Who Doesn't Have Some Control Over Seizures?

[darkmarkshark]

Yes, did you read the last sentence in my post? I mentioned that my diet does play a role on my having seizures. That wasn't sarcasm - it was a factual statement about what happens when I eat peas or carrots, both of which are known to negate a state of ketosis.

Also perhaps you should read some of my other posts here. My most common seizure triggers are smells, sunlight passing through tree leaves and slight nervousness. So locking myself up in a dark room, avoiding the outdours and staying away from people is just about the only way to avoid having daily seizures. And as I said, I don't do that because I do have a desire to socialize and experience sunlight. Surely its understandable that I'd desire such things?

[RobinN]

Diet does help as eating peas and carrots for dinner cause me to have bad seizures at night

it is early morning here, and I am working on my first cup of coffee.... this just read odd the first go around. Are you working on a ketogenic diet? Or a LGIT diet? How do you monitor your nutritional choices? I am still learning and would love some dialogue on the subject. I have my daughter on a GFCFSFCF diet (as best I can ... she is a teenager) but I wish I could find a nutritionist that would be willing to work with me on this.

I did read your other posts, and I do understand your issues with going outdoors. I am coming at this from a mother, and if this were my child experiencing this... what would I do. Were you seizure free for any part of your life? (sorry if I go check your profile all that I have typed with be erased, and I am too lazy to cut and past this morning)...

[darkmarkshark]

Its debatable as to whether or not I was seizure free for part of my life. Allegedly yes, but I did have mood issues as a child that resemble my post-ictal state and I would usually become very angry at having to be outside in the summertime so who knows. I may have just been a moody child. Or I may have had seizures but no where near as bad as today.

I follow the atkins for epilepsy diet even though from what I understand its only "officially" considered for children at this point. But it makes a drastic difference, allows for exceptions, and doesn't require me to measure everything. The biggest problem with it is that there are some days I don't feel like eating, and the diet doesn't work when I don't eat, but I'd have that problem on any diet

Everything I eat is doused in oil - meat, nuts, etc. I mix butter in and with peanut butter for a snack. I try stay away from all fruit, breads, rice, beer/wine, popcorn and white/wheat flour. I seem to have no problem at all with amaranth flour but I hate the taste of it and its difficult to make anything that doesn't fall apart. I found that if I say eat turkey baked in olive oil with more added to it for lunch, and eat other "ketogenic" foods for snacks" then I can handle a piece of pizza with extra cheese for dinner. but it probably wouldn't work to try that two days in a row


For a treat I mix whipped cream into a glass of diet orange soda. It makes a sort of fuzzy foam. If I remember correctly, I found out about doing this through a site offering recipes for ketogenic desserts

For the most part there isn't all that much variety in my diet, but I've always preferred it that way. If I have felt good for a while I'll try to reintroduce a food I miss eating and see how badly I feel afterwards.

[RobinN]

I was considered "moody" too, but my migraines didn't begin until I was about 15'ish.
There is "talk" on other neurologist sites, that discuss mood, behavior, and such as being a nutritional malfunction of sorts. How one is to find this out, other than an elimination diet, I am not sure.

I read up on the Atkins, at the beginning of our journey, but dismissed it after reading Dogtor J's interpretation of the disorder. My son's intestinal issues also played a part in my direction. He having Asperger Syndrome, and Rebecca having seiuzres, all the hands pointed toward eliminating gluten and casein. I do believe we have had research here that the Atkins is not just for children, but I would have to search for that. I remember one site where they took their child from 30+ seizures a day down to less than 10. That sure did make an impression on me that diet surely plays a role. How people can not see that is beyond me. So am I to understand that when you do not feel like eating, your tend to have seizures? Can you just sip electrolyte drinks to maintain your blood sugar levels? I have found Emergen C to be a good alternative to Gatorade.

Have you tried Quinoa flours? I have found some pastas made with that, and the grain itself is rather enjoyable. I too have found that Rebecca can cheat a bit on her diet... but it is the level that has me puzzled. I figure if I am careful on my end, that when she isn't it balances things out. It just makes me the bad guy. My son on the other hand, notices right away if he has ingested casein or gluten. His stomach reacts immediately.

Your whip cream drink sounds wonderful. Sorry that cream is not on our list of allowable foods. Also are you aware that diet drinks have aspartame? That is a known neurotoxin... best to stay away from.

I do understand the lack of variety in the diet. As school approaches, I am frustrated with my obvious uncreative approach to sack lunches. There is a site or email that I have been receiving on a rotation diet, and the need to rotate foods, as you can become intolerant of certain foods by eating them over and over. I remember reading that you should not have the same food within a four day period. If I find the information I will bring it back here. Lack of variety does make it easier to monitor and less of a hassle. I just think that if food allergies can be acquired by lack of variety, and if food allergies can cause seizures, then it would be to our advantage to rotate the foods more.

Great discussion....

[darkmarkshark]

Well I can't say for certain but I believe I have asperger's syndrome - never been diagnosed though. And aspies hate change. As a child it was tough to get me to eat anything other than a cheeseburger- i didn't like the way other food tasted and I certainly wasn't going to try anything new somewhere that i'd be expected to eat whatever was on my plate.

I do have a lot of food allergies, but of nothing that I've ever eaten alot of. Just of things I never liked eating - perhaps I was noticing the way they made me feel as a child without quite realizing it and thats why I didn't like them.

[RobinN]

interesting

check out this site:
www.stankurtz.com

[darkmarkshark]

I must say I'm immediately off-out by anyone who considers autism or asperger's as "stealing" away the real person. The first sentence on the homepage gives off the impression that its a "woe is me. My child isn't perfect so I can't love him for who he was. I only care about the child I should have gotten instead" type of site rather than anything that has to do with someone actually wanting to be helpful or caring about autism. The rest of the homepage does nothing to help dissauge that impression. It was only clicking on his bio that showed he had any reason to be so upset just by the fact his son had been diagnosed with autism.

I agree with the common criticisms about autism speaks - if they truly were inerested in helping aspies they wouldn't be promoting the idea that aspies are held hostage by aspergers. They'd be promoting all the good that aspies have done because of their aspie traits (and they certainly wouldn't be denying aspies and autists the chance to be involved in and offer input toward any campaign about aspergers syndrome)

[RobinN]

I see it so differently. Guess I don't get so turned off by the different approaches.
I had no idea that this movement to help these kids was even underway, as I was doing searches for Rebecca. My son was having intestinal issues that was first noticed by a lot of bleeding. I then started researching and came across Stan Kurtz's site. He has video of his son prior to vaccinations and then after. Then he has video of him following his bio-med treatment.

My son is very gifted, but he has had his issues while growing up. Would I have welcomed a method that enabled his brilliance to shine and not to have him have to deal with the negative aspects that this disorder brought his way... You bet I would.
It made my life HELL at the time. Now his intestines are truly distressed, and when I read that this is common in the ASD community, I sit in wonder that there is a common thread.

I guess I look at the good that these folks are doing. With road blocks in their way, as they come from such diverse backgrounds. Many not from the medical field at all. So to have such high expectations of them, and expect that they will speak in language that only fits your views, is asking a lot. If you had a child that was perfectly fine, and one day he was not talking and drooling.... etc would you not go out on the battle field for him?
Did you watch any of the videos? The love that this man has for his son, is evident through and through. He has devoted his life to his healing and helping others do the same.

[darkmarkshark]

I don't expect them to only hold my views. I do however expect them to realize that their child is a person even if its not the person they would preferred to have gotten

*btw did you read my entire post. or just the beginning where I said his site gives off that "woe is me. My life is over because my child isn't the perfect one I was hoping for" part. Which unfortunately is a very common view for parents of aspies to have even though its one of the quickest ways to show you don't care a lick about your child. You'll find no trouble finding hundreds of people who think their child will never be human because they have HFA or asperger's at AutismSpeaks, and that organization has even put out ads designed to invoke similar feelings about aspies in other people as well. And all under the guise of helping people with aspergers - like somehow getting the public to think less of aspies and believe they aren't capable of being truly human is helping them.


In my post above I said "It was only clicking on his bio that showed he had any reason to be so upset just by the fact his son had been diagnosed with autism." Regardless of whether he loves his son or not, his homepage gives one the impression that he doesn't care about his son - his wording indicats he only cares about how his son not being perfect affected him

This guy starts off by saying nothing about changes in his child, or what is child was like, but by how horrible it was for him when his child was diagnosed. There is nothing on the homepage that says anything about a "normal" child losing all his abilities. Just that he "lost" his child because his child had autism. Unless you already know his story there is no reason to think that his son was ever any different than he was when he got the diagnosis

Just look at all the parents who go to asperger's websites and lament about how they lost the chance to ever know who their child really is because the child is an aspie. When in reality they only reason they don't know their child is they refuse to accept that who their child is, is an aspie, not an NT hiding somewhere deep beneath the aspie traits. Many also come in and talk about how they force their child to do unnecessary things that are painful for them just because its normal behavior for an nt. "Omg my son enjoys reading books and doesn't care to have casual conversations with his peers - so what I did was ban books from the house and required him to invite a friend over every night. Just like a normal boy." At least on sites that encourage aspies opinions there are immediately a ton of replies about how thats one the most torturous things you can do the child and how traumatizing such acts were for them and still affect them to this day. But on sites where aspie participation is discouraged there is a lot "wow thats wonderful. No one will guess that he is an introvert and he'll make a ton of friends. I'm going to try this with my kid"

Until these parents are willing to stop talking about how horrible it is that they were given an aspie and realize that their child is a human, even if he is different from what they expected, then they will never know their child, and that lack of knowing has nothing to do with the fact that their child has autism and its certainly not because their child was "lost due to" or "held hostage by" autism.. it takes accepting your child as a human being in order to get to know him, and unfortunatley there are alot of parents of aspies out there who refuse to do that and for no better reason than that their child has aspergers

[RobinN]

I hear your frustration, However, it is hard for me to understand since that was not my approach with my son. Sure... there was a time where I expected him to walk the line, as he was in a traditional high achieving HS. He was unable to at the time, so I allowed him to test out and he left in 10th grade. He then began a community college, but had trouble coping, so we went through some suicidal thoughts. Luckily he found his path and is doing very well these days. He is 23.

He now is sorry that he made his route so difficult. He wishes he had been forced to stick it out. I think some parents are damned if they do and damned if they don't.

I am sorry if you have experienced people in your life that wanted you to be something other than what you are. I hope you are moving forward and being the best that you can be.

If I had a child with an illness, and I knew that there might be a way to heal him, I would do all I could to find the answers. I can't attack any parent for wanting that.

[Zoe]

Well lets see I could shut myself in a dark room and never come out- that would prevent me from experiencing most of my triggers. But I have some desire to socialize and experience sunlight at times so I don't lock myself up to never come out.

Diet does help as eating peas and carrots for dinner cause me to have bad seizures at night

You may be on target about the peas and carrots triggering seizures. A google search on "peas" "seizure threshold" turned up over 500 links. Here's a link to one of them:
http://library.thinkquest.org/CR0214920/epilepsy.htm

And here's one noting sunlight's effect on seizure threshold for some folks:

Seizure trigger factors: Epilepsy Founadation selected sheets - NEVDGP... stimuli such as flickering sunlight, strobe lights and flickering television. ... Extreme stress, however, may lower your seizure threshold and trigger ...
http://www.nevdgp.org.au/info/epilep...o/seizure.html

But that doesn't mean you have to isolate yourself, you are already using strategies to prevent seizures by avoiding food triggers and not staying out in direct sunlight. Maybe you know more on your gut level about how to control your seizures than is obvious. Sounds like you have a lot of insight on your seizures. Cool!

[TonySixPack]

I am not sure if I am alone in this but I can many times stop my seizure from happening before it takes place. When I feel one coming on I usually get really hot. If I immediately get up and splash cold water on my face it usually brings me back to normal. If it does go a little further it feels like my brain is getting caught in a weird 'thought loop' that I cannot break. I recently started having a seizure where I could actually hear myself making uncontrollable inaudible noises. I stood up and simply leaned over as if I were touching my toes and it stopped.

I can only assume that this is not normal and at the same time, like many others, if I have a seizure when I am asleep there is no way to stop it. My triggers are both heat, abnormal fatigue and sometimes lights (movies).

Thank you for the forum to express myself as well as to learn.