Grace's journey

Miralax, the Monkey on our Backs

I forgot to write about the Miralax on the post that I talked to the doctor from the Spina Bifida clinic on. Anywho, so Grace has neurogenic bowel. For some reason, the nerves for her bowel aren't working properly, so the void takes longer to move through her large intestine, which is where the water is pulled out of the void. Well, with the neurogenic bowel, since it takes longer for the bowel to push the void through the large intestine, too much water is pulled out, which causes the void to become stuck. Then she gets "bound up" which is where multiple voids are impacted in the large intestine. This is where the Miralax comes in. A daily dose of Miralax allows water to always remain in the large intestine for the void to go through, as that is the Miralax's job (to hold water) and so when she's got that running through her system, the void can come out easier because the large intestine doesn't pull out all the water. Anyways...enough of that lesson.

So we've stopped her on the Miralax because the Pediasure with Fiber seemed to be helping. But after talking to the SB doctor I have realized that Grace will be on the Miralax for the rest of her life. If we stop and start the lax, than her body won't be able to constantly hold water, which will still cause her to get bound up. So we are having to figure out a dose that is good for her on a daily basis, and will do that for her in the morning until further notice. I'm kinda bummed because I don't want her to need things like that, but seeing how simple of a medication it is, I'm thankful it's not worse. It's just a powder I pour into her drink in the morning. No taste, no side effects, and my little one can void better than she has been. So all in all, the monkey on our back isn't a bad one, but it would be nice to see him off our back sometime in the future!

Amanda