Julianne’s Story

A CinderBlock to my REALITY (a mother’s story)

When I found out I was pregnant with my first child, I was in awe that this little one inside me was going to grow up and we got to be the ones tasked with raising this child (our son). I couldn’t wait. My pregnancy went off without a hitch and 2 days after Christmas 1994, we were blessed with a perfect healthy baby boy. He grew and was very healthy. Two years later we blessed our eldest son with a brother (his forever best friend).

Raising boys, for a girly girl mother, takes a lot of faith in your husband to keep your sons from tragedy. But he did and both my sons grew up testing limits while still being lawful good boys. Living where we live, in the San Francisco Bay Area, became too expensive when our eldest was 20 and our younger was 18. So we moved 108 mile SE of SF Bay to more affordable living.

My eldest decided to stay and rented a room from a family friend. So on a visit to my eldest, we were caught totally unaware when he mentioned that he had these really weird episodes that were very quick, but disorientating. During these episodes, he didn’t understand anything anyone was saying. I asked him how often he had these episodes and he said, 4 to 5 times a day. While we were eating lunch, he had one in front of us.

I clearly recognized it as a seizure. We took him directly to the ER. They did tests and discovered a pin hole malformation in his temporal lobe. So his diagnosis was formally Temporal Lobe Epilepsy. He was started on Dilantin, which helped for all of a week, until he had his first grand mal. After that he was on Kepra & Dilantin, then he had lots of focal seizures on the cocktail and he was very agitated and angry. So they added Trileptal to the cocktail hoping to wean him off the Kepra, but that never happened. He would have really long aggressive seizures if they tried weaning.

The epileptologist (who knew there were such things?), after 2 EEGs (one portable and one week-long inpatient telemetry, sans meds) they decided he was a candidate for surgery to excise the malformed part of his temporal lobe where they discovered his seizures originate. That was January this year. His diagnosis was changed to Medicine Resistant Temporal Lobe Epilepsy. He is on a cocktail of 5 seizure meds, and still having focal and bigger seizures. He hasn’t had surgery yet, they just did ANOTHER inpatient EEG, to better map, making sure that the seizures they saw on the other data, was not artifact. Whatever it takes, rigggghhhht? He has completed his 8 hour Psych Eval and the WADA test (numbing affected part of the brain to better understand what possible post surgical deficiencies might occur).

My son is now 24 and has had 4 years stolen from his adult life. He was a very very active guy, all 6’4 of him. His love of cars and driving had to be pushed aside (his license suspended because of his illness). So he feels like this is his life now, that all people see him as is the epilepsy and seizures. He is an artist, a poet, a goofy, fun adventurer whose best friend is his brother.

Upon diagnosis my youngest moved in with his brother to be there for him. he put aside his life too, for his brother. As a mother, I feel like I got 20 years of a healthy child, and then I got a cinder block to the head and had to mother from a distance. There is a part of me that is terrified of the surgery, “what ifs” abound. But maybe – hopeful me thinks – wouldn’t it be great if it stopped all the seizures? My husband and I never go anywhere without our phones. My husband sees the boys after work before heading home, which is great.

I feel like I did this to my son, I didn’t cook him enough in the womb? I am so grateful that God allowed him 20 years before the epilepsy hit him.

I’ve got to give major major props to parents that have had to live with this disease from day 1 or whatever day it reared its ugly ugly head.

How do you ever do normal life with this disease? How do I help my son without it being all about the epilepsy? How do I encourage my youngest to live his own life too? I feel bad because my eldest son made my youngest Medical Power of Attorney. He in essence is the plug puller, if it comes to that. I can’t imagine the stress he feels. I try talking to him, but he is a special breed of child, loyal.

Whoever reads this, please know I am a mother who is reaching out. If you want to reach back, I’m here.

UPDATE – Nov 15th 2019

My eldest son was admitted to the hospital for another Inpatient iEEG Telemetry (EEG with leads that are surgically implanted into his Temporal Lobe, Hippocampus, & Amygdala). He then just did nothing but watch TV, waiting for that one seizure, that will show the surgeons what they need.

Finally on Nov 22nd, 2019 he had his craniotomy. They where able to take off the lesion (it was yellow, I know rigggghhhht?) on his Left side Temporal Lobe, some of his hippocampus, as well as some of the amygdala. He was out of surgery and our next worry was – were there going to be any deficits? (i.e. can he write, talk, memory issues) He came home after 3 days post-surgery! Other than the pain from the skull brackets and skin staples, his only deficit was that he had a hard time following conversations. We had to talk in shorter sentences. That dissipated after a week post-surgical.

He is back on all his meds, the medical team will wean him over the course of a year or less, to make sure his brain has a chance to recover. At the end of that year, the medical team believes that he will be seizure-free. We are so blessed to have the team of Neurology, Epileptologists/Neurosurgeons & Neurosurgery @ Kaiser Permanente Nor-Cal. Without them we wouldn’t have had any hope. Thankful for all the prayers.

My message to families: never lose hope. They are working hard to find whatever cures they can for this horrible disease and make the patient seizure free and have a better quality of life..

I write this on New Years Eve. In 15 minutes, it will be 2020. This is a clean slate. We’ve been given a miracle that I know I’m unworthy for. Let’s go and strive to have this miracle (called surgery) be accessible to all epilepsy patients.

Thanks for reading my story. Be blessed.

Best Regards
Julianne