Elena has been taking Miralax (or generic PEG 3350) since she was eight months old.
I never loved the idea; but even as a baby, she was severely constipated (only on breast milk)--and when your underweight baby is constantly vomiting due to bowel impaction, you do whatever it takes. I tried everything--prune juice, fruit juice, water, corn syrup, etc. as an infant. Once Elena was impacted, our doctor recommended the "nuclear option" and had to get enemas. I was scared to do this to a baby--I was afraid I would hurt her, not to mention I didn't think it was great for her bowels. The only thing that worked was Miralax. And she's been on it ever since.
Until now. Nothing drastic really happened; sure, I've heard it all from overemotional and often underinformed parents of the evils of Miralax. As much as I preferred a natural alternative, I hadn't found one and Elena's life was better because of this laxative; period. I wrote about our last hospital visit due to impaction (because of an early fever) and decided I needed to try again--not to necessarily relieve Elena of her Miralax dependence, but to augment it with something natural if I could find it.
Blog comments were very helpful; my favorite was from a grown woman with CP who painstakingly found how much fiber she needed to stool every day--it's A LOT. I tried to get Elena to have 20 grams of fiber per day (I calculated she needed 15g, and tried to go for just a little more) and it did help--and she dropped weight, b/c fiber rich foods replaced caloric foods and Elena's intake is pretty steady (I just can't add more food, she will only eat a certain amount).
The good news is Elena is knowledgeable about her bowel habits and we talk about them every day (even if she doesn't want to). She knows she could end up hospitalized, and takes this seriously. She is willing to try new things, and is starting to be more responsible about food choices (even though she eats a wide variety of healthy foods).
Then the NYT article came out, which reinvigorated my hunt for Miralax alternatives. There happened to be a long break from school, so I decided to give our natural foods store a try (recommended from one of our PTs). I figured help would be in the form of a supplements and fiber options. (Please note; I will happily return to Miralax if it keeps Elena out of the hospital).
The first two weeks Elena received high dose omega-3 fatty acids (in a chewable gummy form), high dose probiotics (in a chewable fruity flavor), clear fiber powder (acacia fiber), and 1/2 tsp of magnesium citrate powder mixed in juice every morning, while trying to eat fiber rich foods. She doesn't have a sweet tooth, and hated the sweet/tart gummies/chewables, and took them under severe protest (her sister ate them right up). The clear fiber powder was ok if lightly sprinkled on eggs, peanut butter sandwiches, pasta or other like foods, but did not dissolve in liquids and tasted pasty. She took the MgCitrate without issue. Overall she had a bowel movement once every 2 days, and was fine for about 9 days but then had lots of cramping and abdominal pain, requiring adult dosage of laxative suppositories (and hours of waiting). Still, over a week I considered a success. I think the biggest issue was once school was back in session, I couldn't monitor her fiber and water intake midday.
I went back to the natural foods store and tried something different--Elena hated the chewables so badly (almost vomiting several times) I started to cut them up small and she would swallow them whole--so I found a very tiny probiotic pill (pearls) that she could swallow. She is very happy with this. I also bought liquid fish oil (lemon flavor) and while she doesn't love it, she will take this off a spoon happily instead of eating an omega-3 gummy. I also bought some chewable sorbitol tablets (from papaya; sorbitol is also found in prunes, which she hates but will occasionally eat) in a mint flavor and she will take that without protest. She still takes the MgCitrate. She promises me she drinks and refills her water bottle every day at school, and we continue to fill our fridge with veggies and other fiber rich foods. Our biggest issue right now is she is not as active as I would like, given knee pain and overall fatigue.
Today we are just over the 2 week mark from discontinuing Miralax (abrupt total change, no taper). She has a bowel movement at least once every two days, which is not enough in my opinion but she tells me she does not have abdominal discomfort right now. I have spent over $200 on supplements (a large bottle of PEG 3350 costs what, $8?); I am not happy about this, but maybe once I find a cocktail I'm comfortable with, I can buy in bulk?
What have I seen in terms of changes in Elena? I feel like I'm reaching here, but I believe that her hands are in better shape (she incessantly bites off the skin on her fingertips); OCD behavior has been (unconfirmed?) linked to long-term usage of PEG 3350. That may or may not be related to this dietary change. She still does it, but not as badly. She's been very argumentative and whiny (it was really bad a week ago) (I think this is due to abdominal discomfort) but she has also been patient enough to figure out her night braces, and now I can sleep well since I don't have to help her at night.
So, I ask you, Doodlers: if you or your child takes PEG 3350, how do you feel about it? Have you tried an alternative that worked for you? I am specifically interested in dietary supplements--we are tackling fiber here relatively well (although I am open to food recommendations).