Socks the Puppet

Damonito loves Sesame Street. He loves Cookie Monster and the Count (he even mimics the Count, uh..uh..uh...) but he especially loves Elmo. He loves to put socks on his hands and play puppet. Seizures in kids with Dravet can happen because of over excitement, over exertion and stress. Socks the Puppet is a nice, calm activity Damonito can experience without fear of having a seizure.

Plus, he loves it. Anything to get a smile.

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.

We're Getting There

I got to spend some time with Damonito on Friday. It was a good day. He was the best I've seen him since his surgery. Definitely more like himself. He still has some obstacles to overcome but it's hard not to be excited when he's in a good mood.

We watched The Adventures of Elmo in Grouchland. I've seen it dozens of times but Damonito loves Elmo so we watched it again. We've been bringing out his birthday toys a little at a time and he was proud to spin wheels and open doors all on his own. Clapping every time he finished. He even used his left hand to hold his strawberry milk (it's actually a nutritional supplement).

Nicole brought him a cup of water that he drank with a straw. I had never seen him drink water before, he'd always gotten it through his G-tube but Nicole said he'd been checked out to actually drink water so last week he got to have some. Damonito is 12 years old and never drank water. Nicole said he really likes it.

Stalled CBD trials

This fall, Damonito was to be part of a medical trial to determine the effects of CBD (or Cannabidiol, a compound found in marijuana) on epilepsy. CBD doesn't get you high, it's not that part of the plant. With all the dispensaries around the county experimenting with CBD oil and hospitals in other states doing trials, there is reason to believe it helps with seizures. It's been well documented.

 The trial Damonito was to be part of has been stalled while our Arizona Congress figures out if CBD should be changed from a Schedule 1 to a Schedule 2 drug. A Schedule 1 drug is considered to have no medical value. Dispensaries around the country produce CBD oil but the thing about having the pharmaceutical companies involved is that you know what you are getting. You know that the pill you take today is exactly the same as the pill you take tomorrow, as the pill you took a year ago. Damonito needs that assurance. We simply can't leave things to chance.

Damonito currently takes 7 anti-seizure medications. He has a VNS chip (kind of a pacemaker for the brain), he has had a full corpus callosomotomy and he still has seizures everyday. CBD could help him. There is hope. Write your Arizona Congressperson and ask that they work to change CBD from a Schedule 1 drug to a Schedule 2 drug so research on the potential medical benefits can be ascertained. It could make a difference in this young man's life.

The Family Visits

Over the weekend Damonito's Aunt Harmonie and family came to visit. It's great to see his face light up with recognition. It's something we're hopeful about but not sure how much he has retained. He seems to remember more than we anticipated.

Damonito had a birthday but postponing the party until he was feeling better seemed like the best option for him right now. He's still weak and struggling from the surgery plus he's still having seizures. Not as bad as before but seizures. Right now anything can be a trigger.

The Sykes brought some presents in plain brown paper wrapping. Counting games, he loves counting. He absolutely remembered to tear open the paper to reveal his gift. He even knew he needed help to get it started.  

And then there were the thank you kisses.

A good time was had by all.