When we made the decision to give Ryne medical cannabis, it seemed surreal. I would have never guessed that my journey with my son would include not only an advocacy for medical cannabis, but wanting to give it to my four year old. Through this blog, I want to share a little bit about how we have reached the decision and to bring a little bit more awareness of where we’ve been and where we are going from here.
One thing that I wanted to share is what I believe is the villain in Ryne’s life. Epilepsy is not fun. It makes things difficult for Ryne as well as for Jamie and me. But Epilepsy is not the enemy to me. To me, the enemy is his seizure meds. The medicine that is supposed to help him is what is holding him back. We’ve seen it with our own eyes the difference it makes when he is nearly off his meds, and we would like to let that kid out to play, but obviously we can’t just let him have seizures unabated.
The seizure meds, like all medicine has side effects. The idea, one would presume with FDA-approved medicine is that the benefit of the medicine would far out-weigh any drawbacks that side-effects would present. In Ryne’s case, while we don’t know what his seizure level would be without meds, it certainly is not being controlled by them. Below are the LISTED possible side effects of the three seizure medicines he is on. Out to the side is noted how many of his meds this is a side effect for. Bold side effects are ones we have observed in him:
Drowsiness x3
Sedation x2
Accidental Injury
Hostility x2
Nervousness
Loss of strength (weakness)
Dizziness
Loss of Appetite
Double Vision
Slow thinking
Impairment of Motor Skills
Drooling
Constipation
Insomnia
Upper respiratory tract infection
Irritability
Problems with coordination
Depression x3
Suicidal Thoughts x3
The only side effects on this list that we have not observed in Ryne are the ones that we cannot link to his meds (upper respiratory) or ones that he lacks the ability to share with us if he’s experienced (double vision, depression, suicidal thoughts). If Ryne was completely seizure-free, I’m still not sure if the benefits would out-weigh the side-effects. But It’s certainly not worth it when his seizures are not fully controlled.
He constantly falls. He has fits of rage where he will suddenly hit, head-butt, scratch, bite, or kick me and Jamie (or whomever is with him at the time. He is very sedated and cannot fully communicate verbally. He will turn five in July, but currently only speaks at an 18 month old level. We cannot let him continue on this path. We have to make a change for him.
This is why we are moving to Colorado. Maybe medical cannabis is not the answer, but it sure seems to be doing a lot of great things for other children. We have to at least try. Our pastor, Aarron Schwartz at Restoration Church once said that God, our Father, loves us just the way we are. But he also loves us too much to let us stay that way. We feel the same way about Ryne. We love him just the way he is, but we love him too much to let him stay that way.
The Rynosphere 
Side effects are terrible. I’m a grown person, and sometimes I can’t tell what’s happening to me from AEDs (anti-epileptic drugs). My doctor once put me on a combination of meds, and I became so angry! All the time, for no reason. It ruined a lot of things for me. When I reported this to my doctor, he wasn’t even going to change my medication (until I happen to remember that I couldn’t sleep either). It took at least two months for the fog to clear out of my head after I changed meds AGAIN. When the fog did clear, it was too late to fix a lot of things. I could just look back at myself and say, “What in the world happened?”
My heart is so broken for you, but my heart is so hopeful in the midst of it all….for Ryne, you and Jamie! God has a plan for this situation and for all of you and if I know anything at all….it is “that God will have you and will increase for you!”…it is all because you give Him glory and Praise Him throughout the storms in your life. Most people do not know the magnitude of what you are going through and experience daily with this precious Son that you love with all your heart. I cannot know because I have never been through this. Jeff and I…your Dad and Mom…we never had to deal with this with our Sons, but I know one thing and that is that if we did, I know we would be doing exactly as you are…searching for more help. God will make your way “straight” and He will carry you all the way! There are so much better days ahead for Ryne and for you all as a family! I pray it and I know it with all my heart. Our God is “able” and He is so good and will definitely answer our prayers, just as He always has before! I can only look ahead and look forward to the new updated reports of our little Ryne and his healing and growth in physical body as well as emotional function. All of my Love and Prayers are with you daily, Brandon…to you, Ryne, Jamie wherever God takes you in this journey…Please “Always KNOW that I am there with you!”….Always….