Since we came back to Saba I decided to revisit the idea of an intensive feeding clinic. After talking to more clinics than I care to count, I have discovered some interesting things. Not one clinic will actually give you any statistics on their "successes." To the extent that they claim "success" it means getting kids off of g-tube feeds, either completely or partially. Not one of the clinics could give me any idea of their success when asked how kids like Eliza do, who cannot chew and has a severe dysfunction of the oral phase of swallowing, coupled with sensory issues, behavioral issues and a palette that is as high as the Grand Canyon is deep). Really now, if these places, that charge about $8000 a week (or $96,000 for the full 12 week program), are the be all and end all of feeding disorders, then why are they so darn shy about reporting their success rates?. One clinic suggested they would only take Eliza if I had a g-tube put in her so they could stop all oral feeding and "start from scratch." Don't think we'll be going there anytime soon. My personal favorite was the clinic that mentioned, in passing, that they find force feeding to be successful in some cases. Not for us, thank you. I did ask the clinic that thought force feeding was nifty if they did any long term follow up to see if these kids developed eating disorders as teens or adults, and they couldn't answer that.
So for now we will stick with our daily feeding therapy where we try to get Eliza to eat by making the experience pleasant, and I figure I can find a better way to spend $96,000 to enrich Eliza's life (now of course I just need to work on winning the lottery to get that $96,000).
Here are a few random vacation photos:
Force feeding preemies scares me. They already have so many strikes against them, why add another one?
ReplyDeleteI find it really odd that they can't give you any statistics on their success rates, either.
-Sarah M.
http://sydney_lou_who.livejournal.com
You can get some statistics on the success rates on getting kids off g-tubes, either fully or partially, but not one of the places I spoke to would say how successful they were in getting kids from an oral liquid diet to solids (teaching them to chew and swallow). The answers ranged from "it really varies from child to child" to " success can mean different things to different people." I really was looking for more than some philisophical nonsense like the last response.
ReplyDeleteSimple numbers like: "in 2006 465 children entered the program on oral liquid feeds alone and one year later 356 children were getting 50% of their nutrition from table foods." No luck getting an answer that remotely resembles that.
I agree with you that force feeding is a horrible idea and I wish that the clinics would be more forthcoming concerning texture/aversion issues rather than g-tube to oral stats.
ReplyDeleteAnd I also agree that this is not the time for Eliza to do an inpatient boot camp. But what I would say is this: as a mom of a food-challenged kid, my sense is that Dr. Eicher at St. Joseph's was absolutely on target about something really important; namely, kids don't just refuse to eat, they refuse to eat because something is wrong. I am grateful for that rather obvious assertion because it got us thinking about what could be wrong. She planted the bee in our bonnet about the constipation issue (which leads to vomiting), but also set us off in the direction of figuring out what is causing that constipation which I am coming to believe is related to the allergies that we're only now beginning to get a handle on. So my advice would be this: can you guys get some creative puzzle-piecing help from Eliza's doctors (or find doctors who might think creatively)? Because at the root of Eliza's problems is something somatic---I just wish I could tell you what. We were lucky that Dr. Eicher got us thinking about this. She might be someone to talk to, not saying that you guys should do the inpatient there---indeed, until the medical stuff is taken care of I don't think they'd allow you to do that, and just treat you outpatient instead. Anyway, that's my two cents, and obviously you can disregard my meddling!
Abby,
ReplyDeleteI value your input and certainly do not consider it to be meddling. So please do keep providing your input!
I agree with Dr. Eichner's commnet that there is a reason kids don't eat. In Eliza's case the reason she does not eat is her sensory integration disorder coupled with the mechanical problems (so to speak) she has in the oral phase of swallowing. Eliza's constipation is almost non-existent, her vomiting generally only occurs when she is so upset that she begins to vomit and none of her allergy testing last year came back with anything positive. Her reflux is controlled well with 15 mg of prevacid and her GI tests show nothing abnormal.
I really don't talk much about Eliza's sensory issues, because I am tired of people's negative comments about it and their assumptions about Eliza when I do talk about it (and frankly their assumptions that I am just making a mountain out of a mole hill).
Eliza's world is very overwhelming and often painful to her. She can barely tolerate anything on her feet, she can't have bubbles in a bathtub; she can barely tolerate having her face washed and can't tolerate having her teeth brushed; it took her over a year to get used to the sound of the doorbell; she has a very erratic sleep pattern and when she "sleeps" it is never the peaceful sleep you expect of a child. She can't sit still for more than a few seconds and I have never been able to quietly sit with her and read her a book. It took months of therapy to get her to touch play-doh and almost a year for her to tolerate touching yogurt. There are more textures of fabric that she cannot touch, than she can touch. She can fall hard and never cry, but becomes extremely upset if a blanket touches her feet. I could continue this list for quite a few more pages if my typing skills permitted.
This is all compounded by a mechanical issue (her extremely high palette) which prevents her from chewing food properly and her difficulty with the oral phase of swallowing. Problems with the oral phase of swallowing are far different than aspiration problems and from what I have learned are very difficult to treat since it is no easy task teaching someone how to chew in a rotary fashion and to lateralize their tongue and chewing pattern.
But she is making small strides in the right direction. Tonight she actually touched a piece of banana to her mouth, twice. Doesn't sound like much, but here that was a pretty good night of feeding therapy which caused both the therapist and I to celebrate a bit. She can't tolerate purees/ pudding/mashed textures because they are more sticky, for lack of a better description, than yogurt and she can't manipulate the residue of the puree/pudding/mashed textured food once it is in her mouth. So trying her with these types of foods is not productive at this point.
Anyway, not sure the point is of all of this rambling, but there it is folks.
But hey on a positive note ... she has learned how to climb out of her crib. Great!
This whole food thing is so confounding, isn't it? I'm not sure what's worse---our allergic and refluxy stuff or Eliza's sensory stuff. I had no idea of the extent of it. In some respects, we're lucky that Hallie's sensory stuff is in the direction of seeking (the kid loves to play in her vomit... ewwwe). What a miserable set of circumstances and ultimately it boils down to the same thing: for whatever reasons our little kids who have overcome so much in their lives and who are such fighters just can't seem to accomplish this one little thing that would make all of our lives just oh so much more tolerable, not to mention would allow us to get some sleep.
ReplyDeleteIn my never ending effort to see some humor in all this, I had considered myself quite lucky that Eliza never played with her vomit, that is until she decided it was OK to play with yogurt. Seems yogurt and vomit have about the same texture. Nice.
ReplyDeleteSome of Eliza's behavior is sensory seeking and from what I have been able to learn/read and/or been told, one behavior is not always exclusive of the other. So for example, while Eliza loathes to touch a whole mountain of fabrics, she will rub silk scarves and satin ribbons on her face, sleep with ribbons in her hands or suck on satin ribbons. Also her constant on the move behavior falls into the sensory seeking category. Strange combination.
You have done some great research. I'm astounded at how much it costs to teach a child to eat. It bothers me no one follows up w/ these kids later in life. A "success" does not always mean that 5 years later it still was. What we need is to find a feeding therapy doctor that has had a preemie and been through this. So why not spend that $96,000 on a medical degree Anne?! Probably a great investment as you'd have us ALL lined up at your door!
ReplyDeleteI think you are doing the right thing by waiting it out a little longer.
Liz
Thanks for your response to my question on how to cope on the Preemie blog. I really appreciate it. I know all about the "feeding" issues as both my boys are really, really hard to feed. I'm happy if we get close to 16 ounces in each by the end of the day. They are gaining weight with the higher calorie formula but we'll see what happens with solids. All my best, Michelle Hanna, Mom to Noah and Jonah, 23.6 week twins
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