Is this Epilepsy?

[mia09]

Hey there

Long story short(er,) my daughter had the stomach virus, and had a seizure last last friday. I recorded about 2 minutes of it with my phone. Not knowing at the time what it was, we went to the ER in ambulance, and thanks to low blood pressure we were held to do one more bag of fluids. As they removed this bag, she had another one with the nurse there. After being admitted, she had a third one the following day. The neurologists (more than one) and 4 doctors viewed the video. Based on that and the ones she had there, they were able to diagnose her with Complex Partial Seizure Disorder.

I realize she does something weird when she is overtired - sitting up in the bed, eyes open and go crazy, tongue in and out, and she will do something in the covers with her hand sometimes. I think this may also be a seizure now, after watching videos they showed me. Does this fit?

The EEG was normal (I was pretty annoyed they needed her to sleep, but did it 10 minutes after her nap. Every seizure I have seen has been when she was sleeping or waking up?) The MRI was also normal.

For now, we were told to not worry and if she has another seizure to set up a follow up with one of the Pediatric neurologists we saw this week for a video monitor thing. I was given a prescription for some emergency gel to use if she goes longer than 5 minutes, or has clusters. I was also told to go to the epilepsy website and read for more info. They explained this was like a 'perfect storm,' and the virus allowed the underline condition to happen.

Does this mean she has Epilepsy? Is a seizure disorder the same thing? I feel like I am waiting for a ticking time bomb or something. Does this mean she will only have them if she is sick? Or won't have another? Could they start happening without any virus? I just feel like I have such little info!

They also said she will likely outgrow it in a few years. How do they know this?? I can't find anything online that says she likely will with this condition. Possibly, yes...but how do they know 'likely?'

Any info would be so appreciated. Thanks also for reading this far (I tried to make it shorter.)

 

[Zolt]

Hey Mia, sorry to hear about your little one. Welcome to the world of the unknown, were there are few answer compared to question. Could it be epilepsy, well the definition of Epilepsy is having more then just one seizure. The docs are just trying to appeal to your hope that things will only get better. First of all, don't freak out, Epilepsy happens and we all just need to deal with it the best we can with the doctors help. We all hope the docs are right, that this is the perfect storm and all will be well. Did they happen to say what type of stomach virus it was? Must of been really bad one.

Hope you get answers soon,

Cheers

iano: op:

 

[N Sperlo]

Hi Mia.

It sounds like (and I think you understand) the doctors were able to diagnose your daughter with epilepsy AKA "a seizure disorder". Yep. Same thing.

You mention she was doing strange things when she is tired or maybe sleeping. That is similar to my case. I would sit up into strange positions, kick, punch... I have a long list of things I've done in my sleep. My neurologist first diagnosed that as a sleep disorder, but after seeing it himself, he decided it was partial seizures. I was having an EEG during these and it was completely normal. This may go to show you that you may be correct in thinking these are seizures that you are seeing, but no guarantee.

It does sound like the perfect storm. You never said weather the first seizure you noticed was tonic/clonic (grand mal) or partial, so I'm lead to assume it was tonic/clonic. I wouldn't jump to the conclusion that it is a ticking time bomb. That is just setting yourself up for way too much stress which is completely unnecessary, although I understand to an extent what you are going through.

The doctors may thing she has a form of "adolescent epilepsy" which can be outgrown. I was told I may grow out of my epilepsy in my 20's. I was not so lucky. I stopped taking my medicine and after a few years things got worse. The fact of the matter is that epilepsy can change over time. Some times it gets better and others it can get worse. There is no guarantee.

Battle the issues as they come and like Zolt said, don't freak out.

I have found the "goofy sleep seizures" are a little more common than I thought and doctors aren't too quick to diagnose them properly because many don't show on the EEG. If you have any questions, feel free to ask. Recording a video can always be a big help with things like that.

Best of luck.

 

[mia09]

Here is 55 seconds of the video from the first one. I couldn't send the entire video with my phone. The seizure went on for quite a few minutes I guess? I am not sure how long. I tried to arouse her, then got my mom and tried more. I decided to record for 1.45 min to show the doctor, then called the doctor while it was still going on. She became responsive during the call, but was still very out there. She could shake her head saying she couldn't talk. She could say no to drinking because it would make her tummy hurt, and she was hallucinating. She said I had scissors coming out of my eyes, and my mom was an alligator eating flowers. Half way to the hospital in the ambulance she said the scissors went away. None of the responses were appropriate she made in context. When she looked over, it wasn't at anyone, or a response to anyone. After, she was too tired to stay awake, and slept for hours and hours into the next day. She would wake for a few minutes, but just couldn't stay up. They diagnosed this as Partial Complex.

Well, I have a video I posted on youtube, but it says I haven't been a member long enough to post it, so I don't know how to share it?

PS, as for the stomach virus I don't know! They took a stool sample, but then canceled it for some reason. Too many people in charge! My 2 year old also caught it, and she eating crackers in 18-20 hours after it started, and completely well in 3 days. Another child in her class was back in 2 days. I don't know why it was so hard on her

 

[Nakamova]

Hi mia --

You can type in the url for your youtube video -- just spell it out like www - dot - youtube etc. People will figure it out.

I realize she does something weird when she is overtired - sitting up in the bed, eyes open and go crazy, tongue in and out, and she will do something in the covers with her hand sometimes. I think this may also be a seizure now, after watching videos they showed me. Does this fit?

Complex partial seizures can involve "automatic" movements of the mouth and hands. A person having one can appear a bit like sleepwalker -- they are "conscious" but impaired and not making a whole lot of sense. So what you describe sounds consistent with a diagnosis of complex partial seizures. You can read a bit more about them here: http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures

If someone has a lower eizure threshold (i.e., is vulnerable to having seizures), ten stresses of all kinds can potentially trigger seizures, The ses stresses can be things like fatigue, and they can also be something like infection or illness. So your daughter's stomach virus have helped to bring on the seizure in this most recent instance.

 

[mia09]

Ah! Thank you. I created a youtube channel for her. If you search Mia Kelslyn you can view the channel. She hasn't had a full episode as I described (sitting up, eyes open, etc.) since being home.

if you go to youtube then /channel/UCIjT9vbDxEI25Y2ZR5AWmJQ

I find myself looking at everything wondering if it is normal sleep activity or more now. I never thought twice about jerking, moving etc. until now. I just don't want to let something go that would need to be addressed.


I recorded a short video of her clenching her hands, and another with facial twitching. Both lasted a little longer, but it took me a second to get my phone on. I guess I will just wait until I am sure she has a seizure, then show the neurologist these videos. If she is having nocturnal seizures, would they be affecting her during the day? Extra tired, learning etc?

 

[Nakamova]

Yes, nocturnal seizures can definitely have an effect in terms of causing daytime fatigue and learning difficulties. Think of it as like having a big "hangover" after drinking a bit too much. Even if you sleep, you just don't function that well the next day.

 

[mia09]

We had a 12 point EEG today - scheduled before any seizures. It is a brain mapping to help with other things going on (through the psychologist.) Anyway, not looking for any seizures, but in the 60 seconds over her C4 region she had 2 epileptic spikes she said. A little dumbfounded the hospital EEG was normal - following up with neurology next week.

 

[Nakamova]

Sometimes it can take more than one EEG to pick up any abnormal brainwaves. Depending on the kinds of seizure activity, it might be too brief or too deep in the brain to register. Or there might be triggering factors (like fatigue or stress) that might be present during one screening but not during the other.

Anyway, it looks like you have something to go on now. Make sure you write down any questions for the neuro ahead of time -- it can really help.

 

[Jay1]

Hey there

Long story short(er,) my daughter had the stomach virus, and had a seizure last last friday. I recorded about 2 minutes of it with my phone. Not knowing at the time what it was, we went to the ER in ambulance, and thanks to low blood pressure we were held to do one more bag of fluids. As they removed this bag, she had another one with the nurse there. After being admitted, she had a third one the following day. The neurologists (more than one) and 4 doctors viewed the video. Based on that and the ones she had there, they were able to diagnose her with Complex Partial Seizure Disorder.

I realize she does something weird when she is overtired - sitting up in the bed, eyes open and go crazy, tongue in and out, and she will do something in the covers with her hand sometimes. I think this may also be a seizure now, after watching videos they showed me. Does this fit?

The EEG was normal (I was pretty annoyed they needed her to sleep, but did it 10 minutes after her nap. Every seizure I have seen has been when she was sleeping or waking up?) The MRI was also normal.

For now, we were told to not worry and if she has another seizure to set up a follow up with one of the Pediatric neurologists we saw this week for a video monitor thing. I was given a prescription for some emergency gel to use if she goes longer than 5 minutes, or has clusters. I was also told to go to the epilepsy website and read for more info. They explained this was like a 'perfect storm,' and the virus allowed the underline condition to happen.

Does this mean she has Epilepsy? Is a seizure disorder the same thing? I feel like I am waiting for a ticking time bomb or something. Does this mean she will only have them if she is sick? Or won't have another? Could they start happening without any virus? I just feel like I have such little info!

They also said she will likely outgrow it in a few years. How do they know this?? I can't find anything online that says she likely will with this condition. Possibly, yes...but how do they know 'likely?'

Any info would be so appreciated. Thanks also for reading this far (I tried to make it shorter.)

Can you tell us what your daughter eats in a typical day? I have a feeling that this is related to some nutritional deficiency. I have solved my own son's much more worse seizures with changes in his diet. I did this successfully against the advice of many neurologists to put him on drugs.

Yes, this is a ticking time bomb if you do not take any action. Seizures are a way of telling a person that their brain is not getting proper nutrition and brain neurons are not able to communicate with other neurons. See, anyone get a seizure if their seizure threshold is exceeded. The goal is to make that seizure threshold quite high for anyone suffering from seizures.

I would suggest you to chat with KarenB who is a champion mom and faced tough times with her son's seizures for many years. Her son was on numerous drugs but the drugs did not work. Now, her son is doing very good with diet and KarenB is in last stages of weaning her son away from drugs.

I will pray that your daughter's seizures go away and never come back.


Regards,
Jay

 

[mia09]

She eats pretty healthy...We get our eggs from the chickens - free roaming in the yard. We also have a garden so grow lots of organic veggies and berries (no fruit trees, so buy bananas, apples, grapes, etc.) at the store. Her diet has a huge variety and she eats everything (everything from olives to hummus, raw veggies and raspberries and blueberries off the bush/vine.) We don't do much seafood (not any at all really.) Our chicken and beef is all hormone free and grass fed, etc. She gets a probiotic and vitamin D daily. She does eat sugar though (not like cookies and such) but I do make pancakes often (almost daily) with bananas, coconut oil, eggs, flour, and sucanat (cane sugar with less processing so benefits with it.) We don't follow any special diet (gluten free, carb free etc.) but do everything in moderation.

They called her in Keppra after her ambulatory EEG in June that showed Generalized seizure tendencies/waves and spikes. However, we saw a new pediatric neurologist who is checking again - so we are holding off on meds. She will have another EEG on August 6th. I have to keep her up the entire night before - how the heck do I do that?!

 

[Jay1]

She eats pretty healthy...We get our eggs from the chickens - free roaming in the yard. We also have a garden so grow lots of organic veggies and berries (no fruit trees, so buy bananas, apples, grapes, etc.) at the store. Her diet has a huge variety and she eats everything (everything from olives to hummus, raw veggies and raspberries and blueberries off the bush/vine.) We don't do much seafood (not any at all really.) Our chicken and beef is all hormone free and grass fed, etc. She gets a probiotic and vitamin D daily. She does eat sugar though (not like cookies and such) but I do make pancakes often (almost daily) with bananas, coconut oil, eggs, flour, and sucanat (cane sugar with less processing so benefits with it.) We don't follow any special diet (gluten free, carb free etc.) but do everything in moderation.

They called her in Keppra after her ambulatory EEG in June that showed Generalized seizure tendencies/waves and spikes. However, we saw a new pediatric neurologist who is checking again - so we are holding off on meds. She will have another EEG on August 6th. I have to keep her up the entire night before - how the heck do I do that?!

Please read this link to my post on this forum which has more than 45 links to published medical research papers.

http://www.coping-with-epilepsy.com/forums/f23/dietary-changes-seizure-control-25355/index6.html#post301061

 

[mia09]

Thanks - that is a ton to read I will check back when I can. I skimmed the list and we are doing a lot right - one reason I make the pancakes is to get the coconut oil in her! We also have been using omega supplements, although I just ordered more. We haven't thought about ketogenic, and honestly I would only do that as last resort. It is way too hard, and not something I can take on right now...unless she really needs it. She is currently doing really well, and I think because I am able to completely manage her rest and exposure to viruses is almost none - being out of school and it being summer. It seems lots of her issues come from lack of sleep and being sick!

 

[Jay1]

Thanks - that is a ton to read I will check back when I can. I skimmed the list and we are doing a lot right - one reason I make the pancakes is to get the coconut oil in her! We also have been using omega supplements, although I just ordered more. We haven't thought about ketogenic, and honestly I would only do that as last resort. It is way too hard, and not something I can take on right now...unless she really needs it. She is currently doing really well, and I think because I am able to completely manage her rest and exposure to viruses is almost none - being out of school and it being summer. It seems lots of her issues come from lack of sleep and being sick!

Yes, that is a lot to read. My son had two status epilepticus within 25 days - Dec 11, 2014 and Jan 8, 2015. I thought he was going to die.

I am not a medical person but went crazy reading medical published papers. That list is nothing. I have more than 1000 medical research papers in bookmarks. I can not leave my son's health in a neurologist's hands. Do you want to see how couple of neurologists responded to me and acknowledged their lack of knowledge? See, a mom or dad will go to any extent to protect their children.

Lack of sleep is a major trigger as it makes blood brain barrier weaker and allows germs to pass through to brain.

Classic Ketogenic diet with measuring is hard. There is MCT oil diet which is much easier and I follow it.

Avoid foods with high carbs. These are bananas, pancakes, sugar, flour, cookies.

Add fruits with good kind of high fat - avocado is a super food with 90% fat and provides 15 different amino acids to human body.

Reduced magnesium in body is also a big trigger for seizures.

 

[mia09]

Thanks! Looks like I need to come up with a new breakfast - maybe I can do some kind of pancake with avocado instead, and no flour - Your son is very fortunate to have you. I am currently in school (for nursing,) and getting up at 4 AM to study, so I have time to be a single mom taking the girls to gymnastics, etc. in between feeding, washing clothes, and classes. I am living on 4-6 hours of sleep, and truly appreciate you breaking down the key points for a clean diet. I wish I had the time to read everything you posted.

Thanks again!

 

[Jay1]

Thanks! Looks like I need to come up with a new breakfast - maybe I can do some kind of pancake with avocado instead, and no flour - Your son is very fortunate to have you. I am currently in school (for nursing,) and getting up at 4 AM to study, so I have time to be a single mom taking the girls to gymnastics, etc. in between feeding, washing clothes, and classes. I am living on 4-6 hours of sleep, and truly appreciate you breaking down the key points for a clean diet. I wish I had the time to read everything you posted.

Thanks again!

It is interesting that you mentioned nursing. My wife also did her nursing two years ago.

They do not teach nutrition in medicine and nursing courses. I am glad that I did not know anything initially but it motivated me to learn more and more. Everyone including my wife called me ignorant six months ago. Now, I can take on any neurologist and talk to him and even discuss chemical reactions.

People taking AEDs have a very big risk of death in SUDEP. There is not even a single case of death among people using diet.

Please do not cut your sleep below 8 hours. It will make your blood brain barrier weaker and anyone can have seizures if their seizure threshold is exceeded.

 

[Bernard]

...
People taking AEDs have a very big risk of death in SUDEP.

People having seizures are at risk of SUDEP. There are known risk factors[1],[2] that include patients being on 3+ meds, but I haven't seen any evidence that the meds were causitive. I'm guessing it is more likely just indicative of their refractory (severe) condition.

[1] http://www.coping-with-epilepsy.com...death-epilepsy-info-site-link-1489/#post11114

[2] http://www.coping-with-epilepsy.com/forums/f23/article-s-u-d-e-p-boston-globe-22821/#post257545

...
There is not even a single case of death among people using diet.

How would you know this?

...
Please do not cut your sleep below 8 hours. ...

Jay1 - While I agree that sleep is important (and I've explored that topic in depth before), it's not our place to dispense medical advice (or tell members what to do). It's OK to present some facts and let members work out for themselves what might be worth exploring (with their doctor or not).

 

[mia09]

I wish I could always get 8 hours of sleep, but that is not an option for me right now. I was just trying to explain why I couldn't read through many articles right now. I am very open to any info - and very appreciative. With that info I will do my own research and make an educated decision. Having a place to start and someone who has done much research certainly is a welcome shortcut in life.

Thankfully my seizure thresh hold is high enough I have never experienced one in my entire life...and I went days in college with no sleep

My daughter, who is experiencing the seizures - that is a different story. She NEEDS her sleep.

 

[KarenB]

Hi, just wanted to comment on a few things.

The EEG and MRI being "normal" is common to a lot of people with epilepsy. My son has had seizures since age 1, and out of over a dozen EEGs, he has had only a few that showed epileptic spikes, and that was only when he happened to have a seizure while the electrodes were attached, or when he was having a lot of seizures in one day.

I did want to clarify -- did your daughter have anything that appeared to be seizures BEFORE the tummy flu? In the 4 months since she recovered from the illness, has she had anything that looked liked seizures? The reason I'm asking is that there are a number of documented cases of young children with rotavirus (and occasionally other types of intestinal infections) who have seizures during the illness. These are kids who don't have epilepsy and who have normal EEGs (altho, as I mentioned above, a normal EEG doesn't rule out epilepsy). Most of these children were not running fevers and did not have electrolyte imbalance (which could cause seizures). Most of these children did recover completely, with no further seizures and without seizure medication. This may be why your neurologist is taking a "wait and see" approach before prescribing medication. Here's a couple of studies about that:
http://www.ncbi.nlm.nih.gov/pubmed/20472191
http://www.ncbi.nlm.nih.gov/pubmed/14651163
http://www.ncbi.nlm.nih.gov/pubmed/22068069

As Jay1 mentioned, my son is on the Ketogenic Diet for Seizures, and it successfully controls his seizures. Personally, I wish I hadn't waited until it was the last resort to start the diet, as he lost his speech, became incontinent, and had significant brain damage during the time we were working with various meds (which didn't stop the seizures, but did cause a lot of horrific side effects). However, in your case, it's early days yet. I'm hoping that it's the rotovirus seizures, and that she will have a complete recovery. However, I'm a bit concerned that she had the intestinal illness (and seizures) in March, and the June EEG showed epileptic waves and spikes.

If I had it to do over, before going on the very strict Keto diet, I'd just cut out gluten and sugar. And maybe just reduce carbs and increase fats like coconut oil. BTW, you can make those pancakes with flaxseed meal and almond flour (or coconut flour).

 

[mia09]

Hi, just wanted to comment on a few things.

The EEG and MRI being "normal" is common to a lot of people with epilepsy. My son has had seizures since age 1, and out of over a dozen EEGs, he has had only a few that showed epileptic spikes, and that was only when he happened to have a seizure while the electrodes were attached, or when he was having a lot of seizures in one day.

I did want to clarify -- did your daughter have anything that appeared to be seizures BEFORE the tummy flu? In the 4 months since she recovered from the illness, has she had anything that looked liked seizures? The reason I'm asking is that there are a number of documented cases of young children with rotavirus (and occasionally other types of intestinal infections) who have seizures during the illness. These are kids who don't have epilepsy and who have normal EEGs (altho, as I mentioned above, a normal EEG doesn't rule out epilepsy). Most of these children were not running fevers and did not have electrolyte imbalance (which could cause seizures). Most of these children did recover completely, with no further seizures and without seizure medication. This may be why your neurologist is taking a "wait and see" approach before prescribing medication. Here's a couple of studies about that:

As Jay1 mentioned, my son is on the Ketogenic Diet for Seizures, and it successfully controls his seizures. Personally, I wish I hadn't waited until it was the last resort to start the diet, as he lost his speech, became incontinent, and had significant brain damage during the time we were working with various meds (which didn't stop the seizures, but did cause a lot of horrific side effects). However, in your case, it's early days yet. I'm hoping that it's the rotovirus seizures, and that she will have a complete recovery. However, I'm a bit concerned that she had the intestinal illness (and seizures) in March, and the June EEG showed epileptic waves and spikes.

If I had it to do over, before going on the very strict Keto diet, I'd just cut out gluten and sugar. And maybe just reduce carbs and increase fats like coconut oil. BTW, you can make those pancakes with flaxseed meal and almond flour (or coconut flour).

When she was 2 1/2, she had about 6 seizures after getting her MMR shot. 4 days after, was the first one. I thought it was just a side effect of the vaccine, so when they appeared to stop, I didn't think about it. I was in some pretty strong denial when the doctor said seizure, so when they stopped (that I could see, I never thought about it.)

I took her to a psychologist because I noticed some things that were just 'off.' Like she isn't emotionally engaged like I think she should be. Her best friend can get mad, cry and quit talking to her, and she honestly just thinks it is because she is shy. She can see something very graphic - someone very hurt, and it doesn't even connect with her. Also, she is really tired, and more-so now than when she was a toddler. I thought maybe this was all just going to school, etc., but wanted to be sure.

Since March, she has experienced another 'episode' where she was unresponsive, chewing, looking through me, arms extended etc. It is so strange because according to the EEG, it is generalized?! I asked the neurologist and he said they can look like partials even if generalized - everyone is different.

So the other thing is, she started dropping things and bumping into stuff like crazy! I mean, everything was going to be dropped. SHe was climbing the wall at gymnastics, and just let go and fell off from 6 feet up, and just seemed confused for a few seconds.

I could chalk all of this up to ADD, or just over tired, etc...or maybe it is more? Nothing is black and white. I can't say for sure she has had a sezuire even....What if she just has confusional arousal disorder? However, I want to be sure we do everything we need to, so am glad to have a new doctor who is being so responsive to make sure!