DIET FOR DUARTE
Birth til age 2
-Be aware of changes
Yellow and jaundice is a concern because it will show you liver issues not seen.
-Stop breastfeeding and do not provide any dairy til age 2.
-Find a soy based formula or formula for DG or Galactosemia children. A common one used is Nutramigen.
-Join a support page
-Ask your local hospital for contact information on other parents with DG children in the area
-Look into attending the Parents of Galactosemia Conference yearly for new updates.
-Find out if your county has a Babies Can't Wait Program or if the Health Dept has resources. (Both of these will help you cover formula needs, test for learning disabilities when time, and provide needed resources)
Can I breastfeed?
This is one of the times that breastfeeding may not best. This is a hard concept for many new moms to understand. Many babies will experience vomiting upon the first breastfeeding session or milk based bottle. At that time specialized formula is used (usually Nutramigen, Elecare, or Soy is most DG moms' first choice). Many moms will find old galactosemia information online to stick by. The most common problem when a child is diagnosed is getting the parents in the "I can handle this" mindset. Moms will try to breastfeed 50%, or once a day thinking it will be okay. But this approach is not a common practice now. If you have found a website that encourages that please look at the website date. If you let us know we will contact the site directly to ask them to update the site with the newest and safest information. But yes in the past many doctors would say you could breastfeed DG babies but that stance changed in 2004.
My DG child was breastfeed and supplemented with formula. Two weeks in I knew deep down something was wrong but the doctor and a specialist said to continue. My son began to vomit many times a day but that was the only sign. I insisted on a barium swallow at my doctor's refusal. I am thankful I did because what we had no idea about was that the milk was damaging my son. He had ulcers from his throat to his small intestine. It took six months to heal the ulcers and in the meantime he developed a sensory aversion from the pain in his throat. At age three he was diagnosed with sensory, visual processing and a learning disability. Later I found out the genetic specialist and pedriatrician I was using had little experience with Galactosemia but only suggested I breastfeed because that was the norm cause little research has been done.
http://www.marchofdimes.com/baby/keeping-breastfeeding-safe.aspx When breastfeeding isn't safe (March of Dimes)
https://www.llli.org/llleaderweb/lv/lvaugsep98p78.html "To Breastfeed or Not"
http://thestir.cafemom.com/baby/108659/5_breastfeeding_myths_you_probably "5 Breastfeeding Myths"
Remember your child will not die from breastfeeding but they may die if you continue breastfeeding. The benefits do not out weight the benefits in this one situation. Donate your breastmilk to a women's clinic if you can. But breastfeeding is not required for your child's survive. But their whole life can be effected if you continue against a doctor's wishes. If you have a doctor that recommends you continue doing so, ask them their latest information they have received on it, ask them if they are a member of the Galt Foundation Board, or if they have attended any conferences. It is very important you use a doctor with experience in Galactosemia and a doctor that is willing to look at new research you bring in. If not, find a suitable safe doctor for your child.
Where can I find a doctor with experience in DG?
DG is a rare disease, so remember that with rare diseases it is rare to find a doctor with experience with it. The common type of doctor to see with DG is a metabolic specialist, but remember they are hundreds of types of metabolic disorders so do not assume your doctor has experience with DG. This is where you have to do some research on your own. We are also working on teaming up moms with other moms in your state so you can get advice on specific doctors. You can also contact your state's newborn screening lab for recommendations on metabolic doctors. Look at the doctors' currently researching, speaking at conferences and working with support groups. These are the doctors who are working on learning more about the condition and will be more familiar. **The most common misconception of new galt moms is to assume that their doctor has experience with galt. Please do not assume this! A doctor goes to medical school, then specializes in an area of expertise. Rare diseases affect a small part of the population so continuing ed or being a part of the rare disease community is not always on busy doctor's agendas. That is where you have to take the lead.
When your child is diagnosed you will need to:
-search for support groups online
-Google the condition
-take in the latest information on the condition to the pediatrician doctor appt
-then ask the ped doc to refer you to a metabolic specialist (Google specialist before you go to the visit. Call around and see which metabolic specialist in your area have experience with galactosemia)
-in the meantime, follow the needed diet for your child's condition (many times waiting on a specialist visit your child can get very ill if the diet is not followed)
-sign up for the Galactosemia Conference
-download in Google Play or App Store the Galactosemia Foundation Conference app (it contains a list of all the speakers, notes, and lots of important information)
-If your child is DG, sign up for the Emory Research Study
-Stay informed thru your child's life by following support groups online and check back to this website. As soon as new information comes in we add it.
What is the UK diet?
Because of the internet it has come to light that the UK has done more research at this time on DG than the US. Most in the UK follow the following diet for their DG children:
-no dairy til age 2 (at age 2 the child will develop a few enzymes in their liver to digest whey but there is no exact way to know the amt safely)
-at age 2 introduce only cooked dairy foods
When dairy is cooked to 165 degrees the whey is broken down. So foods like casserole with milk added, mac/cheese, and times when the milk has been heated it is safe
-No cold dairy for life
No ice cream, ranch dressings, milk, yogurt, types of cheeses, etc.
This diet is our best "better safe than sorry" approach.
Will my child be left out in regards to enjoying food? No, thankfully many companies make delicious tofu ice cream and many alternatives. Kroger is one of the best place for DG children to find food resources.
Most moms or dads with DG children feel comfortable with this diet out of the other options. But each family is different.
What is the milk challenge?
Many doctors will suggest taking the milk challenge at age 2. Doing the test before age 2 is usually not recommended by most.
The test includes taking 8 oz of milk per day for a total of 5 to 7 days. Some challenge are less milk or more, it will depend on the doctor or the state challenge test.
From experience on the support page, we have found many have complications. A new stance with parents is to opt out of this test. The complications seen by parents is skin irritation, vomiting, diarrhea, stomach issues, and a few hospitalized for complications. This use to be the norm for docs to suggest the test but we haven't seen that much lately.
Many docs either lack exp with the rare disease itself and order the test, like other unneeded test many sometimes order for more information. But over the last few yrs the number of people who have contacted me say their doctor said it is not needed. As you can imagine if you are restricting to give your child large doses for a week doesn't seem the wisest idea.
From my experience and from the experience of moms on the support page-they opt out of the challenge, and follow the UK diet at age 2. They are the ones having the least amt of issues in the group and seem very happy with the solution.
Taking a test that could or couldn't cause damage to my child isn't something I would recommend. I had one mom ask the doctor before a challenge if this will cause them greater danger or cause later learning disabilities-the doctors answer was "I just ordered it cause most doctors recommend this type of test. At this time I can not say it will cause or will not cause later complications. I can not say it won't damage your child's liver or cause learning disabilities later in life. It is your choice if you want to proceed but I can't be liable".