The Boy Who Didn’t Eat Enough (g-tube dependency?)

posted in: Apollo | 25

curly-haired-boy-eating-watermelon

Apollo is now 3 1/2 weeks post tonsilectomy. That was a rough one, my friends. He is fully recovered, drug-free and back his old self. Everyone is asking: how is he sleeping? It’s hard to say. Apollo has not just been “put to bed” since after his first heart surgery when he began experiencing extreme bedtime anxiety. Our current “routine” is to give him .75 mls of melatonin at about 7:30 and wait for him to fall asleep. This is horrible parenting, I know (or as the doctors call it: “poor sleep hygiene”). Once he is asleep, we hook him up for his tube-feeding (currently 360 calories worth of Bright Beginnings Soy Formula). This takes about 45 minutes. Sometimes we feed him in his bed, sometimes on the couch if this is where he has fallen asleep. Once his feeding is over, we tuck him into his bed…

I *have* heard him have a few instances of sleep apnea at the beginning of the night, but I have also heard him sleep and breathe peacefully. Removing his tonsils has not magically made him sleep through the night. He either comes to our bed at some point in the night, or goes to Tucker’s bed. The nights he has been with us, shows me his is still a *very* restless sleeper. He kicks his arms and legs, he sits up. One night I found him with his feet on my pillow, head down by my  knees…

His eating…is more or less the same. His weight is steady, where it has been for several months. He is thin, but not underweight. Which is good..until you consider he is still getting roughly a third of his calories through his tube. His interest in food is the same…he has some foods he likes. He’s tried a few new things (a few sips of milk, a couple of bites of lasagna) and ate a small serving of ice cream recently. While he often says he’s “hungry” while asking for food, he chooses to skip meals on a regular basis. He eats dinner about half the time, and eats nothing the other half. We always set a place for him, give him the same food as everyone else, but don’t force the issue or bribe him.

We attempted to wean him from the g-tube in February and in the end, he was: more irritable, slept worse and lost weight. Clearly he wasn’t ready. Now his tonsils are gone which should open his airway as well as make it easier to eat…but he’s eating exactly the same as before. We have tried group feeding therapy but stopped, because my mom sense told me having him watch other kids squirm and cry over their fear of food was doing more harm than good…

I recently watched this Documentary:  The Girl Who Never Ate and found it intriguing…except their method to basically make them hungry enough to eat…and isn’t that what we did back in February? I would have no issue with him having the tube for years…or forever, if the doctors could tell us why...but at this point they can find no physical reason for him not to eat enough…

I’ve been reading a lot about g-tube dependency recently, wondering if this is Apollo’s problem. I jokingly told Chuck I was taking Apollo to Austria to attempt a wean at the clinic there (don’t worry, we’ll stop in Switzerland for some chocolate while we’re there).

If things remain the same, I will go back in and discuss the tube feeding with Apollo’s regular doctor in a few more weeks. For now, I am just happy that he is staying healthy and learning and developing.

 

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25 Responses

    • bakersdozenandapolloxiv

      I’ve read that post several times. 1) I’m not convinced the clinic still exists. I have not been able to find any info about it EXCEPT for in blog posts and the most recent of those is from 2012. If it still exists, it’s a well-kept secret. 2) I’m not sure I trust SCH enough to monitor a planned “starvation” diet with Apollo. I am sure you understand my hesitancy, Kara 🙂

      • Kara

        No one ever mentioned it us either. We heard about it when he had a specialty consult from a speech therapist from Oregon.

          • Kara

            Honestly, I don’t think the doctors care if kids ever get off the tube. It’s easier to keep them fed and hydrated with the tube. It’s easier to get medication into them. The doctors can control exactly how much the child is getting. I think most of them would just keep the tube in forever.

  1. Kara

    Toft house is another one in the area. They have a list of requirements that Apollo might not meet though. The child has to be able to handle a loss of weight for example. I was told when we were weaning Owen that 10% weight loss is considered acceptable. Owen didn’t lose any weight, but he didn’t gain for a year from 1 1/2 to 2 1/2 years old.
    http://tofthouse.com/pages/GettingStarted.htm

  2. Kara

    For us Owen was hefty and healthy enough that we weren’t too concerned about weight loss compared to the problems we were having with him being allergic to the tube. Watching your child starve themselves is not fun and Apollo might not be able to handle the weight loss. Tube weaning also takes up more time than tube feeding for quite a while. all my time was spent getting food and liquid into him plus we were still using the tube too. We took Owen from 4 feeds a day down to none in about 6 weeks though.

  3. jessilee

    Another blogger( http://thisfish.com/ ) I read has her son in a feeding rehab in Texas. He just…stopped eating. He’s an infant and there’s no medical issues like Apollo has, but perhaps something a little closer to home would be an option? I only mention it because you mentioned it. I’m sorry this didn’t fix his issues 🙁 It’s been such an uphill battle I was hoping this would be a partial magic bullet for him. At least let him sleep well. I hope it continues to improve.

    • bakersdozenandapolloxiv

      Good to know. I have wondered if Texas Children’s Hospital has a program…

  4. Sarah

    A colleague of mine took her son to a program at Johns Hopkins in Baltimore. I think he was 1 1/2 or 2 at the time, and they were in Baltimore for a year, but he eats well now at 6 or 7

  5. Michelle

    A little guy in my class is 4.5. Last year when he started at 3.5, he was totally dependent on his gtube, even though his doctor had given the go ahead on weaning. He met with a feeding therapist several times a week in his home I believe. He was in our half day program, so he never needed a feeding while at school but snack was offered to him daily. Towards the end of the year he would sometimes nibble strawberries, and would hold Goldfish crackers in his mouth but spit them out. He came back from summer vacation totally different- he at least tries everything offered to him and has eaten full snack almost every day. I believe he still needs the tube at night, but he has made huge strides! I’m not a doctor by any means- but I think always offering, having a place for Apollo at the table, etc, is perfect. Kids seem to know when they are ready for things! I love reading about Apollo’s progress!

  6. Tony

    Have you considered a tough love approach? No more tube feeding and he must finish meals etc. He’ll scream and cry and think you are the worst parents on earth, but he’ll get used to eating proper amounts of food orally.

    • bakersdozenandapolloxiv

      Well, we tried something very similar in February. He went three weeks with no tube feedings. He lost weight the entire time and was tired, cranky and unable to sleep at night. The reason I am considering an intensive feeding program is to hopefully get him “over the hump” and able to maintain his weight without the tube feedings. Believe me, an intensive feeding clinic would be a tough love approach.

    • bakersdozenandapolloxiv

      Thank you so much for this! It is very helpful to see the follow-up and know she was successful.

  7. Vivian

    has Apollo every said how long will i have to be tube fed, does he want to get rid of it? just curious how he feels about it.

  8. Alex

    Hey there! Your post made me think of another blog I follow, Confessions of the Chromosomally Enhanced. Their daughter Josie was g-tube dependent for quite awhile without a medical cause that would prevent her from eating solid food, just like Apollo. Josie’s tube is actually removed now and she eats 100% orally after success with ABA therapy methods…here’s part one of their story: http://www.confessionsofthechromosomallyenhanced.com/2014/02/freedom-from-g-tube-dependency-part-1.html?m=1
    and part two: http://www.confessionsofthechromosomallyenhanced.com/2014/03/freedom-from-g-tube-dependency-part-2.html?m=1

  9. Julia

    Hi Renee, If you do end up up going, be sure to let me know. I’m from Austria and currently live in Switzerland – so I can help with both countries 🙂

    • bakersdozenandapolloxiv

      Will do, but darn it, now he’s eating pizza and everything 😉

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