different seizure for jason?

[jaysmom]

Today at school, Jason had an odd spell....not sure if it was a seizure. As I said in the past about his seizures, he never has the same one twice so not real sure when it is one or not.
He called home from school and was real worried (that is my first clue), he said that his left leg was real 'unsteady and weak' along with not being able to 'focus his attention'. He was in gym class and wasnt even able to catch the ball several times. He said that he was real tired also. That sounds like a seizure to me but it seemed to last like 20 minutes?? confused as it lasted so long.
we dont see his results from his last EEG till the 4th of march....otherwise we would just check with the doctor.
trying not to worry.
chrissy

 

[dfwtexas]

I know what you mean...I have had several times where I am going "was that a seizure?"...people that know I have E are always asking "what do you mean, don't you know" . No, I don't always know. Mine last 20-30 minutes, but neuro says only a minute or two of that time is true seizure, the rest of the time is the after effect of the seizure

 

[jaysmom]

thank you for your response jgbmartin,

it is very frusterating that jason's seizure pattern follows no pattern. i wish i new what to expect ~ better yet ~ what jason can expect.

 

[hawke86]

jgbmartin,
If your seizures lasted 20 to 30 minutes you would be dead. Seizures only last a minutee or two. After the seizures is your recovery time. Everyone post-tictal time is different depending on the type of seizure.

 

[dfwtexas]

Jason's mom, are you keeping a journal of his seizures? It does help to figure out triggers. Even though the seizures change in nature, it helped me to find out what things I have to avoid.
When I have a seizure, I keep doing whatever I was doing, but I mentally have checked out for the 20-30 minutes. So as far as know or don't know, it's all a seizure to me....there's no change in what I can or cannot remember. After the 20-30 minute block, I come out of it, but am confused, not coherent, etc. for awhile longer.

 

[jaysmom]

unfortunately no, i havent been keeping a journal. i am stubborn and keep thinking each one will be the last one and a journal isnt going to be needed. I think I am wrong, sadly.
thanks, i will start one tomorrow and try and go back with what I can remember.
i know it is a good idea.
chrissy

 

[dfwtexas]

I think I was in denial for at least 3 months. The other thing is to start of list of questions for the doctor...I usually only see my neuro every 3-6 months, so I have learned to write down my questions so my short term memory doesn't prevent me from asking. But it is easy to feel overwhelmed in those early appointments...now my doc asks for my list when I come in. Might be good to ask Jason what questions he wants to ask and put on the list too. And who knows, you may not need the journal/list, but in the very least it will allow you to learn about seizures. Best of luck, I know it must be overwhelming to your emotions when it is your child going thru this. It's weird enough to be an adult and go thru it.

 

[RobinN]

jgbmartin,
If your seizures lasted 20 to 30 minutes you would be dead. Seizures only last a minutee or two. After the seizures is your recovery time. Everyone post-tictal time is different depending on the type of seizure.

Hawke this statement is not true.
I was told by Rebecca's pediatrician that a 20 min seizure was not uncommon.
Rebecca has had seizures lasting over 5 min.

 

[RobinN]

unfortunately no, i havent been keeping a journal. i am stubborn and keep thinking each one will be the last one and a journal isnt going to be needed. I think I am wrong, sadly.
thanks, i will start one tomorrow and try and go back with what I can remember.
i know it is a good idea.
chrissy

I keep a monthly calendar that I have color coded it with the events, her TOM, and make notes about nutritional issues, events, or other ideas that could have triggered it. I watch for patterns.
Then I have also made a year calendar, that is just with the color coded squares highlighting each month. I can see the months that are better then others, then I can go check my notes to see why.
I make notes about supplements, body functions , and anything and everything that might be related.
I have put this into a binder, along with blood tests, notes and questions for the doctor, and print outs of medical information that pertains to what my intuition is telling me.

Keeps me sane, and focused.

 

[RobinN]

As for the leg shaking... Rebecca had a spasm in one leg when she was on I think the trileptal. It happened twice, but not again once that med was out of her system. The neurologist said it was a type of a seizure and I could give ativan. I decide that the side effect to that med wasn't worth it. The spasm was over quickly, where as the drug would have caused her to lose half of her day.

I also just thought that if this occurs more often, you might consider magnesium. It helps with muscle contractions, and also has anti convulsant properties. Your son might have a deficiency. Rebecca takes 1000 mg per day.

 

[jaysmom]

Hi Robin,
Thanks for the input. Jasons leg was definately not spasming or shaking...only weak and unsteady. Kinda made him walk like he was drunk, his arm too. I spoke with the teacher lastnight and he was horrified that jason had a seizure in front of him and he didnt recognize it. After telling him that he said that it made sense as he was real uncoordinated and unsteady and he didnt get why...he knew something was wrong but had no idea. Like i said in the past, why cant his seizures just be the same and not different everytime? I am real frusterated because if he cant recognize them as seizures than how will he tell anyone to have help? AHHH!
I spoke with the principal as well this morning and he said (as per my request) he received a dvd to share with his class about epilepsy. It was made to use as a teaching tool for the classroom. that made me happy. i am going in to see it today to see if it is what is appropriate.
sorry to ramble on, just real frusterated and my pediatrician is out of town till the 4th of march. bummer about small towns, you get a doctor when there is one!
I am going to keep a journal from now on and write it all down. I am interested in the nutritional side of it all too, i will do some research on it. when my daughter was born with allergies and asthma we did the naturalpath doctor way and 100% food and vitamin thing for her and made her 5 times worse than ever so dont have a lot of faith in it but maybe it is different for seizures?? never hurts to try. thanks again, robin.
chrissy

 

[Maryann]

different seizure for Jason

~greetings~

I want to apologize if I step on anybodies toes with my views and experiences. I was diagnosed with E when I was 12 and I am 50 now. Further testing 'showed' that I most likely have had 'it' since birth.

first, about nutrition...
I don't remember seeing how old Jason is? but I am sure you looked up the ketogenic diet. it has helped with szr control. My doc said I had enough to worry about if I was on that diet. I HAVE found that a quick high protein helps. When I get that one drink too many feeling. for me a bit of sugar too. Cottage cheese is always good to have in the house, soy protein powder that can be made into a smoothie of sorts. I use v8 berry slash, soy milk and the protein powder and whir it with a hand blender. its not too bad.

absense szrs, sometimes you feel like your body moved, you feel it and you feel that everyone else did too. I feel electric at times and no one sees anything but me being clumsy or tired or just daydreaming.
I live in a small town (400-500 ppl) and the doc suggested I try the next state over for a good neuro. I was in a BIG city (SLC,UT) the doctor had all my records (I tried to get him up to date). He wanted me to have an EEG a couple of hours before he saw me. He looked me in the eyes and said "Has anybody ever told you that you have epilepsy) I don't remember my response but he left my meds alone. I am seeing my old doctor next week as they changed medical and put me on generic meds. DONT ever let someone tell you that it doesnt make a difference.

Please let me know and keep me (us) up to date

Maryannonder:

 

[jaysmom]

Hi Maryann

Jason just turned 13 two weeks ago. we heard of the ketogenic diet but not really looked too hard into it. we are good healthy eaters and try our best.
he has not said anything about the absence seizures but i have noticed them. frankly, i am getting tired of repeating myself!! he is missing tid bits of info here and there.
my biggest frusteration is not knowing what to expect from him. he doesnt know whats next either. we see the doc on the 5th so i quess we will just wait till then and see what he says about his latest eeg.
i wish i had a 'padded room' here so i could thrash about, i am having one of those days and driving myself nuts !!
thank you for your input, everyones opinions are great....appreciate them all.
chrissy

 

[Maryann]

different seizure for Jason

~greetings~

I did have to go through more than one doctor. And remember that a person can have 2 different eegs done in one day they will be completely different. I have had them done and it come back clear, clean nothing. So all I really know is what I have learned first hand. you sound like the kind of Mom I would want on my side. He's lucky.
Be Well
Maryann:rose:

 

[Belinda5000]

My seizures on average last 1-3 minutes but they can last longer or short period."Some time I come to from right away if it's a bad one it can take 15-20 minutes.:agree:I'm still trying find some decent control after growing up with seizures.I've cussed ppl out when being post ictal.
Everyone's sz's are different everyone will react differently.
Belinda

 

[Maryann]

different seizure for Jason

~Good Morning~

I am glad that I am not the only person that has yelled and cursed at ppl. I took the latex glove off an EMT (he gave me the other one while I was still in the ER) I have walked miles home. You know, sometimes you just have to laugh. I went walking naked in the garage one day, took the handle off the fridge.... the normal ...
~peace~
Maryann