Silent Reflux – Hidden Nightmare

Silent Reflux

There is nothing more heartbreaking for parents to see their baby in pain and not know the exact cause of the problem. Silent Reflux can be a cause but it is often misdiagnosed or left undetected in babies and infants.

Silent reflux is characterised by acidic stomach contents coming up into the oesophagus and not leaving the mouth. Don’t be fooled, the child isn’t silent! The term silent refers to the lack of vomiting and therefore it is much harder to diagnose. It can also be a lot more damaging to the child. The acid contents will stay in the oesophagus much longer than if the child had vomited. Sadly this damage was evident for us and we had a long battle ahead of us.

We had a baby that just didn’t sleep.. ever. He was catching small snatches of sleep in-between mammoth feeds, wired and severely sleep deprived. Looking into the more well known reflux, otherwise known as (GORD). The most common symptoms are vomiting, spitting up, poor weight gain, weight loss and failure to thrive. I was repeatedly told by health visitors that he was a big bouncing baby. Healthy is every way, and the amount he was feeding was normal for his size.

Magic Sleep Fairy

Several doctors visits occurred over those months. One doctor said that I was ‘a young anxious mum’ who was ‘still grieving over the loss over your stepson’. I was made to feel that I was making a mountain out of a mole hill. However, he was so unbelievably miserable and I knew something was wrong. I just didn’t know what, and could not piece all the symptoms together.

In utter desperation when Nico was 7 months old I contacted Alison Scott-Wright, the author of ‘The Sensational Baby Sleep Plan’. I got her number from my husbands colleague. Their daughter also had never slept through the night. After hearing that she was sleeping 12 hours I had to get in touch. One the phone I explained that I needed help with Nico’s sleep. Over the course of of the 40min call I told her about his personality, behaviour and sleeping patterns. I even said at the time that he didn’t suffer from reflux as he was never sick. She patiently listened and then told me that from the description I gave she thought he not only had a severe case of silent reflux but also a possible cow milk protein allergy.

Alison explained that he was most likely in indescribable amounts of pain. Using the milk as a way of soothing his burning oesophagus. This was created a vicious cycle as the milk was also cause of pain. She told me that before implementing any sleep training the baby should be fit and well. Clearly he wasn’t, waking every two hours screaming and downing around six ounces every time. She told me to go to the GP with the list of all the symptoms I had described and finally get the management he needed.

Getting Treatment

I learnt that Nico’s symptoms were changing as he was getting older. He was learning to deal with the pain in other ways. Those initial bouts of long crying, arching his back, going rigid and not lying down flat for long periods where being replaced with gutteral grunting noises, sensitivity to loud noises and the most persistent night time cough.

The following Monday I went to the GP with the concise list of his symptoms which included:

  • Constant runny nose
  • Wheezing
  • Night time cough
  • Inability to sleep flat
  • Bad breath
  • Waking after short periods
  • Excessive sweating
  • Screaming in acute pain shortly after feeding
  • Short of breath

Neocate LCP

Even though Nico wasn’t drinking any cows milk he was still reacting to the proteins present in his formula and food. He actually always refused yogurts and anything too cheesy, it is still excluded from his diet today. The paediatrician he eventually saw said unfortunely he would have been intolerant to breast milk too if I was still giving it to him.

We were really lucky that Nico took his new milk really well. I can not describe just how disgusting it smelt and tasted! I know some parents really struggle to make the switch. One of the first day after taking his new milk I changed his nappy, for the first time it that wasn’t lose. The frequent exploding nappies weren’t normal after all. He was also prescribed Omeprazole, medication to help to reduce stomach acid.

Moving Forward

Unfortunately because Nico had been suffering with silent reflux for so long there was quite a lot of damage to his oesophagus. The symptoms and behaviour so ingrained it took a long time even after treatment for him to settle. Loud nosies and crowded spaces were still an issue, and the constant infections pursued. From ages one to two he had eight courses of antibiotics within the year. When his GP told me he couldn’t have any more Amoxicillin I completely agreed and said enough is enough!

At two years old Nico had his tonsils and adenoids removed, the constant acid caused damage there too. He also had grommets inserted, again after constant ear infections his ears were blocked with gunk. The surgeon said he could not hear out of one ear at all and the other significantly dampened. Even with the long list of illnesses that year, the condition that secured his surgery was the Sleep Apnea (complete pauses in breath whilst sleeping) that he developed. The snoring got so bad that it was easy to pin point when his breath was at a pause.

Thank You

Thank you so much Alison for all your help! Nico’s life was transformed after that first phone call. I just don’t know how long we could have coped without your vast knowledge and magical fairy touch. You are a lifeline to so many babies and families. Even cured Romi’s complete addiction to her dummy (pacifier) at 15 months old and got her to settle herself to sleep.

Silent reflux is such a serious and life altering condition I wish there was more research and especially for more doctors and specialists to be aware. The guilt over that period has been hard, that he suffered for so long. I have no doubt that if we had a diagnosis earlier that the chain effect of issues would not have been so bad. That’s the reason for this post to maybe help others going through the same thing, and don’t know where to turn.

Alison Scott-Wright  – The Magic Sleep Fairy

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29 Comments

  1. April 2, 2018 / 11:46 pm

    I had no idea about this type of diagnosis – I struggled with an undiagnosed disease for just under three years and it was completely debilitating. I applaud you for staying so strong especially while your child went through all of that.

    • danirosejones April 3, 2018 / 7:02 am

      It was awful, and still makes me sad now! Good to hear you finally got sorted too

  2. Marcie
    April 3, 2018 / 3:06 am

    I can’t believe I haven’t heard of silent reflux until your post. How scary for parents!

    • danirosejones April 3, 2018 / 7:03 am

      Yes I hadn’t either and thought I was going mad. Maybe someone who needs to read this info will see it!

  3. April 3, 2018 / 11:30 am

    Wow. This made me tear up. First of all, I am so sorry you and your baby had to go through this. I have two kids who are 2 and 5 months and I know how frustrating it is when doctors write off your concerns even though you KNOW something is wrong. Your little boy and you are so so strong. You are an amazing mom. Keep up the good work.

    • danirosejones April 3, 2018 / 12:28 pm

      Thank you so much, yes it was really tough at the time. Luckily he’s doing great now

  4. April 3, 2018 / 11:48 am

    I hope your child is fully well. This is the first time I read about silent reflux. I’m thankful he’s okay now.

  5. April 3, 2018 / 6:25 pm

    Oh mamma! I am sorry your baby had to go through the pain. Am glad you found someone who could guide you in the right direction. I have heard of silent reflux from a fellow mom and understand how difficult it gets if left undiagnosed. Kudos to you for staying strong momma!

  6. April 3, 2018 / 6:57 pm

    This really brought me back. One of my twins had severe Silent Reflux when he was an infant. We were really lucky that because he was in the NICU for two months, we had a diagnosis much quicker, but it still caused a lot of chaos in our lives (and pain in his) – I can’t even imagine how much your little guy must have suffered. Thank goodness that you listened to your intuition and found right person to point you in the right direction. Thank-you for sharing your story, as it will definitely help others and I hope he is doing well and thriving now 🙂

    • danirosejones April 3, 2018 / 7:33 pm

      Yes I hope it gives people an insight because I didn’t have a clue what it was, and immediately assumed he didn’t suffer from reflux. Painful memories for you too I’m sure. He’s doing great now thank you

  7. Joe
    April 3, 2018 / 10:11 pm

    Oh gosh, thank you for your post and your strength! I’ve never heard about this before and now I’d like to learn more.

  8. April 4, 2018 / 5:21 am

    Nothing is worse then seeing your child in pain. This is heartbreaking, but I am glad it turned out alright in the end. Thank you for sharing this story!

  9. gail
    April 4, 2018 / 11:31 am

    #1 cute kid! #2 I don’t know how parents do it! I am happy you made your way through that difficult time. Seriously, I am amazed.

  10. April 4, 2018 / 12:23 pm

    I am so sorry you and your baby went through this difficult time. You followed your mama’s heart and found help for your little guy! That’s what is important! 😉

  11. Karla
    April 4, 2018 / 7:18 pm

    Since my husband has reflux we were pretty vigilant about it. I know that my littles liked to sleep propped up a little anyway. I’m glad that things turned out okay for y’all.

    • danirosejones April 5, 2018 / 8:20 am

      Thank you! and yes my daughter had the same this so I knew straight away what to do. No messing and changed her milk and got her on meds

  12. Brittany
    April 4, 2018 / 10:45 pm

    Wow that is so scary! I am so glad you were eventually able to get the answers you deserved. I really hope other parents can read this and maybe your story will help someone else!

  13. Melina Botteghin
    April 5, 2018 / 8:14 am

    Hey love… If there is something that I’ve learned with maternity is that Mums have always a sixth sense. We know better then anyone that something is wrong or not.
    Doctors might help, but we know better. I was so said to hear that Nico was suffering and the doctor told you were greving. Jesus… what a stupid guy.
    But nice that our boy is very well now, and I love his pictures! So very cute!
    Love you, take care 😉

    • danirosejones April 5, 2018 / 8:21 am

      You’re the sweetest! I know right?! I can’t believe he said that either. Good job he’s ok now

  14. April 5, 2018 / 6:07 pm

    My friends son had silent reflux and she too had to fight to be taken seriously too. I’m so glad I know what symptoms to look for if it ever becomes an issue for my family!

  15. April 5, 2018 / 8:24 pm

    Those momma instincts don’t lie! You know when there is something wrong with your baby. I’m glad you were able to get a formal diagnosis. I know how much peace that can bring to your mind! 🙂

    • danirosejones April 7, 2018 / 9:10 am

      Thank you, yes the diagnosis brought the right medication and treatment

  16. April 6, 2018 / 4:46 am

    Oh man, what a terrible experience for all of you! I would be furious at that doctor who said you were just overreacting. I hope you went back and showed him exactly what damage had been caused by his dismissal early on. I get that being a doctor has got to be a difficult job, but it seems so many just brush things off. Thank you so much for sharing your story, I’m sure it’s going to help tons of people in the same situation.

    • danirosejones April 7, 2018 / 9:08 am

      I can’t believe what he said too! But it wasn’t just him, I was dismissed by so many. So happy its sorted now!

  17. April 6, 2018 / 9:41 am

    My son has silent relfux as well as PRS – NOT FUN 🙁 but we figured it out and he was put on medication and could only be bottle fed.

    • danirosejones April 7, 2018 / 9:07 am

      My daughter had the same as my son but with her we knew what to do straight away. Much easier diagnosis

  18. April 8, 2018 / 11:12 am

    I’ve not heard of silent reflux before so thank you. I wish you and your little man the best of luck. Having two children both with special needs and health concerns, I totally understand the need to get a diagnosis.

    • danirosejones April 8, 2018 / 9:00 pm

      No I hadn’t either. Good luck with your little Super heros

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