Don't Blink

I was set to post about a new drug Damonito is trying. Was trying. Sometimes they know right away that something isn't going to work. The side effects are everything and while the jury is still out on whether it helped Damonito's seizures, Verapamil caused his feet to swell, indicating poor circulation so they had to stop giving him the drug. Verapamil is actually a blood pressure/angina/arrhythmia medicine but it's a calcium channel blocker and apparently it can help kids with Dravet Syndrome for a short period of time. Usually 9-12 months.

He will likely have another chance to try Verapamil. They were hoping it would give him some reprieve while waiting for the CBD trials. Nothing has happened with the trial yet but we're hoping our politicians put people's health ahead of their petty squabbling.
In the meantime, Damonito is up and moving around more and more each day and he's standing to build towers from blocks. He still requires constant supervision but every day feels a bit better.

Two Steps Forward, One Step Back

Damonito took an ambulance ride to the hospital on Friday night. When having a seizure, he's always given some time to come out of it on his own. When that doesn't work, he's given rescue medication. And when that doesn't work, a call goes out to 911. If luck is on his side, the paramedics will be able to get the seizure under control and Damonito will take a ride to Phoenix Children's Hospital. If not, then it's the closest hospital, and eventually he'll be moved to Phoenix Children's Hospital. The problem with going anywhere else is they don't know his history, Nicole has a binder but often the medical staff isn't prepared for someone with Dravet Syndrome. This is not to say they aren't great, they are, but his condition is so rare and his treatment is so aggressive that simply absorbing everything that he is going through is a challenge.

Damonito is going to be ok. His medication has been adjusted. Again. It's a never ending battle to find the all elusive "right balance." And even then, the balance changes and the search continues.

Game Changers

Even though Damonito takes 7 (yes, count them, seven) anti-seizure medications, he has a VNS chip, and the corpus callosum between his 2 brain hemispheres has been cut, he still has seizures. Granted, since his surgery, his seizures are definitely less severe. But long term use of 7 anti-seizure medications will certainly take its toll. Even short term usage has its problems. Phenobarbital can cause headaches, dizziness, and nausea sort of a "hangover" the day after. Day after day usage just means you feel like that all the time. The side effects of Topomax are similar so more headache, dizziness, and tiredness, something like a cold. And then there's Zarontin: headache, dizziness, drowsiness, and general lack of balance but can also cause confusion and hallucinations. How would we even know if he's confused or hallucinating?
We are trying hard to reduce medication however, it's tough because one seizure, just one seizure can put him into status and can change the game.