To those who are (blissfully) unaware of what GERD (or GER) is, the letters stand for Gastroesophageal reflux disease - also known as severe heartburn and acid reflux. Reflux is usually a symptom of a different underlying cause, but as with most medical conditions the symptoms are controlled instead of the bigger issue being treated. My son, Lewis, is now almost five years old and still experiences occasional reflux symptoms, but mostly suffers from lasting effects and damage caused from spending the first few years of his life with terrible GERD.
When Lewis was a newborn, he didn't like to feed at all. I had nurses in the hospital trying to feed him the little bottles of formula & he would barely drink anything and then before long he would bring it all back up again. They reckoned he was just full of mucus and I was to keep force-feeding him and making him sick "to bring up all the gunk". Lewis continued on with this pattern for the first week of his life before he & I were re-admitted to hospital. Myself for a nasty infection and Lewis as his jaundice was becoming worse instead of better. His nappies had this strange orange powder in them & it then it began coming from his nose - I was really worried. I soon learned that these were both classic signs of bad dehydration in babies! We continued force-feeding him and watching him bring most of his milk back up again, maybe immediately after drinking, sometimes 10 or 20 minutes later and other times it was an hour or more later. We were clueless about what was happening.
When Lewis was around 4 weeks old he developed a strange cough and almost wheeze. As Lewis' Dad has asthma, this was the immediate concern of ours so I took him to our GP. We were fobbed off continuously from the Doctor at our surgery and also at our local out-of-hours unit. I was fed up and concerned for my baby so I took him to hospital where I refused to leave til he had been checked over by a Paediatrician! He was admitted into the day ward where the Dr on the ward decided he was suffering from Bronchiolitis - very common in small babies and untreatable with antibiotics or similar. You basically just have to wait-it-out and make sure they still drink as usual, have plenty wet nappies and their breathing seems normal. As Lewis wasn't good with feeding as his 'normal' we weren't sure if it was due to the illness or something underlying.
Eventually when he was around 3 or 4 months old and there was no improvement in his sickness, strange noises when breathing and occasional 'cough' I took him back to my GP at the end of my tether. My GP prescribed infant Gaviscon sachets to put into his bottles. All these seemed to do were thicken his milk, which was supposed to help keep it down but it wasn't making much improvement in regards to Lewis' sickness. They made him awfully constipated. So back we went. After another trip to the Paediatrics unit at our local hospital, Lewis was prescribed Ranitidine. This did help him slightly, with occasional use of the Gaviscon when he was particularly bad. He was tested for allergies and showed no signs of issues with these. So with these results, the GP said there was nothing else to offer him and suggested early weaning to help.
I began to wean Lewis at 5 months old, in an attempt to somehow control his reflux. He wouldn't throw up full bottles after eating as before, he would just continously spit up. But before and a few hours after food he was still throwing up his entire stomach contents as usual. We went through so many clothes - for him and myself! and we have the most disgustingly stained carpet I've ever seen in my life as this carried on throughout the first year of his life. Unexpected throwing up, screaming for no reason before then instantly settling down once his stomach was empty. It was exhausting, but it became our new normal.
By the time he was 2 and a half, our poor little toddler knew to run to the toilet if he felt it hurting his throat. It is so sad to watch such a small person get up and know to run to the toilet to be sick, so many times a day. At least the carpet started to get a little break eh! He did slowly but surely begin to grow out of his reflux and he was in pain & discomfort less and less - but he continued to be sick a lot and sometimes completely unexpectedly. He seemed to Gag constantly. At the sight of foods on his plate he didn't want, not even necessarily things he didn't like. He would gag at new smells, outdoors and indoors. Not just bad smells - anything that was different. He would continue to gag as if he couldn't stop it from happening, it would continue until he was physically sick. If he choked slightly from drinking his water too fast, putting a little too much food in his mouth or just from a cough - he would throw up. Anything, everything and nothing would make him violently sick.
Lewis' GP has said to us it seems he has a damaged esophagus from all the years of terrible reflux and constant throwing up. It is so hard on him. He does continue to improve, he has learned breathing techniques that help get the gagging under control when it starts so that he isn't always sick. He has also somehow taught himself and his body to just throw up a little bit, and curb it, so that his entire stomach contents doesn't come out. He isn't always successful but he does try and it's impressive! He has a very overly-sensitive gag reflex now due to the damage so has to be careful about a lot more things than other kids his age do. It's a shame watching him sometimes 'walking on eggshells' but we continue to hope he will keep getting better and maybe the damage can be reversed eventually.
Lewis sits still for at least 20 minutes after every time he eats, which means he refuses snack at nursery knowing it will leave him sitting alone afterwards while his friends are playing. He drinks a huge volume of water and liquids, so you must always carry water or juice around and more than enough of! If he hasn't drank as much as usual, he complains of stomach ache. Getting Lewis to try any new foods is virtually impossible. He gets scared which only plays into his Gagging reflex, and it gets really out of control. I try to offer him new things, but he just has to touch it to his lips and the cycle of constant gagging until he throws up begins. So he lives off a very small selection of foods, but he does love his fruit and veg - so I'm okay with it! He can get very upset over it, which is hard to watch. And I do have to constantly remind Lewis' daddy and myself that we can't get angry or annoyed if it happens due to him running around too soon after dinner or eating too fast etc as he is just little and although he knows these things cause the sickness, he is just trying to be a normal child. It can be very difficult. He has also been recently diagnosed with asthma, I'm not sure if there is any link between these - it's something I'd like to do a bit more research into!
If your child is showing signs of having bad reflux, please insist with your GP or local Paediatrics, have it treated properly and try to stem it as soon as possible. We would hate to know there are many other kids out there having to live as cautiously as Lewis does, over something that seems quite little when they are babies. Stick to your guns, listen to your gut instincts! If anyone else is experiencing similar, please feel free to reach out to me! Maybe we could offer each other some support and guidance. It's always nice to know you're not alone!