need some answers

[Anonymous]

My baby girl is a year old now, still failure to thrive, and I am at my wits end. She is on 15 mg solutabs once a day, Elecare formula at honey cons. with simply thick. The ST thinks she is aspirating, but we cannot do a swallow study, because baby refuses to eat in public or when strangers are watching. Our GI appt. is not until next month. I can’t get this baby to drink. She is taking only 7-10 oz. in 24 hrs. and that is thickened, so it counts as even less. She only drinks 1-2 oz. at a time and that is mostly in a sleep state or by spoon. She is a happy baby(unless I am trying to get her to drink). She vomits once a day since we started thickening and she grabs at her throat a lot, not just when eating. I really want to avoid a feeding tube, but I need her to drink. Please, if any of this is similar to your child, please let me know what helped. What is wrong with her throat? Why does she stop drinking at 1 oz.? Why is she vomiting and why is it only a big deal to me? It is not normal.

[Anonymous]

Sounds very similar to my child! My guess is that she needs an endoscopy to see if she has esophageal damage. The vomitting itself is not a big deal and there’s no much that you can do about that. But the pain from the vomitting sounds like it’s caused a feeding aversion. We were in the same boat. It started from birth and got gradually worse until 2 months old when she stopped eating altogether. I had to try to sleep feed her, which was the only way, and we did hypercaloric feeds because she drank so little. It would take hours to get her to take 1-2 ounces, she cried when I tired to feed her, pulled off, arched, and then would go back. It was terrible. This was the only way to get her to eat. My first comment is that a child who only takes 1-2 ounces at a time really can’t use the solutabs well. They need to be given on an empty stomach and followed up with a meal (4-6oz) to activate the med for it to work. If it’s not done like that, then it won’t work properly. I’d try bufferbabies with prevacid capsules if I were you (they don’t need to be timed with meals and doesn’t matter if baby eats or not). The only thing is that each dose will be at least 3.5mls which is hard to give a baby with a feeding aversion. The second thing, is that 15mg solutabs really isn’t enough if baby has a feeding aversion. You want a dose around 15mg twice daily, or 10mg 3x daily to total around a 30mg dose. I’d call the GI and get her on the wait list to get an earlier appointment. I’d also check out http://www.marci-kids.com to read about medication and dosing, and look up reflux solutions to read more about the team. They produce buffer babies. We tried every med with Hailey, but her feeding aversion was so bad that we couldn’t get her to take them well, and she didn’t eat enough for the solutabs to work. The thing that I would say is that if your baby’s dose of med isn’t enough, and she has a feeding aversion at a year old, then you really need to make sure that she gets enough prevacid to make her feel better. If she continues to have pain, then she’ll refuse to eat and have that negative association. We also had an aversion to solids. Not sure if your daughter eats solids okay.

If this was my child, here’s what I’d do:

1) Videotape a feeding and show it to the ST (she should be able to tell if she’s aspirating or not based on that for the most part. You’d see coughing, etc, unless silent aspiration, but then she’d have recurring respiratory infections. I thought that Hailey was aspirating, but it was just gagging from the feeding aversion and from reflux when eating)

2) Ask for an endoscopy to look for damage. They may suggest an upper GI, but the endoscopy is the more important test. It will tell you the state of her GI tract.

3) Get her on a higher dose of prevacid, ideally something like buffer babies (not a pharmacy made compound, a dose of about 30mg divided into at least 2 doses, or 3 if possible.

4) Ger her seen by a good feeding therapist or at a feeding clinic. This is key. Especially if she’s already a year old. We were in feeding therapy from 8-15 months. Things were hard with feeding from birth to 2 years, and then got gradually better. My daughter now eats really well and you’d never know there was a problem (she’s almost 5, and weighs 33 lbs, which is small, but she’s healthy and more importantly she LIKES to eat and is growing well).

5) In the interim, get a dietician to help you find ways to add calories to her feeding. He did hypercaloric feeds, extra formula per bottle, also cereal, and other things. The dietician helped us because you need to make sure that they don’t dehydrate or stress their kidneys. Most days, we only ate around 12-16 ounces if we had a good day, so calories were an issue.

I know how hard this is. I still remember how horrible everything was, from the GI not really seeming to care, me fighting everyday to avoid the feeding tube, and the struggle of feeding. You need to find a core of good professionals on your side to help you and your daughter. It’s a long road, but it will get better. Good luck.

[Anonymous]

By the way, Hailey was still refluxing until about 3 years old (we had silent reflux, not outward vomitting except when lying down at night or in the car seat, or crying). We kept her on her prevacid until then and then gradually started weaning. When she was older, it was easier to give her the meds. We used caracream, and that really helped her with the reflux pain, but it didn’t help the feeding. The feeding aversion was a longer-term problem to fix, and took months even when I felt that her pain itself was better controlled, she still hated food. The feeding therapy was really essential, and this really helped her gradually. It was a lot of effort, but the more positive feeding experiences she had, the better things became. We graduated feeding therapy at 15-16 months with a child who ate tiny amounts, still only sleep fed formula, and who was extremely cautious with eating a tiny repetoire of foods, on to an extremely fussy eater who would take bottles when sort of awake at around 2 years, and then gradually to a normal eater. So hang in there. The feeding aversion is a million times worse than the reflux itself, so I know where you’re coming from.

[Anonymous]

I don’t have any experience (well, my ds is labeled FTT/short stature @ 21mo & on extra calories so I can related to that… but not due to a feeding aversion). BUT, I just wanted to say – hang in there – I’m so sorry you’re dealing w/ this & definitely use Lori as a resource as she is giving GREAT advice!!!

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