I am not sure what to do. We are having an endoscopy next week because the dr is worried that A has esphogitus and that prevacid is not doing its job. I really dont think we need to do this test , because I have heard there is not much that can be done for esphogitus except a PPI anyway. So why not just switch now if thats what will happen anyway and spare her an invasive procedure? Isnt that a possibility? Also she has gone back down to 10lbs 5 oz and they are asking me to seriously consider a NJ tube, they want to place it next week right after her test. If the problem is she is puking every thing back up, a NJ tube wont really fix that will it? Im sure I could prob get more than the 16oz a day shes taking now in her with a tube but Im not really convinced it will solve the weight problem. They are also talking tube because she had a chest xray and she is having some aspiration problems (thus all the pneumonias shes had) Arnt there alternatives for that problem as well besides the tube??? Sorry I am long winded I just dont want to have to do the tube thing but its looking like the docs are convinced its the only way to get the weight on her....Its just hard for me to think she needs it, she has been pretty happy lately even though she has been sick all the time, hitting all her milestones, if she didnt puke every 15 min you wouldnt know there was anything wrong with her. I know she is losing weight and that she needs to be keeping more down, but it doesnt seem to bother her.......it amazes me a kid can be almost starving and not know they should eat

it amazes me a kid can be almost starving and not know they should eat
Yes Amy. Such is my life with Evan. Since you're concerned about the endoscopy, can you ask the doctor to let you try some other meds. first? Sorry I can't help you with your tube-related questions, as we somehow were able to manage missing out on that. In some ways, it payed off having Evan undiagnosed for the first 19 months of his life, I guess, as that was never suggested.

Good luck with your upcoming decisions!

((((HUGS))) to you both!! I've been there, really I have. Shae was also one to puke every 15 minutes or so at her worst. It was AWFUL and it really bothered her, she choked, gagged, retched, and choked more, all the while screaming with every breath she could manage.

Just some thoughts on the tube prospect for you. Is it an NJ or an NG that they are planning to do?? The NG will not help with the vomiting, and it may even make it increase some, if it's forcing her to have more food in her stomach than normal. The NJ will most likely help the vomiting quite a bit b/c it is fed through the stomach and into the jejunum, which is the second part of the small bowel. It then leaves her stomach empty, with the exception of it's normal fluids, acids, etc. The NJ, and eventually, the J-tube were the best things we ever did for Shae.

Unfortunately, as you may have noticed with this condition there is no perfect solution and when opting for an NJ tube you are pretty much kissing oral feeding goodbye for awhile. The problem is that they develop even stronger oral and food aversions from the bad associations they make between the tube and their mouth and that general area of the face. Another problem is that the jejunum can not handle the same volume of food that the stomach can so they need to be on continuous slow drip feeds for many hours a day to get the calories they need. This can further inhibit teaching them about appetite and how to know they are hungry b/c they never get the sensation of being hungry.

Anyway, just wanted to offer a little info. Even given the fact that we totally gave up oral feeds for Shae's NJ and J-tubes, it was so worth it to me. It has made her reflux soooo much more manageable. It is a big decision and when we were faced with the decision about the tube, it was the hardest thing in the world to accept. I hated it!

Also, I don't usually like to plug my book in my posts but am just wondering if you have read it? I think that it might be particularly helpful for you since you are facing the same decisions about tube feeding that we were. I go into detail about the different tube feedings we did with her, how they helped or didn't help, how I was feeling about it all, through it all and how we made the decisions to go ahead with the tube feeding.

Hope that helps some! Good luck!!

Thanks Roni, I have ordered your book I just havnt got it yet. I am really looking forward to reading it, I am hoping that it will help answer some of my questions.

It is a NJ tube they are talking about, they said the same as you that a NG would not help with the puking, and may not help with the aspiration either. (you really should have some kind of degree in this by now :wink: )

As little as Alexys eats right now, this may sound horrible but I'm not really overly concerned about abandoning oral feeds right now. Don't get me wrong I am worried about it, it has just come to a point that all I want is for her to start gaining weight and stop being sick all the time. If a tube will help with that then I am willing to make sacrifices to get there.
It just really makes me sick inside to think that this is what we will have to go through just to make sure she doesnt starve to death. And I wonder if we arnt missing some other way to do it.

I guess I will have to make the decision soon though, she is heading right back to her birth weight and she is 5 months old. I am starting to get very scared with the weight loss. The puking has really gotten worse the past month or so and as selfish as it may seem I really dont know how much more puke I can take. :oops: Ok sorry I had to get a little venting thrown in there too :? Also one more question, how long can an NJ tube stay in? Thank you for the info and support.

Hi Amy -- Sorry about getting your name wrong the other night. :oops: I just got caught up on this post, and Roni offers all kinds of great info. Obviously, she's tried lots more options than we have, but having been through NG tube feedings, I wanted to throw out a few more things we've learned.

We've been told the tube, simply by passing down the throat, can eventually cause that area to sort of "numb" so the child is not longer irritated by it. This may be why Daniel gagged on solids so much. We suspect he got food in that numbed spot and sort of lost track of it. I also mentioned briefly the other night at the chat that simply all the negative activity around D's mouth (putting the tube in, constantly retaping it, wiping the runny nose it causes) just made him more orally defensive. We've had a few people tell us a child should never use an NG more than six weeks. (Wish I'd known that before using it for months on end.)

Good luck in your decisions. Daniel never aspirated, but I think you're on the right track in thinking there must be something else that can be done for that. And maybe your could supplement the little Alexys eats with extra nutrients and calories until you get her puking worked out. (Or do extra cals make her vomit more?) The main thing is just to keep her hydrated.

Take care!

Becky its really ok about the name thing....there are so many people on here I get alot of people confused :oops:

They have had us add a few different things to her bottles for extra calories but for some reason it makes it worse no matter what we try. I had asked the ped about maybe switching formulas around again, we had tried them all after I stopped nursing and she seemed to do best with the isomil so we just stuck with it, but my thinking is maybe now that she is older she could tolerate something else better. His view was we have already tried that and to try it again would be wasting time. I'm thinking I might just do it on my own this weekend but with all the formulas out there I dont even know where to start.

They had us thickening her bottles to help with the aspiration, cereal didnt work so they had us try baby food mixed with the formula and that really did work for awhile when she was keeping solids down, but now they come back up to and she is refusing most food. I really dont know , I am getting a second opinion and going to a diff GI (we only saw this last one once and he is all about tube is our only option) so we will see what this one has to say. I guess if she has to have it then we will do what we had to. Sorry this is so long winded I think I am just thinking too much out loud :shock:

Any type of nasal tube is only temporary. I'm not sure that I've heard of any particular magic number as being a specific period of time that is acceptable though. I think that's another thing that just depends on the doctor involved. Shae had hers for around nine months, although admittedly they wanted to do the Jejunostomy a few months before we were prepared to approve it. They do need to be changed monthly, to remove the old one and insert a fresh one.

I have alwyas been told they can irritate and damage the throat, nasal passages and esophagus and I can totally see that happening. Shae's little face would get red, raw, broken and sore from the tape, tube, and access wetness (it always made her nose run). So if it was doing that to her face, it's understandable that it could possible damage their throat and esophagus as well, particularly if it needed to be replaced frequently.

Hope that helps, though I guess it really doesn't, sorry. :( It's a big decision and sometimes it feels so hard to know what the best thing to do for your child really is. Hopefully in reading the book you will at least feel some comfort and validation in learning how we managed and that you are so totally not alone in everything you are thinking, feeling, and asking.

But the good thing about trying an NJ tube is that it IS so temporary. If it not making Alexys better (or, gulp, making thing worse) you just pull it out and go back to what you were doing. And maybe it'll give you some clue about a more permanent solution to her problems.

Just trying to come up with something positive! :wink:

Your right, I am trying to see it just as short term. WHatever it takes to get her healthier. I am trying to stay positive its just hard sometimes

I am trying to stay positive its just hard sometimes
(((HUGS))) Amy! We all go through that to some extent. It's hard to stay positive when they're vomiting all the time and you aren't getting much sleep, or when there are huge developmental delays. Keep hanging in there!

Please keep us posted on the test results and follow-up treatment. Katerina had and endsocopy and it was "relatively" easy.