Hi I’m Bel. I have two children – my refluxer is Jude (3 years old).
I had a pretty normal pregnancy with Jude, ate everything I should stayed away from everything that was warned about. No drinking, smoking raw meat, eggs, cold meats, salad bars takeaway. The list goes on. I didn’t die my hair and I didn’t use chemicals to clean. Why am I telling you this? Just in case there is another reflux mum reading this, It is nothing you did. I did everything right and at 3 years old my son still suffers from silent reflux.
With Jude I had the ideal birth, 5hrs, no pain when pushing, complete control when pushing and up and about quite quickly. The first four weeks of his life were hard but nothing every other mum has been through. My husband left for deployment at 4weeks for 5mths and then at 5 weeks the roller-coaster ride commenced.
After a couple of blue episodes whilst feeding and then total feed refusal an exhausted stressed out me took Jude to hospital. He was diagnosed with silent reflux and placed on a reflux medication and then after a second visit to hospital once again for feed refusal he was placed on a second reflux medication. Feed refusal happened weekly but with Panadol and Mylanta I managed it and was one of the lucky reflux parents where my child still put on weight. Weight has never been much of an issue.
Silent reflux is not silent because it’s painless, it merely means there is little to no vomiting. Instead of bringing the milk up it is swallowed back down, which means it burns on the way up and then on the way down. Anyone who’s suffered heartburn before would have an understanding of how unpleasant this is. Add to this the fact that a baby does not understand why they are in pain everyday of their little life. It wakes them from their sleep it effects their feeding and it makes lying down an unpleasant experience to say the least.
The early days with a child suffering silent reflux, and believe you me they do suffer, are a blur of sleep deprivation and tears. I would feed my son and look at the clock and notice 3 hrs had passed and I had no idea what I had done only that I was feeding him again. One time at three in the morning my mother, who was staying at the time came in to talk. I broke down in tears telling her that I had no idea what I was doing, my life was this horrible half remembered nightmare and I could not even remember when I had fed my son last. She gently informed me that I had just finished feeding him 5 mins ago. Sleep deprivation is beyond a doubt one of the biggest challenges of any new parent.
Jude also had issues with feeding. I had masses of milk, he was a very hungry baby (2‐3 hrly around the clock for the first three months) and the fact that he would choke and go blue or pale and floppy everytime I fed him. This combined with the fact that I could not keep up with expressing for a child that fed so often when I needed to sterilize everything. Oh and I had to add thickener to help the reflux. After agonising for two weeks I put my son on formula. This was not an easy decision but considering the circumstances I would make the same decision again if I had my time over. The only reason I didn’t give up parenting completely was my amazing mother but she could not be there all the time.
When my gorgeous little guy was three months old I packed our suitcase, Jude’s nappies, formula, bottles and pram and caught a 27hr flight to Canada. We were to spend a month in four different places in Canada and America to see my husband; Jude’s daddy. It was an amazing trip. Not only did flying solo for 27 hrs with two stop‐overs and no sleep with an infant give me an amazing sense of achievement but it made going to the shops a cinch! There were tears in Vancouver airport (OMG what a confusing place) but the way home after 10 individual flights was no problem. It was great to see my husband again. I finally felt like a family and New York was amazing!
After the first 5 mths of Jude’s life I will always be in awe of single parents. Being the sole carer 24/7 is HARD!!!
There was some improvement of Jude’s reflux, or should I say the medication and other management methods worked. RISA helped keep me sane and gave me friends to bounce my ideas off. There were flares whenever he teethed or had a growth spurt and medication doses were often reviewed. I waited for that magical day the reflux would subside and I would have a `normal’ child. I am sadly still waiting but now I accept this journey both good and bad and realise I am an amazing mother and I will survive!
The next 2 years
At 6 mths my husband returned. Unfortunately I had been in a hazy autopilot for the last 5mths and on the return of my husband, the stress anxiety and resentment (at my husband for going away not at my son) all hit hard and at 7 mths I was diagnosed with Post natal depression and anxiety. I would check my son constantly convinced someone would come in a steal him and I was convinced I was a failure as a mother. I had been a children’s nurse for 8 years before my little boy arrived so why couldn’t I cope? I decided to try without medication first, promising my doctor that I would go on medication if there was no improvement with counselling. I did individual and group counselling. The ladies in my group were some of the most amazing, caring and strong women and despite the fact that they battled some pretty major demons they were brilliant, loving mummys.
It was a long road but I did learn to control the anxiety and a cloud that had lay over me since my husband left for the 5 mth trip finally lifted.
Starting Jude on solids was a challenge. With intolerances to rice, pumpkin banana and lactose all the normal first foods left him screaming in pain, projectile vomiting or with blistering nappy rash. Once we worked out what was causing the issues he became a good eater.
We had a brief 3 mth period where we weaned Jude from his medications and I finally breathed a sigh of relief. During this time we decided to try for baby number two and three weeks later those magical two lines appeared. The start of the pregnancy was hard due to low iron but after that it was a good pregnancy.
At 14mths the dreaded reflux monster returned with a vengeance. Jude would wake screaming up to 9 times a night. His behaviour during the day was erratic and he never woke happy. He was placed back on medication, though he did not improve fully. When Jude was 19mths our beautiful little girl arrived, thankfully she was reflux free and a relatively easy child. At around 20months Jude was diagnosed with major sleep deprivation. A lot of the symptoms are similar to ADHD so you can imagine how challenging it was. Jude would wake between 3‐9 times a night and was harder to deal with than our 1mth old baby. Finally I managed to get a reflux episode on video and we were then referred to a gastroenterologist.
The gastroenterologist has been great. He changed Jude’s medication and finally Jude started sleeping through and finally I was not been treated like a neurotic over‐reacting mum. And after being told his waking was behavioural and being sure that it was not, I was a little smug to be proven correct. I have always said trust the mothers instinct, no one knows their child better!
Now at 2 1/2yrs I sit waiting for the results of Jude’s scope. I can’t decide if I want them to show something or not. But at least it will stop the questions and give us some direction. Jude is an incredible stubborn, gorgeous and intelligent child. And despite all the stress we have had in the last 2 1/2yrs it has been very rewarding. I have changed as a person, faced demons and come out a stronger more compassionate and caring person. I have learnt to trust my instincts and that no matter what to never let a person make you feel less than you are. I have learnt the value of true friends and the perils of parenting without a support system. I love my little boy more than life itself and my little girl is a joy, but that is another part of my family’s story.
AND NOW:
The scope showed that Jude had cellular changes to his oesophagus that indicated he had been suffering a chronic oesophagitis. There was no inflammation that meant the medicationss he is on (Somac) are doing the job. The fact that he had started Somac 6mths before the scope and he still had the changes showed how bad his reflux was/is. We now are waiting for a gastroenterologist review and need to decide what to do next. I have decreased his meds a little but if he doesn’t have them he gets inflammation to his throat. He starts snoring, waking at night, gets tonsillitis and his behaviour becomes quite challenging.
Bel is an Executive Committee member of RISA and as a long time paediatric emergency nurse, makes an important contribution.
You can contact Bel on the RISA forums – username: Saltnic