Wednesday, June 2, 2010

GI appointment update

I was able to get Jax into the GI specialist at Children's Hospital this morning.  I actually got a lot of new info today that I wasn't expecting. I thought for sure the doc would say it's reflux and to feed Jax smaller meals more frequently and just set up an appt to have a surgeon look at his stoma site (the feeding tube hole in his tummy).

Well the doc actually does not think Jax is displaying typical reflux. He thinks it's a stomach emptying problem from the virus he had last month. He said that kids with weakened GI systems tend to have sensitive stomachs for a few months after bad viruses like that. He also wants me to "clean" Jax out with laxatives (I have a natural one) for the next two days since Jax showed a lot of stool on an xray while inpatient last month. He said that children will sometimes exhibit "diarrhea" when they're constipated and the fluid is just moving past the solid poo (sorry for that description).
So my plan of action is to try and flush out his system for the next day or two and see if that helps his tummy, and if not, then he wants to try and get the drug Domperidone into him to help him get thru the sensitive tummy. This drug is illegal in the US, but not in Canada. The reason it's illegal is because it caused heart issues with some elderly people and it was shut down. This drug is safe as long as a doc is compliant with treating proper candidates. I actually heard from a lot of my online MoM friends who have used it or are using it for laxation. None of them had any side effects, and the drug isn't supposed to cross the brain barrier like Reglan does. Which brings me to total confusion as to why Reglan is legal... I don't get it. I've wanted to try this drug since Jax was in the NICU, but we thought we couldn't get it, well my doc has finally found a pharmacy in IL that can compound it. This drug is used to help with vomiting/nausea in patients who have slow emptying stomachs and that sort of thing. (sigh... we'll see)

Ok, the bleeding of the stoma site is not good. The doc does want me to make an appt with a surgeon to have the hole reviewed to see if we can keep it, but in the meantime, the doc wants me to mix up Carafate (pill) w/ water and cover the bleeding part 3x/day. He thinks it's an ulcer or at least something that's irritated enough to need this cream put on it to protect it.
Jax's weight was decent. Almost 22lbs, which for his height (close to 31") shows an almost perfect ratio. The doc didn't really like that Jax wasn't independently walking yet since he's been cruising on his feet for over 4 months, but I didn't know what to tell him other than PT thinks his right side is weak from the torticollis and we're fighting with insurance to get more PT sessions.

Jax of course got sick and vomited all over himself and me while leaving the doc's office and the nurse said, "this is a crazy way for you guys to live, I hope you can get that drug". Hmmmm.... I'm not sure how I feel about it since we're trying to remain "drug-free". I've tried contacting the holistic medical facility three times via email in the past week, but haven't heard back. I'm thinking maybe my email contact (Dr. Hicks' assistant) may not work there anymore or has been on vacation, so I'm going to call tomorrow.

I should say that I left the doc's office feeling hopeful. If his "opinion" is correct, then Jax's vomiting should shut off again at some point. Oh I hope he's right. He told me to keep my chin up and to keep forging through.
I just hate that all GI issues with kids seem like trial and error. You never truly feel like anyone REALLY knows 100% what is wrong or how to fix it or whatever. It's always a game of roulette and hope...

1 comment:

Christina said...

Yay for domperidone!!! I lurve it!! I take it as an adult but my reflux is actually increased by delayed gastric emptying so it works great at moving things along(I do find that the nausea is worse when things are not moving)
And there is hope that one day the barf will go away! One of my non twins had such bad reflux for nearly 3 years it was a slow process actually worsened by Cyclic Vomiting Syndrome(just diagnosed) she has outgrown both things and is a happy 10 year old!