Mayo Update & Our Boys Home!

Having our boys home to celebrate Broc's 21st birthday and Brent's birthday

was what the doctor ordered,

well he didn't order it but it made this mama's heart filled with joy:)

MAYO UPDATE

During my last visit with Dr. Feyissa we also had the RNS engineer there.(this was in July) You will need to go back and read blog entries on June 15, 2022 & December 12, 2022 to learn more on how my RNS implant works. Feel free to send message or comment with questions on the RNS.

At this appointment he discussed with Brent what he had been observing. He explained I had been having both aware and unaware seizures, and also any thing that had happened since my last visit in detail. It is good for Brent to provide outside observation, since many times I do not remember or even know what i did before, during or after the seizures. This could mean, me wandering around not knowing what is going on, slurred speeach, tingling of my lips or on my head, repeating of my words, drop attacks etc. Those are a few examples. Besides by Brent telling me and I record it in my seizure log. (If you are a loved one of someone living with epilepsy or a friend, and want to ask Brent questions please just messsage). Dr Feyissa always asks me before he even says the results how I think it has been going.(He usually knows I am spot on, but he asks before he talks, to see if I am recording seizures that occur or am I feeling something else).

My seizures continue to occur every 2-3 days, perhaps clustering within 24 hours. My usual uncontrolled seizures appear on mostly on my left temporal lobe but recently the RNS data showed my right temporal lobe was once again becoming more active . I also felt "off" and was hearing the conversation Brent was having with Dr Feyissa and the RNS engineer, but I knew i was having a seizure. So just after a few moments, I told him what I felt, and he had me collect the RNS data to see if I had a seizure. Sure enough I had a Focal Aware seizure while they were discussing what has been happening at home, and next steps. I am telling you this to show you seizures can happen anywhere and at anytime. They are not always 'visible" as they can be very short in length and when having a Focal Aware seiure, unless my husband was looking at me he had no idea it happened, just that I wasn't talking just thought I was listening intensely. So of course my husband and Dr Feyissa said, and why didn't you stop us talking. I answered, I was trying to tell if it truly was a seizure or was I experiencing something differemt. I encourange you to tell your dr anything at all that feels not right, and or family/friends always. It is for your best health care program.

Due to what the RNS data showed, what they had observed in the office and what Brent and I logged the following was decided upon: I am keeping on Briviact 100mg 2x a day, Lamotrigine 100mg 2x a day, Lamotrigine 25mg 2 tabs 2x a day, and increased my Clobazam. I am taking 10mg in the Am but at night 15mg. My RNS algororthym stayed the same but increased the bursts from 100 milliseconds to 200 milliseconds.

During this visit Feyissa checked to see if I could be placed in the Xenon trial for focal Epilepsy, but at this time I am not able to due to my PNES seizures & menopause.

OTHER FACTORS THAT COULD BE CAUSE OF FOCAL AWARE SEIZURES INCREASING AND RIGHT TEMPORAL LOBE: Looking into my menopause levels in my bloodwork and if I can be placed on any hormones that will not interfere with seizure meds. My hot flashes have beconme severe and causing less sleep(lack of sleep is a trigger) as well some seizures seem to be occuring during an extreme hot flash. I also have had 2 cortisone shots for my right shoulder arthritis pain. This was an interaction and now currently waiting to see what my CT Orthoscan(Sept.12th) shows if torn labrum is possible. Also, the extreme weather can be triggers.

What's better than FAMILY, Nothing!

My mom and dad always told me the early years are not the hardest, it's when your little boys become young men and you become empty nesters is when it truly gets hard. 

I guess the old saying mom/dad knows best, is very true. When a family lives with an invilisible chronic illness such as epielpsy it places life in an entirely different perspective. Just go back and read my last entry on Team Parmer. The last time our boys were together was when we had Bryce fly out to San Antonio for spring break for us all to see Broc play baseball with UTSA.

The weekend of August 9th, Bryce drove down from KY to see us before he started classes and catch Broc before he drove back to TX. We are truly blessed that even though our boys have very different life goals they are striving to be, they support each other through it all. Bryce might be into aerospcae engineering, you would never know that when he is talking to Broc about baseball cards and asking about UTSA or the Twins. Then you have Broc asking Bryce about which Pokemon cards are worth the most, what is the latest in his grad school laser space research. Don't get me wrong they still give each other their little brotherly jabs as well:) We enjoyed spending time with the boys, heading to watch the Fantastic Four movie in the movie theatre! I can't remember the last time we went to the movies as a family. There is nothing like siting there, large buttery popcorn, and seeing a movie on the big screen. Brought back great memories with my folks and all the grand boys at the theatres.

The last night Brent and I were just sitting in the loveseat enjoying listening to the boys laugh at the kitchen table. Bryce was teaching Broc how to play the card game Magic, and they were just talking about getting back to what they call their "homes". Chatting about friends, what plans they had when they got back. The pic shown above was bitter sweet. Bryce was excited ready to pull out of the driveway head back to KY, but Broc had a MRI that changed his plans which extended his visit to have his meniscus tear taken care of.

I can still hear Bryce say to Broc, come on bring it in B-Broc.

Then they hugged and Bryce said no worries,

you are tough and will be back playing baseball soon.

(insert mom tears as I gave my goodbye hug too)