Advocating

Going a bit out of order here since I haven't even introduced Daring yet, but this just happened so I wanted to post it while it was fresh on my mind...

Time and time again the rescue meds we were given from the start did not seem to work for Daring. Although we were given the same meds to use for Darling first, her seizures have never been more than 5 minutes for us to have to administer it. So using the meds with Daring was our first experience with it.

Daring's seizures would stop 20+ minutes and I felt "Woo, it's working!" Until I read in some support groups that rescue medications should be working within minutes... if not seconds of giving it. What?!

So we spoke to our doctor who suggested: Don't wait the usual 5 minutes - give it right away. 

Ok. We do that the next time (of course, there's a next time, unfortunately). Grab it and give it right away... and it still took forever for his seizure to stop. 

Now what? Doctor: "Give both doses, if need be. Seizures with this condition can be hard to control and he might just need a higher dose."

So we give the meds right away and when he's still seizing after 5 minutes, we give it again. No quick relief though and I've just double-dosed my son with some serious drugs.

Mind you there would be a couple of seizures happening in between these changes/ improvements to try to get the rescue meds to work properly for us and also an occasional dose increase for Daring's weight gains. So we were making every effort to get these rescue meds to work.

On top of not working, as we started giving higher doses or doubling up the doses, he started to have more side effects like trouble maintaining his oxygen afterward and he'd often sound really congested/flemmy when recovering - which would then lead to all sorts of respiratory testing, which was annoying and just another invasive thing being done on my recovering baby.

After we started giving it right away, I started speaking up that I felt like they were not working at all for Daring. 

These rescue meds are supposed to stop the seizure. They're also supposed to give you some sort of comfort/ relief that you're doing something while you're waiting for professionals to show up. This specific medication was not doing either of those things... and, as I mentioned, was also having some other side effects I wasn't comfortable with. It got to the point that every time we were in the hospital, I'd say "This rescue medication is not working. What can we do?" 

I was told a slew of things like "His maintenance meds might need to be switched up. How about we try adding this" (Ok, on-call doctor I don't know. I'll take that script to appease you and call my neurologist tomorrow to see what they think.)

Or "He's still too young for anything else" (Um, this medication's fold-out information says it's for 6 months and older ... and we started Daring on it at 4 months. So we bent the rule about age a bit already) 

Or "This medication should be working to stop his seizures." (Yes, but it's not. So, NEXT!)

Finally, a little more than a year and a half into our experiences with Daring and lots of complaints on my part, we were given a new rescue medication to try. Honestly, I had gotten to the point where when we were in the hospital, I'd say, "Just make the note I don't like the rescue med. I just want a notation I don't think it's working" I even discussed with our doctor how I thought I was doing Daring a dis-service giving him this medication that was giving him side effects and also not stopping his seizures. 

In discussing trying the new rescue meds, our doctor said, "This second medication might not work."

To which I said, "Well the first one definitely doesn't, so I'll take a new one with a probability over the old one that time and time again doesn't ... and has proven to have shit side effects." 

I'm saying all of this because - ADVOCATE! 

Speak up! Your doctor is such an asset, but you are the one there day to day with your child/ loved one. Your voice and opinion are important too... and any decisions about your child should be the result of a discussion that ends with both you and your doctor comfortable moving forward with. Like our (much loved & appreciated) doctor said, the first rescue medication should have worked... and we tried different methods to make it work, but in my continuing to speak up, we all realized we were outside the realm of "should have" and needed to move on to try another option for Daring.

Now everyone please cross your fingers and toes that when we actually have to give these new rescue meds that they work like a charm in less than a handful of minutes!