Fun, Sun... & Back Inside

Rayleigh has had good weeks and bad weeks since our Make a Wish trip to Disney World. The good weeks are really good and the bad weeks still aren't as bad as this time two years ago - or even as bad as this time last year which was during her Charlotte's Web Hemp Oil Days. 

We switched Rayleigh from Charlotte's Web Hemp Oil to Palmetto Harmony CBD Oil a few weeks before the Disney World Trip in February. It has been better for Rayleigh at seizure control. In April and May she had several days where she only had 1-2 seizures a day (from 5-8 last year). And the "bad weeks" that I mentioned have nothing to do with seizures really, in April Rayleigh's chorea movements flared back up during a short stomach bug that she had. Then they appeared every week but only for a few days. We were keeping Rayleigh's neurologist updated but weren't concerned because this has happened before with her involuntary movements. 

But then she had a flare that lasted 10 days and that just wasn't her norm so we contacted the neurologist and she recommended started Artane/Trihexyphenidyl. This is a medicine commonly used to treat Parkinson's but it helpful for similar movement disorders as well. Within 1 week her chorea movements, which were quite aggressive at the time, subsided almost completely. Rayleigh was back to falling asleep on her own at night without the disruption of constant movements and she was able to enjoy her days again! And her favorite part - she was able to get back in her routine of school of therapies! When her movements are violent we pretty much have to put everything on hold because she needs constant one-on-one care to prevent her from hurting herself and to keep her calm. Part of Rayleigh's chorea includes anxiety and possible depression - heartbreaking.

After we got the chorea pretty well controlled Rayleigh developed Dystonia. Wikipedia defines: Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures
Our Bug's dystonia involves her head turned and locked to the right, her legs want to be bent, and she keeps her shoulders far back so that her arms hang back too. 
We went up on the Artane medicine (two times actually at this point, to 3 ml twice a day). This seems to be helping although she still has random days of strong Dystonia which is puzzling. Our girl is a puzzle. A beautiful, confusing puzzle that you just want to solve.

This blog is titled the way it is because one of the major side effects of Artane presenting for Rayleigh is heat intolerance and sun sensitivity. This is a first for us really, she's definitely been on medications that can cause these effects before but she's never experienced that side effect luckily - until now. It's been a huge bummer for us this summer. I'm having to find fun things to do indoors and that's just not where she loves to be in the summer, usually. Rayleigh loves to go in the backyard with bubbles, and books, and coloring books, and children's music, and Mommy. We used to spend at least an hour on a blanket in the backyard any given summer day. Now, her maximum time in the sun is 15 minutes and in the shade maybe 30 minutes depending on the humidity. She starts to get red in the face and little sweat beads, even heat exhaustion. I'm so nervous about heat stroke that at the first sign of her getting too warm I immediately bring her indoors to the air conditioned house. 

Hopefully this side effect wears off over time as her body gets used to the new medication. Until then, we will be at Target, the library, and the science museum in hopes that we can return to the zoo and walking parks soon! 

On the lower dose of Artane she was still able to be in the sun for a little bit before getting too hot. My sunshine angel.

Daddy added these lantern lights on each end of her bed - I think she likes them!

This was taken right after getting outside, a few minutes later was the first time that we had to go back inside because she was getting too hot. 

We have lots of fun indoor activities like Kinetic Sand, manicures while she's in her stander, switch activated Minnie Mouse toy, reading stories, coloring together, making crafts together, and having friends over for play dates!

One last thing I should note is that her seizures are drastically lower these past few weeks. She's even had some seizure free days!! Most days she only has one seizure, if there are other factors in play (constipation, too hot, full moon, sick) then she might have up to 4 but that has only happened twice since the change. The change being fewer seizures but having chorea/dystonia. We love her neurologist and are working together to lessen this dystonia without disrupting the seizure control she has! Her neurologist believes that the exchange of seizures and movement disorders are because her brain, all children's brains, is changing as she gets older. The pathways develop and new things can evolve for children with neurological disorders. Let's hope that we can get the dystonia calmed down and keep the chorea movements and seizures at bay - in a perfect world!