When to consider a G Tube

[emacsurak]

I have twin daughters with cystic fibrosis. They were born 6 weeks premature- and were twins. So they started out life small. They have also been taking Creon since 4 weeks old. They just stopped NG feeds 2 months ago (they are now 8 months old). They each have had great weeks and poor weeks with weight gain- but always a gain, never a loss. The dieticians keep drilling the idea of G tubes... I feel that it is too early. They are gaining- they are in the 50% height to weight- they are hitting the developmental milestones for their adjusted age. Everything that I am reading says my 5 year old, my 10 year old... got a G Tube. At what point do we consider the tube, are they young enough that we can still fill the gaps in nutrition? I feel like we should give them a chance- not base the decision based off two low weight gain weeks... am I wrong in this?
The OT said that often they see a regression in you children with sitting and rolling and wanting to orally eat ON THE OTHER HAND the dieticians say that it gives them more energy. HELP.

 

[Aboveallislove]

Where are they on the weight and height curve versus where they were at birth? And where are they on weight and height curve based on their adjusted age, i.e., their due date? And maybe I'm confused but if they are at 50% for weight WHY are they suggesting a feeding tube???? And is that at birth age or adjusted for premmie status age?? My gut is that if they are eating well and gaining that it will just take time for their natural weight to be established . . . it takes some time to "catch up" for premie weights.

 

[emacsurak]

They are at the 10th percentile unadjusted for weight- BUT at the 50%ile for the height to weight ratio. IE they are short but proportionally fat enough for their small size. They are following a curve- just not as high on the curve as the dietician would like.

 

[Aboveallislove]

I don't recall how long they are suppose to adjust preemie's weights, but I'm pretty sure it is at least the first year if not longer. So if they are 10th% for an 8 month old, I'd imagine they are higher for a 6.5 month old. Personally, I would not consider a feeding tube at this stage because they are premies, they are staying on a growth curve, and they are smaller in height as well, so their weight is not out of wack. It takes time for any catch up growing. CF Centers expect all CFers to be 50%. Not all people are 50% and to try to force isn't going to work. Obviously you want more weight in case of illnesses, but absent complications (GI issues, enzymes not working, disease progression), the body works--they crave what they need. So long as you are on top of enzymes and they are eating and gaining I don't think I'd even put it on my radar. I finally had to just tune out the nutritionists pushing on weight b/c it freaked me out and I then pushed DS to eat more and that backfired and he started losing until he was back in teens--he's now above 50% for height, weight and BMI, even though born around 9%ish for height 13ish for weight. I stopped pushing and just made sure I gave him plenty of opportunities to eat and he did. If you think that their stomachs are too small to hold the quantity of food they need/crave, ask about a higher cal formula or supplement, but they may well just cut out other foods. Our son generally eats 1400-1600 calories and that's it but gains well even though the CF dietitian says it's like 1800-2400 calories daily. . . Everyone is different. Trust their body to eat what they need and, in my view, if they aren't gaining try to see why, GI issue, enzymes, acid reflux, etc., before assuming that they can't eat enough or gain. A feeding tube is not without risks, but obviously needed in some cases. I just don't see it now for you. Others I'm sure can add their thoughts, which could differ. I'd also recommend reading Ellyn Satter's Child of Mine to make sure you don't accidently sabotage their eating by preassuring them.
Hugs and Prayers,
Love

 

[emacsurak]

Thanks.

It is soooo reassuring to hear that there are other parents out there who are feeling the same way I do. I feel like everything the clinic gives me to read is pro-g tube because that is what they are pushing. THANK YOU so much for your support and hope!

 

[JennyCoulon]

It is a case by case basis. I would talk to the dietician and let her know your thoughts and how you want to give the girls a shot to hold their own by eating their calories. You are their mother and if you think that they can keep up with eating the high amount of calories they need on a daily basis then that is your call. We got harped at everytime we went to clinic when our now 13 year old was 4-5. It was so bad I didn't even want to go to the clinic visits. We tried everything at home; extra additives, whipping cream in milk, lots of butter, high calorie foods, and drinking the formula. For our now 7 year old that just got his g-button placed this past July we bought 4 cases a month of the Enlive Apple Juice for extra calories. Our son loved the juice and would drink 5 or more a day. It got expensive and it just wasn't working to help him gain weight the way we thought it should. Our son that is now 13 got so sick that he didn't have the reserve to fight the infection so they admitted him into the hospital when he was 5 a week after school got out for the summer to have it placed. He has had great weight gain, sometimes he will gain 5-10 lbs. in between our 3 month clinic visits and sometimes it is less than 5. Our 7 year old is gaining since he got it placed but we are still fine tuning the dose he gets, etc. Our oldest gets 5 cartons of the Boost VHC over 8 hours 6-7 days a week. Our 7 year old gets 3 cartons of the Boost VHC over 8 hours. Our oldest gets about 75% of is daily needed calories from his milk so eating for him is mostly just extra. Our 13 year old is also on an appetite stimulant that he takes 2 times daily and he has no side effects from that either.

I would just talk to the dietician and the doctors and set up an agreeable time frame that you are going to try getting them to gain. If they do not gain x number of lbs. within that time frame (make it reasonable) then you move forward with g-button placement. I can tell you that so many parents, myself included get down on themselves and feel as though it is their fault that their child can't gain the weight. It is not your fault it is this stupid disease and there is only so much we can do before we just have to move in another direction. One thing that I can see first hand is that good weight gain=good lung health. Please feel free to let me know if you have any questions and keep us updated.

 

[rmotion]

They are young for a g-tube, it is going to be a 100% effort on your part.It will be hard to tell how they are feeling and adjusting to it.
I have had a g-tube for over 25 years with alot of success but it is hard sometimes.
I use it mainly now for bolus of things I would not eat like a salmon, broccoli and egg smoothie. Gross but lots of nutrition.
look at some of my posts " g-tube advantage" for some ideas
I think if they are growing and doing ok waiting a year or two should be ok.