Why do certain things happen? Growing up, I would always ask my parents, "Why?" Their canned response, "Because I said so."Why was Sadie given these challenges in life? As a parent, it's hard not to blame yourself. Maybe it is god's way of punishing me for being mean to that girl in high school? Maybe it was that one night before I knew I was pregnant where I had too many martinis? Maybe it's because I didn't spend enough time volunteering, going to church, caring for those less fortunate...you see how it can drive you crazy??
For two analytical individuals like Adin and me, these mysteries that happen with Sadie are even more frustrating. After a few relatively calm weeks (only 3-5 seizures a day), the random twitches have again returned. Our initial guess (unsteady Dilantin levels) has proved to be untrue, so we're now exploring a secondary hypothesis - that her new medicine (Ospolot) is the culprit, as the twitches have seemed to occur a few days following an Ospolot increase. So...we're now taking her off the Ospolot and trying what will now be our eighth seizure medicine, Keppra.
Keppra has been used successfully on many girls with Aicardi Syndrome. Many docs like the drug due to it's limited side effects. When the twitching was occurring every 5 minutes this weekend, we ended up in the ER where Sadie received a loading dose of Keppra. Loading doses of meds are often given in a hospital setting to immediately reach a therapeutic level. While we thought we saw some initial improvement in the ER, the next morning the twitching was back...again every five minutes. It's just maddening to have her on five seizure medicines and the ketogenic diet and to still be experiencing such high seizure activity.
The emotional side of me wants to just take her off of everything and start from scratch. The logical side of me realizes the danger in this and will just keep plugging away hoping that these rough patches even out once we figure out the right medicine cocktail.
In other news, Sadie had her first visit with an otolaryngologist last week, or more commonly known as an ENT (ear, nose and throat) doctor. He is recommending a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) study on Sadie. It is similar to a swallow study in that the study evaluates the effectiveness of the swallow, but will also tell us more about how Sadie is handing secretions and if there are any other issues with her swallowing.
While we can't help ourselves to try to figure out what the causes are...we keep plugging along, hoping that this rough patch will come to an end soon.
P.S. I just HAD to include the photo above in her blog. Sadie and Baxter, sibling love.
it breaks my heart that sadie is going through this.....that you and adin are struggling with "why". i wish i could take some of the pain away.
ReplyDeletei don't have the answer to "why" but feel strongly that sadie is right where she needs to be with two amazing people who love her unconditionally. you're so special, cathy...such an incredible person, mother, wife, friend. adin is so gentle and kind...you guys are a perfect match to give a lovely home to sadie and she touches your souls in ways that only she can do.
please know how much i think of you guys and send love your way on a daily basis.
Cathy- I was just thinking- have they dine a recent EEG? We were un 3 weeks ago with Sloane, and her sz kept getting worse with strange twitching behaviour that was repetitive and occurred more when ketones are down. Turns out the twitching did not register as a sz- they think as Sloane tries to develop, new brain waves are comIng, and may just be Sloane. Might be something to look at. It's so difficult eh?
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