Posted By Posting
Sep 19, 2010
Close to our wit's end
Hi everyone! I am new to this site and thankful to have found it!! I have read lots of the previous posts and have learned quite a bit just since the time I've been on. My LO was diagnosed with reflux since he was about 3 weeks old as well as ventricular and atrial septal defects. HIs cardiac issues are being monitored and are currently under control with medications (diuretics). He is also on Protonix. His reflux mainly presents as lots and lots of vomiting. He can vomit anywhere from a quarter to an entire meal. He only takes in 2 oz every 3hours. This is the same amount of food he took in since he was 2 weeks and he is coming up on 3 months of age. We present him with more food, but he won't take it. 2 oz seems to be his limit. As far as the vomiting goes, he can vomit anytime during a meal and as late as 3 hours after eating. He can vomit 1-4 times during a meal. Occasionally we can have a meal with no vomits but that has become quite rare. When he vomits, it can be anywhere from 15-30 mls and since he only takes in 60 mls per feed, it is wreaking havoc with his weight. What we attempt to do is once he vomits, we just refeed approx that same amount. Sometimes he'll just vomit it up again and we try again. His weight has now seemed to stabilize at around 9 lbs, 5 oz for the past week or so. His pediatrician thinks his weight is fine, his cardiologist wants him to gain more and so do we. We saw one gastroenterologist and she said he was doing fine. We are currently seeking a second opinion. He is on Gentle STart, 26 calorie. We tried Alimentum in the past but he seemed to have increased vomiting and stomach retching when he tried this. Granted, we tried a day here and a day there but with the increased vomiting, we were extremely reluctant to continue and therefore resumed the Gentle Start. We tried rice cereal but that did not helped-the vomiting continued and we were really afraid of him aspirating the food since it is so thick and then the risk of him developing pneumonia is not a risk we can afford. He now also seems to have a lot of air in his body. He is burped several times during a feed. He chokes and gags, sometimes before a feed- it can happen just as I'm getting ready to pick him up and he starts to gag and when I do pick him up it's like I can hear all this air in his little body. He tries to burp it out and he appears to 'bear down' to help get it out but he can't expel it all. Has anyone had this? After a minute or so, he seems ok. He has never turned blue/gone limp, thank God! We just don't know what to do in the meantime while waiting for a second opinion from the gastroenterologist. Feedings are difficult because the vomiting is so frequent, sometimes just after taking in 15mls he will vomit. We feel like we don't know what else to do. He is held upright during a feed, held after a feed, his crib is raised appropriately, burped more than what's recommended. As far as weight, he is in the second percentile for his age and I feel that that just isn't "acceptable" as some doctors say it is (he was born at the 25th percentile). He is Protonix-he was prescribed 3.3 mg twice a day. We ended up cutting it in half because he just wasn't eating so as an experiment we started giving him 1.65 mg twice a day and his eating increased (he was only taking in 15-20 mls before calling it quits). We remain on that halved dose-so I think he was experiencing some sort of side effect(s) on the original dose. His docs know we cut the dose and nothing else has been done. We are really concerned about his weight and don't want to see him not gain or lose weight. His cardiologist wants him to gain weight with a goal of an ounce/day but his pediatrician says this is just not possible. We don't want to see him lose weight and just don't know what to do. Any ideas!!?? Thanks!
Sep 19, 2010
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
OMGosh I have soo much to "tell" you. But, we are heading to bed for the night!!! I will be back after my son goes to school in the morning.

The one thing I do want to tell you is that I think your son may have delayed gastric emptying. Google it if I am not back to you fast enough and you are curious. There are medications that can work but sometimes can't. It is possible that the higher cal formula is causing this....we saw the same issue with Jedd when he was put on 27 cal for cardiac issues as well.

I promise, I'll be back.....

Sep 20, 2010
Thanks! I will and looking forward to hearing back. HIs 1:00 am feed went terribly-he vomited maybe 5 times or so..I feel terrible for him.
Sep 20, 2010
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
OK, I got called early this a.m. to substitute at my son's school. I won't be home till late...sorry!!! I will get back to you after dinner my time, east coast.

Have you had an Upper GI series done.....that will test to make sure all the structural parts of the GI tract are formed correctly. It's a good first test for GERD.

Sep 20, 2010
Thank you! NO testing has been ordered. We just get told "that's the reflux" whenever we mention the frequency of vomiting. However, the vomiting has definitely increased over the last couple of days and his intake has decreased so I'll be calling the pedi office this am...
Sep 20, 2010
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Jessica (Jedd's mom) will really school you, but I'll throw in my two cents...Your son sounds like mine basically...Zack is 3 (next week! ack!), but he was 2 months early and his vomiting was insane...INSANE. I fed him with a beach towel over me...a bottle in one hand and a tupperware bowl in the other. he would sometimes vomit MORE than he ate...we were medicated for reflux (and although it did nothing for vomiting it protected him...2 straight years of vomit and no esophogeal damage)...secondly we learned that he he DGE...Delayed Gastric Emptying...that jessica referenced. Basically it means that his tummy doesn't empty as quickly as "normal" kids so he can't take a lot of volume and there is always a LOT of pressure on the stomach and LES (Lower esophogeal sphincter)...pair that with an immature digestive system and reflux and you get LOTS of puke. Here's the bad news...we tried a lot of stuff that helped...but the only real cure was time. It took Z two years (almost to the day) to stop vomiting...but he did it...we were told NUMEROUS times that this kid needed a fundo, but i'd done my research and he just wasn't a good candidate (he's a gagger and a wretcher - he would often MAKE himself throw up)...but I digress. here are the things that helped.

Prevacid - protected him...he's had two endoscopies and apart from a couple minor irriations he is lesion and damage free
Reglan - it really was a wonder drug for's aids with gastric emptying and made him SO much more comfortable...unfortunately as his dose increased side effects came alonga nd we had to discontinue.
Elecare - hypoallergenic formula...we wanted to make sure we werent feeding him something that was hurting him..expensive, but worth it for our kid
TIME - I can't stress this enough...things move in slow motion when you're on your hands and knees in tears and you reek of's stressful and hard...we didn't go hardly ANYWHERE the first year and a half of Z's life...he would throw up everywhre we was just too stressful to go out to the zoo or Disneyland...god help me, i would never go to a friends house...
I recommend gas drops in the bottle...stick with the 2 ounces per to your doc about trialing reglan or Erythromyacin for the DGE...also talk to your doc about trialing Prevacid, Zantac or a combo of both.
You've come to the right place...I would have torn my hair out if it weren't for boards like this...knowing you're not alone is really part of the battle.
Sep 20, 2010
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
OK, I am at work...shhh, the kids are sleeping...LOL

An ounce a day weight gain is possible even with vomitting, it's just really really hard. Do you have a goal weight before they will do the VSd repair or not? Are they just going to let him go and see hwo he does or does teh VSD need to be repaired?

I would do the UGI first to rule out any structural issues first. But I really feel it is probably a DGE (gastric emptying) issue. We saw this as well and the need to be on a higher concentration of formula only makes it worse. But, they need it in order to gain weight. It's a catch 22.

I would most certainly look for a new GI if the current one and you do not mesh well. We suffered way to long with our first one and that is why Jedd ended up 100% tube stead of a little tube fed. His pain was too great and the GI didn't want to do anything at all for it.

Get on a high dose of a PPI, Jedd did great on Prilosec but we needed a liquid to go in the tube. With a choice in the matter I'd go wtih Prevacaid.

Keep a log of what is fed orally and when it occures. With a VSd they will be quick to tube fed if the hole is too big. We asked for Jedd and by that point he was taking about 9 ounces in a 24 hour period.......nothing more. He was loosing weight quickly and was FTT already.

The tube saved his life, I truly believe. I hope your Ped visit went well.....we loved ours and she was our saving grace and full of common sense.

When and if you get to tube feeds, let me know, I can give tons of advice once that happens. It will not surprise me if it does as hard as it will be. Esp if the hole is large and causing feeding issues.

Jedd had a combo of horrible weakness from his HUGE VSD and his GERD. He had a double whamming, it was just inevitable we would end up with a tube.

As hard as a tube will be, the number one goal will be to get the child to grow enough so that you can do surgery. For us, the goal was 12 lbs. It took 6 months to do so and by that time he was soo FTT and just not doing well health wise the choice was made to bring him to the board around 5 months old and decide to do surgery. It happened very fast by that point. Within a month we were in for the repair. He needed it badly.

Back to reflux meds....when you get on a PPI, watch the dose as you see weight gains, the meds will need to be adjusted to keep him comfy.

Also, as far as meds for delayed gastric emptying....Reglan worked the best for us, but we saw really bad irritablity and had to DX it, we lasted about 16 weeks....he was just a blubbering mess, whinny, screaming, and just really really fussy!! Once of the med he did fine, he was on it at around 9-11 months old....a bit longer, can't remember the exact age.

We used Erythromycin (EES for short). Taken in low doses serveral times per day can make the belly empty faster. Once we found the right PPI dose coupled with the right EES dose, we had less vomitting.

This in truth took TIME as you have already heard.

I like to say that TIME is a refluxers BEST friend. It truly is. Jedd didn't follow the normal time schedule with GERD. We didn't really see any difference until about 1 year old. Then we saw another jump around 18 month and then about 2 years old, things seemed to settle down alot!!! By 2.5 we saw VERY infrequet vomitting and now at 3.5 we rarely see if, but we still do.

Some kids just will need meds for life for their GERD and Jedd is falling into this category. We have given up on trying to wean him and just give them to him twice a day.

A split dose is always best. We also do 1 dose of mylanta each day about 30-60 mins before bed. This was added in about a month ago, to try and stave off another med increase.

Please don't feel like you are alone, you most certainly are not. I can tell you, I survived it and you will too. It may not feel like you can, but you will. My favorite thing/quote to recite to myself was: This Too Shall Pass. It really will.

It may not be better tomorrow, or the next day, but very slowly over time, things will get tiny bits better and tiny bits better and by the time you will see much better.

Let us know how that visit goes today!!!! ((HUGS))

Sep 20, 2010
Thank you ladies for your insight and suggestions, I appreciate it greatly!! As far as Liam's VSD, his cardiologist is keeping an eye on it for the time being, he is hopeful it may not need repair. We were told it was quite large at birth but the doc is hoping that with growth (of course that therein is the problem) the hole will decrease in size. L has done quite well in managing to eat even with the VSD and if it weren't for the reflux you'd never know he has medical conditions. His ASD will eventually be repaired but that is not on the forefront right now and not much of a contributor to any of his symptoms. Also, it is a much less invasive procedure than the VSD I will ask about the Prevacid. Our insurance no longer covers Protonix and since I don't think it was helping, I'm hopeful that switching PPIs will be of some benefit. I don't know how, but L's weight is up today??! We will be seeing a pediatric gastro on 9/30 for a second opinion. Our cardiologist had recommended this doc so we are hopeful we can get the ball rolling in improving L's reflux. I felt so much better after reading your posts and realizing we are not alone. That means a lot as I was starting to feel that way. Thank you so much!! I am off to attempt yet another feed-I did start adding the gas drops to his bottle so hopefully that can ease some of the gas he seems to be building up.
Check with your
doctor first!