Long Term Tube Feeding of an older child (toddler)

[Juliane]

Hi ladies! I found you're forum through Google, and I hope you don't mind if I ask some questions. I hail from the States (suburb of Philadelphia) so I hope I don't get anything lost in translation...

First and foremost, I give each and every one of you credit and kudos for all that you've been through. You're responses and your concern for each other is the reason I'm posting here.

My youngest (of 3), Jake, is my only son. He is 21 1/2 months old and weighs ~19.5 lbs (~8.9 kg). He was a good eater but always on the small side. Over the last six months, he has fallen off the growth chart and hasn't gained any weight. Our Pediatrician asked that we see a GI and a Nutrionist (scheduled for June 20th), however, in the meantime, we are trying our hardest to fatten him up. Our biggest challenge is that he has lost all desire to eat.

He is otherwise healthy (bloodwork came back "negative" for whatever they were checking for). He is active (very) and sleeps very well. He just doesn't want to eat. Typically he would eat yogurt, a sandwich, fruit, etc., but now, nothing. It's a struggle to get him to eat cheese. We put butter, whole milk, heavy whipped cream, anything fattening on everything, and he's not interested.

We've been having him drink Pediasure and Carnation Instant Breakfast (mixed with whole milk or Pediasure) per our pediatrician's recommendation.

What I'm struggling with is "why?" Is something wrong with Jake? What are the long term effects of his refusal to eat? I know it's not a texture, color, etc. condition, so I've ruled out (in my mind) some things, but otherwise, why?? And of course, I wonder about the feeding tube. This is what the Pediatrician told me we'd need to do if Jake doesn't gain weight fast (overnight via the nose).

I know no one who has had this problem - and there isn't much information on the Web for me.

Can anyone help? Please be as realistic as possible.

Thanks everyone!!

[scarlet121]

Hi there and welcome!

Like Theresa said few and far between at our bubs age. So I am glad that you have found someone.

First off, does he have any reflux issues that you could be aware of (sorry if I am barking up the wrong tree but my sons FTT was through reflux) ignore me if he has, but I see you are seeing a GI, so I think that is a really great place to start.

My son was a fantastic eater and of good weight till he was 9months and did a similar thing to your son, just basically stopped, and for him it was the reflux, initially he used food to soothe himself, he would eat to take the pain away, I beleive he realised that he was in pain so he decided not eating was the way. Because he was of good weight, it wasn't until he was 12months that we started seeing a pead, who then referred him to a GI at age 13months. He was tested and diagnosed at 14months, and we were put back on zantac, this maintained his weigh, but his eating was still really hit and miss, we wen't on prilosec (our losec) at 16months and we haven't looked back.

NOW I can see all his problems with eating, ear infections, sleeping, apnea etc... were related to reflux, because although they didn't all go away overnight, they got better with the prilosec.

So having that med behind us is what helped us out of the FTT category. From what you are saying it sounds like you are doing everything to get the calories in, you are doing a good job. A lot of people don't even know to try that. So if you are going to a GI, and it is reflux, then the above reason could be why he isn't eating, and if that is the case medication for the reflux is what he needs.

Other things it can be are things like celiac disease, which could be what they were looking for in his bloodwork. Esinophillic Esophagitis, which is basically an internal allergy and the only way to diagnose this is with a endoscopy with biopsy, this is rare, but becoming more prevalent these days.

The GI will probably ask a lot about his bowel movements, this could indicate other diseases that he could have and why he isn't gaining.

But, and this is just me, but in my expierience babies have a reason for being FTT, hopefully the GI can help you work that out.

I wish I could tell you WHY Jake, I often think the same of Parker, but again there will be a reason why. WIth the tube feeding again I only have the expierience with refluxers (and Parker has never needed one) but generally they are a good thing, if not a little annoying, a lot of children do really well with them, but sometimes with a refluxer they don't do so good cause although they are getting it in, they reflux a lot on it.

I know I will probably get told off, but here are some tips for tube feeding
... links edited out, refer to forum guidelines.

Good luck!

[Juliane]

Thanks for the feedback girls, and thank you so much for the Web sites. Having to wait six weeks for the GI and Nutrionist appointments is making me ill.

Jake was born via c-section and was "normal" for all ratings. However, at four weeks, he had an incredibly high fever which landed us in the hospital, which in turn caused him to stop breathing. He was revived and we were sent to DuPont Children's Hospital in Delaware (one of the country's best children's hospitals). We spent the night in PICU then the remainder of our stay in isolation. He ended up being diagnosed with meningitis (not spinal though - thank God).

But honestly, that's all that I'm aware of. When I think of reflux, I think of pain. I don't see him in any pain. He was breastfed and bottlefed with formula, but he's always has been on and off Pediasure to gain weight (I have hypothyroid so my breastmilk supply was always out of whack). Speaking of the hypothyroid, I can assume they (the Peds) also test for this (duh - guess I should ask).

Is it possible that he has reflux and I don't know about it? I'm also assuming they tested for diabetes because when I researched some of the common terms from this forum, that kept coming up.

I'm not resigned to the feedtube, but part of me would be relieved if he were put on one for the mere fact that he needs the calories, fat, nutrients. I'm afraid if we battle for the next 2 years with solids, he'll pay when he's a teenager. I'd rather suck up and deal now for his benefit down the road.

Is it bad? Learning curve on both our parts? Typical length of time used??? Oy. I have so many questions....

Hope your kiddies are doing well. I hope I'm not coming off selfish.

Thanks girls!!

xoxo,
Julie