Anyone have a DG or classic child with bone or muscle problems? My son has been dealing with a sports related injury that isn't healing, and I'm wondering if it is possible that there is a connection, but the specialist doesn't have experience with Galactosemia.
Ann Arbor, MI
Hi. I am very thankful I found your page. My daughter is 3 weeks old. At first we were told maybe she was only a carrier but to stop breastfeeding in case. Now at our 2 week check up we were told she was indeed Duarte variant. When I ask if I can breastfeed again, cause I had been pumping and storing, they said we think you can. You think? Shouldn't they know? So I went back to breastfeeding. She had no symptoms so all seemed okay. But my gut told me I needed to get a second opinion. So I went to a specialist almost 3 hours away. The specialist looked at me like I was a monster and said "Why would you be breastfeeding a DG baby?". I was told all the new info on how my child can have speech, sensory, and other issues later in life. I felt terrible. Why did the first doctor not tell me that. But my baby seems fine. The specialist said many times you don't see the damage being done to their insides especially the liver and brain. Now I feel like a terrible parent. Why do these doctors not all know this already. We trust these doctors to have information on all these childhood diseases. Just a shame. I hope this post helps other moms earlier instead of later.
My child is now almost 8 years old. He is DG and does well but does have some ticks. For example if he gets nervous, is trying something new, doesn't get enough sleep, if the area is too loud, or if he is sick he will get nervous ticks. These range from sucking on his shirt sleeve, opening his mouth wide over and over, biting his nails, pulling at his clothes, and repeating task. These can range from a day to a week. We tried the brushing therapy approach and it has helped. But what helps the most is keeping his life organized, explaining everything in great detail before we do things, and participating in activities he does so he sees me there and feels safe. We have seen a few doctors about it. At one time they said it was slight autism but the test showed that was not true but instead sensory. We participated in a DG research online project and I found other moms just like me. So if your child is going thru this don't worry it is manageable. But does take organization on the mom's part but I don't mind. Just spread this to other moms please.
Hello my grand daughter is now 4 was old. At three days old we were called to rush to the childrens Hosp to do more blood test after a failed Newborn screening and they practically tortured this little one to get blood, the mislabeled, could not find vain and then mixed up test and order the wrong ones at the hosp. Then we were refereed to a Metabolic Specialist at another major children's hosp in our city and when we tried to get an appointment they said we are not accepting new patients. We were so confused..we had her regular peds followup after birth and was told she definitely had Galactosemia but don't know which one. Was refereed back to the Children's hosp with the specialist but again were told yes we have her blood and records and referee but are not taking new patients right now. So we were told to call around and all major children's hosp with a genetics specialist are not accepting new patients....what are we supposed to do here???I even called to A major university a couple from us and had her records sent and was told they will let us know if they will take the case but didn't here back...so confused...this is rare and only a few docs even have the know how and the one in our city won't take her.....at a loss...
Help I am a new mom and very overwhelmed. Our ped doctor said my child maybe duarte or maybe classic. But he doesn't know what test to order to find out. HOW IS THIS POSSIBLE? So I researched online and now I am worried. I requested a second appointment I ask about what to do next. I was told to continue breastfeeding with my DG daughter that I had nothing to worry about. But in the last few weeks I have spoke to other moms online that have told me awful stories so I immediately stopped breastfeeding. When I called the doctor office back the nurse said he wouldn't see me again and to find another doctor. At this point I don't know what to do. Why won't he see me anymore? Cause I brought up serious questions he doesn't know about? Or cause my child has duarte? So I called around and this time I want to be prepared so I ask each time do you have any duarte patients, not one ped doctor in my area and even within the 200 mile insurance radius has either. Very frustrated.
Wichita Falls, TX
My daughter is classic and we were told she could not get cataracts. But I am seeing other moms on support pages post that it is possible. At the beginning we didn't follow a diet now I am worried. I have some moms saying its too late you can't prevent cataracts, some saying you check eyes once a yr, and some saying you check eyes every 3 yrs. Which one is the correct one? This whole disease is so confusing and has so many components to check on it is very frustrating.
My baby was was yellow at 8 days old. The doctors (in Pakinstan) said to change his blood so we gave him 0 negative blood. I breastfed him and at 40 days old his belly got very big. The doctors say it is galactosemia but he will be okay. We did an ultrasound and it shows water in his belly. He now only has one kidney. They do not know about galactosemia here. We did testing in India. His blood is B positive. What can I do I am worried. He is now 4 years old but has speech problems.
When she was a few weeks she had tremors, but they went away now. She was exclusively breastfeed for six weeks during the tremor time.
Yes we've been on soy for 7 weeks. She just turned 8 weeks. Genetics told me i could back to regular formula if i wanted but would need testing 2 weeks after change. However from my research I've read that's not a good idea but I've also read no restricted diet. I'm so confused! She was on formula the first week, then she was on half soy half breastmilk for the next 4 weeks, then only soy. But she is experiencing tremors.
I was told at 1 year of age I didn't have to restrict. My child is now 7 and we have had two eye specialist say that early glaucoma is starting. I am heart broken. I would of restricted, the effort wasn't too hard for me. We need to be told the truth early on so we can make the right decision. When I confronted my doctor at the child's birth the doctor said he thought it was best to not restrict any foods. When I asked if he has ever treated another duarte child he said no. =( Then why did he recommend something that has caused such grave damage to my child????
When asked what formula to use? Soy formula. I cried as I dumped my breast milk down the drain. It was a hard pill to swallow. Even DG can have delays and gate issues. Everyone will tell u different But go with your gut
I have heard to not give my child squash but it is his favorite. He has had milk before, like cheese its and it doesn't do anything so don't you think I can not restrict? My child is bored with regular baby foods and I would like to give him ice cream. Isn't that okay?
I live in a shelter and the shelter will only give my child canned pears and peaches. We have honey bagels alot but I know honey is bad for babies so I leave during breakfast and try to find her rice crackers. The canned fruit is giving her a terrible diaper rash. I know that Destin is what the shelter gave us but it is white so it must have milk in it so she can't have it. The shelter isn't helping us at all and I don't know how long I will be here.
Kansas City, Missiouri
My child has been diagnosed with sepsis. The first doctor we saw said the newborn screening test said my child probably had DG. So we went to another specialist that doctor took more bloodwork, we have been waiting 4 months for the results. In the meantime my child has gotten very sick. We are currently in the hospital trying to treat the sepsis. They have ruled out that it is not the bacteria type of EColi that comes from stools. So did the breastmilk cause this? I followed my doctors' suggestion he said I could breastfeed but now I wonder if I made the right decision.
My son is very small for his age. He is on soy but I wonder about Nutramigen Junior. Is that a good choice? I loved using Nutramigen when he was a baby but when he turned 1 the doctor said it was no longer needed and to do Soy. What is best?
He has sever acid reflux and colic. He has been on breastMilk simalac advanced simalac soy gerber soy progestimil prosobee and now nutramigen they can find something that works for the acid reflux and him spitting it all up. The progestimil worked for a while but his acid got so bad he couldn't use it any more and the dr is starting to worry he dropped from the 90th percentile to the 72nd percentile in 3 months
Baton Rouge, Louisiana
My Dr says it's not related by I was wondering if anyone with DG or CG kids is lactose intolerant themselves. I am and I take lactaid pills to help break down dairy. I took them while pregnant which I was told was fine but I wonder if it hurt or helped. I know it's based on genes but I still wonder if anyone else is lactose intolerant and if there is in fact some kind of link that just hasn't been connected yet.
Hey everyone! I was wondering (more from people with school aged DG children or someone that is DG themselves) what the specific types of speech issues are (if any) they have encountered. My son recently turned 3. She has a large vocabulary for his age. He went through a short phase with a stutter, which all of my 4 children did between 1-2 years. But now, in the past 6 months, the stutter is gone but he draws out the beginning sounds of words. It's like he gets stuck on the word and has trouble getting past the first sound. Some days it is worse than others and some days he doesn't do it at all. Anyone else experience this? Or have tips on working with him on it?
Our primary care provider did food tolerance testing on him a while ago and of course dairy was an interolerence, and so was gluten along with a pretty long list of other things. We noticed when he sneaks more gluten in his diet (at the sitter or with grandparents) his speech is more delayed. Any other DG kiddos with a long list of food interolences? Thanks!
A little sad after today's appointment with Dr. John. Timmy has delays that he thinks may be due to other Genetic issues. I think it is the Duarte Galactocemia because I have heard echoes of many other parents. The specialist thinks it is something else. What now?
We have seen Dr. John at CHOP. I heard he was good. But when I told him about all the problems the moms were having on the DG Facebook page he just shut me down saying DG kids have no problems! My son has developed tremors I ask if it was related and he said no. But I told him another mom online said her DG child has tremors too so I think it is related. I drove two hours to see Dr. John and it was a waste. I even brought proof of what I was seeing online and he refused to look at it. He said he did a study and found DG kids have no problems. He told me to not restrict and to come back in 6 months to recheck. I don't think I will be back. I want a doctor willing to listen. I don't think all these issues my child is having is not related to DG especially when I have met and spoke to other moms having the same thing. Anyone else have a bad experience with him?
These are true stories and messages from moms I have received since I began this journey researching DG in 2008. Sadly I didn't start foldering the messages til 2012 but please see that many are in the same boat as you-confused and with many questions. The post is not to answer these questions specifically but to post to record the issues and questions for the public.