feeding issues and feeding tubes

preggersINschool25

I'm sorry to keep posting, but our developmental pedi is recommending a g tube...

My son has battled with meals since around 6 months. I am getting about 20oz of formula and 4oz of stage 3 foods a day. Almost half of his formula is fed to him when he is sleeping because that is when he eats the best. He had a swallow study and it showed penetration, but no aspiration.

We started zantac on Sunday, but there has been no improvement to his intake. He is between 2 and 5 percentile for weight and 25 percentile for height. He has a mild to moderate loss of white matter in his brain. His physical and speech development is severely delayed. He has hypotonia.

Part of me thinks the tube is a good idea because meal times drag out for an hour and it is such a battle. I kinda think that maybe the nutrition will help him flourish and help with his brain development. However, I'm concerned that there are more options to try.

Does anyone know what tests or medicines or strategies I should try before accepting a g tube?

preggersINschool25

I am not in feeding therapy although our ST has worked with him a little. Textures dont seem to be an issue, its mainly the quantity. He would only do 3oz of food and 2oz of formula every 4 hours if I let him do what he wants.

I tried to get with a nutritionist, but I was given the run around even when I insisted for a referral. My regular pedi doesn't seem concerned, but I dont like him and plan on switching when things settle down. I'm more communicating with our developmental pedi via phone because he is 2 hours away.

I'm lost on what to do because everyone says he will eat if he is hungry and that he looks well nourished. Personally I see chubby cheeks but skinny arms and skinny belly maybe normal sized baby legs. We have good days on occasion, but mostly meal times are battles.

sunslice

I would ask the Dev peds again for a nutritional consult over the phone.  We go to Riley and almost always deal with the nutritionist over the phone.  Ezra has had a feeding tube since day 10 and it was never really an option to not have it.  He is now almost 3 and we rarely use it although he still only takes formula by mouth.  Having a gtube hasn't been that big of a deal for us but I understand wanting to avoid it.  If they think that the amount that he is getting is enough to keep him hydrated maybe you could try a higher calorie formula?

zoeyandsummersmom

20oz of formula isn't bad. I would talk to your doctor about alternatives such as 30cal/oz formula, adding duocal to the bottles - there are several options. My daughter was maxxing out at about 10-12 oz a day of formula before she got her g-tube, but we added in duocal and oatmeal so they were thickened as well and that did seem to help, but not enough. The g-tube definitely takes the pressure off of you as you can do catch up via a feeding pump at night. Not saying that is a silver bullet, as they come with their own set of issues.

kar5162

That doesn't sound like terrible intake, especially with significant reflux. Xanac is from what I remember, super mild...I'd probably give it a period of time first with a plan before jumping to a tube at this point. What is his weight gain rate? Is he just small or is he not gaining or gaining at a really slow pace? Can you up the concentration of his bottles to help boost calorie content if he's taking bottles, OT nursing? Are you adding a thickner to help reduce the swallow issues? Have they looked at allergies? Taking dairy/soy/corn out of many kids diets sometimes helps with overall volume intake too (soy formula (for dairy), Nutragim/Alimentum (dairy), Good Start (different type of protein, no corn)) have all helped kids I know). 

Good luck.  

EmAre

My 3 yr old daughter has been considered FTT since 9 mos. She is below the 1percentile for weight and about the 30percentile for height. She is developmentally delayed, has GERD, DGE, and was just recently diagnosed with a chromosome abnormality.

The intake you have described is actually really good. I would absolutely speak with a nutritionist and get a break down of how many calories he's getting vs how many he should be getting. That is simply a 5 day food log and a phone call. Does he see a GI? If not, a consult with one might be warranted. Most reflux meds like Nexium and Prevacid take weeks to see results because it takes a few weeks for the acid pumps to be turned off and another few weeks for any acid irritation to be healed.

With our daughter, we could never increase her intake, but we could make it more caloric. Duocal has been a lifesaver along with Elecare formula. That is where the majority of her calories come from. We have been lucky and my daughter has never needed to be tube fed.

DixieNormous330

We're in a similar boat, though the recommendation hasn't been made yet. Honestly, the idea of the g-tube is starting to seem better and better to me, as we could work on the behavioral aspect of feeding, and develop her oral-motor muscles (DD has hypotonia as well) while making sure she's not getting dehydrated and getting the nutrients she needs.

 We have very close friends who have a son with a g-tube. He eats orally but is very underweight for his age so he gets supplemented.

It's a hard decision, and ultimately it comes to your comfort level. 

bparkhur

That honestly doesn't seem that bad and I personally wouldn't go to a gtube yet. My son has been FTT since about 9 months (he is 29 lbs at 3 1/2 years old). We have had SEVERE eating issues for as long as I can remember. Somehow, we've survived. I would recommend a feeding clinic with a team of specialists if possible (GI, speech pathologist, nutritionist). They will give you more insight. Keep in mind that going with a gtube eventually means weaning from a gtube, which may delay his eating even more.  I'd definitely get a second opinion.

lvnbraves

My DS has had a feeding tube since he was 7 months old when he was only 15 pounds and was starting to lose weight, despite high calorie formula, oil in his meals, etc.  It was such a blessing, although as others said, it's not a silver bullet and presented it's own challenges.

You didn't say what formula/BM you were using - what are you using?  We found out when DS had the feeding tube placed that he has severe allergies, just not of the normal variety.  He has something called Eosinophilic Esophagitus, which is an autoimmune allergic response.  Basically, his esophagus becomes inflammed, which caused him to only eat the bare minimum he could to get by.

We're still struggling with the allergies and working with OT & Behavioral Psych to wean him from the tube (we received some bad advice when we started the tube which led to complete tube dependency - I think it could have been avoided had we done things differently).

That said, it was a blessing as he was starting to demonstrate developmental delays.  He's now overcome those, but will fight these allergies (and CF) for the rest of his life.

Good luck in making the decision.  Also, check out feedingtubeawareness.org for helpful information on feeding tubes.