Son had another seizure today!

Messages
52
Reaction score
0
Points
0
My son has had his 3rd major seizure today at school again! 3rd in just a little over a months' time. Each time, it has happened at 9:30 am. during PE activities. We have not allowed him to participate in PE in the gym because up until today, ALL of his major seizures were taking place there. So, we just gave our 'ok' for him to play PE games outside when they do it outside. He was playing hockey before this went down. This has happened WITH an increased dose of trileptal. I can tell it kept him from convulsing as he's done in the past, but, he did go unconscience and was in and out for a period of time with his body stiffening. If the PE teacher hadn't held him, he would have fallen and hit the pavement as he has done in the past. I could tell for a period of about an hour afterwards his body kept having mini seizures...I could tell it was trying to go into a grand mal.

I tried calling the Dr. as we have been instructed to do, and always get voicemail or leave a message with someone. UGH! This is sooo frustrating! NO answers all week from anyone with my son's condition!
 

Sandie

New
Messages
315
Reaction score
0
Points
0
Oh dear, I do hope you get to see your doctor soon. You may have to find another doctor who has your best interests at heart. As a mother, this must be dreadful for you.Good luck with it, I hope your son gets some relief soon.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
17,033
Reaction score
431
Points
193
That's so frustrating, I hope you hear from the doctor soon. You might ask the doc about providing a pager # or alternate person to contact when something like this happens.

I wonder if the time of a day is a factor for your son's seizures too -- maybe his blood sugar takes a little dip then?
 

donnajane

New
Messages
313
Reaction score
0
Points
0
How terrible for your son and you. It must be so frustrating not being able to reach his DR. For me one of my greatest comforts is that we, so far, have been able to reach his Nureologist within a few hours if needed he has asked me to email him as he is usually working in his office which has a computer or it will go to his phone if he is out.
Do you know if the Dr wants to do any tests etc when he has an event like this? We have been given a referal for some tests for when our son has a specific type of thing happen, for him its when he is unable to walk for more than 2 hours. We have been told to take him straight into the Childrens Hospital ED and hand them this referal, they should also be able to then look on his file and see it as well. We have been told it "should" cut out a lot of wasted time between us contacting specialist and them organising these tests. Do you think his Dr might be able to give you something similar to carry on you? Just an idea.
Hope he doesn't have any more major seizures and you are able to get in to see his Dr.
 
Messages
52
Reaction score
0
Points
0
Thank you. I appreciate your thoughts so much. It's all very new to us and we are trying to understand. I was able to get ahold of the Dr. late in the day. All that is being done now is increasing his meds again.

The thing that concerns me the most is that there seems to be a pattern to his seizures. He had an abnormal EEG, and normal MRI (which I am questioning because he was seizing throughout it). His big seizure seems to be every 12-14 days, all but 1 has been at 9:30 am., the other was at 5 pm during MRI, and all but 1 have been on a Friday. Since this has started in March, he has had 4.

I'm thinking I might need to request more testing. A sleep deprived EEG has never been ordered.

My understanding with epilespy is that there is no pattern to it, it's unpredictible. But, my son's seems to have a pattern. Is this common? We are so new, and there is still sooo much for us to learn.
 
Messages
23
Reaction score
0
Points
0
The MRI can be normal while seizing. The MRI checks for structural issues....tumors, blood vessel issues, scar tissue, etc. The EEG measures electrical activity, which is what is actually causing the seizures. It is perfectly plausible that he could have a seizure while having an MRI and still have a normal one. I hope you get answers for your son. It's so scary not to know what's going on.
 
Messages
52
Reaction score
0
Points
0
No, I understand that. That's not what I was referring to. I was referring to the fact of how can they get a good image with him moving like that because of the seizure?
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
17,033
Reaction score
431
Points
193
My understanding with epilepsy is that there is no pattern to it, it's unpredictible. But, my son's seems to have a pattern.
There can be a pattern. What's unpredictable is whose seizures will be patterned and whose will not. Plus the patterns can change over time -- also unpredictably.

It can be tough to nail down why particular patterns occur. Some time-of-day patterns have to do with where in the brain the seizures originate. See http://www.coping-with-epilepsy.com/forums/f20/how-i-schedule-my-seizures-early-mornings-20294/ Some seizure disorders are more likely to produce seizures immediately after waking, when certain brainwaves are dominant. Seizure timing may also be related to rises and falls in blood sugar, or fatigue, or in stress levels. There can be a slow build-up -- for instance as fatigue and stress rise over the course of several weeks -- or there can be an immediate reaction, as in a response to flashing lights. Some time-of-month patterns have to do with hormone fluctuations (particularly in women of course).

You may find that your son's pattern will change (hopefully because the seizures will stop altogether.) I thought my seizures were always going to be late afternoon ones (perhaps when my blood sugar dipped). Then I had one in the mid-morning. Then I had one in the night.
 

Krismutt

New
Messages
12
Reaction score
0
Points
0
My daughter has had a pattern to her seizures for the past six weeks. She has them between 745-900 am, 115-200 pm or 5-6 pm. The morning ones are a little later on the weekend or she usually gets them in the 5-6 hour on the weekend.

We took her meds down as she had been seizure free then almost every day after 5 weeks of weaning down her meds she started have seizures during those times above. Her math teacher said to her 2 weeks ago, "is this going to happen every day?" because she would have to go to the nurse to lay down because her recovery was almost 60-90 minutes.

So yes, seizures can happen in the same time or they can be totally random. We have since had to up her medication to twice the dose she was on originally but still dealing with it. I just posted about her clean EEG so our story is there. Good luck. I know how frustrating it is. My daughter has been out of PE due to a hip flexor injury since January so I haven't had to worry about that but I know that can be worrisome.
 
Messages
52
Reaction score
0
Points
0
I'm sure we will get some answers soon. We are just in the beginning process. It's been a whirlwind for sure. But, we are learning.

I can't believe the teacher asked your daughter that. It's not like she can 'plan' it, or help it. Poor girl. Some people's children! UGH! Seriously! LOL
 
Messages
48
Reaction score
0
Points
0
Her math teacher said to her 2 weeks ago, "is this going to happen every day?" because she would have to go to the nurse to lay down because her recovery was almost 60-90 minutes.
The teacher actually said that?!? Oh my goodness. What a strange question!
 
Top