I’m at the inquiry stage of seeing if a seizure response dog would be beneficial for Colleen. Over the years, we’ve bought both the Embrace watch and Sami cam to help make sure Colleen is safe.
But, now that she is walking more and more at school at home, it’s still scary to think that at any moment, she could have a seizure or myoclonic jerk. That moment came last week when she had a myoclonic jerk right into her toy. With her face. Ugh..she was brought to urgent care since it looked like she might possible need stitches. Thankfully, the swelling went down and no stitches required. She was still left with a nasty black eye.
Thank goodness for frankincense essential oil! Waiting to hear back if a seizure response dog would be an option. I sincerely hope so, but it means we have to minimally fund $10,000 ourselves. I think we can do it! Also want to get her in for a second stem cell treatment!
In other news, Colleen was nominated for Make-a-wish! It’s still at the beginning stages for that as well, but I’m so excited to her. She decided that meeting Anna and Elsa at Disney would be her wish. I’ll keep you up to date when that will be happening!
Til next time,
It was almost like the epilepsy switch was turned off. Colleen had so much energy, her teachers started asking what we had started doing different. She was vocalizing, almost in a way she was expressing her opinion. And she had some much curiosity.
I’m realizing now that perhaps it was a growth spurt. This morning, I had to hold Colleen as she had myoclonic jerk after jerk. My heart aches for her in moments like these, as I hold her, exhausted in the aftermath. I had really started to hope that the stem cells and her growth were putting an end to the epilepsy monster.
But not yet. I keep fighting and I know to do that, I will have to do everything in my power. We have a donation towards her next stem cell treatment, so working towards saving enough for the next treatment. After much thinking, I started researching what she would need for a seizure alert dog. With how unpredictable the seizure activity is, I know this would be another way to make sure she’s kept as safe as possible.
There’s absolutely nothing that can prepare you for it; a seizure.
It’s been almost 2 years since Colleen has had a seizure. And it was not expected at all. She has a favorite crab toy that has a mirror and little pieces that spin around on a track. She plays with it all the time, and likes to lay on her back with this thing in the air. Scares me, but she’s never dropped it on herself so I don’t think there’s much to worry about. Well, Friday night after she had a bath, I was brushing out her hair and putting it in braids. This was her cue to either deploy the defenses of her hands or try to ignore me. She chose ignoring me, along with playing with her toy.
A little while later, right before 8PM, she was playing away, toy in the air. Then she let it down on her face. She was breathing slightly heavier, and I just thought she was doing something silly. So I took out my phone to record her newest antics. After a moment, I moved it and noticed her eyes fluttering a lot. She was very still, not moving. She wasn’t responding to me talking to her, and I picked her up—limp. I couldn’t believe she was having a seizure and I didn’t even know. I laid her across my arms and started the timer on my phone. How long had it been since it started? Tears, consoling.. my poor baby. Not too long later, she came out of it and I hugged her. Those are the longest minutes of your life.. Just over 2 minutes on my phone. I checked the video, which was about 50 seconds long.. the one where I was stupidly recording her instead of realizing she was having a seizure.
I could go the rest of my life without having to see her go through that. I would very willingly take it upon myself if she didn’t have to go through that. Plus the fear.. She was very tired and grump after the fact. Coupled with her not burping well, it wasn’t until 10:30 where she was finally able to sleep. And I laid down right next to her. How do you sleep after that? Anxiety, fear, depression. It’s just not fair that she has to suffer.
I really hope her embrace watch will be able to help. I’m still not sure if it will be able to sense her type of seizures, so we’ll have to see. For now, I’m waiting until her neurologist office opens. Hoping since her keppra hasn’t been increased in a while that doing some blood work and increasing the dosage will help. I can’t help but hope that maybe without the seizures, her brain her reforming connections, or something that will stop them. Then this happens, and you think, “no, she is still stuck with this monster.”
We need more epilepsy awareness. We need to find a cure..
Last year, I saw information about the Embrace seizure monitoring watch. I was immediately intrigued, since Colleen’s seizures are “silent,” we can’t really tell if they’re happening. This watch would provide so much ease of mind, especially when she’s sleeping.
Her spikes occur more while she’s sleeping. Last year, we went to the epilepsy monitoring unit at a local hospital for an extended EEG. She was having upwards of 500 spikes in a night. Depakote Sprinkles were added, and it significantly reduced the amount of spikes she was having.
Monday, we drove to her new doctor, and the plan is to wean her off the depakote. I’d be lying if I said I wasn’t nervous. Not having an EEG, we don’t know how she is doing. But, she isn’t having any seizures, so it is the doctor’s thought that we can wean and see how she does on just keppra.
Already, there has been a pretty significant change in her behavior. Her teachers and therapists didn’t know she had stopped her morning dose, and commented to Jonathan how much more attentive and talkative she was. He of course told them after they commented. It will be interesting to see how she is once she’s fully weaned.
Which brings me back to the watch; Her doctor signed a form so we can try to get the Embrace watch once it is released. You can read more about it here. I don’t know how it will work with Colleen, but I am very eager to get one. For now, we will keep monitoring Colleen and hope for the best.