Thursday, June 16, 2011

GI appt

So about the GI appt! Is it dairy, is it not dairy?! Is it reflux, is it not reflux? Is it dysmotility?! And what about the tube he keeps pulling out? Did he loose too much weight?

Let's just say I had a lot of questions for the GI NP! I had more to talk about today with GI than I've had in a while! I'd already emailed back and forth so she knew what was coming!!

And can I just say that I'm so thankful for Ayer's Clinic!! The Vandy docs come down and it saves me 6 hours of drive time! The nurses in the clinic are beyond sweet to Asa since they've seen him for 3 1/2 years now!! He can rule the roost if he wants to!

Anyway back to the appt! Asa has lost 4lbs in the last 6 months. While that doesn't sound like a lot when you take into account that he's supposed to be gaining you can see the problem. He went from 40% on the growth chart down to 4%! wow, nearly FTT again! He did NOT need to be at 40% but 4% is too low!

He actually looks pretty good. He is easier to carry around too. But he has stopped sitting up on his own. And forget about trying to get out of bed or even scooting around. These things aren't good if it's from the lack if good nutrition I can help fix that!

Since he can't have Pedisure because of dairy then we are going to try Elecare orally. He'll have at least 2 cups a day plus all his other foods. Hopefully he will drink it from his straw cup and he'll gain weight. If that happens we'll try to do without the Reglan. Maybe what we thought was dymotility was just an allergy. He never had motility testing done. They just tried it and it did help some. If the Elecare, weight and no Reglan works well then we'll talk about taking the tube out!! Not for at least 6 months though!

I'll start the Elecare tomorrow. I'm praying he will drink it. He doesn't and can't eat enough to sustain him. He needs the Elecare! He'll drink it! Right?!?!


Rose-Marie said...

We also had real problems with Pediasure and all things dairy-based when our daughter was younger, and she too lost weight when she should have been gaining. Getting her off dairy/whey-based formulas helped tremendously. I won't go into detail on how it helped her "output"...enough said...

Have you ever considered blending your own tube feedings? The flexibility to give exactly what your child needs is such a gift. Second to having the g-tube placed, this has been the greatest "intervention" in our daughter's life (doesn't it sound weird to think that the same real, healthful food you'd feed your other kids would be looked at as an "intervention?" It seems backwards...). Her general health is amazing, her motility has normalized, reflux is well controlled...we thank the Lord every day for this gift of real food He has made.

I do hope you can steer clear of Reglan. That would definitely be for the best!!!

Clarissa said...

Abigail had a horrible reaction to Reglan, we will never go near it again!

Abigail takes EleCare via g-tube only, it is her only nutrition and has done well for her. She was extremely constipated with pediasure and peptamen jr. and goes fine with EleCare now without any help (miralax, or other help)!

To Rose-Marie, how do you get a recipe tailored to your child's needs to make "real food" for tube feedings? We would be interested in that... do we just talk to Abigail's dietician? They have never offered that option to us. Abigail vomits daily and is immobile.

Anyway, Kim, good luck with everything! :)

~Jana~ said...

Kim, If Asa wont drink Elecare ask your doc about EO28 splash. Its an elemental dairy free formula that comes in three flavors. Its been a lifesaver for us.

Rose-Marie said...


Sorry, I didn't see your question for a couple days.

Yes, I'd recommend talking to your dietician about coming up with a recipe to meet your daughter's needs. Some dieticians are very supportive of home blending and others are leery of it (because it is more work for them than just prescribing a commercial formula).

If your daughter has special dietary needs, the dietician can also help you work around that and still have a balanced diet.

Our daughter's blend varies from day to day, with protein coming from meat/poultry/nuts/eggs/cheese, a variety of fresh veggies and fresh or dried fruits, whole grain cereals and bread, and a splash of oil (usually olive). It comes out to about 30Kcal/oz like most formulas and I give her additiional free water.

If you want more detail, I posted about it here:

Hope that helps!