We're bracing for impact. What that impact is, we're not sure. After a week of various opinions, we've made a decision.
Let me start at the beginning...
Sadie saw a new neurologist last week to get a second opinion. In the meantime, her current neurologist presented Sadie's case to the team of doctors at Children's Memorial. Apparentely, the doctors do this periodically when they have difficult cases. The result was two differing opinions.
Doctor A recommended weaning a few medicines to try to determine what is and isn't working. "A" also suggested she try a few new medications. Doctor B recommended we start aggressively treating her with prenisolone, an oral steriod. Steriod treatment has always made us a little nervous, given the many side effects, including a weakened immune system. We've opted out of the most commonly used steriod for infantile spasms, ACTH, due to the high mortality rate (1 out of every 12 children), and the fact that many Aicardi parents don't think it works very well for girls with the Syndrome.
After giving ourseleves a few days and seeking out numerous opinions, we decided to forgo the steriod treatment for the time being. For better or worse, we're trying another seizure medication, Depakote.
Sadie was also at the hospital most of the day last Thursday for her Electroretinagram (ERG). We received good news and bad news. The good news is that the ERG showed Sadie to have decent vision in her left eye. The bad news was as we suspected, she most likely has no vision in her right eye....sigh. Although we had mentally prepared for this, it doesn't make the news any easier.
We've started working with two great non-profit organizations. The first is an organization called Hope's Friends. They send a home nurse to see Sadie as needed, a service that will be even more important as cold weather approaches. The nurse came out this week to check out Sadie's bowel movement issues. The ketogenic diet really stops her up :( They'll also be starting Music Therapy with Sadie this week. We'll see if we can get any Katy Perry or Beyonce in the mix, you know how Sadie loves them :) Additionally, an aromatherapist is developing aromas for Sadie to see if it will help with her bowel movements and seizure control. It's worth a try, right?
Sadie also visited the local Easter Seals chapter for a feeding evaluation. She will go back in a few weeks for a seating/positioning clinic to help determine what, if any, special equipment is needed as she gets older. Specifically, we're looking at special feeding chairs, strollers, and car seats. Both organizations have been wonderfully helpful for Sadie.
So, we brace for impact as Sadie starts what is now her third seizure medicine this week. We hope and pray that the third time's a charm.
From a long veteran of the BM wars on keto, I have the following advice: baby food prunes, milk of magnesia, and carnitine. All will help a lot. Prunes are very sugary, so you won't be able to use much on a high ratio, but even a wee little bit can really help things move. Milk of mag is very safe, though I don't know the baby dose. This has been a proven winner for Josie.
ReplyDeleteI'm sure that she is on carnitine, right? If not, ask Robin. It's safe, and at higher doses, it also encourages BM's as well as optimal metabolism of fat (this can also sometimes help kickstart the diet if you have plateaued, esp on a higher ratio....we can talk more about the carnitine thing in person if you want).
Here's hoping for Depakote to work!!!!
Hey Cathy - have not talked to you in a few weeks but was reading up on the blog. Keep that little one strong and heathly! I think of her often. Hope you are gearing up for some fun family time over the holidays. Lets chat soon. With love and prayers always, Carolyn Parnell
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