Posted By Posting
Dec 20, 2004
Susie
Post-fundo trouble eating after successful fundo
My two year old had a very successful fundo done on 9/1/04. We aren't regretting it. The problems we are experiencing are frustrating, but my daughter is another child, very happy with such a pleasant personality. She has had two surgeries since then (9/27 and 12/9) to remove food from a blocked esophagus. After each surgery, they did an esophogram that showed that the fundo is good, not too tight and that liquid can pass. The problem is my daughter. She is having a hard time eating. The tight/stuck feeling we think is hard for her to adjust to. We just got her onto some solids in early December when food got stuck again. The surgeon said he wouldn't want to consider loosening the fundo since it successfully controls her reflux. The ped GI fears that maybe the perastalsis isn't there (I'm not sure if that is the right word). He is afraid that the ability to move food down the esopagus through the fundo isn't there. There is a medicine for that he said, but it can make a child shocky and would have to be titrated just right, not a great option from what I understand. He's not convinced of this, but we discussed it as a possibility. We are just going to take the introduction to food very slowly again. It took us from 9/27 to 12/1 to get her on some solids, but we had to give her one bite at a time and cut things as small as a pencil eraser. We are grateful for her g-tube. She receives 10 hours of continuous feeds at night. We were down to 6 hours before this last blockage, but back to 10 since she is on only liquids once again. Have others experienced this long, difficult transition back to food? She wants to eat, doesn't fear food, but has a lot of difficulty. Any helpful advice or words of wisdom/experience? (She's dairy free and has pre-fundo aversions to many different foods too which limits the variety of foods we can feed her.) Thanks.
Dec 22, 2004
Christina
We had the same problems. Jamie (our son ) had a very difficult transistion back to food. We had to even consider a feeding tube. I was at my wits end and finally came in contact with a manual therapistPhysical therapist who specializes in Craniosacral/manual therapy) who stimulated the Vagas nerve to stimulate swallowing. We saw the therapist 2-3x per week and then 1-2 x per week. Just yesterday was our last appt. We were formally discharged. It took almost a year and he is now eating popcorn, bugles, etc. I was so grateful to find someone to help, as the surgeons suggested this could be a permanant situation. Please feel free to contact me if you have any ??>? Christina @ cmc@aol.com
Dec 22, 2004
Susie
Thank you Christina
Thank you for you post. It's very encouraging. It's so frustrating, but I know we did the right thing. I will check into it.
Check with your
doctor first!