If you are the parent of a child with Down syndrome, you have likely dealt with or heard other’s lament on their struggles with a very specific digestive issue. When I first took my kids to the pediatrician, she asked me right out, what kind of medicine I wanted for constipation. It is widely assumed that all children suffer from this, and the idea behind that isdue to low muscle tone. We struggled with this when we brought the kids home from the orphanage at ages 5 and 6. It was so bad that one of my children would not “go” for a week, and then they would sit in the bathroom and cry big raging sobs when “it” happened. They would also have a lot of passing of blood. My other child would not “go” for a very long time, get completely and painfully distended in the gut, and then be very sluggish. It was so sad and concerning to me as their mother. I was determined to find an answer, and not one that acted as a band aid to the problem, but a true cure.
I can happily say that I found that cure, and both children are medication free. Both children have no problems going to the bathroom every single day. They also do not have the insane eczema that caused them to literally peel big peely pieces of skin (Tanner does still have a mild dry skin just not nearly as severe), and they both are much much less sluggish.
So how did we heal their gut?
It wasn’t easy to heal them, and it caused some friction whenever we would go out. We spent a year of intensive work, and then the last two years keeping most of our tactics but in a relaxed way. We are diligent, it takes effort, it takes consistency, but it is completely worth it. So here is what we have done, and it has worked wonderfully.
When we met our children, we had to literally fight them from drinking the water from an outdoor pool that had a dead bird in it. When inside, we fought them to keep them from drinking water in the potted plants. We were told that we shouldn’t give them any of our water, and were blamed for Tanner’s stomach ailings. They were extremely dehydrated. However, when we finally were in control of their diet, they refused to drink water. It didn’t make any sense, but we remedied that. Both children are highly motivated by food, so we just required that they drink water before eating. We still do this today. Before each meal and snack, they drink their water, and they absolutely do not fight us anymore. Often they will request water now. Hydration is extremely important to keep our organs functioning, especially the bowel. We all need to be properly hydrated. Our kids drink about 24+ ounces of filtered water each day aside from their milk, kefir, and smoothies.
This is a big one. The one that most people do not want to do, the one that is the absolute most work, and the one that I believe has helped tremendously. About six months after our kids came home, we took them off of gluten. They do eat gluten now, so no I’m not saying gluten is a big NO. I also removed all refined sugars and processed foods. Believe it or not, Anna had quite the addiction to sweets. We couldn’t give her any water (granted the water is a source of sickness over there), but we did watch them give her candy bars and ice creams. She was given treats when she would perform (she has quite the memory), and thus she was addicted.
Neither of the children would eat vegetables. However, that is part of our lives. We eat vegetables, they are essential and needed for our bodies to perform in the most optimum way. I suppose they thought that eventually they would get junk. I didn’t buy junk though. There was nothing in the house that wasn’t healthy. This is a struggle for some people, but change doesn’t happen without a little work and sacrifice. Eventually they figured out that this was the food we were going to eat. We do not eat out very often. This helped tremendously, for whenever the kids did have the opportunity to eat processed junk, we had at least a weeks fight to get them to go back and accept our diet.
Today, our kids LOVE kale smoothies, kale chips, and even sauteed kale. They eat salads happily. They stand in the garden and request tomatoes from the vine. Honestly there are very few foods that they give us grief over (broccoli for Tanner), but they still eat it. Most things they thoroughly enjoy. They have no qualms eating salmon, spinach, quinoa, and bananas for lunch. They play in their play kitchen and cook oatmeal, because steel cut oats or 9 grain mix is on the menu for breakfast 4 times a week. They use a lot of butter in their play kitchen, as does mommy in hers. They eat coconut oil every day. Coconut oil is very beneficial, and I use it liberally in their diet. I get mine fairly cheap from vitacost. I know there are better versions out there, but I’m not made of money, and we have to do the best we can with what we have.
Our basic diet (for us all not just the kids).
- lots of veggies (that fiber gets the bowels going and cleans the colon)
- lots of healthy fats and oils such as coconut oil and butter for cooking as these are more stable for the heat and lots of olive oil for salads. I’m also learning to render tallow from our grassfed cow.
- whole milk (our kids drink non-homogenized milk since we can’t source raw milk in our area, but once we buy a cow, they will be drinking lots of raw dairy)
- NO refined sugar, we use raw honey, maple syrup (John just made some), stevia that I made, and sometimes sucanat or rapadura.
- NO refined grains. They eat steel cut oats that I buy in 50lb quantities, rolled oats for homemade granola and such (also bought in 50lb quantities, it’s cheaper), rye, wheat, brown rice, quinoa, etc. I’ve recently been soaking these things to reduce the phytic acid, but that is only recently, and they’ve been recovered for a long time now.
- lots of meat and eggs, meat is good for you, red meat is high is B vitamins, and eggs are a super food. We bought a grassfed cow to stock our freezer and make meat more affordable, and we have our own chickens to provide eggs.
- cultured things such as kefir, yogurt, and soured veggies help the gut flora by providing much needed probiotics to balance the bacteria
That is basically it. We have been very diligent to take food with us in order to keep their diets pure. Sometimes that has meant saying no to a table full of cakes and other processed foods. Thankfully the kids (even Andy) love the treats I make. Now that they are healed, and do not give us to much trouble eating healthy, we allow the occasional junk slippage. They are not missing out though, they still get burgers, pizza, cake, candy, and fries. It is just made by mom with ingredients that nourish our bodies instead of robbing them of valuable nutrients.
We all need exercise. Low muscle tone and Down syndrome seemingly go hand in hand. We believe that muscle can be built and conditioned though. Exercise is essential, it gets the blood flowing to the intestines, it releases endorphins, and it builds our bodies. Exercise tones and strengthens your intestinal tract by increasing the blood flow to the intestines and causing more powerful contractions in the intestinal wall that gets the poop out more easily. (Yup I said poop cause that’s what it is and that’s what causes so much trouble). Our kids didn’t like to exercise initially. Anna would cry walking across the parking lot to the store. She wanted to sit. We don’t have cable and limit television, so sitting quickly became boring, especially when I would interrupt her self-stimming. I believe her gut and lack of prior activity also caused her to not want to move much, who wants to move when your belly hurts ya know. Now, they exercise with me. Each morning we workout (well I do and they like to copy me), and Anna says “exercise is pun.” I have PCOS, and need the exercise, plus I wouldn’t ask the kids to do anything that I wouldn’t, so why not exercise together. Kids see our habits and activity. Both of my children with Down syndrome can climb the monkey bars, play outside for hours, help Dad bring wood to the house in the winter, jump around the yard or on their mini trampoline, and ride bikes. They are very active, and do not tire out like they used to. Our insistence that they be active has really built up their stamina, and provided them with not only well working bowels, but the ability to go and enjoy being a kid. They are not held back by physical limitations only to watch other kids play.
That’s it in a nutshell. It’s all about being hydrated, eating a REAL food diet, and getting active. I believe that each of these things are incredibly important for keeping the constipation at bay, and having overall good health. We did not see results right away, it took about six months. I’m not saying this is the answer for everyone, nor that it would work for everyone. I am saying that I have two children with Down syndrome who are not biologically related, who had different bowel issues, and it works for both of them.
Does it require a lot of work and diligence? Yes.
Do I sometimes have to be the meany who says no? Yes.
Are my kids taking medications with possible even more damaging side effects? No.
Are my kids sobbing in the bathroom from the pain and agony of constipation? NOPE!
To me that is what makes it worth being “mean” sometimes, for me that is what makes it worth being in the kitchen for a few hours, and for me that is what makes it worth being seen as the crazy mom who is “robbing” my children of their entitled childhood junk food. I get out in the yard and play with my children, I am constantly creating flavorful and healthy fun foods for my children, and I am developing a healthy life and healthy habits in my children. My children can enjoy their childhood instead of suffering stomach pains from constipation, nausea from laxatives (hey I’ve taken them I know they stink), and sluggishness from overall feeling bad. So I’d say I’m not really robbing them of anything. It is possible to live without constipation and have Down syndrome, we have two kids who are living proof.