Our ped is wanting to address Iain's DGE at our next appointment on the 27th. We know he has it as he was diagnosed with it last April via a milk scan, but never has been medicated for it.

He was a prior non-eater, begining solids at 14 months of age. He is still not "an efficient eater" but we are working on that with a behaviour feeding skills team now. He is on zantac and prevacid, zantac being upped to 3 X daily to cover all the breakthrough reflux he still seems to have (but only when he eats which is not lots lately again.) He usually eats only one meal a day, although sometimes he will snack a bit in between. We have been told he does not intake enough and needs to learn to eat more "evenly". It does not ever happen. When he does eat, especially if in any quantity, he will skip at least the next meal and often 2 meals before eating again.

What should I ask or discuss with her? If she reccommends meds, I have decided to try them. Prevacid has been our lifesaver as he eats more now than he ever has, but it is still not enough. I have lurked around and see all the meds, and reglan does scare me, so I am not likely to opt for that.

I guess I am wondering what sort of timeline should we do for any meds? Any tips and pointers from anyone here? As always, I want to be prepared when I go and see her.

Thanks.

I was wondering if you see a peds gi? The reason I ask this is that they are usually much more knowledgeable on gi issue than a regular ped is. My son has severe dge and has been on most of the meds for it. I will tell for him they have never worked and he still has problems with it.


There is a drug out there called periactin which is a food stimulant and used to help kids increase their appetite. I was wondering if your doc has ever mentioned this to you. Alot of docs will use this med along with a motility drug.

I did see that you would rather not use reglan this is a drug you either love or hate. I have anohter son who now has been on it for the last five years with no problems. I do know that every drug they use for motility does have side affects some more than others and that each child reacts differently to them.

I do wish you luck with your appointment and hope that your doc is able to help.


Melanie

Thanks, Melanie. We have a shortage of GIs here and once Iain was scoped we were bounced back to the ped. We would be referred again if he continues to have problems only, so I have to deal with the ped for now.

She has not mentioned periactin by name. Iain is on supplement called nutren jr with fibre and I know I need to increase his appetite, so I shall mention it to her. Telling him that food is good for him does not seem to be doing the job thus far...:confused:

The motility drugs are still a bit of a mystery to me as I see so many helped by reglan and so many who are not. Same with the other meds. I was thinking of erthromycin as it would be low dose from what I can see and the least offensive. Am I right?

It just seems I need to be more proactive than I feel I should be. We knew of the DGE since last April, but maybe they were just waiting to see if his appetite would come on its own. Oh, who knows...:confused:

We tried Erythromycin and Maggie is allergic to it. We were told to give it a week to see if we saw improvement but we didn't make it that far.
I took Reglan while I was pregnant with Maggie not realizing how scary of a drug it can be. I was miserable on it. I felt like I was crawling out of my skin. My hands tremored, my head pounded. It was the worst feeling in the world. I was told it would work pretty much instantly but it was for vomiting.

Do you leave food out for him to snack on all day long? Our peds GI has recommended grazing for Maggie because of her lack of eating and not eating much when she does. I think that, and the prevacid, is what really helped Maggie to start gaining weight.

Leigh, I would ask what the long term plan is, the what nexts and what ifs so you will know what is happening and what will happen. That always helps. We used bethanechol and erythromyicin simultaneously. But, I am not sure if they didn't help because Elis emptying problem was different than everyone else we later found out. So, hopfully, it will help you guys. I would also ask if she knows of a special diet for DGE kids and if she does, share it with us!

Contrary to what our OT and our feeding skills psychologist say I DO let him snack if the mood strikes him. They do not want that at all and insist that he eats at regular mealtimes in order to interpret his hunger signals and learn to eat "efficiently" (how I have come to hate that word!). I take some things they say with a pound of salt as I am just thrilled when he snacks and do not find that he eats so much that it effects his eating anyway. We have tried their suggestion and he just starves himself it seems. It really depends on the day.:confused:

Thanks for the suggestions. I am going to research the meds more and bring up periactin with her. He needs something. I think he will be on this supplement forever otherwise.

I am just worried that the meds will not work for him. (paranoia in advance!) Then what on earth do I do? Feeding skills is supposed to start up again soon, but really it is all about his wanting to eat and feeling hungry and I do not think he does the latter and thus the former suffers.

I will be sure to ask for a diet for DGE sufferers. Quite frankly though I do not know what i would do if I had to restrict food for Iain as I am again just happy for him to eat anything presently.

I hope your visit goes well. Sorry I am late to reply. Sarah had doctor appointments and OT today. Anyway, We tried reglan first but it didn't work. Now we are on erythromycin and it definitely helped. they are given a low dose of erythromycin. It took a few days for her to adjust to it- at first she started vomiting more and seemed alittle uncomfortable but in a few days she improved and started eating more. Recently she has stopped eating again. It seems like the erythromycin is not working as well. We are going to do another emptying scan and if needed try cisaprid or domperidone. I know Janette has experience with domperidone. It is only avaliable in Canada. Hope you find something that works.
karie