Posted By Posting
Jan 26, 2005
Susie
Good news-progress
One of my GERDlings, my two and a half year old is finally making great strides, after two and a half years of pure hell. She had a fundo done on 9/1/04. She had two surgeries after that to remove food blockages in her esophagus. Each set back made her eating more difficult, making her dependent on g-tube feedings and bottles. She started eating food again this time about 3-4 weeks ago, 6 weeks after the last blockage surgery, but with more ease. Her bites have to be extremely small in size and she has to eat slowly with a drink after each bite to wash it down. She is doing so well, that we are stopping her night time g-tube feedings tonight for the first time since the fundo. I'm so glad. We have to keep an intake log to see what her diet is deficient in since she still has so many food aversions. We will have to supplement some vitamins and minerals, but if all goes well, we may try her on dairy soon too. After two and a half years, I am finally getting a normal toddler. She even rode down the stairs (happily) on a broom last night. I had to laugh! There's hope!
Jan 27, 2005
Raising-Angels
How Wonderful
I am so thrilled to hear your news re; your DD. Maybe, you could ask her Nutritionist or GI about adding Protein Powder to her diet. We have had great success with our son using this product. He has been G tube, J-tube, & TPN dependent in the past. We had a terrible time getting him off of his night time feeds until, we tried the protein. We added it to his juice and drinkable yougurt. Once, he was consuming the protein his weight went up and we were able to discontinue his tube feeds and after 6 months of success were able to have his g-tube removed. We also supplement him with Gummy-Vite (most natural food stores carry them so does Walmart) they have kept his nutrition values up to near perfect levels. It has been a life changing event for him no longer having any medical devices sticking out of him. He is 5 now and it has been almost 6 months now since his gtube was removed. I will pray for your daughters continued eating success. How Wonderful for the both of you !!!!!
Feb 15, 2005
Susie
Thanks-Update-2nd child fundo?
Thanks for the protein powder suggestion. I was totally surprised to learn last week that my dd isn't deficient in protein. I expected her to be since meats are too hard for her now tightened esophagus to take without getting stuck. We also were thrilled to be able to start her on dairy products one week ago, although she won't touch milk. She won't even drink her rice milk unless it is warmed in a bottle. I cut out her bottles in Jan. except one 4 oz. bedtime one, so that's all the milk she gets now. She won't even drink the rice milk warmed in a cup, only a bottle. The nutritionist said that her calories and calcium are low. We are giving her a 1/2 of a multi vitamin and a Tums Easy Dissolve daily. She chews them fine. Surprisingly, she has no problem with dairy products. She seems to eat everything in sight so we are letting her since her calories are low. We have to be careful to get her to slow down since she is scarfing food, but for a child that wouldn't eat before, the lack of pain while eating has turned into a food phenomenon for her and I'm thrilled. Her manners leave a lot to be desired, but... she's two! We are leaving the now unused g-tube button in for a while, because we have already had two esophageal blockages since the 9/1/04 fundo which each put us back to square one of recovery, liquid diet and full g-tube feeds. The nutritionist says if she doesn't lose any weight then she can stay off the g-tube feeds. I don't think we will have the button removed until she is eating without needing mini-sized bites and tons of water with each bite. I wonder how long that will be. The team of doctors wants us to consider a fundo for our 5 1/2 year old. She has had 2.5 years of chronic sinus infections. Her immune levels are low and we are considering IVIG to bring them up. We are awaiting biopsy results, but the md said saw that her trachea is completely scarred from the stomach acid. She's been on maximum dose ppis since her reflux diagnosis at age 3. She has had chronic sinus infections due to the reflux for 2.5 years and is now mostly antibiotic resistant. I can't imagine doing this again! I believe we were very fortunate to have great results from my 2 year old's fundo. The process was long, scary, with lots of set backs. It is such a last resort. I fear that there is little possibility of it turning out this well twice!
Mar 15, 2005
Anonymous
I have two children and both have had fundo's now. It was every bit as scary the second time around but every bit as successful. You can read our story if you haven't already - posted under "Ashley & Kayla" in the My Story section of this web site. Jenni Mackay mackay.gs@bigpond.com.au
Check with your
doctor first!