Riley has officially been on his medication, Sabril, along with two other supplements (vitamin B6 & amino acid, Taurine) since Thursday. I'm doing my best to keep a daily journal of how his days go, when he had his spasms, etc; that way after he has been on his meds for awhile we can look back and see how/if he's changed in any patterns. Unfortunately, there is no medicine that is guaranteed to cure his IS, but for him and his "not fully diagnosed" muscle problems, Sabril is his best option with the least amount of side affects that could be potentially really harmful for him. There is the chance that it may help decrease and stop them, then again there is a chance it may not have any affect. There will definitely be many check-ins with the neurologist and several more EEGs, to determine if his treatment is working.
After just a few days, the biggest change we can easily see is how tired he is. It's like the medicine has made him give in to how lethargic he's been, and he's been taking really long naps. Then again one of the smaller side affects of the meds are irritability (thankful nothing drastic seen there), and sleepiness! Guess we will take it, just hard not knowing how that little brain of his is doing in there. Spasms come and go just like they have been, mostly when he's tired. Sometimes they're a full body jerk, multiple little eye rolls, or a limb twitch. He had had small chunks of time during the day where he's super active kicking around, spinning on his back, swinging his arms, etc; it's those times where you really have to pay attention to see if he has any spasms within all that voluntary movement. But boy does all that movement bring smiles to our faces, not to mention some kind of relief that he's still capable of being active like that. Today he had two big naps, but some time in the afternoon with smiles and laughter, and a whole evening full of kicking & spinning, happy as a clam...
On Thursday we were back at Children's for more tests, thankfully just blood and urine tests; nothing invasive. As always everyone there was great with him and us while we waited on our dr's office to confirm a specific test they wanted. Of course as soon as it was relayed to our dr and that we were at the lab waiting, he called back immediately and Riley's name was called! He of course wasn't happy to be poked once again, and give two huge vials of blood. Whatever the many specific tests they're doing on all that, should hopefully help determine more specifically the problems in his brain and central nervous system that the EEG was trying to tell us (his IS being a symptom). Once again more waiting.
He was a happy and very sleepy boy for his first Easter with family down in Vancouver. Even though he slept through most of the visit, everyone, especially Great Grandma was thrilled to see and cuddle him.
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