A little medication cocktail, anyone?

Thoughts During Autism Acceptance Month.  

Today I'm thinking about how so many people on the autism spectrum are medicated for various reasons.  We debated long and hard about medicating Lulu...we knew it wasn't going to "cure" her autism, but maybe it could help the symptoms?  It was a very difficult decision, but in the end, the reason we decided to do so was because we thought that she was "getting in the way of herself."  What I mean by that is I thought her obsessions, behaviors and perseverations were blocking the progress that we thought she could be making if given the chance.  

We tried a couple of different medications before we settled on Risperdal.  This is a medication that is commonly given to people with autism to help reduce behavioral symptoms.  It did actually help Lulu.  She began making a lot of progress.  She learned how to swim.  She began following directions.  She was able to write her name and numbers.  Her aggression toned down a bit.  It was pretty great!  

However, there was a BIG downside to that med.  Lulu put on a tremendous amount of weight, and though we've tried to limit what she eats, her metabolism has changed, and she keeps packing it on.  She was put on another medication that is supposed to help as an appetite suppressant, but it didn't do much, other than make her cry... and she's not a cryer.  So we struggled with the pros and cons of that medication, and the pros outweighed the cons (no pun intended!).  

After awhile, the Risperdal stopped working, and she went without anything for a small stretch. But puberty hit, and we were off and running again. Along with the aggression, her sleep cycles were way out of whack. And when she is awake, you know what that means...I am also very much awake. There were weeks when I got 12-15 hours of sleep in a 7-day stretch. 

So new medications were explored.  Her psychiatrist tried her on a few other meds before landing on guanficine (Intuniv). He also gave her some meds to help with sleeping: Trazodone and Geodon, as well as melatonin. And all of that worked pretty well, until...

Next up! Obsessive-Compulsive Disorder! Lulu has recently had some really bad bouts with OCD. She gets something in her head and she asks for it incessantly. If you will, try to imagine what is happening in my house right now since this week's "freak-of-nature" snowstorm... our power is back as of yesterday, but the internet is not. 🥴  She is not dealing with that very well.  (Luckily for her dad, he can use his Hotspot to give her internet access, but I do not have that capability. I'm just gonna hope that Spectrum does right by me tomorrow 🤣). Her psychiatrist suggested using CBD gummies, and they do work to tamp down the incessant requests for unavailable items. And sometimes when it's really bad, and she's literally being aggressive with us, or is flipping furniture and tossing the whole house (sometimes breaking things like doors) looking for something, she will have an Ativan. I can't imagine being so out of sorts that I would need to be medicated like that. What must she feel like in her skin? 

Another extremely frustrating OCD manifestation is how she gets "stuck" and won't move.  Getting her on or off the bus daily is always an adventure. One day when her dad brought her home, she would NOT get out of the car for more than 90 minutes.  The door was open, it was really cold, and still... nothing.  90 minutes in the cold... that's a big NOPE from me!

So we talked about it with her psychiatrist, and we got her moved from guanficine to Prozac, because apparently SSRIs are a treatment for OCD. This has helped a little bit, but it's still a long road to travel. And it's not really helping the aggression. 

I'm hoping that they'll come out with something to combat the severe side effects of medications.  And even more so, I'm hoping that one day she'll be able to control her behaviors without the use of medication.  But until then, we'll continue to support her as she needs it.