Infantreflux.org | 4 Procedures to go....UPDATE

This topic has 11 replies, 1 voice, and was last updated 17 years, 6 months ago by Anonymous.

Viewing 12 posts - 1 through 12 (of 12 total)

Author

Posts
March 27, 2007 at 7:38 pm #28715

Anonymous
Inactive

So, took Gabby to the GI today. Since Gabby has had reflux for so long with no real improvement (except for those glorious 3 months when it seemed to disappear), they want to do testing. Gabby will be having an endoscopy and sigmoidoscopy with biopsies on Friday and a UGI and swallow study within the next month. I’m quite torn. I’m very interested to know if she has eos cells or just severe reflux. But, I’d also like to protect her from invasive testing and continue the sleepy feeds since so far it’s working.

But until we get results back, the doc wants me to discontinue solids as her reflux got much worse after we started them. So, I’m worried about getting her calories in as she obviously isn’t a great eater and solids was always a way of packing in some calories.

Also, I get the joy of giving her two enemas before her procedure. Fun! 🙁

So, I just wanted to update. Wish us luck. And if anyone has any antedotes from their testing about how it went, lay it on me. I need to know other babies did ok with it.

Kathy

GabbysMom2007-3-30 18:3:50

March 27, 2007 at 8:31 pm #28719

Anonymous
Inactive

Hi Kathy,
I’m sorry to hear things have gotten to the point that Gabby needs to have testing done, but I sure hope you can get some answers. Bryce hasn’t had any of those procedures done, so I can’t offer any advice on that. As far as the extra calories goes though, you might try fortifying her formula to add extra calories. That’s what we’ve always done with Bryce. You can do that by adding powdered formula to her regular formula (we use powdered goat’s milk). Just an idea! You’d probably want to ask your doctor or a nutritionist about it.

Good luck with all the procedures! I hope you find some answers.

March 27, 2007 at 8:35 pm #28721

Anonymous
Inactive

Good luck and please keep us posted.

March 27, 2007 at 11:15 pm #28752

Anonymous
Inactive

Carson had an endoscopy and biopsies done at the same time he had PE tubes put in his ears. He did not have to have an enema. We did not learn much except that the biopsies showed he DID NOT have celiac disease (my grandmother had it) and we also learned that his esophogus was not red and inflamed. It was pink but the pe tubes were put in and the doc said that he had been under for a few minutes while the pe tubes were being put in and that can make the esophogus pink and eventually red. Although it was not cheap at all, it did thrill me to know we didn’t have to deal with celiac and that his esophogus was fine. I call it my peace of mind procedure!

We had an upper GI with lower bowel follow through. That showed definate reflux but did NOT show delayed gastric emptying. Again – peace of mind procedure.

But we have never had to give Carson an enema.

It is nerve racking to count down the days til the procedures are here but when it is over, so nice to know the results. Good luck! Be brave! It was harder on me than Carson! I think the hardest thing is that the little ones can’t eat before the procedures! Good luck!

March 27, 2007 at 11:16 pm #28753

Anonymous
Inactive

I am wondering if you have thought about Neocate? Do you know if Gabby is milk or soy protein intolerant? Our specialist says that reflux and MSPI really go hand in hand. Just a thought!

March 28, 2007 at 12:31 am #28765

Anonymous
Inactive

Goodluck Kathy. I hope this can lead you to some answers. Hugs for Gabby

March 30, 2007 at 6:02 pm #29095

Anonymous
Inactive

Well, Gabby had her endoscopy and sigmoidoscopy today. It showed inflammation on the area above her LES in her esophagus and in the bottom of her stomach. Rectum, sigmoid, intestines and other parts of the stomach and esophagus all look fine. Basically they think she has severe reflux. (duh!) Doctor upped her prevacid to 30 mg and prescribed carafate (which I had to hint at to get – what’s with this doctor’s not offering something to soothe our kids pain?) They took biopsies so we’ll see if she has any eos cells.

Here’s a quick question for anyone who knows. Why is their inflammation in her stomach? Shouldn’t her stomach be able to handle the acid it creates. The GI made it sound like she has an overproduction and that’s why it’s this way, but it doesn’t quite sit right with me. Wouldn’t this be more of an allergy thing?

Another question for carafate users. How long do you give it before feeds? Our bottle says 1 hour but the GI said 15 minutes or so. She was also the one that said to try to give Gabby the bottle 15 min after the prevacid though and nothing about on an empty stomach, so what does she know.

As for the neocate, that’s our next option. It’s hard for me to believe that she is MSPI when she thrived on milk for those 3 1/2 months. She was born at 6lbs and is now 17lbs. But then again, I could be wrong and am willing to try it if it comes down to it.

Alright, there’s my update. You’ll be getting more when her Upper GI and swallow studies are over.

Kathy

March 30, 2007 at 7:51 pm #29102

Anonymous
Inactive

Thanks for the update. I’m glad to hear that they didn’t find anything other than reflux. I’m sure that’s a big a relief. I’m not sure about the infalammationin of the stomach. I would have thought that had more to do with allergies or intolerances than stomach acid, because like you said the stomach should be able to handle the acid, but I really don’t know. Hopefully some of the more knoweldgeable mommies here can give you some insight.

Good news about the 30 mgs of Prevacid and the carafate! I hope that helps her tremendously.

I hope the rest of her tests come back fine.

March 30, 2007 at 8:23 pm #29103

Anonymous
Inactive

the stomach inflammation would make me want to try the neocate. good luck.

March 30, 2007 at 9:08 pm #29104

Anonymous
Inactive

Goodluck with the new dose and the Carafate. Is 17lbs an OK weight for her age?

March 30, 2007 at 9:18 pm #29105

Anonymous
Inactive

Yeah, 17lbs (7.7kg) at 8 months puts her in the 25 – 50th percentile, which is where she’s always been. My doctor told me the rule of thumb is double their birth weight by 4-6 months and triple by a year. So we have one pound to go and four months to gain it in. She’s always been tiny. The females in my husbands family are all tiny. No one is over 5’2″ or over 115lbs.

How big is Alana?

March 30, 2007 at 11:59 pm #29113

Anonymous
Inactive

Alana was 9.18 kilos at 8 months…thats about 20lbs or so I think. She is super chubby. She was born at 34.6 weeks and she was 6lb 6 oz so she was big even then. We are tracking close to the 90% I think. She’s a bit of a shorty to, at about the 25%. I am going to get her involved in sports pretty early cause I think she might have a hereditary trend towards plump (all the females on my side are this way).

I’m glad to hear she is gaining well despite all her trials, at least this is one thing you don’t have to worry about.
Author

Posts