35 Things Parents Need To Know About Reflux In Babies

When we published our 20 Things Parents Need To Know About Reflux In Babies I was thrilled so many of our readers got in touch with tips of their own that they felt needed to be included.

So here is our updated 35 Things Parents Need To Know About Reflux In Babies:

  1. Reflux does not have to mean vomit. Some babies have silent reflux, which means their stomach acid burns their throat.
  2. Silent reflux is often not very silent, and often involves unexplained crying and screaming.
  3. Many doctors struggle to recognise reflux.
  4. If you have concerns about your baby you may need to be persistent to get them the help that they need.
  5. The NICE guidelines for how doctors should treat infants with reflux can be found here.
  6. Frequent hiccups and wet sounding burps can be signs of silent reflux.
  7. Reflux can cause babies to become rigid with pain. Some end up having MRI scans to rule out other causes for the rigidity.
  8. Babies with reflux often struggle to latch successfully, and will often only take short feeds as the pain causes them to stop.
  9. Other babies with reflux feed more often, they use the milk as a way of keeping the acid down.
  10. Dream feeding can help babies with reflux to maintain/ increase their weight if they are reluctant to feed during the day.
  11. Rocking your baby gently whilst feeding them can also help them to relax enough to take a feed.
  12. Holding your baby upright for at least half an hour after a feed can help to keep the acid down.
  13. Some parents have found that cranial osteopathy has helped to reduce their child’s symptoms.
  14. Sucking a dummy can provide comfort to babies with reflux and help them to keep the acid down.
  15. Babies with reflux often struggle with sleep.
  16. Some reflux medications can also reportedly cause difficulties with sleep.
  17. Raising the head of a a baby’s cot can help with reflux at night.
  18. If they are laid flat some babies with reflux can cough and make choking sounds in their sleep.
  19. Some parents have found that a sleepyhead can help their baby feel more secure during the night.
  20. Parents of babies with reflux are often advised by doctors to wean them early, this helps some babies but can make the reflux worse for others.
  21. Food allergies can often make Reflux worse.
  22. If a baby is breastfed it could be foods in the mum’s diet that are problematic.
  23. Cow’s milk is sometimes a problem for babies with reflux.
  24. Most babies grow out of reflux by the time they are six months old, only five percent are still affected by the time they reach a year.
  25. There is very limited research on which foods affect babies with reflux so it is often a process of trial and error.
  26. Reflux can cause food aversions which last after the reflux has gone. It’s really important to tackle these as early as possible so they don’t become ingrained.
  27. Feeding your child in new places where there are distractions can sometimes help.
  28. If your child has a virus and/ or high temperature it is likely to cause the reflux to spike too.
  29. There are a variety of graduated medications which can help babies with reflux.
  30. Reflux medications can be combined if doctors feel that one is not working.
  31. Do not be afraid to go back to your doctor if you feel that your baby is still in pain, there are alternative medications they can prescribe- one size does not fit all.
  32. Many medications are very weight dependent, so it is important to get your baby weighed regularly.
  33. If your baby continues to have symptoms despite medication and/ or has a food aversion and Endoscopy and/ or PH study may be recommended to help doctors get to the bottom of the problem.
  34. Reflux is exhausting for babies and their parents, do not be afraid to ask for help if you need it.
  35. There are some brilliant Facebook support groups out there for advice, as well as some really helpful websites.

Living With Reflux is hard, do not be afraid to ask for help if you need it.

Infant Reflux Resources For Parents

Knowledge and information can be thin on the ground so I have put together this list of infant reflux resources for parents to help those of you who are at the beginning of your journey. The Facebook groups in particular are well worth checking out, they are full of a wealth of information and parents who understand the road you are travelling.

Facebook Groups

Silent Reflux Support Group For Moms
Babies With Reflux and Silent Reflux
Babies With Silent Reflux
Silent Reflux Babies Australia
Living With Reflux (Child Support) – Charity Number 1132614
Silent Reflux, Reflux, CPMA, Intolerances In Babies
Surviving Reflux Ireland: Dealing With Reflux, Colic, Cmspi and Gi Issues
Infant Reflux: Support For Gerdlings

Websites

NHS Direct
Nice Guidelines For Infant Reflux
Living With Reflux

Reflux Posts On This Blog

Dear Reflux Mummy – An Open Letter To Any Mummy Whose Baby Has Suffered From Infant Reflux
What To Expect If Your Baby Has An Endoscopy And A PH Study
What Parents Of Babies With Reflux Need Their Friends And Families To Know
Hobson’s Choice – A Reflux Story
Reflux At One Year – An Update
Ten Tips For Surviving Sleep Deprivation
Infant Reflux – I Hate You
Dear Reflux – My Third Open Letter To Infant Reflux At Ten And A Half Months
Getting A NasoGastric Tube For A Baby
Getting The Reflux Medicine Down
Baby Reflux At Ten Months Old
Leave Us Alone Reflux
20 Things Parents Need To Know About Reflux In Babies
Battling The Reflux With A Dairy And Soya Free Diet
Going Dairy Free
Dearest Reflux
Is Your Baby In Pain? Could It Be Silent Reflux?
We Finally Mastered Breastfeeding
Dear Reflux…

Other Blogs That Mention Reflux

A post about a premature baby with reflux, which includes hints and tips for parents: http://www.twinmummyanddaddy.com/silent-reflux/
A series of blog posts about two brothers with reflux: http://tobygoesbananas.co.uk/?s=reflux

Dear Reflux Mummy – An Open Letter To Any Mummy Whose Baby Has Suffered From Infant Reflux

Dear Reflux Mummy,

You are not alone.

I know there are times in the dead of night as you rock your baby back to sleep, as they scream in pain and arch their back, that you wonder why. I know there are times you have cried yourself to sleep wondering how you can take away their pain.

You are not alone.

I know you agonise over every feed. Have they taken too little? Have they taken too much? Will they bring it back? Will it cause them pain?

You are not alone.

I know you wonder if life would have been different if you’d breastfed them, or bottlefed them, or stood on the moon to feed them. I know you are questioning you’re every move.

You are not alone.

I know you have stood in doctors’ surgeries begging someone to understand. I know you are desperate for answers – to find someone who knows them.

You are not alone.

I know you are sad – overwhelmingly sad – about the days Reflux has stolen from you. I know you feel guilty for the days you’ve wished away.

You are not alone.

I know how much you love your baby. I know how much you hate yourself, because it is them in pain, not you.

You are not alone.

I know you have dared to hope. That you have thought a good day, may turn into a good week, that a good week may turn into a month, that this nightmare would be over. I know you have had that hope dashed time and time again.

You are not alone.

I know your heart is broken. I know you wonder if it will ever be repaired.

You are not alone.

I wish I had answers. I wish I could wave a wand, take away your pain and take away theirs. If only I could.

I reassure myself with only one thing.

I am not alone.

Each one of you shows me, each time you read a post, that there are an army of us mummies fighting this battle. And the bigger that army grows, the more I know that together we will find our answers.

Because we are not alone.

We are fighting this together. And together we will win.

Love Always

Another Reflux Mummy x

What To Expect If Your Baby Has An Endoscopy and PH Study

We are now, I am thankful to say on the other side of our tests: an Endoscopy and a PH study. Despite a small cold, the anaesthetist (much to our relief) felt it was safe to proceed. For those of you embarking on a similar journey, this is what we have learnt in the process.

Deciding Whether To Have The Tests

  • NICE guidelines for infant Reflux indicate that a specialist referral for an upper GI Endoscopy should happen if a child has a feeding aversion and a history of regurgitation, or unexplained iron deficient anaemia. As Number a Two is affected by both he was an obvious candidate.
  • Your baby will need to come off all medications in advance of the procedure. We were on Losec Mups prior to this, and had to come off five days in advance.
  • For us being off the medication was the hardest part of the process. Number Two stopped drinking which meant we ended up in hospital with him as he was dehydrated.

If Your Child Is Poorly

  • An anaesthetic won’t be given for an elective procedure (an elective is any non-life threatening emergency) if a child has a high temperature. So if your child is ill in the days leading up to the procedure, it’s well worth ringing the hospital. They can advise you if they think the procedure will go ahead in advance.
  • It is unlikely that the procedure will be cancelled if your child just has a small cold.

Things That Would Be Useful In Hospital

  • We would have found a toddler backpack really useful (the kind that come with reins attached would have been perfect). Number Two was two small to wear his monitor as a belt, and it was quite tricky for him to move around freely with the wire. A backpack would have led to a mush less stressful day for all of us.
  • During the process we had to record Number Two’s daily events (eating, drinking, sleeping etc.) onto a sheet along with how P.H.. Overnight I used the notes devotion of my phone. Because I co-sleep with Number Two it made the juggle that little bit easier. Managing a little boy, a pen, paper, monitor and light on my own was just too many things to deal with.
  • Some settings allow you to go home to complete the PH study. Some ask you to stay in. As we were staying in hospital we went prepared with some of Number Two’s favourite dissolvable snacks. We know how tricky getting him to eat can be and we wanted to ensure the data was as representative as possible.

Eating And Drinking

  • Children can eat and drink milk until six hours hours before the procedure, have breast milk until four hours before and have water until two hours before.
  • Your Child will be allowed to have a drink as long as they feel ok, about half an hour after waking up.

Once In Hospital

  • The procedure itself will be done under general anaesthetic and will last around 20 minutes. We were allowed to stay with our little man until he was asleep, and met him in the recovery room as soon as he woke up.
  • We were immediately told the visual results from the Endoscopy, but will have to wait two weeks for the biopsy results and the results of the PH study.
  • Although there is a wireless option for PH studies, it isn’t currently suitable for babies and young children, so your baby will arrive out of theatre with a wire attached to a PH monitoring device coming out of their nose.

  • The study lasts for 24 hours, it’s really helpful to have two adults around to navigate the wires and the form.

In all, despite how worried we were beforehand I was pleasantly surprised by how straightforward the procedure was. Hopefully once we get the results we will be able to begin to formulate a plan in the battle against the reflux.

What Parents Of Babies With Reflux Really Need Their Friends And Family To Know

If you have never experienced parenting babies with reflux, please take the time to read this post. You can make a difference to someone you love.

Our baby isn’t a difficult baby.

He isn’t, bad, naughty or manipulative. He doesn’t refuse his food because he thinks he will get better or wake 40 times a night because he is seeking attention. These things happen because he is in pain.

Please understand that he is not the problem.

Reflux is the problem. He is the bravest person I have ever met. Please love him unconditionally, exactly as he is. Especially on the days you find it hard.

Please Don’t:

  • Tell us your baby was a sicky baby too. Infant Reflux, is more complex than this.
  • Be offended if we quiz you about the ingredients of food that we (if we are still breastfeeding) or our child will be eating. We may sound (and at sometimes be) obsessive, but our obsessiveness is what helps to keep our children’s pain to a minimum.
  • Tell us, you are sure they will grow out of it soon. I know you mean well, but neither you not we know how long this will last.
  • Be offended if we snap or take things personally, sleep often feels like a very distant memory and seeing your baby in pain takes its toll. We know we are often less patient than we should be.
  • Tell us our child will eat/ drink when they are hungry/ thirsty – you do not know this.
  • Say, he looks fine to you. You aren’t there in the middle of the night to witness his pain.
  • Tell us he is naughty, bad, attention seeking, being difficult or trying to manipulate us. I am sure in time he will learn to do all of these things, but right now his needs are determined by his pain, not his behaviour.

Please Do:

  • Tell us your child’s joys and achievements. On a rubbish day, I love nothing more than hearing that a friend’s baby has learnt to smile, or clap or walk.
  • Ask us before you feed our child.
  • Understand if we ‘disappear’ for a few days – sometimes we need a little time to charge our batteries.
  • Keep trying to engage with our baby, he is wary of people he doesn’t see that often he has been ‘prodded’ by too many doctors. It doesn’t mean he loves you less.
  • Share stories of other babies with reflux that you know/ have heard about – hope is always a good thing.
  • Talk about food when we are there, it’s good to hear what your children are eating, it gives me new ideas that I sorely need.
  • Tell us you love him and us. We need to hear it.

As a mum infant Reflux is one of the biggest challenges I have ever faced. Most days I worry more than I ever thought possible. We have had three hospital stays (which will be four) after this week in the last two months – two due to dehydration, one down to anaemia and the other for investigations. Every day is a battle to get him to drink and eat. I never imagined this is what our first year of parenting our son would be like.

It has however taught me much about strength, mainly his but also ours. It has taught me about unconditional love, his big sister has never once complained about how much of our time she has lost this year. Number Two is the light of all our lives, she worships him and him her. It has taught me about friendship, I know our tribe will be there for us no matter what. It is they, who have prompted me to write this list. Our tribe get it, without them our year would have been much harder and I will be forever grateful.

If you know a Reflux family please , be kind, be thoughtful, be there for them. It makes more difference than you realise.