I have a 2 1/2 year old son who has been diagnosed with GERD. He had a gastroenterologist in Chicago who put him on Prevacid after running allergy tests and a stomach emptying scan. We are now living in Ireland where we don't have access to a gastroenterologist. His GERD seems to be getting worse despite my managing his diet. He now spits a lot of food out because he cannot swallow, complains of pains in his stomach and butt, and is now vomiting 3x a week. Recently he began vomiting with such force that it comes out of his nose and several times has caused broken blood vessels in his face. This week he has a cold and has vomited at least every night. I'm at a loss of what to do next. The doctor here only switched his medicine which he refuses to take because it's yucky. Any suggestions? This has been going on since he was only a few days old and just gets worse.
Hello Colleen,
I am so sorry to hear about your struggles. First let me ask a few more questions. Did the allergy testing and stomach emptying scan rule out food allergies and delayed gastric emptying? At what age was the allergy testing done? It is possible for food allergies to emerge later as a child gets more exposure to a food, triggering a reaction. In addition, food allergy testing, especially in infants may not yield a great deal of information.
Keep in mind that I am a mom and not an MD but your description of symptoms makes me wonder about food and food allergies/intolerances. I wonder if there is a pediatric allergist or dietician who could look at his diet. Sometimes an elimination diet is a good way to isolate foods that are triggering symptoms. Again, you will need to work with the pediatrician, dietician or nurse to develop a plan of action.
As a short term measure, a doctor may prescribe a medication that coats the esophagus and stomach so that the food is less irritating. Not sure if your doctor would want to consider this.
Let me know a bit more about what you have tried so far.
Jan Gambino
The Reflux Mom
www.refluxmom.com
Jan, Thank you for your response. He had a stomach emptying scan around the age of one which revealed moderate acid reflux. The Gastroenterologist put him on Prevacid which was upped to 2 15 mg doses per day because he was still vomiting. They ran allergy tests a few months later which revealed he had no allergies to milk, soy, nuts, gluten, etc. This was done through a blood test. Before the test I kept a journal on what he was eating because I thought that may pinpoint a certain food that triggered it but nothing stood out.
Now that we are in Ireland I had him put on the Irish equivalent of Prevacid and he was having very few bouts of vomiting with that but then went back to vomiting 3x a week for at least a month. My sons doctor switched him to a medicine which causes his stomach to open faster so the acid doesn't back up as much but he hates it and refuses to take it. Here they offer nothing in order to flavor the medicines like they do in the US. This week he's sick with a cold and is vomiting daily. He's recently had problems where when he vomits it comes out of his nose and he's had a few times that he's broken the blood vessels in his face from vomiting. He's also burping a lot and spits his food out a lot because he cannot swallow correctly. My biggest problem is that because of being in Ireland they simply do not offer the access to pediatricians, allergists, etc. like we had available to us in the US.
hi colleen,
i wish i had some answers for you. i just wanted you to know how much i feel for you in these circumstances. i know how frustrating it can be even when you have access to US medicine and can't find the answers. i can't imagine how you're feeling with not being able to get your son the attention he needs. know you're not completely alone, and feel free to vent back to me if you like. i'm wishing you the best.
susan
Hello Colleen,
It sounds like you have some real challenges getting care for your little guy. Thank goodness for the internet.
Sometimes a cold or infection can cause a worsening of reflux symptoms for days or weeks. It might help to add some probiotics to his diet if he has been on an antibiotic to regrow the flora in his stomach.
Doctors may use a blood test or skin testing for food allergy testing. It is possible for the reflux to cause allergy like symptoms. My kids are very sensitive to the foods they eat. My daughter refused to eat any type of nuts for the first 8-9 years of her life. She never tested positive for nut allergies. I am guessing it causes some type of terrible reflux symptoms so she just knew to avoid that food.
She also went through a stage where all food was rejected as a reflux trigger. It was hard for her to figure out what was safe and what was not. I would probably did the same thing if all food tasted like acid!
The vomiting is worrisome and should be monitored.
Jan Gambino
The Reflux Mom
www.refluxmom.com
I read that his problem with swallowing could be due to his esophogus being irritated which is a fear of mine. If he's eating something he eats some of it and spits some out. It happens with all foods. He is gaining weight and weighs above what he should for his age so I think that's why the doctor is not overly concerned although he is monitoring his weight.
I had luck getting him to take the new medicine today. I looked at your website and followed your idea about rewarding him for taking it so now he gets a star every time he takes it. He even said that it's not yucky anymore.
Tonight he woke up crying and after about the third time of waking and crying he woke up and vomited. After he vomited his stomach was making noises almost like when you plunge a toilet or drain a sink. I've noticed the noise before after he vomits. Does this sound familiar to you?
Hello! I am glad he is taking his medication. That is a start. It might take a while for his stomach to adjust to the medication so give it a few more days to see what happens.
I am concerned that he is spitting the food back out. My daughter used to complain that all foods tasted yucky. In her case, everything was awash in acid. I know other children can have a narrowing of the esophagus from the esophagitis and that makes swallowing painful. Eosinophilic esophagitis is a GERD look alike and it is often associated with painful swallowing. I am hoping the medication will begin to work to calm down any irritation.
The stomach may churn before vomiting. Poor little guy! I am sure this is upsetting for both of you. I am not sure why is stomach is so loud but waking up at night due to vomiting indicates that his treatment is not covering the nightshift. Sometimes the doctor recommends splitting the PPI into 2 doses, 12 hours apart. Other times, another medication such as a H2 blocker (Zantac) is added at night.
I know you have said that the doctor doesn't want to do anything more and you don't have access to a GI specialist. I would recommend looking up the NASPGHAN guidelines (I think there is a european version too) and bring a copy to the doctor. These treatment guidelines are for general practitioners and GI specialists and set the standard for care. Further, I would bring in all sorts of data. I would keep a daily log of symptoms, night waking, vomiting, foods eaten, foods spit out, etc.
Put it into an organized list so the doctor sees the patterns and problems very clearly.
So here's hoping the medication begins to work.
Please remind me again what kind you are using and how it is given (pill, capsule with beads, solutab). I will let you know if I can think of any other tricks to make it work better.
Take care,
Jan Gambino
The Reflux Mom
www.refluxmom.com
Thanks for the advice. I will look into the esophogial condition that you spoke of. I will be going back to the US in Sept. or October so I think I may just have to book an appointment with the Gastroenterologist he saw before and pay out of pocket because we do not seem to be getting any answers here. He is on a liquid medicine, the Irish prescription is for Motilium. The active ingredient is Domperidone which is suppose to help move the food faster through his esophogus, stomach, and intestines so it doesn't stay in the same place too long or move backwards. He is suppose to take it 3x a day. So far he is taking it without a problem since I implemented a reward system.Before the prescription for Motilium he was taking 15 mg of Prevacid in the morning and 15 mg at night. It worked for a while and then he started to vomit periodically and then recently he was vomiting about 3x a week which is when I saw the doctor about switching his medicine or doing something else for him.
Today he was vomiting again. There has only been one day in the past 2 weeks that he hasn't vomited. It occurs at different times but I will take your advice and start a journal. I kept one in the past but it did not reveal anything to the doctors but I think it is a good idea to start again. As for the night vomiting he has always that. I need to invest in a wedge and hopefully that will help him. I think part of his problem is that he drinks milk at night but whenever I have tried to stop it he gets so upset that he cries for a long time and vomits anyway. It just really seems to be getting worse lately which is scary mainly because we're in a place with such a shortage or rescources.
Hello!
I was thinking about you as I was driving the carpool last night!
Before you invest in a wedge, see how he reacts to a firm pillow in his bed or try elevating the mattress slightly. You will need to be extra careful if he is still in a crib since elevating the mattress or adding a pillow may give him the ability to climb out of the crib. If he is in a toddler bed or regular bed, you don't have to worry about this risk. If he responds well to some elevation, you can see if he still needs a wedge.
You mentioned that he drinks milk at night. My girls are both severely lactose intolerant so they need to avoid dairy or use lactose free products. I wonder if there is any chance some of his symptoms could be related to ingesting lactose. Do you have access to lactose free milk? it might be something to consider.How much milk does he drink in a day? Does he like to eat food or does he prefer drinking?
I know of some children (and adults) that just have a weak Lower Esophageal Sphincter and can vomit for the least reason (full stomach, bending over to tie shoe, etc). I keep suggesting other possible related causes of GERD and GERD like problems because there may be multiple reasons for the symptoms. So it is possible that your little guy has a weak LES and that is the entire reason he can vomit. Something as ordinary as moving about, a cold, etc will cause an increase in vomiting. My daughters have GERD as well as lactose intolerance and asthma. All 3 collide and work against each other every day but we have some reasonable control because we can try to offset the effect of each with treatment. I think you will figure out the reason for the vomiting and what is triggering the symptoms and then you can get the upper hand. I know you are in the most frustrating part of GERD treatment as you search for the best treatment plan.
Take care,
Jan Gambino
The Reflux Mom
www.refluxmom.com
I was wanting to let you know how things are developing with my son.
He was admitted to the hospital here in Ireland at the end of April after he began vomiting blood. It was a really tough time because he clearly had irritated his esophagus so much with all the vomiting due to his GERD, that it caused the bleeding but the doctors refused to acknowledge it. They were telling me that it was due to this one episode of Gastroenteritis and that he was fine because he's thriving and he would grow out of his acid reflux. They were using his stomach emptying scan that was done a year and a half ago in Chicago as the basis for not needing to do anymore tests on my sone. I had told them several times about his GERD only getting worse and no one wanted to listen to me. I literally had to argue with two doctors before the main doctor finally admitted that yes, the bleeding was from my son's history of vomiting. Still they didn't want to do anything for him but continue with medicine and refer him to a dietician. The doctors ran blood tests and found that my son is iron deficent too.
I pushed for an endoscopy to be done but was told that there is a year waiting list once its decided an endoscopy is needed because there are only 3 doctors in the country who perform the procedure on children. I was told that I would get a referal to a dietician and a clinic with a doctor who has "an interest in Gastroenterology." I was not very happy with the hospital experience at all and very angered that I should have to argue and pursue his care so much with the doctors.
I did have a notebook with me because I had begun to keep a diary of when he vomited, what he's eating, etc. so I kept notes on everything regarding his care and was able to write a very detailed complaint letter to the hospital when we returned home. I wrote to his doctor at Children's Memorial in Chicago and they will see him and want to do an upper GI and will probably do an upper endoscopy also. This is a huge relief because I feel like something will finally be done. It's almost a month later and I still have not recieved any word on an appointment for him with the doctor (in Ireland) with and "interst," in Gastroenterology. I recieved an appointment for a dietician but it's not until the end of July! While he was in the hospital here in Ireland they put him on LoSec and that has actually helped a bit. He's still vomiting but not nearly as frequently or as much as before and when he does vomit it is much easier on his body. He is still having issues where he cannot swallow properly, complains of stomach and butt pain, and has wet burps. I have also been restricting his diet even more to put more iron into his diet and reduced his milk intake so I don't know if the change is due more to the diet and reduced milk or the medicine.
With me having to return to the states to get him proper treatment is there anything I should expect from the upper GI and upper endoscopy? I have done some research on it but I want to be prepared as to what I should expect. Do you think the doctor will tell me I need to stay in the states for a longer period of time for treatment or will they just continue his medicine? Any words of wisdom?