Not much of an update but Lennyns LTM (long term eeg) continues to look like shit. It’s not one area of the brain that is spiking, it’s her entire brain. Abnormalities are coming from everywhere.
Tomorrow we have a rep coming to train us at the hospital on portable oxygen, full size oxygen, and a hospital grade pulse ox. Huge shout out to the hospitalist, her care team, and the care manager here who got our equipment approved by insurance at lightning speed. Lennyn’s getting all the things and will have all the things before we even get discharged.
Starting a 4th med tonight and pushing so freaking hard to start a cbd supplement. I see your comments asking about it, and I’m not ignoring them it’s just a lot to explain. We have researched epilepsy to extremes. Sometimes I need to just unplug because things like status and sudden death are really scary. There’s so much red tape to go through (still in a medical cannabis state) and cbd can intensify the sleepiness one of the meds gives her and we don’t want to lose her personality and have a zombie and the two together will do that. On that note, we can’t just stop that med because it will make her seize. It’s a vicious cycle The goal is to get her stabilized and then introduce it and hopefully eliminate a drug if it works.
When you’re voting, please remember to vote and push for public officials that want to further explore and develop drug and treatment alternatives for all conditions, especially ones that impact so many children. Funding for said studies starts locally and hands are tied when the DEA still has marijuana listed as a scheduled 1 drug. The problem with CBD is there is not an abundance of peer reviewed, large scale data because of this. Honestly, it’s because the government won’t fund it. Without the data, a lot of physicians will drag their feet because they want to see benefits on a large scale and so far, anything published is small and the majority of the physicians we have consulted with have yet to see “miracles” on it. They prescribe the pharmaceuticals because it has the data medical marijuana lacks when it comes to epilepsy.
We’re not looking for a miracle. We’re looking for ANYTHING that will stop her from coding every bad seizure. We just want our baby to live. During our hydrocephalus journey we were always told that she’s going to be ok, and although brain surgery is scary, there’s a treatment option, albeit a shitty one. With drug resistant epilepsy, there isn’t. There are things that “can” work but there’s not promises. There’s no black and white. This is the first time when I bring up to her team, how scared we are that shes going to die from this, the response is, we’re going to try our best to get them under control.
Trying to remain positive and focus on how powerful positive thoughts are and clinging to hope when we’re feeling so defeated.
Defy the odds baby girl. You got this. #LennynStrong