The purpose of this document is to inform you of a metabolic condition that our child, ____________, has. It is called "Galactosemia". We are sharing this information with you to alert you to his restricted diet and to help ensure a safe environment for our son.  We appreciate your taking the time to read this document.
 

What is Galactosemia?

 Galactosemia is an inherited disorder that affects the body's ability to utilize certain sugars from food.  Galactosemia is caused by abnormal genes that fail to produce an enzyme which is needed to convert galactose to glucose for energy in the body. Galactose is a sugar that may be found alone in foods but is usually found as part of another sugar called lactose (1).

 The most common initial symptoms seen in newborns with galactosemia are poor feeding, lethargy, frequent vomiting and jaundice. These symptoms are usually noticed a few days after the baby has begun to breast feed or drink a milk- based formula.  If galactosemia is not diagnosed early, and diet is not changed, the baby will likely suffer liver damage, eye problems, brain damage and serious fatal infections. Left untreated, excess galactose in the body may eventually cause mental retardation and/or death from liver failure.  Fortunately, however, when infants are treated early for galactosemia, many of these serious complications can be avoided (2).  Treatment for galactosemia requires adherence to a restricted diet as well as routine blood tests to check the levels of "galactose" in the blood.

About the diet for Galactosemia.....

 To treat galactosemia all sources of galactose and lactose must be eliminated from the diet.  That primarily means that all dairy products must be strictly avoided.  In addition to the avoidance of milk-based products, there are many other types of foods that are restricted (e.g. legumes, some fruits) because of their high galactose content.  Except for galactose, children with galactosemia need the same kinds and amounts of nutrients as other children do to grow and develop normally (1).
 

What we are asking of you (our son's teacher)...........

 We are doing are best to teach our child about his restricted diet.  We are teaching him not to eat milk, cheese, ice cream, etc.. At this point, however, he is not able to read food labels and cannot recognize less obvious forms of dairy ingredients.  Therefore, it is our wish that you not give him any foods or drinks that we have not approved. Even "little tastes" containing galactose add up and result in elevated galactose levels in a child's body (1).

 We will be happy to provide you with a daily snack for our child, and perhaps, provide you with special treats/snacks that we will label for him and that you may keep on hand at school.  We do not expect you to learn his diet. It is important that you not offer him any foods that have not been approved by us. In addition, we ask that you please inform other children and adults about his restricted diet so that others do the same.  It would also be great if you could inform us of any special events where it might be helpful for our son to have a "special" treat to bring in to school.

 It is fine with us if you wish to describe our child's condition as "like" a "dairy allergy" to keep things simple for people to understand.  Although, galactosemia is NOT the same as a food allergy. There are no procedures to follow if a child ingests a "forbidden food", except to notify us. (Under NO circumstances should our child be administered an "epi-pen" as a result of his eating a forbidden food).

 If our child were to have a "forbidden food" it is very important that you tell us (the type of food and amount)  so that we can be alert to any problems that he may have (such as vomiting or not feeling well).  (Our child has been on diet since his diagnosis, so we do not know what, if any, immediate physiological symptoms he would have.) Also, since he does get regular blood tests to check his galactose levels, it is vital that we know if he has been on-diet.

 We have purchased a "Medic-Alert" bracelet for our child to wear in case of emergencies. He will wear this everyday. We hope this bracelet will also serve as a "visual" reminder to staff members and volunteers of our child's diet restrictions.

 We understand that dealing with food restrictions may be difficult for you to deal with and we appreciate your efforts in providing our child a safe environment in which he may learn and have fun. Please treat our child as you would any other child in the class; just please be alert to his diet and inform others who will have contact with him. Thank you for taking the time to read about our child and his special diet.  Please let us know if you have any questions or if there is anything else you need from us.
 
 

Some facts about Galactosemia

1.  Approximatey one newborn in every 50,000 births has galactosemia. (Galactosmia is very rare!)

2. For a child to have galactosemia, each of the child's parents must be a "carrier" of the galactosemia gene. (When each parent is a carrier for a recessive trait such as galactosemia, each of their children have a 25% chance of having that genetic disorder).

3. Galactosemia is not the same as lactose intolerance. It is far more serious.

4. If a child with galactosemia does eat a food with galactose/lactose he/she may or may not feel immediately sick. It is the elevated blood levels over time from ingestion of galactose that leads to serious complications.

5. The galactosemia diet must be continued for life! Unfortunately, Galactosemia is not something that a person "outgrows".

6. Galactosemia is not contagious.

References:

 1) Nardella, Maria, M.A., R.D., " A Teacher's Guide to Galactosemia", Office of Nutrition Services, Children's Rehabilitation Services, Arizona Dept. Of Health Services, Phoenix, AZ, August, 1986.

 2) Hartz, Lori, M.S., R.D., Kimberly Pettis, R.D., Sandy Van Calcar, M.S., R.D., "Understanding Galactosemia A Diet Guide", Biochemical Genetics Program, University of Wisconsin-Madison, Waisman Center, Madison, Wisconsin, August 1995.

 3) "A Guide For The Family of The Child With Galactosemia", Ross Metabolics, Ross Products Division, 1998.