Thursday, March 20, 2014

Ryan B.


My name is Diana Briggs. I’m blessed to be the mother of Ryan who is now 13 years old. Ryan suffered an Anoxic event at birth that resulted in multiple disabilities. Ryan has been diagnosed with Hypoxic Ischemic Encepholopothy, C.P., M.R., and Epilepsy. Ryan has seizures everyday. On a good day he has approximately 100 tonic clonic, simple partial, and complex partial seizures. On a bad day we’ve charted over 400.

RyanBWe have tried over 10 conventional medications to control his seizures. In the beginning some dropped his numbers but soon he was back to where we started. Unfortunately they have all come with awful side-effects. One medication harmed his kidney’s, another became toxic and caused liver failure. We have implanted Ryan with a Vagus Nerve Stimulator with minimal results. He is also on the Keto-Genic diet, this also has come with risk. Ryan now has to have yearly EKG’s & Echo’s of his Heart to check for signs of distress due to the diet. He also has bone density scans to check for signs of bone loss due to the diet as well.

With everything we have tried we have never gotten the control we have prayed for. We have unfortunately risked Ryan’s health & well being by giving some of these legal conventional medications. Many have asked how do you not just give up. I WILL NOT GIVE UP!! I refuse to accept that my son has to live like this. If you ever had to hold your child while his little body contorted and shook uncontrollably while you prayed to God that he would just keep your child breathing, you wouldn’t ask why I’m looking for something, anything to stop these seizures! Please give my son the chance at a better quality of life. Give us the opportunity to try Medicinal Marijuana.

To Whom it May Concern,

My name is Alexis Briggs and I am seventeen years old. I’m sure that this will be one of hundreds of letters you receive on the topic of legalizing medicinal marijuana but regardless I felt the need to share my story. I’m the oldest of three children and have a mentally disabled brother. Due to complications at birth he has multiple disabilities but one of the greatest battles he struggles with on a daily basis is his high number of seizure activity. I could list all the names of medication, the treatment, the unconventional measures my family has taken, but that is not something one can easily relate to.

Instead, I’d like to tell you my story. When I was three I was blessed with a baby brother and the responsibility of becoming an older sibling. I didn’t realize that my responsibilities were greater than most three year olds', I was just happy to finally have a sibling. There have been many ups along with the downs during his short thirteen years and I have been part of them all, cheering him on. Most children start off counting in kindergarten or preschool but I remember only counting my brother’s seizures. My cousin and I would sit and count and see how high we could go but often times we stopped in the hundreds. Eventually I grew to understand what seizures were and why it caused my mother and father so much pain to look at, but as any parent, they hid their pain well. Seizures slowly became everyday life and perhaps easier to deal with as I got older, until of course, he began having more. In fact, I remember at one point, when they were really bad, medication wasn’t working and the nurses had to list them as uncountable on their write up sheets within the first hour of their shifts. I found my mother in her room, sobbing, and I hugged her asking what was wrong. It’s impossible to get the look of her face out of my mind when she said “I just want them to stop. Just for an hour or so, just so he can sleep, I want them to stop.” No teenager wants to see that; their hero defeated in that way, but at that moment I felt like all of my heroes were, all because of seizures. There was a hopelessness we all shared and at random intervals we all feel again when that new med we prayed would work turned out to be not as much of a saving grace as expected.

My family and I collectively look for a new hope day in and day out because we cannot give up. If my friends' siblings can run around and play and sing the least I can do is make sure my brother can go a day without seizures. A few months back I was sitting at home, searching the web for a new medication. At seventeen years old. I know this life style is hard to relate to and I don’t expect you to get it. I expect you to take into consideration the fact that you will never get it. Take into consideration that this is a life that only we know best. That’s okay, we’re not asking you to get it. We’re just asking you to say yes. Our Angels need this, now more than ever. Please do not deny us that right to give our siblings, children, and loved ones the ability to be seizure free.  Please support SB 1182.

Update March, 2014

The new year started with Ryan's seizures on the increase. As most parents know with children with epilepsy. We look for illness first, I'm not saying we hope for illness in our child but that we know that could be the answer to why our child's seizures doubled in numbers. The one thing we don't want is to learn that the new medication is already not working and it's now time to begin raising the dose. We started Vimpat last May to help with Ryan's cluster seizures. In the first weeks of January, 2014, he was now having at least one hour long cluster per day that was uncountable and another 50 in an 8 hour period. So well over 100 tonic clonic, simple partial, myoclonic, and complex partial seizures per day plus uncountable clusters. He wasn't sleeping at night because he was waking up clustering. So on January 31, 2014 we agreed to raise the Vimpat at bedtime to 200mg. Well the seizures stopped for five days!! But that is because Ryan slept for FIVE days! There was no therapy, no watching TV. No interaction at all because he was completely SNOWED!! He then woke up. We of course did not raise the morning dose as ordered by his doctor. And the seizures are back as bad as before we raised the Vimpat. In fact on Feb. 25, 2014 he had 124 seizures in 8 hours.

1 comment:

  1. I'm spreading this around. We will get as much support as we can!