Parents of disabled children-Special needs forum support group

My daughter has ongoing eating issues. She grew wonderfully for the first 6 months of her life, but violently resisted the introduction of solid foods, and gradually drank less and less milk as the months wore on.

However, there was no obvious cause--if she had reflux at the time, it was not major, and all the specialists we've seen believe it's behavioral.

At one point when she was about 9 months old we could keep her entertained with toys to keep her drinking, but she grew tired of that and now we just feed her when she wants, how much she wants. Usually, it's very little and occasionally she goes on fasts with very little drinking.

We worked with therapists, a pediatric dietician and so on, who basically said we were doing what we should.
Miraculously, she began eating at about the 13 month mark--suddenly she decided she did want food, and would even try different things and let us feed her.
It was a major shift, and as we were on the waiting list for the g-tube, we were hoping this would let us avoid it.

Since then, she's been picky and inconsistent. Her food intake for a day rarely adds up to more than a few tablespoons, although she does have the occasionally unexpectedly big meal. She drinks fortified formula or fortified breastmilk, with extra fat and formula powder (about 350-400 ml/day). We add unsalted butter to anything she seems willing to eat. She wakes up several times a night, partly to feed, but doesn't have much.

Anyway, the last three weeks have passed with no weight gain and her g-tube appointment is in a week. Her primary pediatrician thinks she should go ahead and take the plunge and that it may help her get on track. But we're finding the decision difficult, because she does eat, even if it's inconsistent and insufficient. Right now, she is about 3rd percentile in weight--14 months old and 8.4 kg. At 6 months she was in the 75th percentile.
If we put off the appointment, it will be at least a 6 months before we can get another one.
In the meantime, we aren't really worried about dehydration,but we don't expect her to suddenly increase her intake and grow faster.

Anyone have words of wisdom as we think this over and make a choice onto go ahead or not?

Hi and welcome to the forum!

My son Euan has a feeding tube and has done for a year now. He has a renal condition which means he doesn't put on weight easily. When diagnosed he was 1 and he too had dropped off the weight chart even though he was born on the middle centile. He initially had a naso-gastric tube and was fed via a pump with bolus feeds to bring his weight up. The bolus feeds are high calorie and do work in increasing their weight. They do however, also kill any appetite they do have as the bolus feeds fill them up! we found that our son stopped eating pretty much altogether but he still drank and had plenty of energy. Feeds were not the only reason he had the tube, he also has many medications go down it.

I think the best thing I ever did was go for the tube, he is nolonger fed down it as his appetite is now normal but it is still a great thing to have for his meds and general fluids.

I would say go for it, with it your child will put on weight and grow and have loads of energy. You can still persevere with the eating and if she vastly improves she can always have it out. Its not a complex procedure, our sons op was under an hour.

Leaking can be a problem, causing burns to the skin from the stomach acid but they can be easily treated, they should talk you through it before hand and the nurses are great at helping them with this!

Lucy xx

Thanks for the help on this.
Sorry i aint been around its been half term here and ive been pulling my hair out.
How are the other mums and dads doing in half term.
Personally i hate them....

Hi
Have you had the appointment yet? What did you decide?
We've had this dilemma most of my daughters 8 years. She has multiple food intolerences so what she is able to eat is so low fat/calorie that it is always difficult to increase weight.
We have managed to put off the need for a gastrostomy but only because she eats good quantities and loves it! However, I'm sure there will come a time when we may need to think again.
We also know other Children who have had it done and have been soooo much better for it.
Good Luck

We went along and expressed our concerns but we did agree.
We thought to ourselves there is a 4 month waiting list for this so if things impove we can get away and not have it or if not then we can have it fitted and we will have had time to really think about it.
Does anybody know about the recovery time afterwards they said about 6 weeks this seems a long time for the child to be in pain afterwards.