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A more holistic approach

Do you feel overwhelmed by the bowel management for spina bifida topics for your baby with spina bifida? This is often an unexpected aspect of care that is addressed from the day our sweet babies come into the earth! This post is to share what has worked for our son, Jack, who was born with spina bifida at the very end of 2020, and also to list some of my favorite products we have used on this journey so far!

** Please note: the information on this post is for informational purposes only, and should not be taken as professional medical advice. Please discuss any change in treatment with the medical professional working with your child!

A Little Background on Neurogenic Bowel

95% of people living with spina bifida will have some loss of bowel control related to neurogenic bowel. The nerves that innervate the bowel and bladder function are very low in the spine, so most often, the lesion of spina bifida occurs higher than the level of those nerves, and therefore, they are often affected in some way. Neurogenic bowel means that the brain and the bowel

Symptoms of neurogenic bowel can be either constipation or fecal incontinence, or a combination of both. For our little ones born with spina bifida, there is a concern for constipation, so there is an emphasis on keeping the stool a soft, peanut buttery consistency, or a type 3, 4, or 5 on the Bristol Stool Chart.

Magnesium vs Miralax

When Jack was around 6 months old, he had a 2 day bout of no bowel movement. Up to that point, his stool was pretty consistently there in most, if not all, diaper changes! So when he didn’t go for two days, all the “worst case scenario” thoughts came into our minds! Thoughts of:

  • The constipation we were so warned about
  • Bowel blockage, which could be very serious and very scary

But he had no other symptoms besides the lack of stool.. for two days. I emphasize the word “two,” because, I’ve learned with my daughter (second child), that it is sometimes totally “normal” to not “go” for a couple of days, even several days, up to like ten days! (that is for breastfed babies, not formula fed babies for the record)!

So what happened.. we called our pediatrician, she suggested the use of Miralax if he didn’t go in another day, our GI doc backed this up, and then there we were, on our first daily medication for our 6 month old, which was suggested to be used daily for the rest of his life… at 6 months!

As I read the label, which states not to take Miralax more than 7 days in a row for adults, I began to question this prescribed treatment. I began feeling unsure about giving my 6 month old baby a medication that isn’t suggested for adults to take long term. Granted, he was prescribed a very small dosage, but I still felt uneasy about this being the only option.. especially when it had only been two days! And without any other concerning symptoms! He wasn’t fussy, gassy, vomiting, ect…

So I begin looking up research articles, I looked through other’s stories on the Spina Bifida Parenting group on facebook, I looked up stories and posts on instagram, and I came across similar stories as mine, with similar concerns, and a desire to manage the bowel regimen in a more holistic way.

I am a pelvic floor physical therapist, and constipation was a very common symptoms for a lot of my patients, so I knew that diet plays a huge role in our gut health, motility, and stool consistency.

I had also come across magnesium in several different posts. Specifically, magnesium oxide and magnesium citrate. Magnesium is a naturally occurring element, that our body needs for certain functions. We obtain magnesium from certain foods and supplements, so I felt like this was a much safer and more natural approach for a bowel management for spina bifida program.

How Does Magnesium Help With Bowel Management for Spina Bifida?

Magnesium is an “osmotic laxative,” meaning it draws water into the intestines and softens the stool. It also relaxes the intestinal muscles, which aides in motility and transit.

How To Consume Magnesium

Foods like green vegetables, nuts, and whole grain products will give you some sources of magnesium. Here is a photo of some natural foods containing magnesium! You may eat more than you realize!

Bowel Management for spina bifida magnesium foods

What is the concern of MiraLAX?

The concerning ingredient in MiraLAX is PEG 3350 (polyethylene glycol 3350). There have been parental reports of children exhibiting neuropsychiatric symptoms after the use of this laxative.

MiraLAX has commonly been recommended for short-term use for occasional constipation. The FDA (federal drug administration) has not approved it for long-term use for adults or children. It is also not labeled by the FDA for any child under the age of 17. However, it is currently being prescribed more and more in the pediatric population for long-term, sometimes, daily use for bowel management.

The concern for me is also that it has become the first-line treatment choice.

There are some interesting reads I came across regarding this such as:

  • Mothers against Miralax

The good news is that there is current research study happening at Children’s Hospital of Philadelphia (CHOP), so

Diet Recommendations for Bowel Management for Spina Bifida Under Age 3

My two main focuses: fluid intake and fiber!

A typical day for fluids: Milk the morning, water and coconut water throughout the day, and milk in the evening. I try to stay away from sugary drinks, but every once in a while I’ll mix some juice with water for a little change.

My go-to foods:

  • Breakfast:
    • Oatmeal (with any toppings you like: peanut butter, chia seeds, fruit, flax seeds, honey…)
    • Multigrain toast with peanut butter
    • Avocado toast
    • Eggs
    • Smoothie (with all the added fiber supplements: chia seeds, flax seeds magnesium, etc..)
    • Burrito
    • Breakfast fried rice (with left over rice)
    • Milk
  • Snack:
    • Water or coconut water offered
    • Fruit: apple, grapes, pear
    • Dried Fruit: raisins, cranberries, mango
    • Nuts: pecan, pistacio, walnut
    • Multigrain crackers
  • Lunch:
    • Coconut water or regular water
    • Veggies and hummus: Jack will eat cucumber and pepper mostly.. still working on other veggies
    • Multi grain crackers and hummus
    • Guacamole with tortilla chips
    • Burrito
    • Taco meat and black beans
  • Dinner:
    • Fish and brown rice
    • Falafel and brown rice brown rice
    • Sweet potato baked with olive oil
    • Pasta with pesto or tomato sauce
    • Lasagna
    • Chicken and brown rice
    • Beef stew

Brown Rice vs White Rice

Bowel management for spina bifida brown rice

I try to stick with brown rice over white rice when I can! Mostly for the fiber content, but it just has better nutrients over all! For more information on the health benefits of brown rice, click here.

Fluids and Hydration

1. Coconut Water

Bowel management for spina bifida with coconut water

Why is coconut water so great?!

  1. It tastes good, but has no added sugar!
  2. It aides in digestion (natural source of magnesium!)
  3. It can be found in a natural and organic form
  4. It is 94% water with a low-calorie count
  5. It is high in electrolytes, including magnesium, calcium, and potassium)
  6. It is very hydrating, which is good for bladder and bowel health
  7. Source of B vitamins and antioxidants

Basically, in my opinion, there is no detriment to drinking coconut water! I have found it hard to get Jack to drink enough water to stay adequately hydrated, so coconut water has been a staple for us! It has also helped us to avoid juice drinks, which are higher in sugar.

You can read more about the health benefits of coconut water here.

2. Flavored Water

Hydration is key for great stool consistency! If your child has trouble drinking plain-old water, another option could be flavored water.

  1. Hint Water: these look like juice boxes and come in a few different flavors!

I try to avoid juice or other sugary drinks as much as possible, since sugar has been shown to increase the risk of a urinary tract infection (UTI). It’s subjective, but I do think Jack was having more frequency UTIs when I was giving him water mixed with apple juice. So, I’ve cut out sugary drinks for the most part and I’ve stuck with coconut water!

Favorite Products for Bowel Management

Here is a list of my favorite products for a bowel management program for spina bifida:

  1. Burts Bees Diaper Ointment: It is important to keep a good paste on hand for any risk of skin breakdown. With spina bifida, there is often decreased anal tone, which allows leakage of stool. Especially when the stool is on the softer side, there can be more irritation and can become serious if not treated. This one has been the best for us! It’s thick and creates a great barrier! It also smells nice and has great ingredients! Whenever Jack has stool on the softer side, we even apply this as a precaution.
  2. Magnesium Oxide Powder: This one from Amazon has worked well for us, but we have also tried the NOW brand, Magnesium CALM Powder ( this is a magnesium citrate supplement, but is found to have the same effects as magnesium oxide). Check out this article for more information on the effects of magnesium oxide in the treatment of constipation.
  3. Liquid Magnesium: I like to keep this in the fridge for just a different option, as the powder can sometimes be hard to dissolve in cold drinks and can cause an undesirable chalky texture. It has a vanilla-orange flavor, so even goes ok in milk. It is a form of magnesium citrate.
  4. Fiber Supplements:
  5. Mommys Bliss Constipation Ease:
  6. Coconut Water: I like to get the Kirkland brand from Costco, but here is another brand from Amazon, which has only 1 ingredient and 0g added sugar. I always look for:
    • Organic
    • No added sugars
    • 1 ingredient: coconut water!
    • no pulp (preference)
  7. Prebiotics and Probiotics
  8. Glycerin liquid suppositories: This has helped us a lot in the mornings. It has also helped throughout the day, if there is stool there that isn’t coming out. For awhile, we helped the stool come out by pushing a bit behind the anus, but I think we even created a tiny fissure, so I felt that we should avoid that as much as we can. Once we started using these suppositories, it helped the harder stools to slide out without any help from us! For long term use, you can also clean these and refill them with glycerin, which you can get in bulk on Amazon, but could be expensive over time. May be worth asking your G.I. if it could be covered by insurance.

Other Resources:

There are several facebook groups for parents of a child with Spina Bifida. They can be a helpful resource for learning about what other families do. Once you are accepted into the group, you can search for any topic on the forum, and you will see posts from others seeking the same answers. It has been very helpful for me, especially in finding a more holistic approach for these common bowel and bladder symptoms.

Also, most major pediatric hospitals will have a spina bifida information page that has some helpful resources. And this seems like a great resource as well!

Reference:

  1. Person, Bortz, K., & Katherine Bortz was a staff writer for Healio, specializing in pediatrics. (2023, October 2). Parental concerns over Miralax laxative continue to spur closer review. Healio. https://www.healio.com/news/pediatrics/20170331/parental-concerns-over-miralax-laxative-continue-to-spur-closer-review#:~:text=However%2C%20one%20commonly%20prescribed%20laxative,in%20children%20following%20its%20use.
  2. Sass, Cynthia, and Erica Meier. “Is Brown Rice Healthy, and Should You Choose It over White Rice? Here’s What a Nutritionist Says.” Health, 27 Mar. 2023, www.health.com/nutrition/is-brown-rice-healthy.
  3. Mori, Hideki, et al. “Magnesium Oxide in Constipation.” Nutrients, vol. 13, no. 2, 28 Jan. 2021, p. 421, https://doi.org/10.3390/nu13020421.
  4. Kumar, Karthik. “Is Drinking Coconut Water Good for You? Coconut Water Side Effects.” MedicineNet, www.medicinenet.com/is_drinking_coconut_water_good_for_you/article.htm. Accessed 11 Jan. 2024.

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