|May 18, 2011|
One year old, losing weight, won't eatMy son is on neocate chocolate and zegerid. He's been terrible to feed since about 3 months. But...a few times he's gotten better, and around 12 months we thought we had put it all behind us. He is still on meds but the 24/7 vomiting stopped and he started drinking his bottle and even a little food. Now he is 14 months, he's down to 8-12 ounces a day. He's fussy because he's hungry but won't drink more than 2 ounces at a time. He won't drink juice or any other thing. He eats maybe a bite or two at meals, and he's lost a pound in 2 weeks, half a pound in the last 4 days. He's on 30/cal per ounce neocate.
I really need some help. I'd like to avoid a tube. We've come so far without the looming g-tube and now we're back to this. I don't know what to do.
|May 19, 2011|
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
|I'm not sure you will avoid a tube much longer. That's alot of weight to lose in a small amount of time. |
What percentiles does he sit at, did he have some weight to lose? Is he dehydrated?
Do you think it's a behavior thing or do you think his reflux is out of control again?
|May 19, 2011|
|Been there done that. This is a hard age because they are already picky. Have u tried flavor packets from neocate and the other option is to add duocal to his bottles/cups. We are on ten scoops a day for failure to thrive. Sounds crazy but another idea is trying salty foods so it makes him thirsty. We still have gtube so dont want to c u go there. Be patient and calm they pick up on that too, i know thats easier said than done it is frustrating but keep your chin up|
|May 22, 2011|
|Thanks for your replies. Its funny you mention the salty food thing. I do it all the time. The only things he likes are veggie sticks and gerber puffs (which are both like no calories but they are salty). It works...the problem is he drinks one ounce and then won't drink again for two or so hours. He's not dehyrdated right now because I've brought dream feeding back to life. We had completely kicked that from maybe 11 months til now. The past few days I've been able to get enough bonus in him to keep the wet diapers coming.
We've tried vanilla elecare, chocolate neocate, and neocate fruit punch. In your question about whether its behavioral or reflux....I really think his reflux is a lot better. He sleeps much better at night, and he used to vomit 24/7 like whole feeds, but he hasn't done that in maybe 2 or 3 months. He's happier too. I mean we still medicate him for it, but his quality of life in terms of that is so much better. It seems to me like it is behavioral....except for the fact that he was eating great for so long, and gaining, and happy- granted the situation had to be consistent- tv and a boppy, and only at home. I have just no idea what would cause this abrupt change in his eating habits and attitudes about food. I'm nervous about a tube too, because he's already so disinterest in food, I feel like it will be so hard to get him off of it. I just have no idea where this is coming from or what is going on. He has a GI appointment this week, but they were so unhelpful during his first year and nothing they did ever helped him out.
Also- we tried him for a second time on periactin over the last few days, and the most he had was 16 oz, lowest 13. how do you have 390 calories in a day on periactin? He's about 21 1/2 pounds now after the weight loss, and I think he's about 31 inches. He had beefed up for him, and I was so happy about it, but now its like he's lost everything he had gained almost.
Has this kind of thing happened for anyone? Where a kid seems to be beating reflux and walking...sleeping, eating, then all of a sudden they don't eat again? If so, did you ever find out the cause?
Thanks for the help guys....|
|May 23, 2011|
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
|Any chance he is getting molars? Those will kill their appetite and really make the reflux flair bad. Much more acid and saliva. We'd end up in the ER for fluids with teething till we got him on caracream. That was strong enough to deal with the extra acid and saliva. |
|Aug 12, 2011|
mctwins - update???Hi mctwins - This sounds EXACTLY like where my 12 1/2 month old is at right now. She is definitely teething (molars and possibly incisors) and has cut out the sleep feeding cold turkey. And so, she is taking in about half of the milk she had previously been drinking and just picking at her food. She probably only drinks about 15-20 ounces a day on a good day. She is starting to lose a bit of weight (she weighs about 20 1/2 ounces and is 31 inches tall). SO STRESSFUL!!! I was wondering how your son is doing now and what you all ended up doing with him. Also, my daughter has been on Periactin for many months now, and we are trying to find out about increasing the dose because it just doesn't seem to have the kick that it used to. I would appreciate hearing how your son is doing now. Thanks.
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