Dedicated to our galactosemic children

The GREAT MILK DEBATE


Many parents do not complete the milk challenge at 6 months, 1 year, or 2 years of age. Instead they decide with duarte children to remain on a dairy free diet. The reason is because to complete the milk challenge the child has to be given milk for a specific length of time and then blood drawn. If the test is failed then it has only shown that the child lacked the enzymes to metabolizes the milk given to him/her, therefore what type of damage could the milk have caused? We watch every label of food going into our child and then we give a glass of milk a day for one week (for a 1 yr old, more for an older child) to complete a milk challenge. I did not feel comfortable with this test. After my son was diagnosed I spent months researching extensively and have never quit researching. My overall conclusion is that in the US that we do not have enough research and doctors lack experience with galt patients. In the US you will find conflicting opinions on if it is okay to give breast milk or not. When my son was born he developed small intestine ulcers from the breast milk and milk based formula. I was told by a genetic company to give him breast milk. But after he continued to not thrive they said to stop, they finally admitted they don't have enough research to know for sure but since breast milk is usually always okay for our young they would assume it would be okay. But breast milk is milk and it was not okay. Over the years I have had mothers contact me with questions but many are determined to still breast feed. I do understand the need to bond and for health immunity reasons but in this situation it is not possible and it is life threatening. You may not see the damage done right away  but it can be seen later in life. Classic galactosemia children have learning disabilities, speech issues, and other health issues, But what is being seen is more and more duarte children with slight forms of the same types of health problems. One thought to ponder is that in 2010 I had four mothers contact me with duarte babies that were breastfeeding with health questions. I told them about my research but they insisted on breastfeeding and its benefits. Now all 4 babies have delays, speech issues, and severe reflux. In 2011, they were 5 parents who posted on my FB support page how they were determined to do the milk challenge because they trusted their doctor's opinion. Their children ended up in the hospital that year in the middle of the challenge or right after it related to the challenge. Now what harm has been done long term to their little bodies we will only know later related to speech, neurological, or other types of delays that could of been prevented. There is no magic way of knowing what is going on inside your child's system and no doctor can say 100% they are ready to begin milk so why take the chance cause you can't go back and fix the damage. I love my child too much, ice cream isn't worth it. We will be fine without it. =) Just be better safe than sorry and accept the unknown for the health of your child's eye, brain, liver, and kidneys (all the organs that can be damaged by milk).

I do not want to my child to be like one of those commercials on tv that says "If you breastfeed or gave your child milk and he had duarte galactosemia you need to know your rights. Call the lawyer office of .....". I don't want to be like one of those commercials cause I  can't reverse my child's health and liver. So I have taken the UK's approach to treating duarte patients.......no milk products til the age of 2. Then at the age of 2 when the child's body should have developed some of the enzymes to digest some milk protein  you still only give milk in food that has been cooked. If the food is cooked then the enzymes and whey has been broken down in form. But the child is to never be given cold dairy (sour cream, ice cream, cold cheese, glass of milk, etc.). This is the safest diet for your child.  

 

 

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