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gatorgirl

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Hi. My 3 yr old son has now had his second seizure and we are awaiting an MRI to I guess try to confirm epilepsy. His first seizure was a febrile seizure but the pediatric neurologist wonders if it was really from a fever.

During his first seizure, his eyes darted from side to side and had jerking movements. With his second one he actually seemed to wake up from a nap and then started rambling incoherently and staring up at the ceiling with his eyes almost rolling completely back. I honestly thought at first he was just dreaming but his eyes popped open but as I tried to get him to come around I realized he was not dreaming at all.

So the neurologist is certain another episode will happen it's just a matter of when (time between both events was 9 months). I already have a 9 year old autistic son so I want to gather as much info as I can before I put my younger son on meds. Oh, and his EEG was normal--but they only got about 13 readable mins since they didn't sedate him.

I don't know if he has epilepsy but I am worried and I'm frightened every time he goes to sleep cause I don't know what's going to happen. Oh, and I forgot to mention I have to wait until May for him to have an MRI. HELP!!!
 
gatorgirl, I cannot imagine the heart break you must feel. My Son of 26 has E so we are light years apart in the age but not in the how we feel….

what I can say, if my son was so small Id be as close as I can, crib in my room, at least for now...BUT we are not in control every minute and we have to accept that, but we sure can be close..And until May comes and other advice given, I’d be real close and observant and noting everything you see, yes every detail, as it will help with diagnose...
 
Gatorgirl

My 7 year old (who is autistic) was just diagnosed 2 months ago with seizures. It is so overwhelming at first and so scary. I have found a lot of good support and information on this site - hopefully it will help you on your journey too.

I agree with Chaz - write down everything you see and communicate with your neurologist. Good luck - and hopefully April will fly by for you to get to May :)
 
My son is HIGHLY susceptible to complex febrile seizures. We went through the whole hoopla oh EEG's and an MRI. He was 11 months when he had his first "set" of them. It is the scariest thing to watch, and puts me on edge every time he coughs since he seizes with the slightest temp. He is almost 3 now, so I am SO hoping he outgrows them soon.

My daughter is 6, and was recently diagnosed with epilepsy. She has REALLY unusual symptoms, ones that I would have NEVER thought were symptoms of seizures.

My daughter had two EEG's and they were normal, which is when I learned normal EEGs don't rule out epilepsy. The best thing I did was start a spreadsheet and track EVERYTHING. Date, time, what happened, how long it lasted, and anything else(fever, headache, etc), that that was a great idea.

You are so on the right track getting it looked at. And, honestly, it sounds like you have a great neurologist who is looking into everything. Good luck!
 
My daughter was 14 when she began to have seizures, and I know there was a period of time that every sound, I was jumping to go see if she was okay. It is built into our instincts. Perhaps you can buy a webcam to hook up where he sleeps so you can get a few things done without sitting outside of his door. Use the 80/20 or 70/30 rule. Do your best and then give yourself a break.

My daughter is 20 now, and has been seizure free for a year, but one never stops being concerned.
 
Thanks so so much for the advice y'all. I would have responded sooner but my email notification isn't working!! I have been afraid to take my eyes off him for even a minute. I used to enjoy sitting outside in the evenings after the kids went to bed to enjoy the peace and quiet but not anymore. I thought the first one would be it and every time his fever went over 99 I started doing the tylenol and motrin rotation so, of course, when he had the second one with no indication of fever or sickness I was completely surprised and felt hopeless.

So now, whenever he naps or goes to bed for the night I keep him with me. When I'm downstairs he's downstairs and the same thing goes for upstairs and at night he sleeps with my husband and me. And I have been going over as many details as possible before the seizure hit. Right before the second one he wanted to nap earlier than normal and seemed a little tired, unusual for a 3 yr old.

As for the MRI, we're military and I'm working to get referred to a civilian hospital because the military has a certain # of days to give care and if that cannot be meet then they have to refer to the outside but they are wanting to not follow that rule. Now I understand that there is only 1 pediatric anesthesiologist and I'm sure he's swamped but this is my child and I will make sure he gets the care he needs. It's my job.
 
I use a Summer brand video monitor in both my kids room. The monitor is nice and big to see. and it makes me feel A LOT more comfortable.
 
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