Mar 30 10
by cara
at 8:13 PM
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GI Update: Tube Time

This morning we took The Littlest Apple for his appointment with the new doctor, a pediatric gastric motility specialist.

The Littlest Apple hasn’t gained ANY weight since his January appointment (but he didn’t lose weight either, a small comfort).  He still weighs 21 pounds, but he is almost an inch taller now.  Neither of those things was a big surprise.  He didn’t seem heavier, but his pants have been getting a little shorter.

The new doctor, Dr. C, seems like he really knows his stuff.  There are a lot of unknowns and gray areas about gastroparesis, but Dr. C seems to be very familiar with all of the testing and treatment options.  At the same time, he’s more than willing to admit that he doesn’t have answers to some of our questions, like “is this something The Littlest Apple can outgrow?” and “what caused this?”.  And I like that he’s taking ACTION.

Overall, I’m happy with how the appointment went.  Things are HAPPENING now, and that seems so much better than just drifting from one appointment to the next, watching, waiting, and wondering.

Here’s what we’re doing for now:

NG TUBE:  Obviously this is a huge one.  We’ve been circling the drain of feeding tube options for over a year now.  The Littlest Apple is getting an NG tube in the next few days. As soon as the home health care people can get out here to give us our instructions.  He’ll be using the tube only at night, for 12 hours while he sleeps.  The drip at night is the equivalent of about an ounce an hour, or 12 ounces total.  Given that he drinks about 16 ounces of Boost during the day, 12 ounces is A LOT for him.  But broken down over 12 hours, it doesn’t sound like too much.  We’ll see how he handles this.

We have the option of keeping the tube in 24/7 or learning to put it in and pull it out ourselves each night.  Both of those options have their pros and cons.  Keeping it in during the day will mean that he’s walking around with tube taped to his face all day.  More opportunities for it to get pulled out.  And I think that would be a big issue with his Mother’s Day Out program. (The Littlest Apple had an NG tube when he was in the NICU for the first 10 days of his life….he managed to pull it out TWICE then.  I can only imagine how his 2.5 year old self will handle that.)

Only using the tube at night takes care of those issues, but then The Picky Apple and I are left to insert a tube up through The Littlest Apple’s nose and down through his esophagus every single night.  That’s a little terrifying to me.  It’s definitely going to take the two of us to hold him down to do that.  There are going to be some major tantrums, methinks.  Maybe even mine.  But I think this is the option we’re going with so that he has a little more freedom in the daytime.

NEW MEDICINE: The Littlest Apple is going to start taking domperidone along with his erythromycin.  Domperidone is not FDA approved.  Similar to the dreaded Reglan, but with less side effects, and it doesn’t cross the blood-brain barrier.  It’s been used successfully for a long time in many other countries, and is used sparingly in the US.  I need to do a little more research on this before I go get our prescription, but I think I’m ok with this one.  It also requires a trip to the compounding pharmacy, which isn’t exactly convenient.

LABWORK: The doctor ordered labwork to test The Littlest Apple’s thyroid, electrolyte balances, pancreas, allergies, a general nutritional assessment, and another celiac test.  I’m very interested to hear the results from this blood work.  We’ve done some of these tests before, but not all of them, I don’t think.  The Littlest Apple did SO good at the lab today…he didn’t cry or scream at all.

ANOTHER GASTRIC EMPTYING STUDY: This is the same as the test The Littlest Apple had in January.  Dr. C wants to do another one after The Littlest Apple has been on the new meds for a few weeks to see if they are really making any impact.

So, that’s the plan for now.  Some big changes.  Some hard changes.  Some expensive changes (we’ve already almost met our rather large deductible for the year!)  But hopefully we’ll see some results!

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  1. Sounds like you have plans and that’s always good in my opinion. Like you said, much better than waiting and wondering. Good luck to all of you – you’re in my prayers!

  2. Lindsey permalink

    I’m glad some action is being taken (finally)! For what it’s worth, my husband switched to domperidone from reglan about 8 months ago. What a difference!! I hope it works well for the little one too!

  3. Having a plan helps SO much. Thinking of you guys, good luck with the new changes!

  4. courtney permalink

    so glad the docs taking action and i will be praying for you guys to make the right decision on when to use the tube. i remember when the boys had theirs and i can only imagine how you are feeling now. love ya lots girl!

  5. glad you are liking the new doctor. I am thinking about you all and hoping everything works out.

  6. Andrea permalink

    Great news! Well, not great. But a step towards progress. So glad you’ve finally found a physician who seems to be offering some guidance. Let us know when/if you need our help. xo

  7. Jeanne permalink

    I look forward to hearing how the tube is working…you’re a very brave Mom, Cara. I know for sure that that type wouldn’t work for my Kirk, as he doesn’t like to have his face touched at all (he won’t wear his eyeglasses either) so I would never be able to do a tube insertion on a nightly basis. Is he still able to drink by mouth during the day? When a tube was on the planning board for Kirk, we were going to go for the one that bypasses the stomach altogether and goes right into the intestine. Of course, then you have to use a special formula and my research shows alot of kids “forget” how to eat and have to be retaught later in life (ie: feeding clinics). For now, Kirk has stabilized but we have learned to take one day/week/month at a time with him.
    Hugs to you and your family
    Jeanne (nana to Kirk, 33 months, Dandy Walker Complex, et. al)

  8. Agnes permalink

    Hi Apple mama,

    My son is taking domperidone for 2 weeks now and I think it helps. He is failure to thrive as well and weighted 17lbs at 15 months. Not impressive at all. He has severe reflux since 7 weeks old and was on NG tube from 5 months to 10 months old. We pull him off the tube and he has no gained anything in 5 months. We don’t really want to go for the G-tube but his blood test shows dehyration.

    I feel like I found someone like me reading your blog. Please keep us updated. My GI suggested ScandiShake but it has high content of trans fat. You can ask your GI if that worth a try.

    Let’s work hard mama!

    Good luck Little Apple,


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