We were staying in a cabin in the middle of nowhere the first time my baby had a seizure. We had no car and no cell phone reception. I was cradling my child, screaming into the woods for help. Screaming. It was the most terrifying event of my life. And when she finally stopped seizing, I thought she had died. I lost it.That was in June. Rio has had three seizures since then - all febrile or related to a fever. Because the last one was complex and she had issues with breathing, we all agreed to do some further testing. We had a 48 hour EEG at All Children's last week.
My poor baby had, what seemed like, 800 electrodes glued onto her head. Her head was wrapped like a mummy and she was hooked up to a pack of wires and tethered to a machine. We were told that we had to follow her around carrying the pack of wires behind so they wouldn't become disconnected. Trying to follow a 20 month old around is like trying to catch the RoadRunner! We had to come up with a solution and fast! We got one of those toddler backpacks and the electrode pack fit in just perfectly. Rio was able to move about freely.
So far, the test looks normal and we're happy about that. We're told that she'll probably keep having seizures whenever she spikes a fever and will eventually grow out of it (around age 5.) Back to the bubble for us! Germs are our enemies.
I haven't written about this until now because I don't like to dwell on scary experiences, but I thought I'd reach out into the universe and maybe find someone else who has shared a similar experience who might have some tips for me.
I need some ideas for entertaining a 20 month old that are both fun and stimulating. We cannot go to parks, group events, etc. with all this swine flu hanging around. We read, do flash cards, play with toys, play outside on the play set, go for walks, bike rides, and drives. That eats up a couple of hours....just kidding. Any ideas would be greatly appreciated!
My two year old loves playdough, water paints (Target sells them in their book section now), taking a bath with kitchen utensils, a deck of cards tends to keep him busy, and markers...of course I monitor closely. Hang in there...it is a tough season.
ReplyDeleteThanks, Sarah! A deck of cards is a great idea! I'll try that today - of course, they may all end up in the garbage since Rio loves to throw things away now! heh heh
ReplyDeleteI don't know you but saw your post, I've been there. My son had 1 febrile seizure, my daughter had many (including one on an airplane.) I was a wreck- she was fine. She started part-time nursery school at 2 1/2 when her teacher told me she had a husband who had seizures and she wasn't freaked out. (Fortunately she never had one at school.)
ReplyDeleteWe had the EEG- normal but nerve-wracking.
Her first seizure was at 16 mos and we lay owthat year but went to the library, religious services etc. I avoided things like music class where kids shared toys and put them in their mouths,
Her last seizure was before she was 5, Today she is a healthy, bright, happy girl turning 10 next month !!
The experience gave me a tiny, tiny taste of what parents of seriously ill children live with, What a heart-breaking path to walk,
If it really is febrile seizures, you will survive, your girl will thrive and one day it will be a memory,
Best of luck
Lila,
ReplyDeleteThank you, thank you, thank you for your response! I was desperate to find another parent who could show me the light!
I'm glad your little girl has done so well! I have so many questions:
1. How did you avoid sickness and/or seizures...any tips?
2. When she started school, didn't she get sick from the other kids?
3. How often did she have seizures? Was it every time she got sick? And did she have a seizure before she displayed any other symptoms?
4. Did you go to the hospital every time? Were any of them complex?
5. Did you keep her in your room with you? I'm so nervous, my baby sleeps with us now so I'll know if anything happens. I just don't want to screw her up keeping her in our bed until she's 5!
I really appreciate your post and would be beyond grateful for your advice.
You can also e-mail me: armstid@mac.com
Thanks again!!!
My son had two febrile seizures. His first was at 15 months and his second was at 19 months. The first time was the scariest. He woke up from a nap and seemed perfectly fine, felt a little warm and I took his temp which was 99 degrees. I put him down and he walked about 10 feet and collapsed. His eyes rolled and he went limp. We called an ambulance and his fever had spiked in those few seconds he walked those 10 feet to 102. He spent the night in the hospital, went through testing and it was so scary for us. The doctors told us he would probably have more but it was unnecessary to bring him to the ER if he came around within 20 min. Yeah right, I'll just wait while my son is unresponsive...uh no!
ReplyDeleteSo the second time was 4 months later and I drove him to the hospital myself. He laid in the ER and they really did little for him but the peace of mind of knowing we were in a hospital just in case put our minds at ease somewhat.
He's never had another. He is now 4 years old and perfectly healthy. He's never even had an ear infection, the only thing that has ever happened is those two seizures. We of course lived the next couple of years paranoid of seizures and would begin the Motrin/Tylenol rotation immediately when his temp reached 99 degrees.
It is scary but there is a light at the end of the tunnel, if it is febrile seizures she will grow out of them. Good luck and wishing you peace of mind.
Anna,
ReplyDeleteThank you for your comments...made me feel much better. Maybe Rio won't have another (fingers crossed!!!)
Was your son sick with each seizure? and did he get sick in between with no seizure?
I must take my baby's temp 15 times a day - she doesn't even notice anymore. The only problem is that she is a hot tamale naturally and her temp hovers in the low 99s anyway. We had to set a line at over 100 to give her the tylenol/motrin but it scares me. It's such a short jump to 102. I am also afraid of damaging her liver with the regimen but have no other way of possibly controlling her temp once it goes over 100.
Thank you again - you have a lovely family! Isn't adoption awesome!