Nutrition is very important for a child with MLD. If a child is properly nourished, he or she will be in a much better position to combat viruses, bacteria and infections. In our experience, the best way to feed a child who has MLD is through a gastro-intestinal tube, commonly called a G-tube. This is a tube that is inserted by a surgeon directly into the child’s stomach, allowing the child to receive nourishment without having to swallow. This is very important for children with MLD, because as their muscles weaken, it becomes harder for them to swallow, and they run the risk of inhaling food into their lungs, or aspirating. This can frequently result in pneumonia.
Parents can sometimes have very strong feelings about whether to have a G-tube placed in their child’s stomach. Sometimes parents are reluctant to do it because they feel that it will be a sign that they are giving up on the child. However, G-tubes can be easily removed, and the hole can close in a matter of hours. They can also be used for supplemental feeding, such as when a child is sick, or for giving medicine. We have found that it is generally better to have a G-tube placed earlier, when the child is healthy, rather than waiting until they are undernourished.
To determine your child’s nutritional needs, you need to consult your child’s doctor or a nutritionist. The nutritionist will determine what the child’s proper weight and height should be for his/her age. If the child is fed through a G-tube, the nutritionist will most likely recommend a formula that is specifically made for G-tubes (sometimes called an “enteral formula”). These formulas usually have all of the vitamins and nutrition that a child requires and ensure that the child is not ingesting “empty” or useless categories. Please see the separate pediatric G-tube formulas document for a listing of various enteral formulas. Keep in mind that a child can react differently to different formulas, so if one formula doesn’t work, try another. For help in deciding about which formula to choose from the manufacturer Nestle Nutrition (formerly Novartis), click here.
Additionally, The Oley Foundation is an organization that is devoted to helping people who require home intravenous or tube feeding. They provide education and networking support and also provide access to free (you must pay for shipping).