Is it me alone or anyone else with me?

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Amy

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Hello All,

This is the 2nd time my child having seizure (he has had many times earlier), with my strong "aura" for atleast for the last 24 hrs. No other difference seen, I had been feeling strongly that he is going to have a seizure since last night. I don't know why... Yes, he had it this afternoon at 12.30 at school... poor baby is sleeping with a horrible head ache since then, threw up twice in between.

I've read many of your posts that the individual with seizure may have an "aura". As I mentioned earlier my child can't express that much, due to his language delay/ autism. But how come I get this aura? Is this called aura? Or something else? Hope I can do something to stop it from occuring. I feel so sad and upset, just helplessly watching him seize.

Just to give a background, remember my earlier post? He was on "valproic acid" for 1 1/2 months, stopped eating food / lots of sleep problems/acute pancreatitis = drs told to stop the medicine immediately. he is not on any medicine, for the past 2 weeks.

Any help / thoughts / prayers would be appreciated. I feel so lonely...tired and helpless.
Thanks for reading,
Amy
 
(((((( Amy ))))))))

:rose:

So sorry to hear about your child,
but welcome to CWE! Have you
consulted with your child's Neuro
or Epi - who's treating him? If not,
you should follow through. I strongly
recommend this!

Feel free to browse around and make
yourself a home!
 
My hubby always tells me that he could tell I was going to have a seizure....I keep asking him why he didn't let me in on the secret. :) I don't know that what you're having are auras per se. I think that you, like my husband, may notice changes in behavior, mood, or maybe even body odor that I and your son don't. Kind of like my cats that always acted weird on days that I was going to have a seizure.... Just a thought. :)
 
There was a period of time when I could tell (within 24 hours) if my wife was going to have a TC seizure. I was never able to nail it down exactly what I was cluing in on. Sometimes people are just in tune with another I think (very scientific, I know).

BTW, that is not an aura as defined in the simple partial seizure context.
 
As Rebecca continues to have seizures, I am making mental notes constantly and perhaps will clue into her patterns. Her school chums have been making comments too.
 
Thanks a lot for all the replies. I feel so good to see your support. I have one more question. After seizures my son has a bad head ache usually atleast for a day. Even throws up at times. Is that common for almost everyone?

What do you take for head ache? Does tylenol help usually or anything different? Pls let me know.

Thanks a lot,
Amy
 
Amy said:
Thanks a lot for all the replies. I feel so good to see your support. I have one more question. After seizures my son has a bad head ache usually atleast for a day. Even throws up at times. Is that common for almost everyone?

What do you take for head ache? Does tylenol help usually or anything different? Pls let me know.

Thanks a lot,
Amy
Click to expand...

1) It's not unusual to vomit/throw up
after a T/C - I've thrown up after one.

2) Almost all my seizures (except for
Absence unless it was status or back
to back) - I would have a headache
which would range from mild to severe.

3) As for Tylenol - you would need to
speak with your Neuro / Epi. If he has
an emergency medication (ie: Ativan,
Diastat, etc) - Your Neuro / Epi should
have provided you instructions all
specifically.

I would have a heart-to-heart talk
with your Neuro / Epi or the ARNP
for more specific instructions in deal-
ing with your son.

If he is experiencing this many seizures
then something is WRONG! An appt.
should be scheduled and things should
be reviewed and go over with. It
could mean a lot of things. I am not
a Medical Doctor, nor can I give you
or anyone any advisories except what
I've provided above - CALL YOUR
DOCTOR and MAKE AN APPT! If the
seizures last more than 5 minutes
or he is continually seizing - call 911
and get him to the Hospital via
ambulance and let the ER Doctors
handle your son from there and if
necessary, and have an Administrator
(who also acts as an Advocate) review
how your Doctor is treating your son,
he/she may put in a new Neuro/Epi
in to treat your son.

Sometimes the Administrator can see
things that you cannot. And they can
also determine if the Doctor is doing
their job or not. That is what they are
there for. So you have a "plus" on your
side and to your favor and especially
for your son's own well being!
 
Hi Amy! Actually, I have grandmal (tonic clonic) seizures, and I only occasionally have a headache after. It's never bad enough to make me vomit. Just a mild ache. But then, that's me. I very rarely get headaches. Maybe 2-3 times per year. I'd agree with Brain. Consult your doctor.
 
I also get headaches after seizures, especially grand mals I will get a migrane sometimes before and other times after and/or both. I have at times but not always also thrown up after GM's.
I also will end up with a bad headache after having several partials in one day.

I also would be calling his neuro and do the things that are stated in the other responses.
 
Ha! I finally found out why my hubby never tells me what days he feels I'm going to have a seizure. He told me last night that it was because he didn't want me stressing about it, and triggering one. :) So instead, he just stays nearby and keeps the phone on so that he can get to me as fast as possible. :)
 
Rebecca has headaches after a seizure, however she has only thrown up after one of them. I do notice though that when the EMTs give her oxygen she is able to pull out of it much quicker. You might look into this form of therapy. I was told you can rent the oxygen tanks and do it yourself. ....
(though the paramedics are much cuter).
 
Dear Brain & others, Once again thanks for all your replies. It always helps me when I hear from you guys the feed back, as it is hard for my son to tell me exactly how painful his head ache is etc. And Brain, just want to clarify that we do have a neuro for my son, he started getting seizure (atonic to start with, when he was 5 for the first time. we tried trileptal & keppra for 2 1/2 yrs with NO success, the freq became more, when he was on med. Then we stopped it all, tried Ayurveda (not for seizure, but in general to boost his immune system etc) & he became seizure free for almost 1 yr+. Then during last 6 months+, he has again started to have partial cplx type, duration is usually once a month. I DO have diastat with me and ativan.

In last 3 months we DID do MRI & EEG, both were normal. THere was no noticeable change in either.

This time, on Jan 2nd, he had a prolonged seizure for ~7 min. (we called 911 after 2 min., right after giving diastat, as it was the first time used. Previous ones hardly used to last for <1 -2 min.). He was started on valproic acid right away, IN ONE MONTH THIS MEDICINE DAMAGED HIS PANCREAS, WITH HORRIBLE STOMACH PAINS OFTEN, WE LANDED IN ER. THOUGH DR TRIED TO SAY GAS ETC. I DIDN'T WANT TO MOVE FROM THERE, TELLING HER CLEARLY THAT IT IS MUCH SERIOUS THAN THAT & SHE SHD DO ALL RELATED blood TESTS, I ALSO SAID THE MEDICINE IS CAUSING IT, AS THE STOMACH PAINS STARTED FROM DAY 1 AFTER MED. His appetite went down to ZERO. (ACUTE, VALUE WENT UP TO 2500, INSTEAD OF 120-230 NORMAL RANGE). WE WERE TOLD TO STOP VALPROIC RIGHT AWAY.

That is where we are now, with no med. We do have ativan / diastat for emergency usage.

I just thought I shd let you know my full story, as you may not have read my prev. emails, during last 2 months. With this once/month freq of the seizure, after last month's episode of pancreatitis - we still don't dare to think of any medication as valproic took him to a very dangerous level. My ped & neuro say, they are pretty comfortable us staying with emergency medicines diastat & ativan (she also mentioned EACH of the seizure med has some side effects or other, to the rest of the body parts). I am told to use diastat, if the seizure continues for >3 min. & ativan - if he shd be sleeping & can't fall asleep for a long time (at times, he has trouble falling asleep).

Regards,
Amy.
 
Last edited by a moderator:
Ah, just to quickly mention: after valproic was stopped, from day 1, we saw considerable improvemnts & eventually in 1-2 weeks, his stomach pain all vanished, he started eating happily, sleep well. His pancreas has recovered very well, blood test results one is in very normal range, another is 390 instead of 120-230 (previously it was >2400). So all docs are very happy we stopped valproic acid. It was a very narrow escape! Thank God!
After 3 happy weeks, now came this seizure again. :(
 
I saw an increase in seizure activity too with my daughter. Each med had its own interesting change in seizures.
We also are not on any med and actually have not seen a change whatsoever. I think when she is regular, and eats on the "plan" she has a greater chance of staying seizure free.
I also was thinking that due to the fact that my daughter was extremely constipated that the meds would happen to stay in the body longer. I guess most would come out in the urine, but toxins are handled by the liver, so it is possible that the levels are too much in that scenario.

I hope that you find your answer to the recent seizures. Good to hear though that the stomach problems have gone away. Is he eating now?
 
Ha ha ha.... Yes Robin, I agree with you abt oxygen tanks & the paramedics :)
My husband is a priv.pilot too (he recently got his license :) So, he bought this little O2/pulse monitor for his flying purpose. we use it for my son when he gets seizure, the O2 level goes down from 99 all the way down to 65 - which can be dangerous, if it lasts for more than a few min. So, giving O2 is the best.

You are so right. I also have the same feeling that when he is given oxygen, the recovery (not from seizure, but from head ache / bouncing back with a smile to his routines) etc. So, we had our dr prescribe an O2 cylinder. The problem is that they brought 3 huge O2 tanks & said we have to refill every month etc etc. That plan is only for kids / people who need to be O2 throughout the day. So, we almost went ahead with portable O2. Then they closed that chapter too, by saying that ONLY if we have the in home O2 cylinders, then we can get the portable tank (it is a very handy one).
So, we just gave up on that.

And to answer your another email's question, Yes, he is eating great. From the day one of stopping valproic acid med. we started seeing positive changes abt decreased stomach pain & increased appetite. Now he is stomach pain free & eating great. It took ~2 months to be off of those side effects. Also he sleeps great! (touch wood).

Thanks,
Amy
 
I'm sorry, I meant to write "it took ~ 1-2 weeks for him, to be completely off of those side effects from valproic acid". Not 2 months LOL!!
 
Someone mentioned.. not sure if it was here at CWE... that the oxygen that can be purchased or rented from an equipment rental place for (I think) welding is the same and a lot less. I would guess that it isn't as portable either. Just passing along the info. I would want to do research first though.
 
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