Seattle Feeding Clinic {Update}
Yesterday was Apollo’s fourth visit to Seattle Children’s Hospital’s top-secret (it would seem) feeding clinic. The ultimate goal, of course, is to have him weaned of the g-tube, eating regular meals and growing.
Apollo has a lot of feeding issues. It is impossible to say where the physical issues end and the psychological issues begin. For years we were told he was “fine” and there was no reason he couldn’t just eat…but the doctors were wrong. Now he is fixed (in theory at least), and still struggles to eat. We are involved in two Facebook groups for people with vascular rings and even in that circle, his feeding issues are extreme. Not being able to be 100% confident that he doesn’t have a remaining physical issue, makes it extremely difficult as a parent to enforce “rules” around eating.
Apollo will rarely eat anywhere other than my lap (on reason for sending him to school). He rarely eats a full meal. He is choosy about what he eats and when…and most importantly he struggles to eat enough to grow. He is often tired and this may well be because he doesn’t take in enough calories. We decided at yesterday’s visit to go back to using the tube, but a little differently this time.
The dietician wants Apollo eating six times a day: three meals and three snacks. All of his calories should be consumed during these meals. Each meal time is to have: a protein, a carb, and a fruit or veggie. He is supposed to be offered milk (or in his case, likely soy milk). Whatever part of the milk/milk substitute he doesn’t drink (I’m guessing all of it), is to be put in his tube. Right now we are supposed to have those three items (protein, carb, fruit/veg) be his preferred foods. We brainstormed and the dietitian drew up a chart of the foods he: always eats, frequently eats, and occasionally eats. This was to be our plan for what foods to offer. The foods Apollo “always” eats (as in daily were):
water
juice
Kind of a short list, yes?
I told the dietitian I wish he were one of those kids who only ate three items. At least then I would know he would eat something…
So, that’s the new plan. It will require a trip to the grocery store and some chart making before I am ready to implement it. Also, the dietician wants Apollo to be tube-fed at school, for those meals, and I’m really not sure I want to do that.
Trust your hunches. Do you like the dietitian?
Like the previous commenter said, definitely trust your gut. I agree – it is so hard to enforce rules when you don’t know what exactly is going on inside. My son received his g-tube over 2 years ago. He has autism, sensory processing disorder and gastroparesis. It’s a mix of physical, psychological and sensory issues with eating. Progress with oral intake has been so slow and difficult. Now I’m rambling, but I started all this to say that you’re doing a great job, I understand how hard it can be, and trust your instincts. One thing I’ve learned in my son’s medical journey is that my instincts have never led me astray.
I’m glad you have someone to brain storm with. You’ve had a long road with feeding Apollo.
Please quicky pass over this next part if you’ve already heard about and researched milk alternatives. Though soy is the cheapest and most well known, soy in larger amounts has been called into question, especially for boys and men. (Something to do with it mimicking a hormone and causing an imbalance)
There are many other alternatives, but I can’t speak with authority as to which would best for Apollo’s needs. I use (unsweetened) coconut milk. It is actually better to switch them up, apparently, but I tend to stick with one for long periods.
Thank you, Elizabeth. We are well aware of the concerns with soy…but the formula he has been on since the tube was placed it soy based. Sometimes (and often with Apollo) we feel like we are choosing the lesser of two evils. The dietician specifically didn’t want him on coconut, rice or almond milk, because she said the soy had more fat. I put milk/milk alternative in the post because I not sure which we will be choosing at this point.
I do appreciate your comment though!
Have you seen this? http://www.yumit.io/ I don’t know if it would help, but we saw it and thought of him!
There is more risk to soy than just the phytoestrogens; this article (http://www.thehealthyhomeeconomist.com/not-just-bad-for-hormones-how-soy-harms-digestion-and-stresses-the-pancreas/) suggest soy may negatively impact digestion of proteins, probably what Apollo does not need right now.
Hmmmmmmm. This sounds hard. Praying for you!
Why do they want him tube fed at school? I would be very hesitant to do this because he is seeing his peers eat and this may encourage him to eat. Also, being tube fed at lunch will make him a target for teasing and he won’t be able to have “fun” time during lunch talking with his friends. I don’t know if you wanted my opinion, lol. I just feel sorry for him if he has to do this and be the “odd” kid. I sure don’t think he is, but you know how some kids can be.