Reflux and Early Allergy - where to start!
Areas of special interest and close to my heart.
Hello readers!
I ummed and ahhed about the focus for this blog post in my ‘reflux and early allergy’ month. I have so much knowledge on many aspects of reflux and early allergy that my post could have taken many paths.
I could have written factual account on what is reflux or allergy, I could have looked at different aspects of each. I could have offered statistics and referencing galore. However, I decided that I would make this piece of writing a very personal reflection on those very early days of trying to work out what was causing my sons reflux symptoms and getting grips with the role allergy was playing in this - and to share some of the things I found most helpful (both personally and observations from a professional perspective).
I am sure that this will resonate with many parents who have faced similar issues with their children, and for those who haven’t I hope it will give you insights into what parents in these situations are perhaps going through.
I remember so clearly one night when my son was tiny, he screamed and screamed for hours on end, he was in so much pain and I just could not calm him down. I held him and swayed with him and shhed him and even though I felt exhausted beyond belief I knew that he needed me to be there holding him through his pain and I promised him I would find a way to help it stop. My husband tried to take him but it made no difference, he offered to take over so I could sleep in the spare room, and despite the tiredness screaming at me – yes you need to sleep – I knew I would not be able to switch off hearing my little one screaming and screaming in the depths of the night – when things always seem worse than in the clear light of day!
This was really hard for my husband, he felt powerless, he could see his child and his wife suffering and yet felt that there was nothing he could do. But let me reassure any partners out there – there is so much that you can so that will truly be appreciated. Acknowledge how tough it is – often we want to make it all better and so will perhaps say – “don’t worry we will get help, don’t worry … don’t worry …” but this can just make the other person feel that their concerns are not valid (even though that really was not the intention!) Instead try ‘it is really worrying but I am here for you, what do you need?’ Take the pressure off with helping with day-to-day tasks – without needing to be asked and without expecting lashings of appreciation. Try to help with some of the mental load tasks too. Bring you partner a drink or a snack, massage their feet, suggesting watching their favourite show together, leave them little notes to say how amazing they are. And don’t be afraid to share if you are finding it hard too. Open communication is really vital, and your needs matter too.
I went off on a tangent – but it was an important one!
Going back to those early weeks - I remember a little voice – but you should know what to do, you have worked with babies for years, why can’t you calm him! But I also remember the stronger voice saying ‘you know this is reflux (GORD) you know this is not normal and you know what you need to do to help. And I did, I was lucky, we were lucky! I remember speaking to an incredible midwife colleague and IBCLC, who said to me ‘Caroline, he is so lucky to have been born to you, you know exactly what to do where many wouldn’t’. I was so touched by this and it came at just the right time. She was right I needed to listen to my instinct, remember all my professional knowledge, training and experience and work out what my little one needed.
This night was a turning point for me. It was a clear signal that we needed to get to the bottom of my son’s discomfort. I felt really sure that the reflux was a symptom of multiple factors but I really struggled to be listened to by local health care professionals and this is a recurrent theme that I come across so often with my clients. So, what are some of the biggest struggles when trying to communicate with health care professionals and how can this improve?
1. At the moment one of the biggest struggles can be actually just getting an appointment and seeing the same person each time. Services are overstretched, staff are overstretched and when you are also overstretched yourself then it can make for a very tense situation. Being conscious of this can help.
2. The ‘all babies cry’ and the ‘anxious parent’ arguments are sadly still used inappropriately. Many GP’s still do not have a whole lot of experience with reflux and early allergy (Ige-mediated allergy is better recognised but there is still a lack of information in certain GP practices on non-Ige mediated allergy and Fpies (see below for some links to information that outlines the differences – I will also create some fact sheets about these too.) Of course, there are some babies who have a more ‘vocal’ temperament and there are parents who are really struggling with anxiety and this should not be ignored, however I have seen all too often parents dismissed as anxious when their gut instinct is saying something is wrong, and it has turned out that their gut was actually right, and if they had been listened to sooner the issues would have been tackled much more quickly. In this instance here are some little things to consider:
- Inform yourself from reliable sources, but avoid over researching as you can end up down all sorts of rabbit holes. There are lots of so-called allergy and reflux experts out there who have very limited knowledge and experience but are great at marketing themselves Sadly many present a lot of misleading information so be cautious and check the credentials of any ‘experts’ – a short training course is very different from an actual nationally recognised qualification!
- Make a list before seeing your GP or health care professional. Take pictures of any rashes, blood or mucous in poop (mucous is not always a red flag. but worth mentioning as part of a bigger picture). Take videos of behaviours or ‘symptoms’ that are concerning you and consider keeping notes for a few days of feeding and sleeping if you are finding this is impacted by the potential reflux or allergy. If you think that there is allergy involved then keeping a food and symptom diary can be really useful (and if you baby is being fed human milk then a list of food consumed by lactating person).
- Take someone with you to support you during your appointment, to concur with the observations you are making about your baby – or simply to hold your baby for you and soothe them if they are unsettled, allowing you time to focus on speaking to the DR without being too distracted. Two pairs of ears are also better than one at remembering what was said, you can also take notes to help with this so pop a pen and paper in your handbag/pocket!
TO BE SUPER CLEAR – IF YOU THINK YOUR CHILD IS HAVING AN IMMEDIATE TYPE ALLERGIC REACTION THEN PLEASE SEEK IMMEDIATE URGENT MEDICAL ATTENTION – YOU DO NOT NEED TO BE PREPARING LISTS. IN THAT INSTANCE YOU NEED TO BE CALLING FOR HELP ASAP!
Some information on the signs to look out for can be found here: https://www.anaphylaxis.org.uk/about-anaphylaxis/anaphylaxis-signs-and-symptoms/
3. You may need to seek the advice of several different professionals. Both reflux and early allergy I find can be both over diagnosed (with other issues actually being the cause of the symptoms – and especially parents self-diagnosing based on information on social media that does not always take into consideration ‘what else could it be!) But I also see it being missed a lot too.
It can be a really good idea to have an infant feeding assessment done – some reflux symptoms can sometimes be similar to those of certain feeding difficulties including poor positioning and attachment (in my experience both with breast/chest feeding and bottle feeding), fast letdown and too fast a flow bottle teat (or a style of teat that is not suiting the baby’s mouth) and tongue tie. So, having a feeding assessment done can help rule out all of these things. If you suspect that there may be a tongue tie then having a feeding assessment done by someone who also specialises in tongue tie can be beneficial, this website is helpful:
https://www.tongue-tie.org.uk/?locale=en
You may also end up needing to see a paediatrician, paediatric gastroenterologist, paediatric dietician and/or allergist.
4. Do not be afraid of seeking a second opinion. It can be so hard when a health care professional dismisses your concerns or when you do not feel listened to. Fortunately, there are many empathetic and compassionate health care professionals but sadly not all are like this. It can be hard to question the authority of a health care professional especially when you are feeling tired.
All of this can take time! Whilst you are waiting to get to the bottom of your child’s reflux, these are some things I have found can help relieve some of the discomfort your baby may be feeling, and also help you cope!
1. Smaller more frequent feeds.
2. Holding baby upright for a good 20-30 minutes after a feed (babywearing can be useful for this – I am writing another blog post on this and will link when published!)
3. There is limited evidence on raising the head end of babies sleep space, however some health care professionals recommend it and some parents find it helps. If your Dr recommends trying this then make sure this is done safely (some bedside cribs have the option for it to be on an incline) and that the mattress still remains flat rather than dipped in places.
4. In moments when your baby seems in discomfort you can try laying them on their left side (this makes it harder for the stomach acid to flow up and down the oesophagus due the physiology of the stomach). Do not leave a young baby unattended in this position, nor leave a young baby sleeping in this position, turn them on to their back once asleep as per the Lullaby trust safe sleep guidelines: https://www.lullabytrust.org.uk/safer-sleep-advice/
Unless advised otherwise by your health care provider.
5. Carry baby in the tiger in the tree position and hold your hand gently on their tummy applying a little pressure to help it to relax, gently massage their tummy in a clockwise motion again to help it relax.
6. Avoid patting to burp baby. Instead try the wonderful Lyndsay Hookway’s ‘wonky winding’ technique.
You can either hold baby facing outwards on their left as in the link above or you can achieve a similar position by holding baby facing towards you, over your right shoulder, with their legs towards the middle of your chest. You then simply hold them there and wait. No patting, you can gently stroke baby’s back if you really feel you need to do something, or if this is calming for baby. This position puts baby’s stomach into the best position anatomically to let the air out when the little valve at the top of the stomach opens automatically. Avoiding patting allows the air bubbles to collect at the top of the stomach under this valve ready for when it opens. Patting is a bit like shaking up a bottle of a fizzy drink, it disperses the bubbles making them take longer to collect at the top of the stomach.
7. Keep a symptom diary and include what you are eating if breast / chest feeding to see if there may be a pattern related to something you are eating. Avoid cutting out lots of different food groups without the advice of a health care professional.
8. Try and reduce environmental stimulation for baby if they are unsettled – avoid lots of noise, bright flashing lights, uncomfortable or itchy clothing. If your baby has gut symptoms avoid tight clothing around their tummy.
9. Try to find time to do something that grounds you, this may be a walk in nature, or simply standing barefoot on a lawn. It may be a guided meditation just for a few minutes, or taking asking someone to hold baby the time it takes for you to have a bath or shower and really focus on how the water feels, how it sounds, the smell of any products that you use.
10. Watch, read, or listen to something that makes you laugh. Think of the mantra – Calm parent, Calm baby (well it can help!)
11. Remember you are stronger than you think, but it is not a sign of weakness if you need some help. Being a parent is hard, and having a child who is suffering and not being able to ‘make them better’ is even harder. Give yourself credit for everything you are doing and try and focus on the little moments or joy, on the silver linings and reach out and share who you are feeling and ask for help.
Sometimes when your parenting experience is not as you imagined it would be then you have to go through a grieving process, this does not mean that you love your child and less, or that you are not good enough, it means that you are human and you have a wide range of emotions. In order to fully experience life, you need to experience the full range of human emotions and the ups and downs of this adventure that is living. If you are reading this and finding things hard right now, focus on getting through the next day, or the next hour, or just the next ten minutes, and if you need to then pick up the phone, or open your door and ask for help.
I hope that some of this will help at least 1 person reading. This is literally the tip of the iceberg of what I have to say on reflux and early allergy and I will write more on living with allergy in a future post (in the meantime you can find a free webinar here - https://www.rosan-paediatricdietitian.com/webinars/living-with-food-allergy/ - on living with allergy with the wonderful Dr Rosan Meyer, and myself. Over the next few months, I will add more posts on this subject but for now I will sign off as this already is super long! Below I will paste some links to some additional information on reflux and early allergy in case you are reading a little further. Please chat with me about this subject in the comments and if you feel you could do with some bespoke support then do not hesitate to take a look at my website for information on the services that I offer.
Sending lots of love and strength.
Links to some reliable information about some of the topics mentioned above:
Information on a fast letdown, that can sometimes cause refluxy symptoms in breastfed babies:
https://kellymom.com/bf/got-milk/supply-worries/fast-letdown/
Tongue Tie - https://www.tongue-tie.org.uk/what-is-a-tongue-tie-restriction
Nice guidelines GOR /GORD: https://www.nice.org.uk/guidance/ng1
Allergy UK for general information on all types of allergies:
https://www.allergyuk.org/types-of-allergies/
Information on FPIES : https://www.fpiesuk.org/what-is-fpies
Cow’s milk protein allergy:
https://www.bsaci.org/wp-content/uploads/2020/09/Milk-guideline-pdf.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3716921/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6689885/
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Last updated: 09.08.2023
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