This morning it started to snow. Kendall was in her cozy pajamas, and our morning was going as planned. She woke up early and we were enjoying a fire and walking around the house looking out the windows at the big snow flakes. Then, like always, it came to a screeching halt with seizures. I immediately gave her Klonnopin and they started to fade, but the whole cluster lasted 45 minutes. Kendall fell asleep in the middle of it all. She rarely has seizures (that I know of) while she's sleeping. It may be time for an increase in Keppra since she's starting to gain more weight (even though I never really was convinced it worked) And it may be time for another VEEG since they have changed their look. I have a call in to our Neurologist's nurse to wage war on these damn seizures again.
I have to remind myself that since starting the Ketogenic Diet things have gotten better. Much better. But her seizures are starting to increase again and I can't let that happen. I won't let that happen.
We used to see these spasms steadily throughout the entire day. Now they are just every 15-30 seconds for around an hour every 3 or 4 days. I need to remember that this is an improvement!
I'm posting a video of the nasty things after she fell asleep. They tend to get worse and more forceful before they get better, but they did finally stop. This is the tail end of the 45 minutes. Her respiratory rate was 24 and heart rate was 125 through it all, so I didn't worry too much.
Oh, and oddly enough, her ketones and blood sugars were fine right before they hit. Ketones at 6.1 and BS was 183. Ugh. I hate seizures and the damage they do to my baby's already broken brain.
****I just watched the video and it seems she had them more than every 15 seconds....as this video was taken when they had lightened up. So, you can see the spasms at 23, 36, 50, 118, and 133.
Posts
7 comments:
Jocalyn, OH my heart breaks watching this. We know another little boy who has these spasm type seizures on a hourly basis. Poor baby...I know how hard it is to watch it happen.
Hi Jocalyn, so sorry to hear about those terrible seizures. I know how discouraged you must feel when they reoccur after not showing up for awhile. Sending sweet Kendall many hugs xoxo.
Thanks for posting this video Jocalyn. It gives us a teeny tiny glimpse of your day and life with Kendall.
Jocalyn, just read your update - I don't know Kendall's whole Keto "setup" but if she is gaining weight, do you think they need to reduce her calories a little, and maybe that would help the seizures? I know it is so frustrating - we just changed Carson's ratio today to try to make the "monsters" go away more....I hate seizures..and hate that our babies have to go through this..Praying for you guys.
Donna (keto group)
Oh seizures are terrible. It is so hard to watch our little ones go through the seizures. We video tape our little guy's seizure too to help the doctors understand what we are seeing at home.
You mention the ketogenic diet...we are starting to look into that...not sure if that is the right path or not for our little guy.
I pray that it works for your girl!
I HATE SEIZURES!! I know we all do! Just wanted to let you know I stopped by and was thinking of you. Praying they stop and the worst is over!
Take Care,
Stacey Danford (Brock's mom)
I'm so sorry sweet girl. I wish there were something I could do. Sending love and prayers.
On a much, much lighter note, those PJ's are about the cutest things I've ever seen.
Post a Comment