K.C. is o.k. today. He had a seizure the very next day after we noticed eye rolling and long staring spells. Thank God there are some signs with K.C. It is very frightening to see him have a seizure, waiting for the seizure to end seems like forever. The long spacy staring looks are my number 1 signal that a seizure may happen. When K.C. does have a seizure he always loses control of his bowels and always has a messy diaper afterwards. He gets super sleepy afterwards and sleeps a good three hours. I always feel that after a seizure we take two steps back. It takes a toll on his little brain. We have kept the seizures at bay for the longest time. I don't know what we have done differently to trigger this seizure. Maybe it was too much stimulus. We just don't know. K.C. has had EEG in the past which was very, very, hard to complete. Attaching those electrodes on his head was extremely difficult. He kept pulling them off. A nurse came with a pinwheel and we were able to get them attached while he watched the pinwheel. It came back abnormal and showed that he was having small seizures. The small became large. Now we just have to watch for signs of a seizure, give him medication and let his body have the seizure if it happens and not try to hold him still, just keep him safe.
Hanukkah is here. I have been so worried about K.C. I haven't prepared for the boys. I am trying to catch up today. Can you believe I have no candles for the Menorah? Finding them will be another tough thing. My mother came to our house today with Adam (my brother) and brought her story books. I love reading to the boys, Big Brother loves the stories and K.C. listens, just listens in his own way. He always walks around when I read, but he does stick around. I think he listens. K.C. loves to see the Dreidel spin and really likes to watch us light the Menorah. My Parents and little brother will be coming to our house tonight because K.C. hasn't been well. Big Brother is excited and has been singing Maoz Tzur all morning. I am scattered brain today- completely scatterbrained. I am so thankful my Parents are coming to help out with the boys. K.C. usually hides when they come, but once he sees they are staying for awhile he'll come out. Adam will follow me throughout the house tonight, it will be so nice to spend time with him as well. I love reading about Yehudit and the Greeks. If you have a chance, you must read about her. She was a very brave woman.
10 comments:
I have a pal whose son is on anti seizure meds. It's a horrible 'side effect' to deal with. We're thinking of you. Best wishes
bless you with all this. Enjoy your visit. Glad he is well.
It must be so hard to watch KC seize. I had seizures when I was an adolescent (controled quickly and gone once puberty ended). I know the horror of having them. Thus, when Billy Ray had a series of seizures from a reaction of his ADHD meds I was morified that I wasn't with him (it happened at school and in the ambulance on the way to the hospital).
Dr. Rimland (I think) wrote an article about seizures in some Autistic children. You can try www.autism.com. If it is not still on the website let me know because I think I printed it out and can make you a copy. He does talk about what you reference - that he seems to go two steps back everything he has a seizure. It was the same with Billy Ray.
On the other hand, a consultant friend of mine told me that when her niece has seizures sometimes she deteriorates and others times she actually improves significantly (one time she actually became verbal following a seizure).
Enjoy your holidays,
Peggy Lou
wow. i am so sorry about kc's seizure. that must be very hard and scary. i'm sending the whole family holiday warmth and blessings.
how nice to have your parents visiting and helping. happy hanukkah to everyone!
How frightening for you to watch KC go through his seizures. You are such a wonderful mom to your boys, Tina.
I've been thinking about you a LOT lately. I've been reading Temple Grandin's "Emergence". Have you read it? She has a whole section where she talks about how she was fascinated with sliding glass doors and I keep thinking of KC. She claimed that she was frightened of them, in a way, because she thought that they would trick her and close on her as she was walking through. She was also confused how the entire environment could change on the other side of that sliding glass door but you could still see the prior environment. Made me think about KC.
Lots of love to you during this holiday season.
I'll be praying for your family!! Have a wonderful ,blessed, Holiday!!
Melissa H. is right, you are a wonderful mother to your boys and it must be very frightening to watch him have a seizure. I couldn't even imagine how hard that must be. I wish for you a happy holiday and for there to be health and happiness in your family/home. We love you dearly and can't wait to hear from you again. ~Hugs~
I used to wonder if Noah was having seizures. I have never had him checked and there is NO way I know of where they could ever stick electrodes on his head and he not totally freak and have a meltdown. He did when they did an EKG...it was a nightmare! But he will sometimes (after being overloaded) roll his eyes weird.....and have long staring spells....like a zombie. He also becomes very very drained and tired......but never takes that nap. I mentioned it to the docs before...but they did not think he was having any seizures. I do not notice those episodes happening too much now...they seemed to only occur after a lot of over-stimulation and I try to not over-stimulate Noah if I can keep from it!
Oh Tina. I am so sorry to hear about the seizures. My only experience was when my first had a febrile seizure as a toddler, and that was scary enough. I hope you can find the trigger and prevent anymore from occurring. Many hugs to you both!
Oh Tina. I am so sorry to hear about the seizures. My only experience was when my first had a febrile seizure as a toddler, and that was scary enough. I hope you can find the trigger and prevent anymore from occurring. Many hugs to you both!
Post a Comment