My dear friends,
As promised by my husband Michael, I would share with you the results of our son Kevin's tests. First of all, to all who prayed for him during his stay at UCSD hospital, and to those who were able to send a bit of money to assist us in this time, I thank you from the bottom of my heart, and my soul rejoices to know that there are still a few kind, caring people in this crazy world.
To keep you updated: Kevin is an adult now. He's in his late twenties. Since he was born, I have known there was something wrong with him, but not one doctor would listen to me, much less order proper tests to pinpoint what was wrong. When he was 21 and a half years of age, he had his first grand mal. We rushed him to our family doctor who ordered an EEG and CAT scan. The EEG showed the seizure, but not the CAT scan. He was put on anti-seizure medication.
Prior to that point from his early teens on he had been misdiagnosed constantly by various doctors and psychiatrists, psychologists and even neurologists who pigeon holed him as either bipolar or manic depressive and was put on drugs not intended for epilepsy. The recent tests prove a lot of why Kevin's whole physiological and spiritual makeup was altered over the course of ten years or so. It points to why he felt God was punishing him rather than seeing it as being a victim soul. His mind just cannot compute the difference.
He was insistent on living on his own from 2004 to 2005, but finally realized there was no future for him in Missouri and he would move to Spokane, where we were living. He saw two neurologists there. The first ordered a very specific CAT scan. In this scan, we could see that there was gray matter in the white space of his brain, and we were further informed that this was the result of an injury when he'd fallen on black ice in a parking lot in 2004 in Branson West, Missouri. We were told that gray matter had leaked out of his brain.
We believe now the fall did indeed jostle something that accelerated his seizures for they became more frequent, lasting longer, causing him real pain. The petite mals, or incomplete seizures were equally frequent, some days he'd have twenty or more. He has told me that even the petite mal is like dying, only he can't die. He can only let the seizures play out and hope he recovers sufficiently after one.
When he came here in September to stay several months with us as he and his long-time girlfriend needed some time apart, we took him to our family physician, whom we trust so much and one of the reasons we moved back to San Diego. He referred Kevin to the UCSD Medical Center for Neurosciences, and he got Dr. Tecoma, who is the assistant head of the entire department.
She offered Kevin several options, as he was afraid the first time we met the doctor, and unsure what any change in medication would do. So, with the grace of God he consented to enter the hospital to let them video tape him 24 hours a day, while his head was covered with electrodes which were also scanned 24 hours a day. In order for these tests to be done, I needed to be with him at every moment. His stay in the hospital was accelerated because of his more frequent and severe seizures. Thankfully, we got him there in time so they could monitor him. The special process he underwent because of all the petite mals and grand mals was actually was intended to prompt Kevin to have small seizures, which they could see and monitor, to know where in his brain the seizures were coming from and how they progressed through his body.
So we were both deprived of sleep. We could not go to sleep until 2 a.m. Then, the staff woke us at 6 a.m. Also, they cut back on his medication. The sleep deprivation and prescription reduction was intended to accelerate the seizures so they could really get a bead on the activity and origins of the attacks.
The first day was uneventful, getting everything set up, and waiting for a seizure to happen. It was awful to sit in his room and watch is every movement, and to not know when or if he would have a seizure.
On day two, he had an incomplete seizure (petite mal) about 2 p.m. I had a button to press whenever he had a seizure, so the staff could not only help him through it, but observe just where he was affected by the seizure. It took a lot of prayer after that incomplete seizure to keep him there. He wanted to come home. He wanted the tests to stop, and he was really afraid that something terrible would happen with the sleep deprivation and lower doses of medication. All I was able to do was be there for him, to talk him out of his fears, and to reassure him that it was vital for him to stay the course, for it was the only way we were ever going to know the what and why of the seizures, what had been wrong with our son from birth.
The next day he had a visitor from his church. No, unfortunately this man is not Traditional Catholic, but a very caring evangelical minister who was a wonderful person and for this time in Kevin's life, a friend placed there for reason only God knows. However, I have often said God writes straight with crooked lines and who knows how the final script will turn out. I was just shaking his hand as he got ready to leave and in that split second while my head was turned toward Kevin's friend, I heard the most awful sound come out of Kevin's mouth, and as I whipped my head around, he was having a grand mal.
It was so strong that his body was thrown against the left side of the bed, and as it continued for more than five minutes, it drove his entire body to the bottom of the bed. Of course, the staff was in the room within seconds, and he was not only observed, but helped. This time, when the convulsions stopped, it took several hours to bring him back fully. By this, I mean that when he has a seizure, his memory is affected, and his language skills, all of his skills are stifled, as if he has to learn everything over again. As he said, it's like dying, only he isn't going to die.
We're it not for my faith I don't know if I could have withstood watching my flesh and blood suffer so. It gave me just an inkling of what our Blessed Mother went through watching her divine Son Jesus undergo His Passion.
Mike had told me that Saint Vitus was the patron saint of epilepsy and I started to pray to him for his intercession. I found his martyrdom fascinating in the aspect that this young man really wasn't that knowledgable both because of being a pre-teen and because his own father was pagan senator in Luciana outside Rome during the reign of the cruel anti-Christian tyrant Emperor Diocletian. What I found absolutely amazing was that the father punished his son for refusing to worship the false gods of Rome and young Vitus did not give in. Mind you, Vitus had no written works, no bible, none of the materials we take for granted today. The early Fathers of the Church attribute his steadfastness to his tutor, Saint Modestus and Saint Crescentia his Roman nurse, both of whom, secretly, were Christians. It was they who stole Vitus away from his father's when his life was threatened.
What truly amazed me was that once they had taken him out of harm's way, they walked right back into the lion's den, so to speak, when they dared to go to the son of the emperor himself to exorcise a demon afflicting a boy, most likely the same age as Vitus. Quite possibly it was Vitus' own urging to help him that prompted them to risk their own lives to help another. No greater love does anyone have than they'd be willing to give their life for another.
I know I'd give my life in a second to save either of our sons, especially to assure their salvation. Despite the successful exorcism of Diocletian's son, the three were captured, tortured and put to death. Some gratitude, hmm? They were martyred in Rome and yet an angel miraculously brought their bodies back to Luciana where Vitus appeared in an apparition to a "distinguished matron of Luciana" as the Catholic Encylopedia relates, so that the bodies could have a proper burial. Their veneration soon spread as well as observances of several miracles attributed to St. Vitus; so much so that many were healed of diseases that caused shaking. Back then many considered such behavior as being possessed. Today we know it as the uncontrollable trembling synonymous with epilepsy. In fact, they have another name for this affliction, appropriately called "St. Vitus Dance" since the convulsions equate to one flaying about as if one is shimmying and rocking. In retrospect, what one sees today in the terrible trash "music" - and I use that word sparingly - it would seem a majority of today's youth are voluntarily doing spasms that replicate the signs of an epileptic.
However, Kevin was never voluntarily convulsing for he has no control when the seizures arise. Having spent the time with him in the hospital and seeing the care and attention he received and the amazing technology available today that just a decade ago was not there, I'm truly thankful to God for the advances made in medicine and the dedication of those trying to help. Mike had mentioned in the alert, which I asked him to put on line back in mid November, that UCSD is one of the leading hospitals in the nation for epilepsy and I came away from there convinced that's true. They are constantly researching the human brain and have made tremendous advances just this past year. There was an article in the paper this morning that talked of a major breakthrough in examining it down to the tiniest neuron. Wow! It amazes me every day how good God is and the marvelous mind of the Almighty in creating man in His image and likeness. If only more would realize God's plan and resort to following His will instead of thinking they can do without worrying about the consequences.
But I digress. I wanted to share the results we received from Dr. Tecoma and her staff after more testing was done. Now, after two plus decades, my husband and I, along with Kevin and his brother Kellin finally know what is wrong and, more importantly, why. Kevin was born with Periventricular nodular heterotopia causing complex partial seizures (partial onset epilepsy) all of which is confirmed by the EEG monitoring, and the video as well. Since he was born, he has been having seizures all the time, only they weren't noticeable to the human eye. He even has incomplete seizures when he sleeps.
As his brain was forming in the womb, something happened which caused some of the gray matter that was meant for the left side of his brain to remain in the white space. In other words, our son's brain did not form correctly. It's probably genetic for it comes from the X chromosone which is my side of the family, but I do not know if it is from my mother's or father's side. From researching this thoroughly over the last week, I understand now for the first time why I had two miscarriages and why the births of both our sons were truly a miracle. I am just concerned for Kevin whether he could pass it on to his children eventually when he marries. The entire left side of his brain is affected, and because of the type of epilepsy he has, surgery is not an option. The origin of the seizures is so deep within his brain, and so microscopic in size that surgery would most likely not improve his condition, and it just might make it worse.
Thus, he has been on an increased dose of one of his two anti-seizure medications. It is not easy for him, and for us to watch him as he continues to struggle with such a handicap, and such suffering. Because the left side of his brain is entirely affected, it is impossible for him to grasp the concept that God loves him very much to have given him such a big cross to carry. His perception of reality is very limited, and most of the time he just doesn't recognize reality at all. His ability to understand the why of most things is nil and, naturally, it explains a lot as to why he has suffered in his social skills for so long.
On the positive side, over his lifetime the right side of his brain has overcompensated for the failure of the left side to operate. Kevin has the most phenomenal memory. He can tell you precisely what he was doing when he was three yeas old, what he wore, what he ate, where he went. It truly is amazing. He has also eye-hand coordination that is incredible. He enjoys playing video games. He received one for his birthday, which was also just days after he got out of the hospital. While his father and I do not condone most video games, this one was a fascinating game of medieval Italy including Venice, Florence and Rome, including inside the Vatican. It's truly amazing what they have done with these dimensional scenes of the early 16th Century with such detail that you actually feel like you are there. In less than a week, he had beaten the game. I was so astounded, because the makers of this video game worked non-stop for over two years to construct it, and Kevin beat them at their own game in a matter of hours. I include the graphic below to show the activities governed by the right side of the brain.
However, with the left side of his brain defective, it explains why he struggled so in school, and why he would still have a difficult time finding a job in this society and economy, and the fact that he cannot live alone until he has been seizure free for a specific period of time. Logic is beyond him because the left side of his brain does not work. Below are the activities that govern the left side and why Kevin reacts as he does because of the deficiencies of not being able to compute what many of us take for granted.
There is so much publicity for raising money for AIDS, and yet so many more suffer from epilepsy and there are so little funds for this affliction that pale in comparison to the politically correct diseases that gain all the attention. Gradually more are becoming aware that what just recently was considered mentally unbalanced in many diagnoses by psychiatrists is many times not insanity but epilepsy. Sometimes I wonder how our son didn't go insane just from the terrible seizures he's experienced. I am so thankful that neurology is starting to take its rightful place in the order of things for psychology has really messed up society, not to mention the undeniable terrible damage the profession did to countless souls in counseling sin with the conciliar bishops and priests who bought into that gobblyedgook garbage.
It is very difficult for any mother to watch her child suffer. How horribly did I feel when I learned that he was born with this defect, and no one knew, or even guessed that it might be epilepsy until 2004. I am thankful for this cross, and I praise God for it. I praise Him in Kevin's name, because Kevin doesn't know or understand that this cross can and will save souls, and he is really a young child trapped in an adult body. His ability to reason is about the age of six, and emotionally he can get up to about twelve years, but he doesn't understand any of this, and it does no good to try and tell him.
Now that we have the what and why, Michael and I have redoubled our prayers asking for a miracle cure if it pleases God, and to keep Kevin innocent and not culpable of any serious sin. That is why I've intensified my petitions to good St. Vitus to intercede on behalf of Kevin for the sake of his soul. In fact, if his ability to reason is at the level of a six year old, perhaps he is an innocent, someone who doesn't comprehend what actual sin is, and who is therefore not responsible before God for any wrongdoing.
Kevin is trying to accept this defect, but it will take him a while to do so, as he must process bits of information one at a time. There are support groups, but In the meantime, we are praying and hoping for a miracle, but accepting whatever God Wills for us. We never knew what was wrong, only that something was. Only God knows why it took more than two decades to find out the answers, but we have those now, and thank God.
I would most humbly ask that you keep Kevin in your prayers, and that you too might ask God to bring Kevin back to the true Faith in His time whether he is miraculously healed or not. The Christmas Novena Prayer is an excellent way to ask for it is a petition prayer said 15 times a day from the feast of Saint Andrew to Christmas. Kevin's soul is our greatest concern, but at the same time we are naturally concerned for his temporal stability as well. Prayer has sustained him thus far in life. What the medications will do for him is yet to be discovered. It is a journey he must take, one he is reluctant to begin, yet Mike and I are there to gently guide him toward a life that will hopefully be mostly seizure-free. What the future holds we do not know, just that we trust in Jesus totally and offer all our own sufferings and sacrifices in reparation for our own sins and those of others.
Thank you again for your prayers. It was truly difficult to watch him suffer the seizures in the hospital, but most importantly, by your prayers, Kevin was able to recover from the seizures, and return to himself. You played a major part in Kevin's ability to see these tests through. Even though he doesn't understand it, on his behalf, and in his name, I thank you all.