A ray of hope in my darkest valley

Where do I begin? I have hope, for the first time since November 21, 2021. Dave, Ronnie and I saw a doctor last night that blew my mind and gave me a renewed sense of expectation. I need to go into some back stories in order to provide full context.

Ever since Dave’s seizures started, I did what I have always done when it comes to my precious boy. I sink into a deep depression and then, my mind starts working. I treat issues that come up like puzzle pieces to solve, knowing that everything that happens to him is for a reason and if I can figure out the why and how, then maybe we can undo some of the damage. When the seizures first started a few thoughts ran through my mind. We started him on a very strict diet when he was first diagnosed with autism but then we tightened the reigns even more about 10 years ago, when I had heard seizures could be prominent in our kids, around puberty, and that diet (the gut) can play a huge role. So, when the seizures started my first thought was, ‘where did I loosen the reigns on the diet?’ Almonds and cashews can be a huge trigger and coincidentally I had just started Dave on a paleo pancake mix right before last November. He had only had them a handful of times but I promptly stopped that mix and revisited everything he was eating. I even had my Mom help me by calling the manufacturers to find out exactly what was in their ingredients, listed solely as, ‘organic spices’ on the packaging. We found a couple of culprits (that contained nightshades, a no-no on Dave’s ‘Auto Immune Protocol’ diet). But the seizures kept coming. So, either that was too big of a trigger or it wasn’t the culprit.

Another thing that circled in my mind was Covid. I have continually said that, “Covid brings up old stuff.” Ever since Ronnie and I had Covid last summer, we have had weird, old injuries pop up. Ronnie has had old scars start to hurt. My autoimmune diseases went into overdrive and my neck and back issues came back full force. I believe that the Covid virus attacks any scar tissue or weak areas in our bodies and wreaks havoc with them. I’ve talked to countless people that have told me the same stories, that things came back after they had Covid. I wondered if there was anything that came back in Dave that could account for what is now happening.

As most of you know, Dave had an awful fall with one of his seizures that sent him to the ER earlier this year. I also had an issue with another anaphylaxis that sent me to the ER. Between those two visits, our medical bill went through the roof. But, on the positive side, we met our deductible for the YEAR! So, I’ve been setting out to do anything and everything I’ve always needed to do, medically speaking, to at least take advantage and ‘make up’ for this fact. There is a prescription eye drop that I truly need due to one of my autoimmune diseases but ‘big pharma’ wanted to charge me $600 a month for it!!!! (It used to be $300 but now is $600)!!! Needless to say, I don’t take that needed prescription but THIS year I do! Picking it up that first time and hearing them say ‘no balance due’ was amazing. I also took Dave in for ingrown toenail surgery which he really needed. And I figured I might as well finally go see an allergist for me, which was YEARS overdue.

A couple weeks ago I had my appointment. I sat down with the doctor and he read through all of my file. I told him the same thing I always tell new doctors, “you are gonna have fun with me as your patient, my body does weird things that will make you scratch your head.” I proceeded to tell him that I think I have seasonal allergies but not to be so alarmed by my anaphylaxis that has happened already twice this year, one for an unknown reason. I told him over my life, my body sometimes does weird stuff and ‘reacts.’ January 3^rd of this year I had to rush to the ER when my throat started to close for no reason, other than the extreme emotional trauma I had been going through with Dave’s new onset of seizures. The doctor just sat and listened. I just wanted to warn him that my body might react weird in certain instances and to not be alarmed. After all, my first onset of hives began when I was 6 months old (after taking amoxicillin). Hives and I are old pals. The doctor finally looked at me and said, “I think you have idiopathic mast cell activation syndrome. Actually, I am quite sure of it.” I looked and him and said, “excuse me?” He proceeded to describe this syndrome and I was floored. I said, “omg you are describing me! That is my life! There is an actual ‘thing’ for this???” When I left his office I read up on MCAS and couldn’t believe my eyes. This explained everything I have ever gone through in my life. The sun ‘burning’ me through jeans and giving me hives and welts. The swelling of my face like a balloon when my ex and I split. The unknown and extreme nausea I had for 6 months (and, no, I wasn’t pregnant) that had no seeming cause or cure. The onset of all of my autoimmune diseases shortly after my trauma with Dave’s autism. This explained it ALL, why I’ve always joked about being the 1% and my body being weird. It is a THING! And there is a name for it! Wow. The idiopathic part of MCAS is that there is no known cause and for me it’s always related to extreme emotional stress in my life. His diagnosis didn’t really change anything except to give me validation of the things that always happen to me and know I’m not losing my mind. This little story may seem to be a huge segway but it’s important… I’m getting there.

So, when Dave’s seizures started, we of course went to a neurologist. Her answer, of course, was drugs. I don’t know what it is about western medicine but they always just want to mask symptoms with drugs instead of getting to the root cause. We then saw Dave’s autism doc (who also specializes in seizures, about 30% of his current caseload includes kids who have autism AND epilepsy). We began down the road of trying to figure out how to stop, or at least minimize these seizures. And to date, nothing we have tried, including drugs, has worked. My beloved sister and warrior mom, Laura, kept urging me to go and see Dr. G. She told me he could really help us.  Dr. G was the doc I had seen that put Dave on that strict diet back in the day. He is a functional neurologist and a really brilliant guy. I promised her I would go see him but wasn’t quite sure what that would help. I thought to myself, “I guess taking another stab at healing his gut couldn’t hurt,” but I wasn’t in a huge rush to go see him. Laura kept on me. And I’m so glad she did.

Last night we were sitting in Dr. G’s office. He was looking through all of Dave’s recent medical tests; CBC, EEG, EKG, Cat Scan, MRI and listening to all that had transpired in Dave’s life since we last saw him. Doc then looked up and said, “Dave has mast cell activation syndrome.” I said, “what? Excuse me? I have mast cell activation syndrome!” He replied, “all the more reason.” I was shocked. He continued, “the spike protein in Covid is bad news. It wreaks havoc in the body. Whether you get it from Covid itself or from the vaccine makes no difference. It goes to work. The spike protein has triggered MCAS in Dave. And while MCAS in you Wendi, activated physically on your skin (hives), and digestive (my nausea and other GI issues I’ve had), it is manifesting in Dave neurologically.” I said, “oh my god is this what caused his seizures to start??!” Doc said, “yep.” And I said, “oh my god, can we reverse this?” And he said, “Yes. What we have uncovered in my practice has been huge. I am 99.9% sure this is what Dave has and we can fix it. It’s going to take some trial and error on dosing and supplements but let’s do the testing to be certain and then start out with our plan to reverse it.”

I cannot even describe the feelings I had in that room. For one, this all made such perfect sense. Secondly, Covid was in the back of my mind as a potential issue from the start. Lastly, I was just diagnosed with the exact same syndrome (which I’ve actually had all my life) and sadly, my boy has inherited many of my ‘bad’ genes. The dark valley I have been living in for the past 4 months finally had a ray of hope in the distance. And maybe all of this was too much and damaged Dave beyond repair. I sure hope that isn’t the case. I am praying that this is our answer and our miracle. Thank you, Jesus for leading us where we are now. Thank you, Laura for not giving up prodding me. And thank you, Dr. G for your brilliant mind. I am hopeful for the first time in a long time….