To all the good people on this forum:
I’m signing off for a while. I think I still have my own healing to do. But before I go, I just want to say that I am so very proud of my son. He is my hero. Through all that I told about, he never once said, “Why me”? Most of what I told you I only learned after the fact.
He protected his loved ones from knowing about the increasing devastation to his ability to think or even find words at times. His confusion and the brain “fog”, the increasing number of seizures he had. The escalating amount of aeds and their horrible side effects. The loss of jobs and income. His constant battles to over-come depression, lethargy, his increasing inability to cope. His eventual shut down of all feelings. His inability to connect. He never once blamed the doctors, and there were so many he could have blamed because not one ever brought up the fact that he may have “allergies”. Not one primary care doctor, epileptologist, neurologist, or mental health therapist ever even suggested it might be allergies, even though I told so many that he was always “plugged up”.
I can finally say I’m grateful for that last cluster of seizures that sent him spiraling to the depths of hell and this family with him. Other wise I wonder how long he would have struggled alone, how long he would have beat himself up.
And he beat himself up plenty. If he only did this or did that, he could “fix” himself or cope better. If he cut out fats, exercised more, and ate soy. “Soy is good for you”. So, he switched to soy burgers, soy milk, soy ice-cream, soy snacks and God only knows how much he was getting in everything else. He tried to overcome everything by “pulling himself up by his own bootstraps”, until his body finally said enough. He researched “epilepsy” only to find the same answers over and over again until, hopeless, he finally gave up. No, HE never asked. “Why me”…
But I asked it plenty of times, “Why my son?” There is no epilepsy in our family, but unbeknownst to me there were plenty of allergies. I just didn’t know they were allergies. I did not understand any more than most, and maybe even less about all the symptoms of allergies, stress and depression. And I wonder why no one asked about other illnesses in the family? The only thing any doctor ever asked, “Is there any epilepsy in your family?” No, but there is so much information out there about how these things ARE RELATED.
I am sorry that I couldn’t or wouldn’t see what was really happening to my son. I’m sorry he felt he ever had to “protect” me. I’m sorry I ever made excuses for my son. He doesn’t need any excuses. Our medical community does.
I am sick to death of finding that mental illness is still too much of something to be hidden and ashamed of. I’m sick to death of men not being able to say, “I need help”. And it is worse for men; at least the Epilepsy Foundation got that one right.
I’m sick to death of hearing about useless, repeated tests. About the devastating effects of aed’s when they might not even be necessary. I don’t ever want to read about another neurologist who threatens to drop a patient for wanting to try alternative medicine.
If epileptogists nor neurologists don’t know about the “big four”, I want to know, WHY?
I want to know why there are not headlines blaring across the WebPages of every foundation that is supposed to be helping those with epilepsy?
And I’m sick of good, decent, hardworking, everyday people being lied to about the health risks of natural fats and foods so they can hawk their canola oil and soy, and other death and destruction filled, “ADDICTIVE SUDO FOODS”. I am sick to dearth of how these purveyors of death are trying to stop farm to consumer buying and continually lobbying the FDA to promote their garbage as “HEALTHY”.
Autism is now 1 in 150. How many years will it take to reach 1 in 2 at the rate we’re going? France urges no soy for children under three. That is a start. When every country starts urging women who want to become pregnant or who are pregnant to stop eating all of the big four and all processed foods, including so called, “health foods” then maybe we will start reversing the epidemics in autoimmune diseases of children. And when the powers that be, that are supposed to be protecting food supplies, finally put our health above corporate greed, I pray these toxic foods will be gone from the entire world and it’s children.
Autism is just one of so many epidemics, and I wonder how many of them will develop epilepsy? I wonder how many will develop Type 1 diabetes because they were fed soy formula. Asthma? And I wonder who will take care of them after mom and dad are gone?
If there are any men reading this who understands what my son has gone through, I urge you to start a community of men, where men feel free to address their problems without fear, without having to “tough it out, be a man, pull yourself up, etc., etc.” I don’t believe anything can work if the brain is not getting the nutrients it needs to be healthy, but it can help to know others are experiencing the same symptoms. I know not everyone has the extreme symptoms my son had, but I do believe many men and teenagers are not getting the support they need as males.
And finally once again I nominate John B Symes, D.V. M. better known as, Dogtor J, for the Noble Peace Prize. How fitting it would be for him to receive a prize started by Alfred Nobel, an industrialist with a conscience who also suffered from withdrawal, migraines, depression and epilepsy!
I will continue to answer private mail and will always be grateful that no matter how difficult it was, how much pain it brought back, how overly sensitive I was, or how many mistakes I made, that I finally had the courage to tell my son’s story. I appreciate the forum members who welcomed me and gave me understanding and compassion and their own wisdom. I wish you all the best. Sincerely, Uriah’s Mom
