Over the years of dealing with Epilepsy, we have been very blessed to have had the best of the best to care for our medical needs. Many great doctors, nurses, and specialists have treated us over the years and I am so completely thankful for that. Our medical teams have each been amazing in their own right.
Over 39 years, I have seen a great deal of medical professionals. Some were average but most have been the best I could ever ask for. That goes for my children’s medical staff as well. They truly go above and beyond to meet us where we need it most.
Our newest team of neurologists are just as amazing. I am able to go in with my complete concerns and just hand them over. I am able to request and suggest what I feel is best for my girls and it’s accepted and done. I am so completely thankful for that.
Laycie is coming off of her medication and at this point in our life, we are stopping at half the dose she was previously on. She is now on 50mg of Lamictal morning and night. Previously her dosage was twice this amount.
The higher dosage left her unable to concentrate and retain information daily. Her appetite minimized. Her ability to function was impaired and she was lethargic. My beautiful baby girl was not herself. The medication and the seizures combined to limit her ability to enjoy her life.
Today at half the original dosage, she is eating again. She has more energy. She is more interactive and enjoys every day a little more. Things are far from perfect as she is now a little moodier and still tires easily but overall we are at a better quality of life for her. And we will continue to move forward.
This week she had a follow-up with our wonderful neuro to evaluate where she is on the downgrade and how she is doing mentally and physically with the change. I brought up my concerns, requested that she remain at the level of medication she is now on and I requested we repeat her EEG just to see how her brain is performing and reacting before we go further ahead with the process of eliminating her medication. He agreed that this was the best course of action for us at this time.
Coming off the medication we have noticed that, as I mentioned above, she is a bit moodier. She has meltdowns late in the afternoon when it’s time for her medication to wear off and time for the next dosage. We also notice some jerky, rhythmic patterns of her legs and arms while she’s sleeping, particularly close to time for her to wake in the mornings, which is when her seizures normally take place. These are major concerns that we aren’t willing to ignore and because of this, we have requested the EEG just to see how her brain is reacting and what may be happening in this season.
The ultimate goal is to stop all meds for Laycie but we know that this may never be a reality for her. To live a life as normal as she can possible have is what we hope for. To not need the medication or to find one that works best for her, since her body often reacts negatively to the medication each time, is what we long for. But only with time will we be able to find out if this is a goal that we can accomplish.
So at this point in life, we are at a standstill keeping her dosage level where it is and setting up an EEG to see what is going on in her sweet head right now. Hoping for the best, while we continue on with our life. The EEG is schedule for Christmas time and we are hoping it goes well.
Until next time…
Dana
P.S. I know it’s Epilepsy Awareness Month but our last month of time has been pretty hectic. I’m hoping to get some information and share about our life with Epilepsy as soon as I’m able!
