Grace's next appointment is May 6. In the meantime, she has started on the new medication, Koselugo, and has been doing really well. This is the first time she has had to swallow pills, so she spent quite a bit of time practicing with Tic Tacs while waiting for the medicine to arrive. (Swallow one, chew one.) The candies are slightly smaller than the real deal, but they at least taught the idea and technique of swallowing a pill without chewing it. They tried to get the pharmacist to make up practice pills of exactly the right size but without the drug, but he thought that was a crazy idea and refused their request. Considering that the suggestion was made by a friend of ours who is a speech therapist, and speech therapists know all about teaching people to swallow, I'm inclined to think that it was the pharmacist who was the crazy one here. No matter now—Grace has been swallowing the real pills for over a week, and only occasionally needs to try more than once to get it down.
She was able to begin the treatment because although on retest one kidney number was still a little concerning, the other was fine, and her kidney ultrasound was normal. So they're still pushing fluids, but there was no reason not to go ahead with the new drug.
So far Grace has experienced no side effects of the medication. it's very early yet, of course, but we'll take all the good news we can get for as long as we can get it!
The main pharmacist didn't think it was crazy, but just wasn't able to prescribe anything, and so thought we might be able to buy something on our own. I asked our local pharmacist if they sold it, and they kind of ignored the question, just saying tic-tacs and mini-m&ms were the way to go.
Glad for the good news and elated that Grace is able to swallow the pills! That is huge! Awesome that an attempt was made to get the pharmacist to made some “dummy” practice pills. I would that the pharmacist at the Children’s Hospital would be part of the treatment team and would be happy to do so. A few sprinkles placed in a an empty gel cap would be a wonderful start. As always, Sweet Grace exceeds expectations!
