opionion please

[Nowhere]

Mikenzee is 17 months old and has had a fundo and Gastrostomy, she is on losec zantac and domperadone, and is fed on neocate a she is intolerant to everything, she has two more months to start gaining weight on her continuous G tube feeds or the next step is a transpyloris tube and then a jejenostomy so bypass her tummy altogether, do you know much about them if so is it generally a good idea, i just wanting to get as much info as i can just in case

Also she has protein intolerance (every thing not just dairy and soy) and has malabsorption of carbs including sugar and also fat, do you know of any other kids the same if so did they grow out of any of it or was it for life

thanks in advance
Im at such a loss with al of this

[RISA]

Hi Amy,
Gosh, you are still having problems, but you sound like you're doing an amazing job. I don't know how much help I will be, but I will try.

I don't know a lot about the j-tubes, but the children who do end up having them, really dont seem to have any other choice. Do they have any idea why she isn't putting on weight? Is it because she just can't tolerate a rate that is high enough, even on continuous feeds? What happens with the feeds? Does it cause her to gag/heave? or is it something else? Does she have a small stomach? (I mean smaller than expected after a fundo), or does she not tolerate the feeling of food in her belly?

Is there any way they can increase the kilojoules in her feeds? You've probably tried everything, but my other thought was trying Elecare- which is similar to Neocate- some kids tolerate one better than the other, so maybe she would be able to tolerate a higher dose of Elecare? Just a thought.

Have you joined the fundo/tube feeding group at RISA? I don't know if anyone there has had a jejunostomy, but it might help to ask around too- if they haven't, they may still know of others. One of the bubs there has just had a nj tube inserted, but I dont know if that helps you or not.

As for growing out of the intolerances- some seem to, but others struggle for a lot longer. I wish I could tell you that she will grow out of it, though I do think it's possible. I hope you don't mind, but I will send you a message privately as well,

Glenda

[Nowhere]

thanks for the reply she has tried elecare and doesn't tolerate it, she has a hypersensitive stomach, and gags constantly even and 35 an hour so increasing it is impossible because she then gags More powerfully and ends up puking through her fundo, the reason she doesn't but on weight i think is because we cant increase the feed rate and cant add carbs or fat to her feed as she has malabsorption so she looses weight more, and if we try and up the neocate strength to much she gets constipated with then causes more gagging, its so confusing

I Will check out the tube feeding forums on Risa good idea