Yes that is my title and I mean it. Suck it seizures.
Last Tues we went gluten free with Lily, not for seizures sake but for overall health and hoping for a little more awareness/alertness (and possibly help with tummy troubles). It is going well, it just costs a few more dollars and she pretty much eats all the same things. But I have been noticing an increase in seizures and then they just went haywire. I am not correlating the seizures with the gluten free, I am just sharing our timeline in what is going on in Lily’s world. Anyway they were really increasing, then we went up to Greer for the weekend and they started hitting her hard. Big ones, tonic clonics on top of the myoclonic clusters and atonic drops. I figured it was the elevation and just had her relax all weekend, like we all did. But then on the ride home they were every hour and then they continued at home. She does have a cold, but never a fever. I called neuro Monday and he upped her Sabril even more which she takes in addition to her other 2 meds (sigh) and now we wait until Feb 9th for her appointment with him. I admit she is doing better, but it is usually a temporary fix when this happens. Unfortunately there aren’t a whole lot of choices. We could explore putting a VNS on her other side since her previous one kicked the bucket and ruined her right side or re-visit keto. I hated her on keto, but I hate seizures more so I’m feeling a bit torn as to what to do. I have been able to worry less about her and her overall health and it has been nice, but when her seizures get like this it makes me worry. Worry about her at bedtime mostly. We have a camera on her all night, but still.
And to add to the mommy worry, we are having struggles with Andi Jane. We all know she is a high energy child and it has always been a concern in the back of my mind that it is more than typical hyperness. Lately she has been coming home with bad notes and her report card was poor in behavior areas, frankly I am concerned. I emailed her teacher and she requested that we meet to discuss her further. We meet tomorrow afternoon. I will update with what we decide. I think she just needs to do things that are a little different than for the average child. She is far from average and may need to be taught a little different.
Gotta love kids and worrying about them. At least I have very little worries with Oli at the time being. He is going for his 2 year photo shoot with my amazing talented friend Liz and I just can’t wait. I also can’t bring myself to cutting his precious blond locks so I just know when he is 18 he will say “mom why didn’t you cut my hair” and I will say “because I wasn’t worried about it”
Oh he is my little love. They all are so special, he is just my baby and has yet to worry me, much, so don’t judge.
Keep us in your prayers, Lily with her seizures and our meeting with Andi’s teacher. I just love Andi Jane’s spirit and style and I want to make school a pleasure and not so difficult, I mean at least not in freaking kindergarten!
Calm Amongst the Chaos
Mama of 5 seeking calm in the chaos
Calm Amongst the Chaos 
Praying that Lily's seizures can get under control soon! We have the same issues with our Tyler (he's 12). Seizures suck, they really do. God bless you & your beautiful family!
Hi Kim:My name is also Kim and I've been following your blog for a while now. I live in Vancouver, Canada, and have three children as well (oldest two are girls and my youngest is a boy). My oldest daughter, Charlotta (10) also has special needs and epilepsy (… where do the similarities end??? :-)Anyhow, I was reading in this post that you may try the VNS again for Lily. We are also considering trying it (we were on the Keto diet for 4 years and it worked great when Charlotta was little. Now we're on meds only — Clobazam and Lamotrigine — with OK control). Anyhow, I just wanted to see what your experience with the VNS was?Cheers, K
hey kim, i can't find a contact for you so i will answer you here :)in 2004 lily was the youngest patient (18 mo) to get the vns. i put a lot of hope into it and initially upset with the results. but after awhile we noticed a lot more alertness and when we put her on rapid cycle her seizures seemed to get better. when we checked it in 2009 it was dead so we had surgery to replace the battery and found out the leads were dead so they just removed the battery and closed her up. It was a real bummer, so now we are wondering if we can put it on the left side or if we can have them replace those leads which can be dangerous messing with the vagus nerve. I certainly don't think it is a bad idea to explore. Nice to “meet” you! if you'd like to chat more shoot me an email knothdurft at gmail 🙂
I agree – seizures need to go suck it!! I hope Lily's seizures improve or go away – I had no idea the VNS could burn out. My son Milo needs to get his battery replaced (its been 5+ years) and I'm afraid now!! Best wishes to your family!!!