GOING CRAZY

First, I think that Jill’s question about cow’s milk is a good one. If he’s always been on it without problem, then I’d also guess that it’s the meds.

When did he start the prevacid packets? Did he start with a whole packet? How much med is in a full packet- is it 15mg or 30mg… sorry for asking but we don’t get the packets in Canada.

About splitting packets- how are you doing it? It’s actually very hard to split packets, b/c it’s hard to ensure that you’re getting half the medicine beads in each dose. Also, you can’t split it after it’s been made, or you might not get the whole dose. I’ve heard of people using a strainer to separate the flavour from the beads (which is the medicine) and then dividing the beads in half, adding half the flavour, and THEN adding the water. The easier way is to get the solutabs instead of the packets. You can split the solutab in half and give it to your son. Probably even better is to get your doc to prescribe the full solutab, and then just give him the whole thing… or split it, and give half in the morning and half at night.

The other thing about the packets/solutabs is that they’re delayed release. This means that they need to be given on an empty stomach and then followed up with a meal 30 minutes later to activate the drug and have it work well. I’d try that first.

About the night waking- I’m wondering if he’s having painful reflux due to the reduced dose of meds, and waking asking for milk to soothe his throat. If you give his meds in the morning, can you try giving him something like OTC pepcid complete at night and see if that helps with his nightwaking? I’ve heard of quite a few moms having success with half to 3/4 of a tablet.

About the feeding, my guess is that he doesn’t want to eat b/c he’s having discomfort. Is this a new problem? What was his eating like in the past? If this is a longterm problem, you might want to look into feeding therapy. My dd had a feeding aversion from her reflux and it was terrible, but feeding therapy helped a lot. We were always also sitting on the verge of a feeding tube. I’m not sure what you mean by his weight being 33 percent, but if you mean that he’s at the 33rd percentile, then I’d really try not to worry as this is pretty good. What’s his height like? What they usually look at when considering the need for a tube is if the child is maintaining their own growth curve. Usually they have to drop a lot of percentiles, and have chronicly low food intake, i.e. too low to allow proper growth and development before going to the tube. Typically they get labelled Failure to Thrive, but not always. If you are worried about this, then I would talk to your doctor about your concerns and see what s/he suggests. Also, given that he has had reflux for quite a while, I would ask for a referral to a pediatric gastroenterologist if you haven’t already. If you tell us where you’re located, someone on this site might be able to suggest a good doctor. Also, sometimes there are things that they can add (powders/supplements etc) to help boost caloric and nutritional intake. I would ask your doc about getting help from a pediatric dietician (or any dietician). He’s at the age where he might take pediasure well.

Just one last thought, it sounds like he’s been on milk for a while, I’m wondering if he’s milk-soy protein intolerant (MSPI). Has he had any problems with rashes/excema/diarrhea/mucousy-poop (sorry so nasty)?

You might want to check out Laura’s intro stickied under the introduce yourself forum. It’s VERY long, but full of tons of great info.

Good luck. Hang in there. This is a great site. When no one understood, I came here and it really helped me through some dark times.

We are there for outpatient feeding clinic, they see us every 4 wks….

our gi is dr boyle at Chop….I am dissatisfied because my dd has dge and they have no plans as to how to fix it.

when do you start your day treatment at chop’s feeding clinic??

was he diagnosed aas ftt??

Have you been to Chop’s feeding clinic before??

Does he eat any pureed foods?? What foods does he eat??

The level of prev sounds low to me..my dd is on nexium 40 mg a day, 20 in am 20 in pm

If you want to talk more my # is 215 782-8931, im about 25 min from you.

good luck