Is this Epilepsy?

[Jay1]

I added your youtube channel link. Please confirm if it is your link. Please request KarenB and AlohaBird and Bernard to look at them. They are very knowledgeable and may point you in the right direction.

https://www.youtube.com/channel/UCIjT9vbDxEI25Y2ZR5AWmJQ

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.)

Vaccines are very important and save us from lot of diseases. Here is the link to US government National Vaccine Injury Compensation Program. If you search the database, you can find the cases where people have been compensated for injuries resulting from vaccines and MMR is one of them.

National Vaccine Injury Compensation Program
http://www.hrsa.gov/vaccinecompensation/index.html

Search Vaccine database of US government
http://www.medalerts.org/vaersdb/index.php


You can see the list of ingredients of various vaccines. Now, most of the vaccines contain aluminium which is a known neurotoxin. Previously, they used to contain mercury.
List of vaccine ingredients
https://en.wikipedia.org/wiki/List_of_vaccine_ingredients


Huffington Post - Merck Has Some Explaining To Do Over Its MMR Vaccine Claims
http://www.huffingtonpost.ca/lawrence-solomon/merck-whistleblowers_b_5881914.html


Documents filed in United Sates District Court against Merck (maker of MMR)
http://probeinternational.org/library/wp-content/uploads/2014/09/chatom-v-merck.pdf

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.

These seem to be autistic symptoms. Some parents believe that their kids developed autistic symptoms after getting MMR shots. It signifies the importance of some changes in diet. There is a correlation between autism, seizures and epilepsy. All of them are related to brain. 30-40% of the kids having autistic symptoms tend to develop seizures. Even my own 9 year old son was like that at your daughter's age.

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.

Neurologists generally prescribe drugs only after two unprovoked seizures and suggest wait and watch approach. This do nothing approach is not right as brain is not going to heal with do nothing strategy and the kid will suffer more seizures. (More money for doctors and hospitals and drug companies. A healthy kid is a bad customer.)

The better approach will be to change diet and start healing brain right away (See Dr. Perlmutter videos on youtube or his "Brain Maker" book)

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.

Falls can probably cause brain inflammation and it may reduce seizure threshold. Have you done MRI and ruled out any brain injury or tumors?

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!

Let us accept that your daughter's brain is not able to function at an optimum level and we do not know the underlying cause. However, right kind of food has the potential to reverse various kinds of brain issues and disorders.

 

[mia09]

They ruled out Autism - she is way too social. She is drawn to people and social situations. It is more likely a ADHD to the point of not even engaging on a deep enough level to connect because she is bouncing from one thing to the next (on her own terms.) She is a very animated, bubbly, talkative child - it was impossible for this particular psychologist to even imagine autism possible.

As for the fall, her MRI was normal before - she landed on a mat, and I don't think it was enough impact to cause any issues. I think she was either just really tired (she had been doing some intense training leading up to that.) So hopefully just not paying attention, or she slipped. It would be easier to know, if she dropped and had a tonic clonic, but that isn't happening....thank God. So I am still questioning if she is even having seizures I can't definitively tell, or if she is just that small portion of the population that has seizure tendencies show up on EEG, but never has them?

The pediatric Neurologist we are seeing now isn't convinced the video I have is really a seizure and not just a sick child who is out of it. I find it hard to believe she was just sick and out of it, because I have seen her with a fever of 104, vomiting, and really sick - she was still bouncing off the walls and responsive. He also didn't see the part of the 'episode' I didn't film with her chewing and tongue thrusting over and over. I missed quite a bit before I started taping, because I was just shocked my child was not okay. The link is correct Jay - I also have another channel for gymnastics, so you can see how she usually is (I don't have many videos on either.)

it is the youtube link followed by this after /watch?v=qjNb93gcSsI


I find that very interesting about the rotovirus and seizure link! However, the one time I saw this since March, she wasn't sick at all - she was woken up and really exhausted. I still think it could fit the description of confusional arousal disorder.

As for diet - when you say to cut back on carbs, is this all carbs? Like fruit? Or just pasta, potatoes, sugars obviously, etc. We cut artificial colors a long time ago because I notice crazy behavior changes - so it makes sense she could be helped with diet.

I think we could do a modified improvement, but I am not ready to go full force when she is doing so well right now. How do you handle birthday parties, and all the occasions when everyone else eats cake, cookies, etc? We don't buy this things, but we do have many family occasions and social events.

She doesn't drink juice, eat sugar snacks (except fruit) but she does eat bread and pastas quite often. I grind the wheat and make the bread - and I haven't mastered a gluten free one - what do you feed them? Like what would I send for her lunch at school etc? I need some ideas of meals, please.

 

[AlohaBird]

Hi Mia,
It sounds like you are already eating a very healthy diet compared to most people.
I agree with Karen that you could try a lower carb gluten free approach if you don't want to go full on with the ketogenic diet. If you look up the terms "paleo" and "primal" you will find a lot of information on such diets. One website that has a lot of information is called Mark's Daily Apple. It has a "start here" tab with a whole list of Primal 101 links.

Almond flour and coconut flour are good baking alternatives. Mashed up bananas and eggs makes an awesome pancake batter. Someone mentioned flaxseed above. It is also good for making crackers. Some of those crackers, some cheese, meat leftovers from dinner, and a piece of fruit and you have lunch.
Smoothies are another good breakfast alternative as are eggs. I use frozen fruit plus coconut cream with a dash of nutmeg and cinnamon to make a soft serve ice cream.

So there is no need for a lower carb diet to be an exercise in self deprivation. And it sounds like you know your way around a kitchen so you should be just fine.

Your child's issues seem to be all relating to sleep. I have been doing a lot of research into this as my seizures are nocturnal too.

http://www.coping-with-epilepsy.com/forums/f23/anyone-nocturnal-seizures-25194/

There is a link in the OP of this thread that is well worth a read for anyone trying to sort out what is a seizure and what is some other type of parasomnia.

If there is anything I can help with, please let me know.

 

[KarenB]

I viewed the videos a few days ago. They don't look like the seizures I'm used to (Jon's are very dramatic, obvious seizures); however, they may be partial seizures (and I'm not at all an expert on this type) -- she's conscious, and able to respond to you to a certain degree and speak, but something is definitely off there. I also looked at the video of her sleeping, which also looked more like partial seizures I'm used to seeing (Jon used to sometimes do that kind of stuff right before having a dramatic tonic-clonic). But...it could just be she was having a dream...it's really hard to tell sometimes. However, the hallucinations following the episode when she was awake sound very much like the postictal stage of seizures. I think that with the abnormal EEG in June, the seizures after the MMR (what type of seizures were those?), and the episode in March that the signs are pointing toward epilepsy.

Like Jay 1, I was thinking of Autism when you described the disconnect and lack of engagement. The paradoxical thing is that some kids can be really social and still have autism. This happened with Jonathan -- in fact, he was only diagnosed on the spectrum at age 10, because he didn't present with a lot of the classic autistic symptoms. But 2 developmental psychologists (who at first said there's no way he was autistic) spent about 2 hours with him, and gave him 2 different tests, and he had enough markers on both of them to be on the spectrum.

If I were in this situation, and knowing what I know now, I would use a dietary approach to see if the symptoms abate and the August EEG returns to normal. Since all the seizure meds can cause all sorts of serious problems for children, I would take a more gentle dietary approach. Not the really strict Keto diet, because that takes an enormous amount of work and commitment, and does have some side effects, but I would work with supplements like fish oil to help her brain, and magnesium to help her sleep, and eliminate gluten and sugar. I wouldn't take out any veggies or fruit, but would limit high carb foods like rice, potatoes, corn to very small servings. I would make these changes gradually, one at a time, and log everything that you're doing, and log any further episodes or odd behaviors on her part.

When Jon has a party, I just make a special cupcake for him. In these days, tons of kids are on special diets for reasons ranging from nut allergies to autism to celiac, etc., so your little girl won't be thought odd or stigmatized. I usually make cheesecake, but also have made a fabulous black forest cake with almond flour. The Charlie Foundation website has lots of recipes for yummy treats like cake, cookies, candy, crackers, etc. that are very low-carb, and the paleo people have lots of excellent recipes out there.