Hey everyone, Casen is currently 18 months old and weighs 14.9 lbs. he is strictly g-tube fed and will not eat by mouth. He doesn’t seem to be getting bigger, he is still on infamil for preemies 5 ounces every 3 hours. If anyone has any suggestions on how to get him food besides the formula I would apprieate it,I would be grateful for any suggestions. Thank you so much…
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Hi there. Have you tried a more caloric blend of food? We had a long journey to the food Elsa gets now. (Like Casen, Elsa is entirely G-tube fed.) Her first food was Infamil, then Infamil blended more densely, then at 18 months of age, she transitioned to Pediasure. At age 3, we moved to Peptamen Jr., and at 3.5 years, to Peptamen Jr. 1.5. Our nutritionist through Early Intervention (and now our local hospital) helped us with each transition (total volume/total feeds). Elsa’s weight boomed when we got her on Pediasure at 18 months. The reflux was bad with Pediasure, but even still, the weight gain was awesome. Today she gets 9 ounces of Peptamen Jr. 1.5 during the day (at 7 a.m., noon and 6 p.m.), and 9 ounces at night while she sleeps. We do her night time feeds VERY slowly, over 8 hours (the maximum recommended bag-hanging time for medical food), to prevent reflux in her sleep. We also have to be diligent about getting her LOTS of water during the day, to stave off constipation. Hope that helps!!
Thank you so much.. Casen is currently waiting to see the nutritionist , he is due to see her for the first time dec.29th. Maybe I can get him switched and he will gain some weight.:-) Elsa is just adorable!!
Keep us posted! Just take your time with the transition and try not to give up. You may have a bad day, where he refluxes a lot or gets super constipated. Just back it up a little bit and try again, but more slowly. We would bump up Elsa’s volume/density every three days during a transition, to allow her body to catch up. It’s so worth it!
Our Quinn still takes formula (Similac PM 60 40) at almost 4 years old. She is very small – right under 16 lbs. We are working hard on food, but having a hard time getting her off the bottle. We do add Duo-Cal for extra calories. I noticed your cutie is wearing a UK sleeper in a previous pic. Do you all live in KY? We are in Frankfort!
Yes we are in Louisville .. We would love to meet up with another family. I have so many questions about Casens condition but none of his doctors have ever seen a child with wolf hirschhorn syndrome. You wouldn’t happen to be related to a speech therapist at norton suburban would you? I remember when I had Casen she had told me that her cousin was in kentucky and had a child with wolf hirschhorn. It’s so rare there are not many people to talk to and very limited information.