Page 24 of 26Parent Guide to MSUD and Me
Families of children with MSUD often have questions regarding how and why MSUD happened.
Here's a simple overview of the genetics behind MSUD.
This information might not be meaningful to young children, but might be useful to older children with MSUD, older siblings, and other family members.
As a parent, you must determine the appropriate age at which to share this information with your child.
When the time is right, I have included activities to help your child understand some of the genetics.
Our bodies are made of millions of cells that contain our genetic code packaged in structures called chromosomes.
All along these chromosomes are genes, like beads on a string. These genes are blueprints for our body and they tell our body how to function.
In most of our cells we have 46 chromosomes that are arranged into 23 pairs by their size. Chromosomes come in pairs and so do genes!
We get one of each pair from Mom and the other from Dad.
So a child gets half of their genes from Mom and the other half from Dad. That's why we look like our parents and other family members! Here are some traits that run in the family.
Eye color, Hair color, Tongue rolling, Hitch-hiker's thumb.
Can you name some other features that you have in common with your Mom and Dad?
Sometimes there can be a change in a gene and it might not work like it is supposed to. MSUD is passed down by autosomal recessive inheritance. This means that someone has MSUD because they have two non-working genes,
one inherited from Mom and one inherited from Dad. If someone has one non-working gene and one working gene they are called a carrier and do not show signs of MSUD.
So with each pregnancy, there are four possibilities. Each pregnancy is an independent event. It is like flipping a coin.
Just as we cannot control what color hair we have or how tall we are we cannot control what genes we pass on to our children.
Now you can draw your family tree and see what you have in common with other family members!
Here are some ideas to help your child become more understanding and accepting of MSUD.
The goal of this book is to educate your child about MSUD so that eventually your child will become more independent and responsible for the diet.
The suggestions listed were presented by fellow parents of children with MSUD.
I hope some of the ideas are helpful.
Many new parents have millions of questions running through their minds about how the diet is going to be followed in school. It is often helpful to first speak with your child's teacher about MSUD so that you, the teacher, and the school staff can begin to work as a team. You can start by giving your child's teacher some literature explaining MSUD and the importance of following the MSUD diet. The teacher can then contact you if there is a special occasion coming up in class where food would be involved. If the food is not allowed in the MSUD diet, you can send something similar or a special treat for your child to eat. Another option is to send your child into school at the beginning of the school year with a box of special low protein treats to be used during special occasions.
If your child wants to order lunch from the school cafeteria, you can ask for the school's menu in advance in order to review which foods and how much are appropriate. It might also be helpful to make contact with the school's dining staff to find out about portion sizes. You can also discuss having your child record what types of food and portion sizes to determine levels of protein. This process can help your child become involved in the management of the diet. In addition, your child might not want to drink the formula during school time in front of classmates. One suggestion is to discuss with the teacher about drinking the formula in a different room during a specified time each day. Another suggestion is for your child to drink the formula before going to school and then immediately after school is over.
Differences are what make the world unique
In order to help your child understand the importance of the diet, you can use this opportunity to explain how all people are different and unique. A child with MSUD is just like other children, except that he/she must follow a very different diet. You can explain that different people all over the world eat different types of food due to various customs, religions, and traditions. For example, people from different countries eat different types of food. In addition, there are vegetarians who do not eat meat.
You can also discuss other types of diets that are related to heath issues such as high blood pressure (restriction of salt), diabetes (control of sugar), and Phenylketonuria (PKU) (special formula and low protein diet similar to that used in treatment of MSUD).
Fun with Food
Food is a necessary ingredient to sustain life but it also adds to social, behavioral, and emotional recipes. Therefore experiences with food can shape someone's development. Your child can learn about various types of food by preparing foods different ways (slice, dice, chop, raw, baked, sautéed, fried, etc). Experiment with foods that are allowed in the diet by cooking low protein meals with your child. You can discuss how foods prepared with low protein ingredients that are unique to the diet often resemble other foods.
By trying new foods and preparing foods in a variety of ways, your child will learn the broad span of the diet without feeling constricted by it. You and your child can create a special MSUD cookbook filled with pictures of foods your child likes and recipes that you have made together.
Independence and MSUD
Eventually, a child with MSUD needs to take responsibility for his/her diet. This sense of control will allow the child to explore the outside world, hang out with friends, spend the night away from home, and develop a feeling of independence. By teaching the MSUD diet to children, your child will soon learn how to determine what and how much food they can eat within the borders of the diet. Various food-related activities can help your child gain this important feeling of control. For example, you can take your child food shopping and allow him/her to choose the types of food he/she likes and enjoys. Your child can look through low-protein cookbooks to choose recipes he/she would like to try.
You can also teach your child how to keep track of the Isoleucine, Valine, and Leucine in the diet using creative techniques such as a decorative daily food chart, which counts the number of these amino acids each day. Finally, another important activity is to teach your child how to measure and mix his Mighty Milk or formula.