Grayson had an appointment with a new GI doctor yesterday. I like our current GI, but have wanted to get a second opinion on Grayson’s issues for awhile now. He still throws up 2-3 times/day and gags, wretches, and chokes on his saliva throughout the day. Monday he had an awful night; he had several episodes where he woke up crying in pain, vomiting and coughing. So feeling desperate, yesterday’s appointment was timely.
I had been warned to expect a long wait with this particular doctor, so I braced myself for a long afternoon with my child who has about a 3 minute tolerance for waiting rooms. I was pleasantly surprised that the wait was not much longer than any other appointment. The doctor was nice, caring, and thorough.
Grayson has been on the same formula since he got his feeding tube, so we talked about trying something else. He didn’t seem to think that was going to make much difference, but I appreciated he was willing to try. He also put him on 2 medications- zantac since G sometimes throws up blood from his throat being irritated, and also a medication to decrease his stomach secretions.
Overall it was a good appointment and I’m happy with the plan going forward. I know Ryan was disappointed he didn’t have a miracle cure for the vomiting, but there’s just not going to be one. Again, we just need to focus on making Grayson comfortable.
In related tube-feeding news, I guess little sister is now in training to manage her brother’s care. Grayson’s tubing had some air in it, so I had to re-prime it. I turned for less than 10 seconds and she scooted over to all the equipment. Sigh. Life’s about to get very interesting!
A New Version of Me 
The way you describe Grayon's GI issues are pretty well verbatim what I used to say about D's. The gagging, the vomiting, the misery. Even the gj tube didn't make it stop. I can't remember if Grayson has a gj, but draining the stomach can be a huge help, especially overnight, and was the best part of the gj tube I think. Overall it was an intolerance to formula that was the culprit here, because once we got him off formula he was a changed child.I hope the new meds help. (Periactin worked well for us if no one's brought it up yet – made things better at least. It's typically thought of as an appetite stimulant but it also just relaxes things and aids motility.) I hope you can get that boy some relief and some for you.
I know surgery is never a great option, but I am curious as to why nobody has suggested the fundo surgery for him. My niece had it and it was a miracle fix for her. http://en.wikipedia.org/wiki/Nissen_fundoplication
I love your helper in training, so cute. Glad the appointment went ok and you like the new doctor, always good for a new set of ears and eyes. Xoxo
Ali – Fundo surgery is good for certain types of kids, mainly those who aspirate (so reflux/vomiting is damaging to the lungs). For a kid like mine, who was a chronic puker who does *not* aspirate, it would have just doomed him to a life of constant retching, without the relief of actual vomiting. It really depends on the root cause of the vomit (neurological vomiting really shouldn't be stopped, reflux vomiting can be, etc), and what sort of damage it might be doing as to whether or not it's a good option. In my area, it's really fallen out of favor except for cases of aspiration.
Yes, Grayson has a GJ. I think I will try draining the stomach again- didn't really help before but worth a shot. I just feel like I have no clear directions (from doctors) on how/when to do anything- it's so frustrating! Do you have a book or website you recommend on the blended diet. I'll be honest- the thought of it totally overwhelms me but I would like to do some research on it. Thanks 🙂
When he had a gj we used to just attach a farrel bag at night and toss it on the floor beside the crib. It mostly drained well – or you can use urine bags I believe. We never had guidance either, but it was just like "well, screw this, if he's going to puke it, let's just cut out the middle man and take it out".The Blenderized Food for Tubies facebook group is very very active. There's a forum associated but it's less active. There's a yahoo group too, but the person who runs it is a psychopath so though I'm a member I haven't check in for a long time. The book "Complete Tubefeeding" by Eric O'Gorman I hear is excellent – I haven't read it, because I was already firmly established when it was published, but Eric was one of the most helpful people to get me on the road with it. (Sadly, he passed away last year.) Really, the whole thing SOUNDS more overwhelming than it IS. It really truly is just .. pureed foods. You can do some through the j too, though I think most people do juicing for that.I don't know what formula he's on, but I know for us and an odd lot of other kids, the corn syrup solids seem to be the killer, and they're more than 50% of the makeup of things like Neocate. (It's not an allergy, it's just way too damned much of that one thing.) So even going to an organic, or an infant formula possibly fortified for calories could be worth a try. We did RTF Alimentum with benecalorie for awhile as we switched to blended, and even that was a world of difference. I just know, we were starting to bandy about the idea of TPN because his motility was crap and he was still puking everywhere, and it all turned around for him when we got him off formula. (Well, his motility is still crap, but not as crappy!) It seems like GIs just don't consider an intolerance to some things that are in formula – they focus on the milk and the soy and ignore the rest. So if the formula switch doesn't work, it might be worth bringing up next time.If you ever need someone to bounce GI ideas off of, feel free to email me. Really. cat419@hotmail.com
That makes a lot of sense.
I wish there were some miracle cures though! Glad you have a new plan, at least having options helps to keep you sane and feeling like you're moving forward. Hope the new meds and food help him.
I wish there were easy fixes for Grayson's problems. I know it's hard to see him deal with all that he goes through and not be able to make it all better. Having a mobile 2nd child definitely shakes things up in the house. I remember how crazy it was for me the day Graham finally decided to crawl!