Seizures not captured by EEG

Alecia - posted on 06/08/2011 ( 25 moms have responded )

13

5

0

My 20 month old son has been doing seizure-like activity for months (maybe since 9 months old) He rolls/flutters his eyes for a second. It happens throughout the day. He often shakes his head afterward then looks directly at you again. Sometimes it is accompanied by him losing his balance and falling to his hands and knees, even though he hasn't tripped on anything. When he does fall, he stays there and trembles/shakes a bit before he gets up again.

I'm almost certain this is some kind of seizure, but we've had a regular and 24 hour EEG and nothing showed up. On the 24 hour EEG, he was on seizure med trial, so I'm not sure if that's why it didn't show up. The neuro said that any abnormal brain activity would show up on an EEG and if it didn't, then it was behavioral. I don't quite believe that because I've heard that there are some seizures that don't show up on an EEG. Anyone have similar experiences? What did you do?

MOST HELPFUL POSTS

Amiee - posted on 10/24/2013

1

0

0

I am 20 and I have has seizures my whole life, I have been to several neurologists and been hooked up to the EEG several times. The only thing wrong that I see with An EEG is the kids are not doing their normal activities. I can't have a seizure by just laying down. They said before that maybe I was faking it and if anyone has been told that by a doctor it devastates you. Neurologists only look at the brain. That's where they are trained in and that's why I now see an epilepsy specialist. Because they look at all factors which is more likely going to find your answers.

Christy - posted on 06/15/2011

1

16

0

My oldest daughter had numerous EEG's and for what seemed like the longest time, nothing showed up! We spent so much time at Children's Hospital and dealt with so many doctors for each of them to say, "we're almost positive she's epileptic. Let's put her on medication.". Well, being that her EEG's weren't showing anything, that answer wasn't sufficient enough for us.

She began having seizures when she was about 19 months old. She's now 5 and a half and we JUST RECENTLY found out that it was from a skull fracture when she was a year old. It didn't heal properly and the drs said he was glad I listened to my gut instinct and didnt' approve the medication. She's not epileptic at all. Her brain waves actually drop instead of spike as an epileptic's would. No meds can treat her or surgery. All we have is prayer. She hasn't had a seizure in 8 months.

Talk to your dr about an MRI. That's what found my daughters seizure problem.

Lori - posted on 06/15/2011

21

0

0

We did a 48-hour EEG and although my son was taken off meds, exhausted, and every other seizure-inducing activity was initiated, we saw NO activity until we were getting him dressed to go home! Fortunately, I had talked the doctor into leaving the wires connected until the VERY last moment and we caught the activity.

Seizures are SO fickle and unpredictable!!

Stick with your son - he needs you to be his voice. If this doctor is rubbing you the wrong way, find another! You need someone who will be your son's advocate, not someone who is fighting you the whole way!

Good luck, mama!!

Libby - posted on 06/15/2011

80

12

17

I went through something similar to this for two years. We did countless EEGs and other tests, none of which showed any abnormal neurological activity. At one point, they thought he might have migraines because of the falling down episodes.

We did finally get a good diagnosis and things have been AMAZING since then. We've been seizure-free for the longest time ever (even after six different meds/doseages!). The crucial thing to do is start thinking OUTSIDE the box. That's what really helped us. We had gone to many, many, different neurologist, and what finally got us closer to an answer was that she was willing to think outside normal seizure patters. She sent us to a few different doctors (cardiologist, GI doc., and metabolic geneticist). It was an appointment with one of THOSE doctors that finally got us an answer! Just like Lisa said in her post, my son was having seizures as a result of ANOTHER problem. He doesn't have typical epilepsy--he primarily has a metabolic condition that can cause seizures.

So, that would be my advice. Find a doctor who can start asking better questions and wants to think outside the box. For my son, it turned out it was mostly a diet issue. The biochemical geneticist diagnosed him with ketotic hypoglycemia--basically an intolerance to fasting. A heavy increase of sugar in my son's diet did more than ANY of his seizure medications ever did. It stopped all the episodes of falling, limpness, seizures, random staring. All of it. Gone. With just more sugar. Who would have thought!

Samantha - posted on 06/15/2011

4

33

0

Definitely keep pushing and don't give up as it definitely sounds like seizures. I suspected my son had brain trauma from his birth (due to forceps) and had him assessed at 4yo and they were very dismissive about the whole thing. I kept fighting for years and finally the Doctor listened to me when I recorded my son on my mobile phone during a seizure. His eyes would roll up towards the right-hand side of his brain and he would go into automated actions but not see or hear anything. Finally he had all the EEG and MRI's done and the paediatrician discovered scar tissue on his right temporal lobe from you guessed it, his delivery. GRRRRR. He said the eyes will roll towards the side of the brain that is damaged. It only took 4 years for him to finally be diagnosed and it was a very stressful time as he also has Aspergers and some other issues caused by the brain damage which were very difficult to understand and deal with at the time. Good luck and I hope you get the answers you deserve so that you can give your child the best care possible. :-)

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

25 Comments

View replies by

Linda - posted on 11/13/2012

1

0

0

My son's neurologist told me that all seizures are not caught on the eeg. So far, we have only had the 4 hour eeg, but he goes in tomorrow for the 23 hour.

Nicole - posted on 07/29/2011

211

59

100

Alecia,

Hope that you get something soon. let me know how it goes....hope that you get some answers....good luck.

Nicole

Alecia - posted on 07/25/2011

13

5

0

Well, I just now got a copy of the final EEG report...and they *did* find the seizures.

Final interpretation: "This study is diagnostic of an active focal epilepsy with bioccipital onset, with a clinical correlate of eyelid fluttering and stance/truncal unsteadiness (most clearly seen on video).
There are also multifocal epileptiform discharges indicative of a decreased seizure threshold, and of bilateral cerebral
dysfunction. Clinical correlation is recommended."

I am still in the process of getting a second opinion from Children's because our HMO handled it in a very dismissive / nonchalent manner. Thanks everyone for the advice and encouragement!

Nicole - posted on 07/22/2011

211

59

100

Alecia,

My daughter's eeg's have always been abnormal that she's had. I just wanted to pop my message in and tell you that I know of a friend who's son has normal EEG's. They just had an eeg this past week. She's not sure if they showed up yet on his eeg. All of his eeg's that she's had done for her son all have turned normal, but he does have seizrues. Stay with your gut. If you don't trust this nero get a 2nd opinion. Not all the time is it behavioral...even if you can get a video of what he is doing to show the nero. Hang in there...

Nicole

Gina - posted on 07/20/2011

28

78

3

my daughter had her first signs of seizure activity at 2 and 1/2 months old. just constant crying and her one eye wouldnt follow. so i took her to pediatrician and did prelim. test and sent me to childrens hospital right away. the hospital did every test in the book. it took til she was 3 yrs old to be diagnosed with epilepsy. she has a hypothalamic hamartoma that can cause any kind of seizure(my daughter has gelastic seizures or laughing ones.) its a beningn tumor in her hypothalamus. so i would make sure u def get a 2nd opinion and get a 5 day EEG where they take the child off the meds to make a seizure happen if its going to. seems kinda harsh but they need to document it. hope this helps.

Katherine - posted on 06/22/2011

21

5

3

Thanks, everyone!

Lisa Vercellone, what is NCS? My son has a thicker than normal lower left ventricle and we're awaiting a date for both a cardiac and brain MRI. They are not sure if it is contributing to the seizures he has had or not, but either way it is causing an abnormal EKG and we need to understand why.

I told the residents at CHONY that they should consider spending time on forums like these - they would learn a lot and maybe broaden their education. :)

Thanks again,
~Kate

Tania - posted on 06/20/2011

16

3

1

Hi - I agree with Karen, you should get them to check out is heart, i had a cousin that they were treating for seizures, but it ended up being his heart, it didnt start to till he was about 13yrs, he would have black out spells, and then forget what he was doing, they believed he had seizures, they started him on meds, that help for a while then it started again, after more tests they found it was his heart, he was sent to a specialist for his heart condition, unfortunately he had a heart attack at age 15 and passed away. I would make them to do all checks, then you know where you stand.

Carly - posted on 06/19/2011

60

18

0

TRUST YOUR GUT! they kept telling me my daughters seizures were nightmares until i demanded an overnight eeg. her neurologist said that for the test to be effective, she has to be nonmedicated for 48 hours
i would get a second opinion

Karen - posted on 06/19/2011

481

19

44

I had this happen to me as a child. My parents figured they were febril seizures, but I also have a heart murmur. I was supposed to outgrow both, but at age 5 the seizures stopped, but I still have a slight murmur dected only after labor. I would have them check his heart. Murmers are usually nothing to worry about, but in a rare case event, my friend's nephew died of a massive heart attack. At the age of 7yrs old. They blamed it on the murmer and maybe a fall where he hit the ground between his irregular heartbeat. Since he's so little I don't think you have to worry about that but do get his heart checked so you know. And ask about treatment if he does have one.

Lisa - posted on 06/19/2011

18

0

2

Kate, that is what happened to us. The neuro wanted to put my daughter on anti seizure mess and diagnosed her with epilepsy based on mine and other doctors who witnessed her seizures descriptions. We took her too Boston Children's Hospital for a second opinion. We went to thei epilepsy foundation where they admitted her for long term monitoring. She had two attacks while there and that's when they were able to say for certain that it was not epilepsy but NCS causing the seizures. We now see a cardiologist in Hartford, CT who is fantastic and we've been seizure free for 6 months. Good luck finding your answers!

Katherine - posted on 06/19/2011

21

5

3

You all have completely inspired me. The neuro here simply wanted to prescribe a med based on my explanation of the seizures without exploring the thyroid and possible metabolic issues.

So, I called our pediatrician and he is helping me advocate to do our best to get to the root of this before prescribing anything. :)

I'm so thankful I found you all here - the various threads have been incredibly helpful to me.
~Kate

Katherine - posted on 06/19/2011

21

5

3

Also, Libby, were his seizures grand mal, and could you share how they presented?

Thanks again,
Kate

Katherine - posted on 06/19/2011

21

5

3

Hi Libby,
Thank you! Yes, I have yet to figure out how to directly reply to someone since I just found this site. :)

Yes, that's exactly what I was wondering. How did they determine that for your child? Is there a blood test that is done and if so does it need to be a fasting test?

We are at CHONY (Columbia - NYC) right now and there are asking us to stay for another day - we've been here since Friday afternoon). So far his EEG is completely normal (24 hours) and they are hopeful to do an MRI tomorrow morning before discharing us. The Neuro wants to prescribe medicine even though they have no evidence of epilepsy or seizures, so they are going to monitor for another 18+ hours until tomorrow.

Our son is 14 and has had 4 seizures in the last year. Our Dr in Greenwich, CT (where we live) believes there could be a gut/brain barrier issue, determined our son is gluten intolerant, has blood sugar issues and Hashimoto's Thyroiditis. Does this sound similar to your child?

Any direction you can provide would be greatly appreciated!!
Best,
Kate

Libby - posted on 06/19/2011

80

12

17

Katherine--not sure if you might have been directing that question at me about the metabolic disorder? My son has ketotic hypoglycemia, simple as that! Wish it hadn't taken two years and countless doctors to realize that sugar was his real problem....

√v^√v^√♥ - posted on 06/19/2011

12,224

26

238

It's also hard to get a seizure to appear on an EEG, period. Your only testing for a breif period of time, trying to do whatever you can to cause the seizure to show up. That's not the most foolproof system.

There's also a definitive reason why they take video recordings of the whole experiance- you are right, some do not show up on the EEG.

Katherine - posted on 06/19/2011

21

5

3

@Lisa Vercellone, can you share what the metabolic disorder is? We're at Columbia (NYC) due to seizures and an abnormal EKG and ECHO, but they are not sure that is causing our son's seizures. (He's 14) He also has Hasimoto's Thyroiditis, which causes hormonal and metabolic imbalance. I think our son's may be metabolic, as well. Anything you are comfortable sharing would be greatly appreciated!
~Kate

Alecia - posted on 06/15/2011

13

5

0

Thank you so much, ladies, for you all your advice. This helps so much to give me ideas and hope! I really appreciate you all!

Karen - posted on 06/13/2011

13

2

1

My son has epilepsy, and his EEG was normal. They told me it does'nt also show up any epileptic activity unless the wee brain is in that state

Alecia - posted on 06/10/2011

13

5

0

That's interesting because, before he was born, doctors thought they saw a coarctation of the aorta on ultrasound but weren't sure. After birth, they did another ultrasound and didn't find anything. Thank you so much for sharing. I will get a second opinion, probably from Children's Hospital, even though it's out of pocket...

Lisa - posted on 06/09/2011

18

0

2

My daughter had several seizures but nothing ever showed up on the EEG. Her neurologist said it was because the activity was probably in the temporal lobe area and therefore hard to measure. When we did a continuous eeg in the hospital I was told that if she had a seizure while being monitored and it was epilepsy, it would show up (even if it was in the temporal lobe). Turns out my daughters seizures were caused by a heart problem.

I would try a second opinion. I had suspected my daughter had a heart problem even though cardiology kept saying no. It wasn't until we got a second opinion that it was found. Good luck finding answers!

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms