Need GI Advice

[Lifeisgood]

Well, I am getting very concerned with Harlie's chronic vomiting. It has definitely gotten worse in the last few weeks. Literally, she vomits 40+ times a day now. Today is the worst I’ve seen. She is now vomiting black stuff. Is that blood? She is miserable.

She's been on Pediasure for the last month or so. I am starting to get concerned that there's another issue. This just doesn’t seem like regular reflux and it’s getting worse. Is that normal?

She was on Similac Advance before that. We tried Alimentum and something else I can’t remember the name of in the past – none helped. We have a GI appointment at the end of January. I’ve read some of your posts about pH probes and such. What tests should I ask for? She’s had an upper GI before and it showed slow emptying. She’s on Reglan and Prevacid. She does not have a Nissen.

Is there a way to find out what is causing the vomiting? I know that sounds like a silly question – but a Nissen just prevents it from coming up, it doesn’t stop whatever is causing the vomiting, right?

I would love some help on knowing what questions to ask.

Thank You!!
Christy

[JWorthington]

You're right, a nissen is only an anti-reflux procedure - it just stops anything coming back up. 40 times a day sounds like an awful lot to me and certainly isn't good for a little one - she needs to be assessed by someone quickly IMO. I forget - does Harlie have a g-tube or ng tube?? if so, can you aspirate and check the ph? Black does not sound good, we used to have that and it looked like blood to me too, we had to stop the Reglan and switch to Prilosec. You definitely need to see a GI doc.
Poor Harlie, I hope she gets a break soon

Juliex

[aydenava]

Ayden has a nissen & it only stops the food from comming back up,so vomiting stopped & retching started(dry heaves) which ultimatly led to a paraesophageal hirnea (3rd of his stomach is in his chest)the G-T anchored it from completely moving in,for three yrs we took him to dr after dr(GI,pulm,ent,feeding clinic,ped.genetics)we tried reglan,eritromycn,dif.formulas,continuous feeds,small boluses,nothing worked!!! PH probe,gastric emptying study,upper GI through G-t & Ng tube,we even had a scope of his esophegus & stomach & NO ANSWERS,NO REFLUX!! Finaly i had enough with our hospital & went to cincinnati,they saved his life by putting him on a pureed food diet through his G-t,his retching went from 20x per day to ZERO ITS BEEN 11 MO. & STILL NO RETCHING! Eventualy his stomach was going to suffocate him if we stop the retching & he to had blood from all of the were & tear his body was going through everyday.A freind of mine who lives by me her son also has vomiting issues,no nissen,but has a gt & he started this diet too & he has no more vomitting,blood issues & is finaly gaining weight.I cannot express how much the diet has changed our lives,it always revolved around his feeding issues,cant move after he eats or he would get sick,too freedom from all the pain he was feeling with the stupid retching,all because of the formula,THATS ALL IT WAS!!REAL FOOD SAVED HIM!

[drct1245]

So sorry to hear how bad it's getting. Our biggest 2 issues that have increased vomit/spit ups is teething and lack of pooping (sorry TMI). Have you tried pulling her food for a day and just giving her pedialite? Although she isn't sick, some times Ayden would just get in the habit (don't know how else to describe it) and by pulling the food he wouldn't vomit for a day, things would get better. But we were also able to feed him at night as he never had any episodes at night.

Have you had a stomach emptying scan? It's a LONG procedure, but it makes sure the food moves as it should. Whey Ayden's spit ups were at his worst, they couldn't believe it was normal.

Ayden gets prune juice almost every other night to make sure he poops. Now that he is older, probably in the last 3 months, if he doesn't poop one day and has a big one the next, we don't worry and he doesn't spit up. Before that, if he didn't poop one day by 4pm the next, you were almost guaranteed a good spit up.

You are correct on the Nissen, unless the reason it is coming up is b/c of pressure on the tummy and the flap to the stomach not closing properly.

Make a journal for the Dr as to what she was doing when she spit up, was it right before, during, or after feeding. Did she need suctioning. That way they can see a pattern, which will help them know where to start.

We have gone from 2-5x a day of spitting up to less than that in a week. And usually it's b/c he needed suctioning and he really had to work at coughing to get it out. Because it's for that reason, we put a drop of saline down after we suction.

Hope this helps some... sorry it's a book. But this is a synopsis of the past year for us.

[Jordansmom]

Blood can be black, sometimes it will look like coffee grounds. Because it's black (I think) just means it isn't fresh. I would want to get her in asap as well. Tell them she is vomiting black. From what I understand, nothing stops reflux. The nissen is the only thing I know of to keep it from coming up, and that is where a lot of damage occurs. Prevacid helps a lot w/pain & carafate is good for healing, it coats & protects & acts as the protective lining. Jordan is on it regulary because his stomach bleeds without it. Hope someone will get her in soon to give her some relief.

[Kaylie]

Hi Christy,
Wow thats alot of vomiting. before the food change how much was she vomiting? Do you see Docs at MCV or somewhere else? can they get her in sooner? She has a gtube right?

[Ainsley's Mom]

Good god! How in the world does she gain any weight and grow? I would sure hope gastroenterology could do something to help Harlie. But I know, Ainsley went a year vomiting 1 or 2 times every day. Hers was almost always triggered by coughing. Interestingly, we started putting her almost exclusively on her stomach and she coughs a ton less and has vomited only once in 3+ weeks (plus 15cc spit ups). I think being on her back was making her tongue fall back. And she has a granuloma that (I think) was being irritated. I hope you find some answers.

[Lifeisgood]

Originally Posted by JWorthington

I forget - does Harlie have a g-tube or ng tube??

Yes, Harlie has a g-tube.

Originally Posted by drct1245

Have you had a stomach emptying scan? It's a LONG procedure, but it makes sure the food moves as it should. Whey Ayden's spit ups were at his worst, they couldn't believe it was normal.

Ayden gets prune juice almost every other night to make sure he poops.

No, I don't think she has had one. She had (I think) an upper GI when they put in an NJ tube in August. The doc doing it said it takes a minute to put one in - it took 45 minutes for Harlie!!! He said that she had slow emptying and that possibly one of her valves was spasming and that's why he couldn't get the tube into the jejunum. Then the NJ tube would not stay put so we gave up on that.

And to add to the problem, Harlie has bum issues and had an anal repair in October (her hole wasn't in the right place - poor girl). She can't push (sorry TMI) so it is really important she doesn't get constipated - that would not be good for her at all.

Originally Posted by aydenava

Finaly i had enough with our hospital & went to cincinnati,they saved his life by putting him on a pureed food diet through his G-t,his retching went from 20x per day to ZERO ITS BEEN 11 MO. & STILL NO RETCHING! Eventualy his stomach was going to suffocate him if we stop the retching & he to had blood from all of the were & tear his body was going through everyday.A freind of mine who lives by me her son also has vomiting issues,no nissen,but has a gt & he started this diet too & he has no more vomitting,blood issues & is finaly gaining weight.I cannot express how much the diet has changed our lives,it always revolved around his feeding issues,cant move after he eats or he would get sick,too freedom from all the pain he was feeling with the stupid retching,all because of the formula,THATS ALL IT WAS!!REAL FOOD SAVED HIM!

WHAT?!?!?! That is crazy! But gives me SO much hope! And I just saw a post not too long ago about pureed diets. Guess I'll be doing a search very soon!!! I asked my OT about GI docs and she told me that she thought VA didn't have much to offer and that if I really wanted help I should take her to Cincinnati. Guess you made me a believer.

Originally Posted by Ainsley's Mom

Good god! How in the world does she gain any weight and grow?

Seriously - I do NOT get it! We struggled for every ounce and she was vomiting less. She vomits more and gains weight. Go figure. I think she's probably 21 pounds now - which is crazy to me.

The thought of having less to NO vomiting makes me giddy. Today - I could not complete ONE task without having to stop and tend to her vomiting. I can't unload the dishwasher, read a bed time story to my son, she can't play, etc. without it happening. She vomited 5 times alone during her "nap". It really has gotten so much worse the last 2 weeks or so. My friends thought I was exaggerating until this morning when they came over for breakfast. They were shocked! And most of it is projectile.

We have an appointment with our nutritionist on Tuesday. I'll definitely be asking her about a pureed diet.

Keep the experiences coming! I just can't thank you enough!!!

[drct1245]

We too went to a pureed diet and Ayden really started gaining weight. We just mix jars of baby food along w/ some extras - it really only takes about 15 minutes max. We still give Ayden a bottle b/c that is what he will take orally, so we make 1,200 cals for 2 days worth of food. All in all Ayden gets about 1,100 calories and we barely get him to gain 1 lb per month.
I would call and see if they can get you in sooner and explain how much she vomits. They should be able to see you sooner. Our Dr has a PA that we see a lot.
Hope you can figure it out!!! And just when you do, Harlie will change it up!

[aydenava]

Here is the recipie from cincinatti if you want to discuss it with your dietition on tues its 1000 calories 2 jars (stage 1) gerber meat(chicken,beef,turkey,lamb or ham) , 1 jar (stage 2)plums or prunes,1 jar bananas,2 jars veggies (also stage 2) 2 tbsp olive oil ,6 tbsp baby cereal ,3 tbsp cornstarch,3/4 tsp lite salt,& 1 4oz cntr vanilla activia yogurt mix everyting together & you have 1 day supply of food (4, 6 oz feedings) you push it in slowly with a syringe & at the end of the whole feeding only flush with 10 ccs water,you want to keep the food thicker.Give 10 oz water throughout the day in between feedings. When you pull the food up into a 60 cc syringe stick it in a cup of hot water to warm it before you give it.I thought we would slowly wean him from the formula,but the dietition said the formula makes him sick,so just jump right into this diet & we did & he instantly stopped retching,from day 1.Good luck!!
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