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Child with Epilepsy... How do you cope? Scary and overwhelming...

Posted by on Jan. 6, 2013 at 12:11 PM
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Hi all! Im Machelle & just joined. I am a 28yr old single mother of 2, one child with numerous disabilities including Epilepsy. He has suffered Grand Mal seizures, Cluster Seizeres and often Petite ones. He takes Topamax(100mg in a.m. and 150 in the p.m.) He has been on it since age 3(first seizure) and has never had to try any other med(thankfully). He has gone 4 1/2 yrs without a tonic clonic and cluster seizure. But just the other day he woke up right after going to sleep(10 minutes)and begin calling for me. I just could not understand him! He was slurring his words tremendously and the right side of his face lossed function. He could understand everything I was saying to him and could do the things I asked but just couldnt talk right. i was never told anything about a POSTICTAL STATE and it happens right after a seizure. I did not even see him having a seizure bc he was just laying there on his side asleep!(i was in the same room). I was horrified and dialed 911 after 5 minutes. The nurse and physician at the ER made me feel embarrassed and stupid due to them telling me it was just him either hallucinating(which topamax can apparently do, even though he has been on it for 6yrs and no issues except short term memory), or he was dreaming. WTH?! Really?! I called his neurologist the next morning and she had him come in right away( Nationwide Children's in Columbus,OH). Thats when I learned for the very first time of Postictal Events/state... Interesting. But scary for the first time. She said it was probably due to the fact that he was just getting over the flu(he has never had a seizure when ill, even with pneumonia and H1N1). He is good now. They up'd his doseage. But now he is sick again with a cold. Im really praying this does not happen again. Has anyone else encountered this ?? Any advice please?

Thank You Tremendously!!

Machelle

by on Jan. 6, 2013 at 12:11 PM
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Replies (1-5):
cat331
by Member on Jan. 7, 2013 at 3:05 PM
Hi Machelle,

My name is Cat and I've had seizures for over 30 yrs. I had my first
with a febrile seizure.
Just try to stay calm and if a seizure lasts less than 5 minutes, you
pretty much have to just wait it out. Rule of thumb is that's how long
it takes for an ambulance to get there. Always call your doctor
to update. I know it's scary but I became strong from my mom being
strong for me as a child.
Any questions, please ask me. I've had 3 brain surgeries trying to
decrease my daily seizures. So Ive come a long way.
atfp4554
by New Member on Feb. 26, 2013 at 9:19 AM
Hello, my daughter is 3 and has daily seizures. She has clusters as well as grand mals once every week or two. When she first started having seizures my husband and I were wrecks. It's so scary and since she was three she couldn't really talk to us about it. My daughter also has postictal states where she wets, goes limp and then cannot speak. My daughter had increased grand mal activity when she had pneumonia and ear infection. She just had a cold recently and we didn't notice any new seizures but I've been told by her neurologist that being sick can increase seizure activity.
jaog0711
by New Member on Apr. 18, 2013 at 1:09 PM

Machelle,

My son was diagnosed with partial complex seizures this past December and his seizures are pretty much textbook for this type of seizure. His postictal phase is the most notable part of the whole thing bc while his seizure will last 3-5 minutes he will still be suffering for hours after. Immediately following a seizure he will be crying, or awake but very fuzzy, he will say something that doesn't make sense like "I'm ok, I'm just allergic to lots of things" COMPLETELY UNTRUE (he is allergic to nothing)! Then very suddenly he will pass out completely and be out for sometimes hours and when he wakes up he is nauseous and vomitting for hours. After I noticed this pattern, I was told that everything from the seizure - the vomitting was the postictal phase and it's different with every person who has epilepsy. It really is stressful, I will be wondering, what if he doesn't wake up....or what if he starts vomitting while he's still passed out....a million thoughts cross your mind during that time, but try to just breathe and know that your child has a condition and this is just another part of it and it will pass. Hang in there :)

msfila1980
by New Member on Apr. 24, 2013 at 8:05 PM
I've recently been diagnosed with epilepsy & I can't speak for ~30 mins after. I can understand what ppl are saying but just cant speak. Its very unnerving especially when EMS is asking if I've taken any drugs. I can't imagine what it would be like as a parent. I also can't stand or get up after. I know that you just being there would help him feel safe. I am unconscious during ny seizures & when I do first become conscious, I have no clue what happened. If you can just give him reassuring words, I think that would him tremendously. Good luck ★
mama3peaches
by New Member on Apr. 25, 2013 at 9:20 AM

Hi Machelle. I am very new at this. My 8 y/o daughter was diagnosed a couple of weeks ago and we don't even know what kind of seizures she is having yet (72 hour EEG in a week and a half), but know that she is having them a minimum of 3-5 times a day. I can only pray that you and I as well as all the other parents in this group are successful at living life as normally as we can through these seizures.

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