GI Update: Running Out of Ideas. And Patience.
The Littlest Apple’s pediatric GI emailed me this week with the results from his gastric emptying study. His stomach is still emptying extremely slowly, and gastroparesis continues to be a big problem. Based on what we’ve observed, that’s no real surprise. In her email, the GI recommended that we meet with a pediatric motility specialist who may have some additional ideas about medications or treatment options. There aren’t very many pediatric motility specialists in the country, and we just happen to be fortunate enough to have one at our children’s hospital. While we welcome the chance to meet with this specialist (why wasn’t this suggested earlier, I wonder?), I also can’t help but feeling like our GI is out of ideas and kicking us to the curb. That’s kind of a scary feeling…the GI knows what is wrong, can’t really do anything about it, and is done trying. I’m also concerned that we’ll meet with this new doctor, and it will be another 2 years of waiting and trying other things (or the same ones again, as it seems we’ve tried most of the available options) and threats of feeding tubes looming over our heads. And then The Littlest Apple will wind up with a feeding tube right as he is starting kindergarten. I know I can’t control everything, but if we’re going the feeding tube route, I’d like it to happen sooner rather than later. I hope it doesn’t make me sound like a monster of a mom to say that.
The Littlest Apple’s appetite has been little to non-existent lately. I alternate between getting extremely frustrated with him for not eating (though I KNOW he’s not doing it just to spite me) and just completely tuning out his eating to KEEP from getting frustrated. Spending 30 minutes cajoling and pleading and pretending to be imaginary characters just to get him to eat a couple of grapes (true story, many times over, partly because he now requests feeding entertainment) is exhausting and makes me just want to go crawl in my bed and cry.
In the past, I’ve taken some comfort in the Boost 1.5 we give The Littlest Apple (which we call “milk”). This a complete nutritional supplement that somewhat makes up for everything else he ISN”T eating, provided he drinks enough of it. Which he never really has. I’ve mentioned before how we created this awful routine of letting The Littlest Apple watch TV while he drinks his milk. When he’s just sitting there watching the TV and ignoring his milk, we say “Drink your milk, or we’ll turn off the TV!” and/or pause the TV frequently to persuade him to drink his milk. That’s kind of a pain too, the constant policing of the milk. I’d much rather use that 20 mins of TV time to take a little mommy breather from the REST of life with a 2 1/2 year old.
But our formerly fool-proof TV bribe is no longer working. Now when we say “keep drinking your milk, or we’ll turn off the TV!”, The Littlest Apple hops down from the couch and turns off the TV HIMSELF. Now what?
i am so sorry that it is becoming so frustrating for you. i can not imagine how you are feeling but know you and the littlest apple are in my prayers and i will ask some other prayer worriors to pray…much love and hope to see you soon
thinking about you all, I cant imagine not having answers and I really hope this new specialist is able to give you some answers. you are being so strong and whatever happens the littlest apple has a great momma!
Oh, Cara. I can’t even imagine how completely frustrating all of this must be. I hope the new specialist is able to help you. I know it’s probably easy to discouraged, but I think you are doing such an awesome job! Finley is so lucky to have you for a mama.
This sounds like it would be extremely frustrating and I feel so bad for you and for him. I’m hoping you find find some answers very soon. All the best….
I was so touched by this post. I wish I had some amazing ideas of what he might eat! I understand “not being hungry.” You have two bites and just don’t want to eat. Kind of when you are so full that if you even THINK about eating one more bite then you feel sick to your stomach. I can absolutely see a child not want to eat.
I forgot, does he have allergies? Just to put some weight on, would he eat something like a few bites of sweet potato jacks? There is oil in them for fat, but it is in a pastry like kind of shell. Then of course there are smoothies that work well with me, adding protein if you can (a few bits of tofu disguised). Will he eat twice baked potatoes? Rice pudding? Those yogurts with yummy flavors… maybe if you freeze them and it will be like icecream? I love chobani greek yogurt and am able to tolerate it very well – it is rich but not too rich for a GP person like me. Potato pancakes? What are his favorite flavors/textures… things he can tolerate?
Cara– have you tried Bright Beginnings Soy? I mentioned it on my update post on another thread but wanted to mention it here, too. It emptys from Kirk’s stomach MUCH FASTER than the Boost 1.5 does and has 30 calories per ounce (which you can increase if you use DuoCal powder) and comes in the vanilla flavor that the Littlest Apple is used to. If you get it from diapers.com, you get free shipping when you order 2 cases. Anyway, it’s worth a try (if you haven’t gone down the soy road yet…).
Take care!
Jeanne (NaNa to Kirk, 33 months old)