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Eating out can be very scary, but with a little preparation and inquiry, can still be an enjoyable time. Some parents pack food for their child to eat at a restaurant. Others call ahead or visit the restaurant before going to eat to ask questions about the food that the restaurant serves and how it is prepared. You will probably find that some restaurants are more helpful than others. Stick to the restaurants that adequately address your concerns. Ask to read food labels (for french fries, for example) or to speak to a manager or cook to be sure that there are no restricted ingredients in the product. Some parents refer to galactosemia as "a severe dairy allergy" for simplicity's sake when describing their need for information in restaurants.

You can make dairy free cakes, cupcakes or cookies ahead of time and keep them in the freezer. This way, whenever you have a birthday party or other celebration to go to, you will always have a special treat for your child. Here is a suggestion some parents have used; bring enough "special treat" for everyone, that way your child can share what he/she is having and not feel like he is the only one having something different.

Before your child starts pre-school or elementary school it may be a good idea to talk with your child's teacher or the school director/principal to explain your child's diet needs. This sample information guide may help you in preparing for such a meeting (note - You might not agree with everything in this guide. Feel free to edit it before giving it to your child's teacher).

This might be a good opportunity to bring up any special education needs your child may have as well. Also, since their are some long term complications associated with galactosemia, you may want to look into your school systems Early Intervention Program.

Be sure to explain galactosemia to your child's daycare provider immediately. Emphasize the restricted diet. You may find it useful to type a page about galactosemia so he/she may refer to it, but keep it simple and clear. Some parents decide to provide their child's snack/lunch. Depending on the provider and/or circumstances, you may find it possible to teach your child's daycare provider enough about the diet to feel confident enough to rely on them to feed your child.

Be sure to ask your child's doctor to check his PDR (Physician's Desk Reference) for the prescription ingredient listing before he prescribes something for your child. You may find that you know more about what ingredients are ok for your child, so ask to see the PDR to read the ingredient list for the drug, if you need to. Also, double check at the pharmacy for the same information or call the drug company to be sure that there are no ingredients that your child cannot have. Enlist the help of your child's specialist (e.g. Geneticist) if you need it.

Some states require insurance companies to pay for formula when it is medically necessary. Other states do not have this law. You can check first with your insurance company and second with your state. If there is such a law in your state, and your medical insurance still refuses to provide the coverage, contact the appropriate agency in your state to ask for help, or you could try writing to your congressman or senator for help. Be aware that some type of medical insurances are not necessarily covered by these laws. (Example: an HMO might have to provide formula coverage, but a "self-insured group" may not). It can get complicated. Save all of your formula receipts in case you need them.

Some parents have purchased a Medic Alert Bracelet for their child to wear everyday. The bracelets can read " Galactosemia - No Dairy" or "Galactosemia - Lactose free diet" or any other message you feel is appropriate. If you are interested in obtaining such a bracelet contact Medic Alert at 1.800.432.5378

Where do I begin if I believe my child needs special education services?

Begin by familiarizing yourself with the federal law known as Individuals with Disabilities Education Act (IDEA) This law (Public Law 102-119) guarantees a free appropriate public education to children with disabilities.

Services to very young children are covered under IDEA. Through Part H, The Program for Infants and Toddlers with Disabilities, states may make early intervention services available to eligible infants and toddlers (birth through two years). Under the IDEA, states must provide special education and related services to eligible preschool children (ages 3- 5).

For information about early intervention and preschool programs, contact the National Information Center for Children and Youth with Disabilities (NICHCY) for a copy of "Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities: A Parent's Guide".

NICHCY
P.O.Boz 1492
Washington DC 20013
(800)695-0285 / (202)884-8200
or visit their web site at http://www.nichcy.org/

The next step in obtaining special education services is to arrange for your child to receive an evaluation. The public schools are required to conduct this evaluation of your child at no cost to you.

Information gathered from the evaluation procedures will be used to determine whether or not your child is eligible for special education and related services. If your child is found to be eligible, the evaluation results will form the basis for developing your child's Individualized Education Program (IEP). An IEP is a written statement of the educational program designed to meet a child's special needs.

Below is a list of links that you may find helpful:

Council for Exceptional Children (CEC)
Federation for Children with Special Needs
National Parent Network on Disabilities (NPND)
Technical Assistance for Parents Programs (TAPP)

Prenatal testing for galactosemia is available for couples who want to know if another child will have galactosemia. Although there is no conclusive evidence that babies born of mothers who restricted their diet during pregnancy have a better outcome, many women do restrict their diets if they know, or suspect, that they are carrying a child who has galactosemia. Galactose - 1- Phosphate levels may prove lower in a newborn with classic galactosemia whose mother restricted her diet during pregnancy than for a newborn baby born to a mother who did not restrict her diet. Very little is really known about this. Before making this decision, the couple should discuss this idea with the woman's doctor, and perhaps a doctor who specializes in metabolic disorders (such as a geneticist). Of course, it is still vital for a pregnant woman to maintain good nutrition

Given how important diet is to a person with galactosemia, it is probably wise to find a nutritionist or dietician. Some states provide a nutritionist free of charge to any person who has a metabolic condition such as galactosemia. Unfortunately, because classic galactosemia is so rare, it may be difficult to find a nutritionist who has much experience in treating a person with galactosemia. Ask your nutritionist if he/she has had any other experience in treating/advising other galactosemic patients. If your nutritionist has limited or no experience with galactosemia and you are unable to find some one with more experience, then find out what resources she has available to her so that you can be sure the information you are receiving is the most recent and accurate.

Blood tests for galactosemic patients are necessary to monitor Galactose 1 Phosphate (Gal 1 P) levels. The target range is < 4 mg/ 100 ml RBC. (Please note: other clinics may use a different scale - ask your doctor about your child's "target" range.)

These blood tests are a general indicator of diet compliance for a patient. Some patients still have trouble maintaining target ranges despite adherence to a very strict diet. Also, Gal 1 P levels may take some time to come down and stabilize in the newborn period, especially for those children who were given breast milk or milk-based formula prior to diagnosis.

Some parents use EMLA cream to reduce the discomfort of the blood drawing process for their children. Applied approximately one hour prior to the blood draw, EMLA cream numbs the site where the needle will be inserted. Ask your clinic about this.

Unfortunately, because there is no national "standard of care" for monitoring galactosemic children, different doctors/clinics may have different recommendations on frequency of blood tests for a galactosemic patient. At the PGC conference in Austin, TX (Aug. 1997), it was recommended by one doctor that a galactosemic patient should have his/her blood tested as follows:

Others may recommend more monitoring, perhaps every six months until age 6 or adolescence. There is no "universal" answer. As with most things, it is really up to you and your child's doctor.

Some galactosemic patients also have their urinary Galactitol levels checked on a regular basis as well. It is thought that testing urine galactitol levels may be another good, and less invasive, way to measure diet compliance. There are only a few places that test urine galactitol levels. Ask your own doctor for his/her opinion on the usefulness of this test and how to get it. (The target range for urinary galactitol for a galactosemic patient: 100 - 350 umol/mmol creatinine)