I know, EDS Mama, how gut wrenching it is to watch the child who once loved food, things like steak and potatoes, now struggle to get in enough calories, exerting tremendous amounts of time trying to figure out what might be consumed without pain today. Perhaps you are in the middle of learning how to administer TPN or a liquid feed for an NJ or GJ tube. You have no nursing background and yet you are expected to quickly learn how to safely feed your child knowing that a small mistake could result in a deadly infection. It feels like an overbearing weight. Somehow God enabled me to be able to do everything I had to do in spite of the enormous fear I felt at the time and He will do the same for you.
Even when I felt inadequate, God showed me that He would protect my daughter. TPN or Total Parenteral Nutrition carries with it severe risks. It can literally destroy one’s liver quite quickly since our bodies are not made to be fed a sugary liquid through our veins. Unfortunately, sometimes an EDS Mama is left with no other choice for her child. Facing this, Matthew 6:25 takes on new meaning when one reads, “Therefore I tell you, do not worry about your life, what you will eat or drink…” In spite of all the risk, we watched how TPN actually strengthened our daughter as the body began to receive nutrition that it needed.
We have also witnessed the long term effects of poor nutrition. Fatigue begins to set in without an adequate energy source, muscles begin to waste without protein, an EDS patient may become wheelchair bound, POTS or dysautonomia symptoms become heightened as the body becomes deconditioned, and even teeth, hair, and nails exhibit signs of malnutrition. Everything just goes downhill without proper nutrition. With EDS and dysautonomia, there are many factors which play into these challenges including delicate tissues and lax blood vessels, visceral hypersensitivity, vagus nerve involvement, GERD, gastroparesis, nausea, vomiting, and ulcers caused by pain medication. It takes a multi-faceted approach to keep everything in balance and only other EDS Mamas will truly understand what it feels like to be in the middle of this web that seems to ensnare our child. It is difficult to maintain the joy of preparing meals for the rest of the family when even the smell of food nauseates your loved one and drives her to her room.
I would encourage you Mamas if your child is still eating orally to not give up trying to find foods that are tolerated. There are many types of protein supplements on the market from whey to rice to pea to egg protein which can be mixed with almond or rice milk or even water. One protein drink sipped slowly throughout the day is better than nothing. Protein helps to maintain muscle mass and remember that even the heart and brain are muscles. Perhaps a small amount of brown rice and well cooked vegetables might be tolerated. Homemade gelatin made with kosher gelatin and real fruit juice is fairly digestible. Greek dairy, soy, or frozen yogurt are soft consistency foods. A spoonful of peanut butter adds protein and calories. Organic, cooked oatmeal gains more calories with a bit of brown sugar on it. We found that more natural foods were better tolerated than those filled with artificial ingredients. What works on one day may not work on the next. And on really bad days, clear liquids will at least keep your child hydrated. Homemade broths can provide hydration along with calcium and minerals.
Try not to be discouraged if food by mouth fails. God will intervene and make a way for your child. You may be in a bad place right now with eating and drinking, but do not give up hope for better days to come. Even children with tubes and TPN can recover to the point of not needing these interventions. I know you get tired of having to deal with things that most people never think twice about, but God sees everything you are going through. If you are watching your child deteriorate physically due to eating challenges, remember that the physical body is only a shell for the spiritual body living inside. It comforted me to know that when I saw the physical body very tired and wasting away, that the Holy Spirit was very much alive inside. That is the neat thing about our faith. Our hearts can be on fire for God no matter what happens to our physical bodies. As a Mama, this spurred me on to continue to feed into the spiritual by talking to my daughter about God, eternity, and His promises to us in His Word. 2 Corinthians 4:16-18 NIV says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” This passage makes me feel like God wrote it just for me. But it is for you also, EDS Mama.