Tackling Constipation--without Miralax (PEG 3350)

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).

Dietary Changes

First of all, a HUGE THANK YOU to everyone who responded to my request for avoiding constipation for Elena.  The followers of this blog provide invaluable information regarding life with cerebral palsy, and I seriously appreciate your readership and your comments.

So, after overnight hospitalization for constipation, with x-rays to prove impaction, we were sent home and told to give enemas every 2 hours until productive.  After #12, we switched to 1x/day for a few days.  We stopped at #14 or #16, I forgot.  Elena was a pretty good patient, even though she seriously disliked what we had to do.  I felt so bad for her...once she was eating and drinking well, I knew we had to find some changes to improve her ability to make bowel movements.

That was two weeks ago.

We're doing the "full court press" against constipation.  Elena will do just about anything to avoid this happening again.  I've made the following changes:

1.  Reduce the amount of milk Elena drinks.  She is still allowed milk (we switched from whole to 2%), but only for one meal (on average).  Instead she will substitute water.

2.  She takes two probiotics at breakfast every day.  We decided on Culturelle Children's chewables and Digestive Advantage probiotic gummies (Wow they are expensive!  But still cheaper than the hospital).  She also has yogurt for breakfast several days a week, half of the time sprinkled with crushed seeds/ground oats/flax seeds.

3.  We've changed her Miralax dosage from 2 tsp to a full capful (~3T) in a super large cup filled with 1/2 apple juice, 1/2 water.  She's supposed to drink it throughout the day until it is gone.

4.  I loved the suggestion of increasing her fiber intake.  For her age, the general rule is age+5 grams of fiber/day, in her case this is 13g.  I think she is close to 10 on a regular day, so my goal is to try to double it.  I haven't made a huge change in her diet to achieve this yet--but we are examining food she normally eats and asking ourselves "does this have fiber in it?".  Some meals there are lots of fiber-rich foods, and others there is ZERO.  I'm switching foods like pasta for the whole wheat version (which none of us really like) and trying different grains instead (which no one but me likes).

5.  Encourage water drinking throughout the day.

One thing I really noticed, though, is that I can't see a way to dramatically increase her fiber intake and keep her calorie intake high.  We've tried extremely hard since she was a baby for her to gain weight.  I'll have to find a happy medium if our dietary changes can't keep up with her energy demands--or if she can't keep close to 38 lbs.  My gut feeling is she'll be fine without pushing high-calorie real foods--or, at absolute minimum, we keep the cheese and dairy and pasta intake while making sure to add something to the meal that has a better fiber content.

Overall I think we are on the right track.  Thank you so very much for your comments!

A Rough Start to Summer

Our summer started off well enough--Elena was ready for the last day of school!

After bus surprise!

Two days later she developed a cough.  The same day, she had a well visit at her pediatrician.  Overall her development is going well, she's on her regular growth curve.  We've worked hard at getting Elena to gain weight (seen many nutritionists) and stay strong (lots of therapy and exercise).  She is nicely on the 3rd percentile for age (8), height (44 inches), and weight (42 pounds) and a BMI score of 16.  

Then she got sick.

Sick with some random virus, nothing too crazy--I know because I got it, and so did Vivian.  Started with a cough and fever.  Every time Elena gets a fever, we worry about slight dehydration--which inevitably leads to constipation.  We give her lots of fluids (adding extra Miralax) and were ready to wait it out.  

She started vomiting.  I thought it might just be a stomach bug, as she felt a little better the next day.  The next night, she started vomiting again.  This has happened before.  The last time this happened, again, it was after a short illness, and the nighttime vomiting continued for over a week (with some watery stool).  Her pediatrician pieced together the puzzle-her bowel was mostly obstructed (only allowing liquid to pass).  During the day, her general movement allowed some bowel movement, but when she went to bed for the night, her food and drink had no where to go--so she would get sick.  

This time, we just couldn't get any liquid in her--she threw up everything, including sips of clear liquids.  She did not have a fever.  After close to 24 hours of this, I took her to the ER.  I didn't think she was super sick--I figured it was a bowel obstruction, like before--but I assumed that someone in the ER could help her (if nothing else, administer IV fluids).  They weighed her when we got in--she was 37 lbs.

Elena was given anti-nausea medication.  It helped her not feel sick to her stomach--but didn't stop the vomiting (anything taken by mouth just didn't have anywhere to go!).  IV fluids did perk her up a bit, and she was finally able to pass urine.  She had a chest x-ray (b/c of her cough), which was clear.  Her abdominal x-ray was very informative.

from http://simplehealth-healthbeautywellness.blogspot.com/2013/05/colon-cancer.html

Elena's colon was impacted--with no visible air pockets--from the rectum to the splenic flexure.  My guess is this is significant, but not serious.  

Special Visitor:  Dusty the Therapy Dog

Another special visitor

Since we couldn't get her to keep any laxative liquids down, she got enemas every two hours to try to remove the blockage.  Two were administered at the hospital; they had no effect.  Her doc and I agreed that we could do this at home--she'd probably be more comfortable, and possibly start to move around which could help her situation.  I requested an IV bolus, and we headed home with her nausea meds and the plan to take steady liquids by mouth (with a laxative mixed in) and enemas every 2 hours until they were productive, as long as she was awake (sleeping took precedent over any of this).  

Eight enemas later, they started being minimally productive.  By this time, Elena could drink small amounts without the danger of vomiting.  She could eat a little.  She was moving surprisingly well, given her inactivity for the past week--being fatigued/immobile is horrible for a spastic cp kid, as inactivity makes tightness worse.  I gave her lots of leg massages and we tried to play games in different sitting/laying positions.  

After enema #12, she was out of patience.  (Poor E!)  She woke up the next morning and was able to pass very soft (hardly solid) stool, unprompted.  Her doctor said to continue administering one enema/day (and continue her laxative) until large stools are passed (presumably responsible for the blockage).  This is where we are today.

Obviously, I don't want to repeat this.

Elena eats a balanced diet.  She loves veggies and fruits.   She takes a daily dose of Miralax (and I'm not interested in conspiracy theories on if you think this stuff is bad--her life is worse without it, period).  She has been on the same dosage of Miralax (2 tsp in the morning) since she was 8 months old. 

My thoughts are 1) have her switch water/juice for milk (most of the time--that girl loves milk), 2) make sure she eats yogurt several times a week (top it with chia seeds or something like that, and introduce probiotic supplements?), and 3) give 2 teaspoons Miralax morning AND night.  A friend also mentioned some sort of gut massage--where you gently massage (in a specific manner) to help move things along the colon.

Do you have ideas of what we can introduce to her diet?  (I'm looking for proactive ideas here.)  THANKS!

Delays

While we didn’t know much about babies, we figured Elena was a little different, but we weren’t sure if that was just “a preemie thing”, or if she was just late, or if she was fine but different, or if she actually wasn’t fine. Here’s the short list:
Volume. Elena barely made sound—didn’t babble, didn’t coo, didn’t cry—hardly ever, and certainly wasn’t anything remotely close to colicky. People who would come to visit would say “oh, wow, she’s such a good baby”, which we’d wonder why she was so incredibly quiet. I refer to these months as her Mute Period. She did turn when I made sound—or, I thought she did, but I couldn’t be sure. She was tested for deafness when she was XX months old. She has one tone missing in one ear—which means she hears as well as you or I. For whatever reason, she just didn’t make sound, really.
Vision. Elena’s eyes were always “off”. At first, I wasn’t sure if this was a big deal, but as she got older week by week, it was obvious she was cross-eyed. They call this congenital (born with) strabismus (crossed eyes). It was pretty bad, her eyes looked “pegged in”. Her pediatrician immediately noticed—but didn’t tell us, at first, that congenital strabismus is a hallmark of neurological problems. He waited to see how she was progressing in other areas—which was fine, b/c I probably wasn’t ready for more bad news, and in any case specialists would have waited a couple more months, too.
Eating. Elena was NEVER a good eater. Her best bottle-fed moments were maybe 6-8 ounces of breast milk at a time. She has never, even now, voraciously eaten any type of food. She also rarely spit up. In retrospect, maybe I wasn’t vigorous enough in getting her to eat. Her doctors thought she was growing okay, she wasn’t “failing to thrive” or anything, but she was definitely not gaining weight like other babies. Appetite/size was sort of chalked up to “well, you’re small, and your husband is small, so maybe she’s just small” type of thing.
Movement. I now know that babies, even tiny ones, do a certain amount of “writhing”. Elena never did this. She wasn’t necessarily a “noodle”, or a stiff board, but in general she’d just sit there in her bouncy seat. She didn’t move her arms a ton, but she did move them, and she definitely moved her hands more than her feet. She did kick her feet, but not much, and she tended to do them together, symmetrically. She certainly didn’t bring her legs to her stomach much (like a reverse crunch), or twist her midsection. She rolled over early, due to the strength of her “back arch”—we learned (much much later) that back arching, like she would do, is common with spastic CP.
Constipation. Elena was constipated from day 1. Even on a diet of breast milk, she had very irregular bowel movements. At one time (still, only on breast milk) she had gone 5 days without one. The nurse was not concerned—she said it was normal for babies to “have bowel movements from 4x/day to once every 8 days”. I was appauled—what kind of range was THAT?! I tried mixing juice, prune juice, and corn syrup in her breast milk, and nothing worked. She’d eventually have what we called “a blowout”. I knew we’d have to do something about this, but figured Breast Milk Is Best, so we were doing the right thing. See Breastfeeding a Preemie.
Anemia. At E’s pediatrician (I forgot which month checkup), they did a routine iron test. Elena tested so low they thought there was no way it could be correct. She was severely anemic—which could have accounted for her lack of energy/hunger/movement. She was immediately put on an iron supplement—and even though iron uptake is normally very fast, checkups week after week still had her testing very low. We started suspecting a problem with her chelating iron/heme in her blood. The test results proved normal, despite the low numbers. She was on the iron supplement for nearly a year. Needless to say, taking iron tends to lead to constipation—a problem we already had.