I would like to share the experience which I had a couple of months ago with my daughter Eleni who had silent reflux. During the first four months of Eleni's life I used the baby calm website as well as other websites to gain information about reflux and to read other mom's stories. I always felt so much better knowing that there were other mothers going through the same thing as me. I hope that my story will provide some guidance to moms out there for babies with reflux.
Eleni was born on the 12/09/2013 at 2.4kgs, she had a low birth weight but came home with us from the hospital. At around 3 weeks old she had an ear infection and was admitted to hospital. At the time we did not know that it was reflux which had caused her ear infection. When we came back from the hospital we were certain that she would start feeling better once she had finished the course of antibiotics. However, this was not the case as she would scream, arch her back, and was unable to sleep lying down. Our first paediatrician thought that it was colic and we were prescribed colic remedies. The colic remedies never helped and one Friday afternoon I decided to research Eleni's symptoms and discovered that she was showing all symptoms of silent reflux especially as she never vomited. I felt such a relief having figured out what was wrong with her and was filled with the hope that there was a miracle drug which would make her feel better.
We went back to the paed after writing down all of Eleni's symptoms. She was diagnosed with silent reflux and prescribed Gaviscon and Zantac. The Zantac worked at first for Eleni but stopped having an effect over time. The Zantac also has an alcohol content which affected Eleni's sleep. The paed decided that because Eleni wasn't reacting well to the medicine, we should have a Barium Swallow done. Eleni was about 10 weeks old. My husband was hesitant on doing the swallow meal but I was so desperate for us to find out what was wrong with Eleni that we decided to go ahead. We both regretted the decision at the time but it did confirm there were no major abnormalities with her digestive system.
Once the results of the swallow came in clear of any reflux my paediatrician said that we should stop all reflux medicine and put Eleni back on colic medicine. At that point we decided to get a second opinion. As parents we knew something was wrong with our baby girl as she was clearly in pain but was not showing colic symptoms.
We went for a second opinion with Dr Street who is still our paediatrician today. She was very understanding from the first appointment and supportive in addressing Eleni's symptoms, especially being firm against invasive procedures and as little medicine as possible unless absolutely necessary. We tried Eleni on Nexium, a medication that inhibits the production of acid, from December 2013 with 10mg in the morning. Dr Street was always there for us; she would call me back and answer emails often giving me advice on what to try and to see how Eleni was doing. The thing with reflux and medication is that it is trial and error as to what will work and when it will start working.
Acid reflux can cause damage to the oesophagus, ear, throat, lungs, nose, etc. - basically anywhere where acid doesn't belong. Dr Street never minded me coming to visit her regularly so that she would check up on Eleni's ear, nose and throat. I was so worried that she would get another ear infection so I would keep checking that. I don't think we would have gotten through this without a supportive paediatrician. My advice is to get a paediatrician which understands reflux and who will support you through this difficult time.
Eleni was originally a comfort eater but over time she didn't want to drink much milk and would drink small quantities regularly. As a typical reflux baby, she was a terrible sleeper and would only sleep upright on me during the day, and this happened for about 4 months. She has always been a better night time sleeper and around 4 months she started sleeping on her own during the day for short naps. She still cat naps in the day and now and then, she gives us these surprise long sleeps. The good thing is that she is content with her short sleeps and wakes up full of beans.
I won't lie that the first 4 months of Eleni's life were probably the most difficult time in mine and my husband's life. We felt so helpless at times and so short of sleep, on few occasions we wanted to take her to the ER rooms at the hospital because we didn't know what was wrong and were distressed with her severe crying. Our family was also affected because we didn't know how to deal with her crying so we used to only go to family gatherings for a short time. They were also so saddened seeing her so upset.
The positive news is your baby will grow out of it and feel better. Eleni started feeling better around 4.5 months after she had been on Nexium for 6 weeks. She is now a healthy 10 month old weighing 8 kgs. She is a very chatty and determined little girl and she started sitting at 5 months, crawling at 8 months and she is now standing on her own at 10 months. She was always a smiley baby even through her ordeal in the early months. She is still on Nexium but we are in the process of weaning her off.
Here are some of the other things which worked for us but always get permission from your paediatrician before giving any medicine or introducing solids early.
1) Time- this is one of the hardest things to accept but your baby needs to grow out of reflux. If it is caused by an underdeveloped sphincter then it needs to develop and the time it requires will vary for each baby. I know this is difficult to accept when your baby is still very young, but all you can do is make them as comfortable as possible. When the baby goes onto solids, sits, crawls, stands it will all get easier for her and you.
3) A good paediatric pro-biotic- we used PB2 to aid the digestive system
4) Telament drops- Eleni also suffered from some cramps and Telament drops helped when she was very young
5) Elevation of the bed using a baby wedge, extra cushioning for the car seat so that she was more propped up and letting her sit in a mobile chair. We also used a cushion on her change mat and play mat. Basically Eleni was never lying down flat and till this day she hates lying flat. Her favourite sleeping position was on her side with towels rolled on each side to prevent her from rolling onto her back or tummy.
6) Dummy- the saliva seemed to neutralise the acid
7) Adding a thickened formula- we used NAN AR but, because there was no number 2, moved on to Novalac AR. I persevered with breast-feeding, however, around 3 months I added some formula feeds and she definitely preferred the thickened formula and didn't want any more breast milk after 6 months. It is important to keep the baby upright after feeding for between 10-30minutes. Some mothers recommend adding rice cereal to expressed breast-milk but I never tried this
8) Introducing solids from 17 weeks- she was on rice cereal in the morning and evening and at around 5 months we started with veggies and fruit.
9) I allowed Eleni to sleep on me or in a carrier during the day because that's the only place that she would fall asleep. I knew that sleep was important at her age but I am not saying it was easy at all
10) Invest in a good baby carrier which you can use when shopping, doing house work or taking her for walks
11) Do not compare your baby with other babies because a reflux baby is different. I stopped reading all the books on routines, etc. because it made me feel worse. You and your baby will figure out a routine that works for you. You cannot expect an unwell baby to sleep the same quantity of hours as a baby which is well, and similarly, they do not feed the same way.
My last bit of advice is to understand reflux and its potential complications. Research it and share your knowledge with your family and friends so that they know what you are going through. You need as much help and support as you can get especially with things like a cup of tea, lunch, help with the house work or to hold the baby for a bit. I would recommend that each day you leave the house and have some "me" time for a bit to keep yourself same. Also take your baby out and about in the carrier if you need to - it is good for you, your husband and your baby.
Enjoy your baby, I know all you want is time to pass so that he/she will feel better, but you cannot get the time back and they will be little for such a short time.
I have such a special bond with Eleni now because of the time we spent together for the first four months of her life and I wouldn't change her for anything. My husband and I are such stronger people for what we have gone through together and the support we managed to give each other through a really difficult time.