Do you scrutinize everything your child does?

Carrie - posted on 12/03/2010

I did the same thing. Carlee has photosensitive epilepsy. I used to document every strange thing she did....then I realized I was learning her....the new her since finding out about epilepsy. It's kinda like learning your new baby's cries. Now, I can look at her body, her face and how often she is blinking and know something is going on. You'll get better at it....I do environmental scans now so fast I am like a robot scanning for triggers. I can walk into any place and know if it is going to bother her. I don't think you are scrutinizing everything, I think you are just getting to know your child. It's OK....and you know what sometimes they are just being NORMAL kids. Sometimes new increased doses of meds can make them jerky or twitchy or as we call it here a "Cosmo Kramer" moment. And yes, sometimes those things are ques to something that needs attention right away...and because you are learning them you are going to know the difference. You're just being a good mom. Embrace being a good mom cuz you are!

Patty - posted on 12/03/2010

I am sorry you are going through this! I know it is scary! My son is 5 and just recently been diagnosed with epilepsy. He has most of his seizures at night. I do not sleep much because I am always worried about my son. Every little sound that I hear him make I am up checking on him and I sit and watch him for that unusual behavior. My husband thinks I am crazy but I know I am doing the right thing by keeping a close watch on him. I write any unusual activity down in a log so I can take it in to the neuro and let them see what is going on. I feel that it is normal to scrutinize his behavior, you do it because you love your child and you want to know what is going on with him. You do not want anything terrible to happen. That is what being a good parent is all about. Hang in there. It will get better. Keep watching your child and documenting what is happening. I dont think you could ever watch your child too much or protect your child too much! Good luck with it all!

Christine - posted on 12/02/2010

get a journal and write the wierd things down. then you can take a look back and try to see a pattern.

then when you have a neuor appt. take the journal in, let him see what you've tracked.

It is what I did with my youngest, because no two seizures are alike for her. We started journalling everything. the date, time, weather patterns, moods, absolutely EVERYTHING. we found that one of her most common seizures (the full on grand mal) were during barometric pressure spikes - we live in Calgary where the barometric pressure can go from really high to really low in hours not days.

Tise - posted on 12/01/2010

My son who is now 13 has had seizure since birth! Defantly listen to your mommy meter! Also try to video tape a episode to show your Nero! My son has very limit speech I've learned little signs he gives when he can tell one is about to come! When he was that little I keep a little note book and wrote every switch and funky before and after thing down! Now I can see the signs before he even gives ne his clues! Keep your spirits up 2 is a tuff age no matter how ya slice it! If ya show your Nero all your note and dates, time and what happened video if you can! If he doesn't seem concerned I'd personal look for a new Nero! God bless

Leticia - posted on 12/01/2010

My son started by biting his tongue after a while i knew it was a lil more serious, anywho b4 my story gets LONG, blank stares ihave learned are absence seizures. So i would say pay attention to his every move and if u see it more than once tell neuro. u never know Good luck i know its scary especially w/a child so young!

Renee - posted on 12/01/2010

I keep an ongoing, chronological summary of everything medical or academic about my 15yo who has had a seizure disorder since 4yrs and who is also an Aspy. You have instincts-intuition, and will know when something isn't right more as time goes on and you become more understanding of the subtle warning signs that are out of character for your child.

Jes - posted on 12/01/2010

Definately keep a diary of the behaviors, even those in question. Timing them would be a good help too as well as what he was doing when they started. I question a lot with my son, sometimes its hard to tell his cp from his seizures, but he's only 20 months old. Hang in there, you have a lot of parents that understand how scary it is.

Kelly - posted on 11/29/2010

I understand. My son was diagnosed with epilepsy at age 1 and it is so hard when they are young to tell what could be a seizure sometimes because they do some silly things all on their own. He is 5 now and I constantly ask him if he's alright when I see something out of the ordinary. I'll tell you what else is scary. We've had a second child, she's 6 months and I question things she does all the time. Remember when they were babies and their eyes would roll back when falling asleep. I've had a couple of times I've freaked out seeing this with her. I'll tell you it gets easier as they get older and can communicate with you. We put our Christmas tree up the other day and my son wanted lots of lights so we added a couple strands to our our already prelit tree. Well one strand we added was bothering him. They were cluster bulbs so he was able to tell us and we unplugged that strand. Hang in there.

Cheryl - posted on 11/24/2010

Yes, I'm so sorry to hear about your little one. This is normally a lovely age and to have to worry like this is most disconcerting. However, I also agree, to just keep a diary of what things he does strangely, and when. Seizures often occur when the child is overtired anyway, lack of sleep with cause them, and stress that I know of, so dont fret too much until you know more about what you're having to deal with here. He could easily be having a lot of different types of seizures and your doctor will need to know everything he does.... I think its also best not to talk to the doc too much in front of hte little chap... they're sharper than we think and he may get stressed. I don't think that is "goofing" around behaviour to tell the truth, but then I'm no doc.... Goood Luck Honey xx

Natalie - posted on 11/22/2010

If those are seizures, they sound like partial complex seizures. My oldest son Devon has those. They can do many different things during those types of seizures. You can actually look up the different types of seizures online on www.mayoclinic.com I think is the site. My son's seizures changed after we put him on medication, he had less of them but they were stronger. So instead of him just not responding he would quit breathing, drool, and his arm would twitch, he ran off a couple times, continued to keep trying to eat, every single one is different. I am worried everytime he gets sleepy and watch him like a hawk. He thinks I'm crazy. He's 9 and sees when I am getting nervous. I say just make a note of everything you're suspicious about and tell his dr. The dr should be able to somewhat tell the difference. Good luck.