Extreme reflux or something else?

By sweater Thursday, April 16, 2009

- A
- A
- A

My son is 9 months old (7 months adjusted) and has had extreme vomiting since he was 2 months old (term). His vomiting has been so bad, he's gone from an NG tube, to a G-tube with failure to thrive, and now a GJ-tube. We leave his g-port of the tube always open and venting out any contents into a folded diaper. He STILL vomits anything and everything he can possibly get out of his stomach many times a day. He has a stomach emptying test, MRI and motility test all coming up in the next month. The specialists are stumped. Some say it's still very extreme reflux that could still go away, and some say it may be something bigger. He happens to be the smaller of identical twins, with some developmental delays, torticollis etc, but in general the sweetest thing ever that slowly but surely is developing all major motor functions (rolling over, sitting up etc). He's on a continuous drip of Neocate formula, and we've tried every drug you can think of.

This poor baby suffers multiple times a day with violent vomiting, retching and heaving. It breaks your heart.

My question - Is it possible that this really is just EXTREME reflux with the hope it will go away?

Thank you,

Annie

Jaxon - 9 months

Jaxon

Comments (5) | Add comment

Jan Gambino, Health Guide

4/16/09 9:03pm

Hello Annie,

First let me say Jaxon is just too cute for words! I have talked to hundreds of parents from around the world and it still amazes me that there is a new reflux story out there. I thought that I had heard every one by now...

It certainly is extreme vomiting to go to a j tube and still have vomiting. I am sure you have tried the slowest drip possible. I used to set the drip rate very slowly for my daughter's g tube when she was sick. It was like having an IV it was so slow!

One thing that I used to do to test her tolerance for a feeding rate was to start at the slowest rate and move up very gradually. If I got to retching or vomiting, I would back up to the last setting. I wonder if the doctor has worked with you to concentrate the calories so you need less volume to get the nutrition he needs. I imagine you and the doctors have tried all of these things!

I am eager to hear the results of the testing. Has the gastroenterologist suggested a nissen fundoplication surgery? I am guessing that he is not a candidate for a nissen fundoplication surgery because of the severe vomiting? Just wondering about that.

There is a condition called cyclic vomiting syndrome that causes bouts of severe vomiting. It might be worthwhile to ask the doctor about it.

After the testing, if you and the doctor still need answers, it might be time to seek a second opinion from a more specialized clinic or hospital. I could help you with that although your doctor might have some excellent resources too.

Take care and let me know how you and Jaxon are doing.

Jan Gambino

The Reflux Mom

www.refluxmom.com

Brandi Polatty

4/16/09 10:46pm

First, let me tell you how sorry I am that you're going through this. Second, let me tell you that you're not alone.

I have an almost 4 year old son that has a GJ tube and has complex medical problems.

Disclaimer: I'm not a doctor, nurse, or any other medical professional and I'm not trying to act as one. This has been our personal experience and discuss any changes in care with your doctor first.

The first suggestion I want to offer you is something called a farrell valve. They are gastric pressure bags. You can plug it in just like you do the feeding delivery set and it allows the stomach (and intestines in our case) to vent while feeding without losing fluids. When you vent into a diaper it's like your child is vomiting and you open up a whole new can of worms with dehydration and electrolyte problems. So, make sure you replace fluids if you aren't already. My motility doc said anything over 100cc's needs to be replaced. Again, the nice thing about the bags is that it lets the air out but lets the fluids go back in and is so much less messy!! You'll need 2 bags if you're going to do both G and J.

What meds is he on? For us, we use Erythromycin (low dose for motility), Prevacid, and Periactin to help with vomiting. There are other drug options if you get a motility diagnosis and these don't work. For us this combo works well. However, Noah doesn't just have reflux. He has delayed gastric emptying, chronic intestinal pseudo obstruction, and all of this is because of a mitochondrial disease. His started as really extreme reflux. The nissen fundoplication made him quit vomiting, but didn't make the wretching stop and he had feeding intolerance until we found this concoction.

Have you had reflux studies such as a pH probe? I know you're about to do motility testing. What tests are they going to do? Who is your doctor (just use dr. first initial and location---I know of most of them). We see Dr. N in Boston for motility.

What's your rate of the Neocate? Both of my children use that. Noah is on Neocate, Jr.

Is the vomiting on a cycle? For instance, does it have a pattern that it fits and you can set your clock by it? Noah's pretty much does. Cyclic vomiting syndrome can cause this vomiting, but it's usually predictable.

I guess your question is one I still haven't answered. My personal experience was that the child I had with extreme vomiting requiring a GJ tube had an underlying disorder. My younger child has severe reflux (known from a pH probe), but he has no tube and no failure to thrive. We believe he also has a mitochondrial disease, but he's so much more mild.

It's so hard to say. I think it's something you need to follow you gut about---do you feel that he's got something else going on, but you just don't know what? I felt that way about both children and I was right about both. I think that's a mother's gift---to know your child so well because you have to, to be able to protect them.

Just make sure you ask for the tests. Research like you're doing now. You can't learn enough. No one is going to look out for him like you will look out for him.

I highly recommend Dr. N in Boston at the Motility Clinic at Children's. I believe he is the best motility doc in the country. That's why we went to see him. We live in SC.

It's funny, your doctor's are stumped. Mine were too, but once we saw the right specialists they went right to what was wrong---they knew before they even saw him. You're just gonna have to find those right people. I promise, you're not alone. I really think there is probably someone out there that would know just what to do with your little one.

I hope this has helped. If you don't listen to anything else I say, please call your home health co and ask for the farrell bags. You'll wonder how you've lived without them for so long.

Katie Beckett--have you filed for this. If not, the GJ tube automatically qualifies you in SC for Medicaid as a secondary. Pays for all meds, our formula, equipment, services, etc.

One last thing, do you have a zevex infinity pump? If not, I highly recommend one of those as well---especially since he's getting mobile. It comes with a super mini backpack and just really makes a difference---you probably already have one, but just making sure you know.

Ok, when Jan Gambino reads this it will all sound familiar. I can't take credit for most of my ideas as Jan has been my goto person and helped me with the resources. The experience with the J tube unfortunately is all mine though.

Take care-

Brandi

Jan Gambino, Health Guide

4/17/09 5:58am

Brandi,

Your message is full of helpful information and insights. You are MY go to person for jg tubes! Thanks for the valuable info. You are an amazing Reflux Mom!

Jan

sweater

4/17/09 9:11am

Ladies...thank you for your responses...I didn't think I would get any and that I was "shooting in the dark" with that post. So it was a relief to see these...thank you.

To answer a few of your questions (if I can remember them):

Dr. Li at Childrens Hosp of Wisconsin is our primary GI specialist. We've seen Dr.Martinez and Dr.Sood as well. Dr.S will be performing the motility study. Dr.Li has ordered the emptying test and MRI. I really feel that Jax has an emptying problem, but we've already treated as if he does with no luck (drugs, botox injections).

Drugs we've tried: Reglan, Cyproheptadine, Erythromycin (starting up again),Zantac, Prevacid (currently use), Zofran (currently use)...what else, what else...

I don't have the feeling that he could have Mitochondrial Disease. Not that you're implying that Jax does in fact have this, but I of course googled it IMMEDIATELY to see if it fit him. I would assume that would affect his identical twin brother since it's a genetic thing...and he doesn't have all the symptoms...but a few (low muscle tone, delayed development) but those are vague. It's hard to tell since Jax was born so premature and weighed only 2.5 lbs at birth.

Fundo: We've been advised against this repeatedly by many many physicians, therapists etc. Jaxon sees an occupational therapist, chiropractor, GI, Pulmonary (which we may graduate from very soon), and just recently starting out slowly with the feeding clinic to start getting him familiar with the idea of eating, so one day it's easier to start that road.

Formula: Neocate with added Pedialyte to replace lost fluids. We mix it up to 26 calories (but the pedialyte dilutes it down to 22) and run it at 34ml's/hr. We use the pump that was mentioned with the little red backpack.

QUESTION: Can I use the farrell bags with the backpack??

Jax has never had issues with his diarrhea or bloody stool or anything like that, so I was surprised to hear the other specialist say it could be a possible obstruction of the intestines (knowing he didn't mean physical obstruction). So that's what the motility study is for I suppose. Can this study give us OTHER answers possibly?

Thank you for your time to try and help me. I take all suggestions, opinions, ideas VERY seriously. I research each one and bring them to the doctor. THANK YOU a million times.

sweater

4/17/09 9:14am

OH and no...the vomiting isn't really on a cycle. The docs have tried to catch a cycle, especially during his last 2 wk stay in the hosp.

He's doing rather well overnight now (since seeing the chiro). He'll go 4hr stretches early and falls apart more in the wee-hours around 3/4am. Although his congestion (lingering cold) is what gags him into vomiting...he seems OK with vomiting overnight lately....hmmm weird. Don't get me wrong...we are still up with him screaming what seems to be pain...I don't get any of this.

Extreme reflux or something else?

Ask a Question