Hi all,

Allie is a poor eater and has been for about 5 months now. She's 7 months old and weighs about 15 lbs, 9 oz. That's about 25% or a little less. She has always hung out around 25%. Feeding her is a daily struggle, but somehow we always manage to get around 18 oz in her. She stopped eating last month when she got the flu and a bad cold so we took her to Children's Hospital in Detroit. They gave us the NG tube and sent us home. She was recently diagnosed with severe DGE as well. We are on Reglan and Prevacid - max doses for her weight. The NG makes her miserable and she doesn't take anything orally when it is in, so we have been trying to go without it again.

I can get about 18 oz a day in her orally if I really work at it and do sleep feeds, etc. Her pediatrician said she needs at least 23 oz per day (this is concentrated formula to 27 cals/oz) for growth. When we tube feed her that amount, she gains very quickly - she gained a pound in two weeks. We never got her the calories she apparently needs without the NG tube and she has always maintained a 25% for growth. Are we being too quick to go to a feeding tube here? Am I focusing too much on growth curves and counting calories that I am going to put a feeding tube into a baby who doesn't need it? Some other moms with "normal" babies that I talk to tell me that their kids never took more than 18 oz per day (and they never concentrated their formulas).

Allie is developmentally doing pretty good. She sits up on her own, says mama and said "da" the other night. She is not close to crawling though and I know she should be doing that soon. She hates tummy time so it is hard to teach her to crawl. She is getting strong and good at standing at our coffee table (with a little help).

On the other hand, trying to feed her can sometimes make me just miserable and I think that if we had the G-tube that it would be so much easier. Is it easier? I weigh her almost every day (we bought a scale). Is this wrong? Should I only be weighing her every two weeks, etc.? How much weight should I let her lose before we get this stupid tube? Also, she has not gained at all in 2 weeks, so that is why we're concerned.

Thanks for listening and helping,
Christyn
Allie 9-2-05

You said she has an NG tube now? I think that it sounds like you are doing the right thing. The two points I'd make are 1./ the surgeon wouldn't do it if he didn't think it was a good idea, they don't around sticking G-tubes in kids for no good reason 2./ the longer she has the NG tube, and you fight with feeding time (and are stressed, worried, etc), the worse her oral/feeding aversions are likely going to be. The G-tube will help with that stress and feeding time fight/discomfort. Did they mention to you it's possible the gastronomy could make the reflux a little worse though?

Best of luck, keep us posted!

I'm of no help in this case. Just wanted to say you need to do what is best for Allie. Eliana is 17 months and we jsut started seeing a GI and getting tests. You can read her story in the story section or at her website listed below. Where in MI are you? Sending you hugs and prayers.

I am a little shocked at how different doctors are in their approach to tube feeding. Before I say this I want to preface that I agree with Roni in that the surgeon wouldnt agree to it if he didnt think it was necessary.

Now I want to say that what you described sounds a lot like Gavin. He was growing really well--75th for weight for the first 5 months of his life then gradually started to eat less and less. I lost my milk as a result and started him on formula where it was a stress to get him to eat each and everytime. At 7 months he got sick and stopped eating completely and was hospitalized. While we were there though they did not give him an NG tube (even though by this time his weight fell off the chart) even though hs ped and I both felt he needed one. He was having anywhere from 6-12 oz a day at that time. While we were there for 5 days they had him on IV fluids and after two days of no eating sent an OT to work with us. The day he was discharged he had 17 oz of formula. He continues to do this but now on a good day will have 22 oz. He does have significant DGE (20 percent of formula emptied after 90 minutes) so we accept that what he eats is all that he can take in. Now he has worked himself up to the 7th percentile at almost 1 year old and is holding there okay but no GI has ever considered a feeding tube, but they have recommended a pyloraplasty. We said no thanks so maybe they would have mentioned a gtube if we said yes, so who knows.

Funny how different docs are!

My only red flag that came up is the DGE. Did they do a gastric emptying scan? Gavin did not tolerate concentrated calories due to his DGE. If we give him the normal amount of formula that is recommended for his age it gets puked up. This low amount is all he can keep in and feel fine. If she tolerates the full amount in the NG tube, then she may do fine with the gtube--but with Gavin we found ourselves thankful that we never put a tube in with the full amount of formula because with his level of DGE, it would have been a disaster. Again if she tolerates it on the NG then she should in the gtube but I am just asking.

Thanks for responding.

I think the reason that the GI doc is going to do the G tube is b/c we have been pressing him for it since we were in the hospital. We keep focusing on these stupid numbers of calories that she is supposed to get, and since we have been keeping a food journal since November, 2005, we know that we have never gotten her the calories that the dietician and pediatrician say she should have (nevertheless, she has always hung out around the 25% for weight).

Roni, as far as the NG tube goes, we have put it in and taken it out. She hasn't had it in since Saturday. We realized how awful it made her feeding and so we just decided to take it out. We want to see what her weight gain is with no feeding tube in the next week or so before we decide to go ahead with the surgery. The doc did tell us it could make her reflux worse, but every kid is different.

Carla - boy, Gavin and Allie sound very similar. Allie emptied 13% after 75 minutes. When did you start him on the periactin? That is something I would like to ask about. Yes, we do find that when we give her food through the NG tube, she pukes. Not a lot, but pretty much once per day. When she doesn't have the tube, she does not puke at all. The GI doc said he would put the tube in Allie's stomach and if she did not tolerate it he would go into the small intestine. Apparently, it's not a big deal to go from the G-tube to the J-tube. Your post makes me think we should hold off and unless Allie loses a ton of weight, no feeding tube. That's where I'm leaning today (but it's a good day of eating and yesterday was not).

We are trying Carnation Good Start with the comfort proteins. We started last night and we are not concentrating it at all. She was on Alimentum concentrated to 27 cals. So far, it seems to make a difference but I am not sure. She was eating from the spoon like a champ today and is up to 13 oz already at 1:00 pm. She always does 5 oz after her bath at bedtime so the OT think she has sensory issues as well - this is likely.

Thanks all for your input.

Christyn

I know that the surgeon wouldn't suggest it if he/she didn't think it's necessary, Christyn, but here's the rest of what I'm thinking...

It's certainly a struggle to feed kids who are sick and just don't want to be bothered. Believe me...We spent ages getting Evan to drink and to eat. To be honest, I'm glad sometimes that doctors wouldn't listen and didn't seem to care when Evan's weight dropped to the 3rd %ile and his height was still above the 90th, b/c we were never forced to make the same decision that you need to make. For Evan, tube feeding certainly would have been easier, but I really don't think his feeding and fine motor skills would be as far progressed right now if we had gone that route. Since Allie is doing well other wise, I personally wouldn't want to go that route. Understand, that I'm not in your shoes, and I'm not suggesting that you don't do it, but she seems to be doing fairly well otherwise, and if you can manage her weight gain with a dietitian's help and through supplementing, I'd do that. It's not a good idea to weigh them every day either, as everyone's weight fluctuates anyway. You'll have a better idea of her weight gain and not feel as panicky about it if you weigh her less often too, as hard as that is. Once a month, or even every two weeks if it sets your mind at ease is tonnes. A ped. would say even less than that often.

LOL...It looks like we were both typing at the same time, Christyn. I'm glad you're going to wait and see!

Christyn,
I agree wholeheartedly with Janette. I think she said it perfectly. We would have put a tube in if we were pressed to by a surgeon and GI but looking back I personally am glad we didnt and am glad the GI at the time didnt listen. Gavin is making progress now without ever having one. If she is staying in the 25th percentile, I personally dont know why they would even consider it. At the hospital, we were told that they only consider gtubes when the baby is very far off the chart OR if low on the chart and teetering on and off because they dont have the potential to take in enough due to the inability to suck and swallow ineficiently. They considered Gavin to have the potential because he could suck and swallow. Gavin hasn't taken in the recommended calories for at least 6 months now and has been around the 7th percentile for awhile now, they consider that good because he is holding in the 7th. If she is holding in the 25th--regardless of calories, the docs here consider that good and would not consider it. I dont want to confuse you more, you need to decide what is best for your daughter. If you could go without the NG tube for awhile--I think longer than a week, and see how she does it would help you see if it is clearly needed or not. When I say see how she does though, I wouldnt necessarily look at the calorie intake, as much as I would look at her growth. Our ped recommends weighing Gavin every 2 weeks at her office on the same scale, so that is what we do. Even though he gets about the same amount of oz a day as Allie, he is growing enough to stay in the 7th percentile as he gets older and again they consider it good for now. It is something we evaluate on a biweekly basis.

BTW Gavin only pukes when he has near the recommended amount. If he has the intake he desires we have no puking. The intake he desires is what he is growing on. It is slow but there. I would wonder how the vomiting would increase if the gtube was in and always there always putting in the recomended amount. At that significant of a delay it *could* make her worse. I just remembered they said they would change it to a jtube. So I guess that may remedy it. That is a tough call. However, if it came to that for us I think we would opt for a jtube over a pyloraplasty. Did they bring that surgery up for her?

Here's another perspective:

Looking back, I think the only thing I could've done to improve Daniel's situation is get him a G tube sooner. Unfortunately he wasn't even diagnosed with reflux until he was 10 months old and had been exclusively sleep-eating for five or six months. Of course, if someone had wanted to do a G tube right away, I would have fought it. You never know if something less invasive might work, but in our case, D's eating just got worse and worse. He used an NG tube for up to three months at a time and still no one said he needed a G tube. I spent up to eight hours a day feeding him, only to have him get so upset over it that he'd throw up half a meal. The only way we've made progress is by relaxing (which we were never able to do before the G tube) and letting him go at his own pace.

Hi Christyn,
I fought the gtube for months (6 to be precise). I didn't want to deform her body, put in something medical that seemed permanent, scared of the implications about the length of the illness, scared of the "medicalness" of it, the feelings of failure, beating myself up that I should be able to make her eat better, etc etc. Then when totally exhausted, depressed, physically ill, Larissa's face bleeding from the tape from the ngtube, her weight never really gaiing, but going up a little then down a little, I conceeded.

24 hours after the surgery, she was a going concern, luckily her reflux got better not worse. We still have stomach emptying problems, but I know at the end of the day, that if she hasn't eaten or drunk enough, that I can put in those lifesaving calories and I don't have to have charts anymore, I don't weigh her regularily (only about once every 2 0r 3 weeks or if we are at a doctors appt that requires it). The weight gains have been dramatic, I feed her "real" food through the tube and she sits to eat orally at every meal (picking away). I know her brain is getting the mix of nutrients it needs for growth, she is enjoying eating again, we enjoy each other and I don't feel so drawn out about each oz every day. I can worry about all the other things a parent usually does.

So my thoughts are, and only you know this, does the benefit of no worries of calorie intake outweigh the medical intervention? Once she is eating soundly, then pull the plug and go back to "normalacy". Don't fear the gtube, if things get worse, pull the plug, close the hole and go back to your current pattern, if it gets better, then yeah....enjoy the sunshine and throw away the weight and calorie journals.

Best of luck in this decision....I know it was a heart wrenching one for us to make, but we have not looked back.

Well, we cancelled the surgery. We decided to take out the NG and see how she does on her own w/ the Reglan. She was 16 lbs at the doc's office at 7.5 months, so she was doing a lot better. Since then, she's not a champion eater and I still struggle on some days to feed her, but she's taking in more baby food than ever and actually picked up part of a cooked egg yolk the other day and at it herself. I cried. She does about 18-20 oz of formula per day that is concentrated to 27 cals/oz. The only thing everyone is worried about is her height - she's now 8 months and only 25 1/4 inches long. Apparently, that's about 5%-ile and DH and I are very tall. I'm hoping that she goes through a growth spurt soon!

*keeping fingers crossed that this trend continues, but too scared to post anything in the "success stories" forum just yet*

Thanks everyone for your input.
:blob4:

Sorry I was late to this. We also have been struggling with the Gtube decision. Sarah mainly did sleep feeds for the first 8 months of her life. It was horrible and such a struggle. We then slowly got her off sleep feeds and now she eats awake which is such an improvement. We are really struggling with solids but her bottle has improved although she will only take it if she is watching baby einstein. Sometimes like you I think a G tube would make life so much easier- we could take her out places and not worry about her eating. But we have decided to wait and see how she does. Sarah also goes periods of time without weight gain. This past month she didn;t gain any weight- she is still 16 pounds 1 ounce which is now below the 3rd percentile but she has some fat on her so the GI doc isn't too concerned yet. I think we will only get the tube if she doesn't gain weight for a few months. I think if Allie is staying at the 25th percentile then that is great! Sarah usually only takes 19-24oz a day and basically no soilds. So I think it is best to look at how she is eating and if she is able to maintain herself even though it is not the "recommended" daily calories. Especially if she starts eating solids well then hopefully she won't need to drink as many ounces.
ALso Sarah didn't crawl until she was nine months old. The GI doc said as long as she is progressing and happy then it is ok for her to have bad weight gain every so often.

Oh and I forgot to mention- from my reading of medical journals and what the Gi doc said you can't really overdose on PPIs. I recently read an article in pediatric annals that a common mistake is under medicating with PPIs. I also emailed one of the sites given here for PPI dosing and they replied saying that Srah should be on 15mg in am and 15mg in pm since her reflux is still not under control and she only weighs 16 pounds.
This is the email address info@marci-kids.com. Someone on this web site had listed marci kids as a good web site for PPI dosing.
So anyway maybe she need a higher does of the PPI

I am glad that you didnt need to do it yet. I am seeing as Gavin gets older, he is getting better. He is in the 10th now and still has yet to take in the daily requirements. The 25th is our ped's goal for him but we are satisfied with the 10th. So if she is there already, I am so happy for her and you--I hope it keeps up!

Hi, I wouIld just like to say that I have often thought about the need of a tube for my son, his weight took a large decline towards 10% and was dropping so I started worrying about the what if's.

Looking back it was a very hard time with us for his feeding, and the worry over whether or not he was eating was hard. But I do know this I did everything in my power to avaid a tube, it gave me a lot of angst trying to feed him BUT in the long run I am happy. He is now just under the 25% and steady. I was going to add that during the age 7-14 months Parker didn't gain any weight (even though he was growing taller) So I wouldn't put the decision on that she hasn't gained in a little while.

I think that seeing as she is at the 25% and has been for a while I would wait and see on the tube and in the meantime do anythingyou can to avoid it.

Firstly increase or change reflux meds or DGE meds, work out how she likes to feed, supplement the 18ozs you do get in to make them more calorific, (18oz to me is a dream amount we had months of him taking 6-7oz a day!) If she will eat food do anything to get it in, make it more cals by adding oils or salt and sugar to make it taste better.

Seeing as she is still at 25% I would try this a little while and see how she goes. Now on better meds my son is eating a lot better, food isn't a constant battle, I still get anxiety over getting enough in, but he isn't worried about it.

This must be an extremely hard decision, please let us know how it goes.

I am glad that you didnt need to do it yet. I am seeing as Gavin gets older, he is getting better. He is in the 10th now and still has yet to take in the daily requirements. The 25th is our ped's goal for him but we are satisfied with the 10th. So if she is there already, I am so happy for her and you--I hope it keeps up!
I too am glad you are deciding to ride it out. Like with Carla's Gavin, we watched Evan's weight drop to the 3rd-5th %iles while his height remained above the 97th %ile. Major skin and bones. He is doing much better now, and has been consistently at the 90th %ile for weight for the past year now. It was a long battle of feeding therapy, force feeding, and tonnes of supplementation, but we finally got him there. We're still supplementing a bit, but I just wanted to let you know that there is hope that things will get better, just like Carla said.