Galactosemia Food Information Cooperative
Information about Galactosemia
Written by a parent of a child with
galactosemia for the child's elementary school teachers
(Geared for child in grades 3-5)
(Note: I replaced our son's name with
"our child" for the purposes of sharing this guide with you)
NOTE: THIS GUIDE MAY NOT BE APPROPRIATE FOR YOUR SITUATION, BUT FEEL FREE TO USE ALL OR PART OF IT FOR YOUR OWN PURPOSES
Information about Galactosemia
(Concerning Our Child)
For Our Child’s
Fourth Grade Teacher
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 where the body fails to produce
an enzyme that is needed to convert galactose to glucose for energy in the
body. The only treatment for galactosemia is the adherence to a restricted diet
for life, as well as routine blood tests to check the levels of
"galactose" in the blood.
About the diet for Galactosemia ...
To treat galactosemia, sources of galactose and lactose must be
eliminated from the diet. This primarily means that all dairy products
and ingredients must be strictly avoided. Except for galactose, children
with galactosemia need the same kinds and amounts of nutrients as other
children do in order to grow and develop normally.
What we are asking of you (our son's teacher) …
You (or any other person) should NEVER give him any food or drinks that we have not approved. Even "little tastes" containing galactose add up and can result in elevated galactose levels in a child's body (1) with potentially toxic consequences.
While our son is doing very well at learning to read
product labels in order to identify dairy ingredients, we are not fully
confident that he has mastered this. Please do not rely on our child
to determine if a food product is acceptable for him to eat. Similarly, we do
not expect you to learn and be responsible for knowing all of the unacceptable
ingredients of our child diet.
We are asking that you inform us in advance of every food activity (party,
craft, etc.) so that we can have the opportunity to provide a suitable
alternative food. Also, we are asking that you explain
his diet restriction to all other teachers who may come in contact with our
child. In addition, we would be happy to provide you with special
treats/snacks that we would label as acceptable for him and that you may keep
on hand at school for those occasions that might come up ‘on the spur of the
moment’. Additionally, _________’s mother would be happy to volunteer as the
room parent to help make things easier for you.
Please feel free to call us if ever you need to read a food label to us or
ask a question about a specific food.
Classic galactosemia is very different from a “food allergy” or
‘lactose intolerance’. Our child can be in the presence of
restricted foods; he just cannot ingest them. We do not want our child
to be isolated from a table or activity because there is a dairy item present,
nor do we wish to restrict what type of food the other children in his class
will have.
Under no circumstances should our child be
administered an “epi-pen” as a results of his mistakenly / accidentally eating
a forbidden food.
If our child were to have a "forbidden food",
please tell us the type of food and amount so that we can be alert to any
problems that he may have (such as vomiting, cramping, diarrhea, etc.).
We understand that accommodating 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. Thank you for taking the time
to read about our child diet. Please let us know if you
have any questions or if there is anything else you need from us.
Contact Information
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Mother: |
Father: |
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Home: Cell: |
Work: Cell: |
Some facts about Galactosemia
1. Approximately one newborn in every 50,000 births has galactosemia. (Galactosemia is very rare!)
2. Galactosemia is not the same as lactose intolerance. It is far more serious.
3. 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.
4. The galactosemia diet must be continued for life! Unfortunately, Galactosemia is not something that a person "outgrows".
5. Galactosemia is not contagious.