What to do when G-tube doesn't help

[schmj4910]

Our son has had his G-tube for over a year. The first 3 months went really well. Then he stopped tolerating the 2 cans he was getting overnight, so we had to cut back to 1.5 cans. He can tolerate that, but hasn't gained anything.
We've tried different things, but I am open to all suggestions! We would really like to keep him eating orally (not 100% tube-fed).
Does anyone else have experience not gaining on the tube? Has anyone tried TPN?

Thanks!

 

[CJPsMom]

Are you doing continuous feeds? Our son wasn't able to tolerate the continuous feeds, so we switched to bolus feeds overnight. He now gets 2 6.3 ounce bolus feeds overnight (he's 20 months).
That helped us, but not sure what your situation is.

 

[MaryamsMommy]

Well first What do the doctors say? why do they think he is nit tollerating it? a motility issue? Is he on Motility meds at all
what is the rate he runs at? And what formula/supplement? all these can have an affect and can be played with to fond something that works. Also u can run the feeds at a slower rate over a longer time to see if that works. If all that is exausted maybe a gjtube can be placed and bypass the stomach all together. My daughter is on and off TPN often. Its a thing of last resort. It has great risks. 1 liver failure or severe damage. 2 infection because ut has to be given through a centeral line picc/port
Karen Mommy to Maryam 12 with CF

 

[Mom2Brinly]

We have had a gtube for about 6 months for my 7yo daughter. She has only gained 6 pounds. We do 2 cans of peptamin jr. continuous feed overnight - we run it for 70 for 550ml. She looks much healthier and eats better during the day but we are not so excited about the slow gain. Our CF clinic suggested we add one benecalorie cup to the 2 cans of peptamin jr. But she has had oily stools because of the extra fat. I think we need to look at different enzymes?? Have you thought of that??

** ALSO DO YOU VENT HIM?? My daughter would complain about it tasting bad in her mouth in the morning our GI surgeon suggested that we vent every other day- this has helped ALOT!! We also put mints by her bed so she can chew on something to get the taste out of her mouth

Hope this helps!
Blythe
Mom to Brinly yo with Cf

 

[schmj4910]

Thanks so much for the replies! Someone always comes up with something I haven't thought of yet!

CJPsMom: Yes, we are doing continuous feeds overnight. We do 360 ml at 65 ml/hr. I am interested in the bolus feeds idea. I think this would help the enzymes work better. At what times are you doing the feeds? I would rather not get up in the middle of the night to do one, but I will try anything!

MaryamsMommy (Karen): His docs don't have any concrete answers or advice. He has struggled with weight gain and GI problems his entire life, but he is "healthy" otherwise, which is probably why they are not too aggressive. His BMI just got down to 50%, which is the freak out point at our clinic, so now they think we should do a bronchoscopy and endoscopy, but neither are scheduled.

I'm not really sure what a "motility issue" is. He has chronic constipation which we treat with daily Miralax and increase as needed. He also gets diarrhea. He has a lot of symptoms of "short gut", but his GI doc says he has too much intestine left to be considered short gut. He does have SIBO (small intestine bacterial overgrowth), which is what I think is eating up his calories. He also had his gall bladder removed shortly after birth, so his digestion is even worse than the "typical" CF kid.

We are running the pump at 65 ml/hr. We have experimented with different rates, nothing seems to make any difference. We are now using Pediasure Peptide 1.5. I tried to get Peptamen Junior 1.5, but our clinic seems determined to use Abbott products (probably because of the support they give to the CFF).

I looked up GJ tubes and it didn't seem like it would help in his situation, but I will run it by GI. Is your daughter using TPN specifically for weight gain? I know about the risks to the liver, our son had liver problems at birth. It is unknown if it was due to TPN or CF. I did read about a new TPN product, Omegaven, that has been shown to reduce the stress on the liver.

Mom2Brinly: Yes, we will be trying the new enzyme, Pertzye, soon. I have never vented him. I will try that. Thank you for mentioning it...I never would have thought of that.

 

[hmw]

Since he was doing better with his tube feeds before he stopped tolerating larger amounts at night, can a small amount be considered during the day- for example, AFTER he has eaten his fill, a small bolus (just one 60ml syringe) be given, so by the end of the day he's gotten one additional can of formula? Hopefully this would help him gain without adversely affecting his oral intake.

How are you giving his enzymes at night? We originally gave Emily hers at the start and then the end- but this is not how we feed our kids their enzymes with their food. We then changed to at the beginning and mid-feed when she was getting a two can feed, for both practicality (no one had to wake up in the middle of the night) and since it better suited the way the enzymes work.

GI issues can definitely affect everything from appetite to weight gain to how well they are able to tolerate feeds. Is he on probiotics? I'd try something like Culturelle if you aren't already and see if that helps. Emily struggles a lot with getting backed up and needs preventative Miralax & Benefiber and when we keep up on that plus Culturelle it seems to help keep things running better. At the first sign of any trouble we increase the maintainance doses to try to keep things moving. Constipation and obstruction in CF kids can get out of hand so fast!

A motility workup may help a lot as was mentioned. There are meds that can help with this if it's found to be a problem. If food isn't moving through her GI tract the way it should be it can cause chronic issues like constipation and can also cause issues with the feeds. But since CF kids are prone to SO many different types of digestive problems it's important to know what is going on in order to best treat it- starting with easier fixes to common problems, then gradually working your way on up.

 

[schmj4910]

Harriett - Thanks for the reply! Haven't "seen" you for awhile...glad you're still on here! I hope your family is doing well.

Yes, our dietitian has been suggesting a small bolus after meals, too. For many reasons, I could never incorporate it into our schedule. The main thing I always noticed was that after I did the bolus, he wouldn't eat anything at the next meal. I want to try your suggestion of 60 ml. I always did 120 ml and, perhaps, that was too much.

Regarding enzymes at night, our dietician has us grinding four enzymes and mixing them into the bag of formula. I would like to try the way you are doing it with the whole enzymes through the extension. I'm going to practice tonight. So, if we run the feed from 9 PM - 3 AM, we'll do two enzymes at 9 and two enzymes at 12 AM.

Yes, he is on probiotics. We were using Acidophilus, but recently switched to Florajen for Kids (sample from dietitian). The only difference I've seen is that his poops have been bright green.

We've had two swallow studies done...where he swallows barium and they watch it on the xray machine. Nothing unusual was noted. One tech said it moved fast. I think I'll schedule an appointment with GI tomorrow.

Thanks so much for the thorough response! My butt has been kicked and I am ready to make some changes!

 

[Aboveallislove]

schmj,

Have wanted to respond for a while but several non-CF emergencies! Anyway, first, thank you so much for all of your advise re the GI stuff in the past with our son. We are still struggling to figure it all out. I think our boys have very similar issues there.

A couple thoughts: While the CF doctors want 50% BMI, I really think that for some kids that is not there "normal" weight. So I'm wondering if it seems that the weight stagnation is because of him eating less during the day and whether that could just be because he's gotten to his personal "ideal" weight, which might not be quite at 50% bmi? And that if he is getting the feeding tube at night his body knows not to have more during the day? Or is his calorie intake the same and just no gain (which could be enzymes I guess). Or whether it is the stomach issues brewing again--our son seems to eat wonderfully until the stomach starts acting up again. I guess if his stomach issues are in check and it is a matter of him slowing down his intake during the day, I would think he might have just reached is ideal weight, as oppose to that something is wrong. Please let me know if you find anything else out. I'd hate for the doctors to push for the scope if it is just "normal" kid eating what he needs as oppose to something wrong.

On another note: Might I ask you re your son's stools. Our son of late has had liquidity with "chunks" or "grainy." Did you see that with bacterial overgrowth?? And also is your GI and CF GI specialist or just a "normal" GI?
Thanks!!

 

[schmj4910]

Hi Aboveallislove! I hope your emergencies were not severe! Thanks for taking the time to respond with your thoughts...I've had similar thoughts with really no answers.

He will be turning 3 next month. He weighs 26.5 lbs and is 34" tall. He is at the 5% for weight and below the curve for height. His BMI has always been high enough because he is so short. But, when the BMI drops below 50%, lung function has been shown to decline and more prone to infections. That's why they are concerned.

Yes, when he gets the tube feeding at night, he eats markedly less the next day, which is frustrating! But, overall, he has been eating better during the day than in the past. I'm not sure if this is because he is getting older, or because we had been treating the bacterial overgrowth. We haven't treated it for the past two months...GI wanted to do a Miralax cleanout. So, we did that, but it didn't help. Now we are waiting for his Pulmo and GI docs to get back from vacation to talk about the bronchoscopy and endoscopy. I hate waiting!

It seems like he is getting enough calories (1350-1450/day), but just not gaining. He has always had trouble gaining. His meals/tube feedings take up a large portion of our day and it is so irritating that it is not helping! I am constantly adding butter, oil, Duocal, cheese, etc. I wouldn't mind, if we could see a positive result! (Sorry for the rant!)

PS...Yes, we did see "grainy" stools with the bacterial overgrowth. I think our GI is a normal GI, but was recommended by our CF team because he is the GI doc that has the most experience with CF. I wish there was a CF GI specialist as part of our CF team! It is hard to work so intensely with two separate clinics.

 

[schmj4910]

So, we had the endoscopy and bronchoscopy done about two weeks ago. The bronchoscopy went really well...nothing in there at all! Yay! The endoscopy came back with a diagnosis of Eosinophilic Esophagitis, which is allergy cells in the esophagus causing inflammation. GI doc thinks this is why he doesn't want to eat. We started Budesonide, an oral steriod. Also noted was a very small pylori sphincter (opening between stomach and small intestine). GI doc widened it a bit during endoscopy. He also had a gastric-emptying study done, results were normal.

EoE is usually caused by food allergies, milk protein in particular. We're scheduled for allergy testing to see if we can pin down the allergies and eliminate the offending foods. We're really hoping he's not allergic to milk, not too many fattening foods without milk in them! We are still hoping that he doesn't become 100% tube-fed, but it doesn't look good.

I'd be interested to hear from anyone who also has EoE. What are your experiences with it?

Thanks!

 

[Aboveallislove]

augh. so many things to have to deal with. I don't have any input but just wanted to send you a hug. also, real quick: does ds not want to eat anything or would he drink stuff?

 

[schmj4910]

Thanks for the hug! Yes, he usually will drink, even when he doesn't eat.