I keep hoping I’d have better news to share, but the truth is that the last few months have been hard for Colleen.
At the beginning of November last year when we went to see the neurologist, we brought a list of all of Colleen’s regressions. It’s tough to look at. To see where she was and where she is now. 5 steps forward. 20 steps back. A medication increase really seemed to do the trick. And because there was room to increase a little more, we did. She was doing amazing in school and was able to participate and make strides. Her friends got to see their happy Colleen! Then the week leading up to Christmas break, she came down with the flu. We missed time that should have been spent with family. She slept a lot. Her myoclonic jerks increased.
And now, 4 weeks after she was finally rid of the flu, she’s still really struggling. I’ve lost count of how many times she’s had to come home because she was falling asleep. She’s had more bruises than I care to count from having her myoclonic jerks out of no where. I am sad for her. Her friends miss her and she has barely any energy.
Of course, I’ve been contacting neurology every few days. They’re going to get so sick of me calling that they’re going to have to do something. I’m just at a loss. They finally agreed to reduce her medication a little, and now we get to wait another week to see how she does. Praying this helps and she’ll finally get her energy back. And a little bit of freedom! I’ve had to put some toys away for fear she’s going to have another myoclonic jerk and hit her face again.
Here’s to hoping and praying my next pose has better news, health wise!
After Colleen’s neurologist showed us her MRI and explained everything that had happened, one of the first things I did when I got home was to research brain neuron growth. There were a few articles about research being conducted, but nothing that looked like it would happen for a while. I even emailed the addressed that I could find, expressing the hope I had for our daughter.
Fast forward to a few weeks ago when I discovered the Duke is going to be conducting a stem cell study and there was a doctor in California that had been treating children with cord stem cells with amazing results. I know that this is a relatively new treatment for CP..but there is HOPE!
It would be a long journey, but I would go to the ends of the earth to help Colleen in any way we could. I started a YouCaring fundraiser, and anything donated will go directly to Colleen receiving this stem cell therapy. I explain more of Colleen story in the link! Thank you so much for taking to time to read! We appreciate any and all donations and of course, would love prayers! ❤
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.