First, some housekeeping notes:
November is Epilepsy Awareness Month.
The Infantile Spasms Community on Facebook, is recognizing November 3-9 as Infantile Spasms Awareness Week. The professional community is recognizing December 6-10 as Infantile Spasms Awareness Week. This is sponsored by the Child Neurology Foundation.
I intend to share stories from people affected directly or indirectly from epilepsy. If you would like to share your story of how epilepsy touched you or your family, please contact me at ken lininger @ gmail com. (no spaces in the name)
Many of you know, we did battle IS in the beginning. Savanna exhibited classic signs of Focal Cortical Dysplasia. That is, intractable simple/complex partial seizures even though successfully controlling the IS.
7 Months and 3 Days ago Savanna underwent a multilobar TPO resection, surgical intervention for seizure control.
‘The Emotional Roller Coaster’ is what parents with children affected by epilepsy experience when battling this invisible disease. Often, anxiety fills your heart as you begin a new drug trial or more diagnostic tests. While you pray for a solution to end the suffering, what specifically to pray for is sometimes elusive, other than no more seizures.
Routine simple scans transform into complex procedures due to trouble with GA and gaining IV access.
Is she a candidate for surgical treatment? If so, how long should we wait for surgery consideration?
The doctors offer their opinion on the best course of action. Ultimately, faith guides your decision. Faith in the God-given understanding of science, and its champions. And, if there is ever a time to follow your faith, it is during these periods.
As the man of the house, I hide the emotions involved. For reasons that are simply ignorant. But, the confession is, that yes, I feel intense emotion too. I too, shed tears at times. That is not to say I don’t cope and experience happiness. But the bottled up emotion overflows when you might least expect it. Like, when your 5-year-old scores a goal in a soccer game. Or, when I see Savanna do something, that most parents would just take for granted that all kids can do (naturally). Hearing from another parent, whose child lost the battle with IS and is now an angel, well…
Since the last post, Savanna has had an MRI of her Brain and a 23 hour VEEG.
For those of you who wonder what you get from a brain MRI, it is a series of images taken at calculated intervals of space in three directions, back to front, left to right, and bottom to top. Trained eyes can harvest all kinds of information from a high-resolution series taken on 3T machine. Imagine a sliced loaf of bread. Think of creating a slide show by taking a picture of the end of the loaf each time you remove a slice. Each slice would represent one of the images you see in a series of Magnetic Resonance Imaging recordings. Savanna always had normal impressions on her MRI’s. Those who had the bias of the clinical phenotype identified a subtle abnormality. My estimation is that her abnormality would have been more clear from a 12T scan, and that soon, this type of machine will be the typical equipment for patients like Savanna. Here is a video of the images from a series from Savanna’s brain. Pretty interesting I think.
The day before her 23 hour VEEG, Rebecca saw a couple of really disturbing events. Like the slow ride to the top of the first hill on a roller coaster, I had a lump in my throat wondering what was about to happen. Both Rebecca and I saw one event together. It was unmistakable. We were on our way to church. (What are the odds?)
So here we go with this emotional roller coaster. All hands and feet in the vehicle while in motion… During the VEEG, Savanna was all out of sorts. She did not like having the electrodes placed. Wait, this is a little oversimplified. It was like I was involuntarily committing her. She required restraints to place electrodes. Then, being tethered to the wall with a 20 foot cord seem a bit more than just an inconvenience to her. The EMU at Memorial Hermann is now part of the Children’s Hospital which is great! But, the play room was not yet wired to allow patients like her to spend time in that room Confined to the patient room, Savanna was not a happy camper no matter how many toys we had on hand. (One day, wireless transmission will be available, I just know it!)
Even during all the craziness, we had a few good moments. I was able to capture a moment when she looked good and kind of happy. Note the tinker toy in her hand. It is full of holes that her little fingers fit perfectly.
The technicians that remotely monitor the tracings and video ‘pushed the button’ a few times. I saw the tech shortly after the first one, by chance really, as they are not really supposed to talk about what they see. I always found this frustrating (but I learned my lesson this time.)
The tech said she had a short seizure. “Just a small one…” , she said.
Devastated again, but not surprised. I felt like l just fell down a flight of stairs. Physically my body was hurting, and I felt disoriented after that communication. When Savanna is inconsolable, holding her for extended periods is increasingly difficult these days.
She hits hard. She bites even harder.
She is strong. She is strong in more ways than one.
Her development is remarkable. She is walking well now. She has outgrown the AFO’s that aid her when walking. Outgrown them in need, not size. We are moving down to SMO’s, which is less brace. This is just incredible.
She is engaged at times much more with her siblings. Joy, is watching this happen daily. If she is having seizures, they don’t seem to affect her much.
Brandon turned 4 during this time. It was a simple celebration with Savanna’s situation weighing on our minds. We chose camping on Madagorda Beach. Driving on the beach = Awesome!! All the shells to collect = unexpected fun! Camping on the beach = sounds great. Actually sleeping on the beach = miserable. Savanna cried for hours trying to get to sleep. Austin refused to sleep. Rebecca ended up in the truck with the air conditioner running first with Austin, at around 12am, then with Savanna at around 3am. I came home with 79 mosquito bites, but lots of good memories. Yes, we used bug spray, it just didn’t work that well for me.
Ruth turned 21. She had a friend pass away back in Australia right this picture. She has been on her own emotional roller coaster since. We really feel for her, and are being supportive. Everybody deals with these situations in their own way.
Our day in the clinic to discuss VEEG results and the MRI impression finally arrived, after 199 days waiting (since the surgery date). Everyone knew Savanna was doing well for the most part, and we agreed. But, this was potentially another ‘diagnosis day’, no one can deny that fact. Can you say emotional roller coaster?
Dr. Tandon and Dr. Von Allmen felt she was doing very well and that the MRI looked great. Then we got the VEEG report. I could not believe my eyes.
- No significant electrographic changes associated with the push button events.
- No slowing in the right hemisphere.
- No focal discharges.
- No epileptiform activity.
- No seizures.
There was suddenly elation in the room! Like a huge weight lifted from our shoulders. The conversation took on a different tone. Yes, we still had some concerns but they were peripheral at best. We were able to discuss aspects of care for patients like Savanna in way that was more informative in general than just about her situation. Savanna decided to walk around the office and laugh, in a way that had determination behind the actions. It was quite impressive to witness.
Every parent desperately prays for moments like these for their child affected by epilepsy. For now, we are walking with God, looking at the roller coaster over our shoulder, versus walking through the turn styles to the start of another wild ride. We pray for many more days like this for our daughter. We will never stop watching for seizures. It is always in our minds, albeit now in the background.
Halloween this year? A little different. A lot more like a normal Halloween. Savanna went with us versus being 6 days out from her first resection. She did great, and was all girl with her cheerleader outfit. She was not happy about picture time in front of the house, but honestly that was extent of her fussiness that evening.
I leave you today with pictures…. God Bless.