Dear GM1 Parents,
I want to share something with you that your doctors might not tell you. Miglustat tastes like vomit. Really. For many children, even ones who do not have dysarthria or difficulty controlling their tongues, it’s impossible to swallow a pill. Iris is not able to swallow pills and for now, the only way to deliver the medication is by mouth.
We originally tried to teach Iris to swallow pills. We went out and bought sugar-free tic tacs and we bought several special cups that are supposed to help people swallow pills. The tic tacs just rolled off her tongue and out of her mouth.
Standard parental advice would be to mix the medication into apple sauce or peanut butter or a food item so you can use to mask the flavor. Standard parental advice does not apply to a truly strict ketogenic regimen. Applesauce, nope. Peanut butter, nope. Bacon, definitely. Actually, Iris does not like bacon…The taste is bad enough that you need a lot of the food item to mask its horrible flavor.
We were faced with a very difficult question: How do you get your child to take a medication two or three times a day orally when it tastes just awful? In our case, the simple answer is that you don’t. We absolutely had to come up with a magic way to get Iris to drink the medication. So, here’s our formula:
- Sugar-free lemonade.
- 1 teaspoon of Cal-Mag/CALM
- A few squirts of liquid stevia
The sugar-free lemonade is the base canvas to mask the taste. Try the ones with stevia first. Our doctors told us to avoid aspartame if we could, but honestly, the aspartame ones taste better. Given the choice between not being able to administer the medication at all or using aspartame, we had to switch back after trying stevia lemonade.
The Cal-Mag is a calcium magnesium supplement. We use it to help with calcium supplementation due to the ketogenic diet for two reasons. Iris can not have milk and other sources of calcium as much as one might normally. Iris does love zero carb cheese though! Also, the magnesium helps with digestion/regularity. Lastly, the CALM has a raspberry stevia flavoring.
The liquid stevia is used to put the sweet taste over the top.
All kids are different! I can not promise this will work for you, but it is how we manage. A colorful and fun straw also helps. Oh, and a cute cup. Good luck!
1 thought on “Miglustat by Mouth and not in a Capsule”
Thank ;you for sharing this important experience. I’m sure other parents will find it helpful. In
the meantime, I will continue to pray for you two and Iris. You and Doug are first-class parents!!