a first screen...it isn't always enough to catch seizures that are short or that are deeper in the brain. Keep recording the events on video, and keep writing them down. Ask your pediatrician to refer you to a pediatric neurologist, preferably one at a Children's Hospital. Be "reasonable" with the pediatrician--say (if you feel comfortable with it) "I still feel strongly that the're seizures. I'd like one appointment with the pediatric neurologist just to cover our bases and make sure we've followed through on this." Another question to ask your pediatrician is "what else could this be?" and "what might we be missing here?"

i second redoakmama's great advice

 

[3_opihi]

My dd has epilepsy and has so far had a normal EEG. What my pediatric neurologist said is that the EEG is only a sampling. If you happen to catch a seizure during one then great, but it's not very reliable and not the end all be all to diagnosis.

Just hang in there until you get in to see that neuro. My ped didn't believe dd was having seizures either and the neuro was pretty shocked about that - she should have been on meds a long time ago. In hindsight, I'm glad that we waited for the neuro as I don't think our pediatrician has the expertise to deal with any of those issues.

Just hang in there.

 

[mamaverdi]

Peds can really rot sometimes. Just because they don't believe something is happening, doesn't mean it isn't happening.

I can make you a list a mile long of what peds said weren't happening with my ds and specialists said, um, yes they are.

An EEG is just a sampling. AND again, it needs to be read by a PEDIATRIC neurophysiologist.

Peds and Adults are very different.

mama. Don't give up hope.

 

[Spy]

You're not losing your mind. You are seeing what you're seeing, and you have it documented, and we have all seen it, and something is obviously going on, we can't all lose our minds simultaniously

.

Normal EEG is a good thing though, at least there is no constant visible abnormal activity at this stage, that's something positive. Which of course doesn't mean there is nothing going on at all because we know something is, it's just 'more information required', which makes it a bit harder but has to be done. Talk to the neuro and see what they have to say. Brain is way more complicated than we are aware of, it is very unlikely someone can get all the answers from one basic EEG.

 

[maxymum]

Quote:

How did you prove she was having seizures then? What kind of seizures does she have?

she has 30 minute long tonic clonic seizures (grand mal). so it's pretty obvious for us. and 2 of her eegs, since they were done immediately following seizures DID show focal slowing(?), normal for post seizure. they are pretty long and horrible, but i still waited before putting her on meds/rushing to the dr, tried some "natural" therapies first(but that is just me, not necessarily recommending this). now she is on Keppra. no lasting effects from seizures far as anyone can tell, she is also quite a bit ahead of twin sister developmentally...

how long after seizure was eeg? same day? if we were to go in today(1 month post seizure), dd's eeg would be neg.

 

[3_opihi]

Hey, I was just doing some reading and came across something called cataplexy. Seizure related and sounds like it could be similar to what your ds is doing.

Here is some info:

http://en.wikipedia.org/wiki/Cataplexy

There was a video of a little boy with it on youtube, though I'm not sure how to go back and find it....it just reminded me of your little guy when I saw it.

((hugs)))

 

[RedOakMomma]

Quote:

Originally Posted by Spy EEG is a good thing though, at least there is no constant visible abnormal activity at this stage, that's something positive. .

As frustrating as it is to have to keep pushing, remember what Spy said. In a way it IS good news that the EEG didn't show seizure-independent abnormal activity.

 

[mamaverdi]

Quote:

Originally Posted by Spy We can't all lose our minds simultaneously .

Can I put this in my sig?