My child has Silent Reflux.
Saying these words now, still makes me shudder. Mention this to another parent thats going through the same thing, and you will get the same response. Because, Silent Reflux isn’t silent at all…….far from it. Hearing your baby screaming in pain is the one thing you will find hard to forget.
Having a child with Silent Reflux at its worst becomes physically and mentally draining and at times is so relentless that it will make you question many things. You are desperate to speak to someone about it in the hope that they can relate but at the same time feel guilty as you don’t want to come across as being negative.
I don’t think we have ever felt so helpless.
Ultimately, all we ever wanted was for the pain to stop and for our son to be the happy baby he deserved to be. This immense love you have for your child, wanting to protect him and take the pain away but not knowing how was something we weren’t prepared for.
It was just so hard……
I think i’ve rewritten this post about eight times already. I wasn’t sure i would feel completely comfortable laying out our feelings so openly, its been a difficult road for us as parents and an even harder road for our son.
But, it was on the days that i felt at my lowest that i would look for posts like these, in the hope that i could understand more about this horrid condition but more importantly to hear that it will get better. So, here it is, our story so far on living with Silent Reflux.
What is Silent Reflux?
Silent Reflux isn’t a condition we’d heard of prior to having our son, its not something you are taught about in NCT/Antenatal classes and unless you know someone going through it, you will probably never hear of it. Its also a bit of a taboo subject, not all Doctors are keen on giving out this diagnosis with a lot of them passing off the symptoms as ‘Colic’, at least this was our experience at the start.
Silent Reflux occurs when the stomach contents are regurgitated and then re-swallowed, causing a lot of pain. The more the contents go up and down the oesophagus, the more painful it becomes. Its also more difficult to diagnose based on the fact that babies don’t spit anything up but have all the other symptoms associated with it, hence the name Silent Reflux.
Two days after we had brought our son home from the hospital, we realised something wasn’t quite right. He would scream day and night, he started to refuse feeds even when he looked hungry and when he did finally manage to eat he would arch his back and writhe around in pain. He constantly had the hiccups, was very gassy and didn’t sleep well, if at all. It was completely soul destroying to see.
He didn’t like to be put down so we would take it in turns to hold him, we tried the carrier but he hated it, we also tried keeping him upright in his bouncy chair and this would provide some relief. When we did manage to get him to sleep, it was only because we had laid him down on his side in his cot. When things were really bad, he would sleep on our bed in an almost upright position or we would place him in his stroller. Of course there were also the nights where we would he would only want to be held whilst we walked around the house. The one thing that made him really upset was lying on his back, this made the symptoms much worse. This also made it very difficult when we had to leave the house, so we transitioned from the bassinet to the chair of his stroller quite early on.
Before i continue, i would like to make it clear that i am not a medical professional and i realise that some of the things we did may not be advisable when you have a small baby. Please always seek the advice of a medical professional if you feel your child needs it. These are the things we did to help us survive those first few months and to help alleviate some of our sons discomfort.
The first time we checked ourselves into A&E was because little man hadn’t fed for 24 hours. This started to become a regular thing with him which was really distressing to see, he would desperately try and feed only to pull back and start screaming, it was quite obvious that he was in pain. We were told by the paediatrican on duty that it sounded like he had a condition called laryngomalacia (floppy larynx) which is why he sounded so congested and was making it difficult for him to feed.
Laryngomalacia is the softening of the tissues of the larynx (voice box) above the vocal cords. This means the tissue can fall over the airway opening and partially block it. The condition is common in infants and they usually grow out of it, in our sons case we were told it didn’t sound severe and to keep trying with the feeds. We were then sent on our way.
I tried all sorts of things to get him to eat, cutting out dairy in case he had an intolerance, holding him upright so he would feed more comfortably, pumping and then bottle feeding. Sadly it got to a point where i just couldn’t breastfeed anymore as it was too painful for him to drink laying down and i wasn’t able to pump enough milk.
Even with our best efforts, nothing improved and we were back and forth with the Doctors. We knew it was something more than colic or his floppy larynx. When we were finally given some advice from the doctors they gave us a prescription for infant gaviscon. Unfortunately all that did was make him constipated and after three weeks we gave up as there was no difference in his well being at all.
We were then told to try a thickened reflux formula, which we did, but this was also a no go. Half an hour after he drank it, he threw it up and then screamed for the next 12 hours. We took it in turns to try and get some rest whilst the other held him and walked around the house hopelessly trying to soothe him.
He was exhausted, and so were we.
For us, this was the last straw, and i decided to take matters into my own hands. After months of researching online, reading articles, discussions on forums and watching videos, I was convinced all the signs pointed to Silent Reflux. I took notes, videos and pictures every time our son displayed any of the symptoms that related to this condition and then took this information to our GP.
Four months in we were finally heard and a referral for a GI Paediatrician was made.
To understand the symptoms our son displayed, i’ve made a list below:
- Constant runny nose
- Coughing/choking when feeding
- Hiccuping and sneezing a lot
- Pulling away from breast/bottle and screaming
- Screaming for more than 4 hours straight
- Didn’t sleep well, if at all
- Arching of back after feeding
- Discomfort when lying on their back
- Gurgling/rumbling sounds from tummy
- Bottom burps a lot
At 4.5 months, we met with the GI paediatrician.
Our son was given a blood test to check for a cows milk allergy which came back negative, but i knew that there was still the possibility of him having a delayed cows milk allergy which wouldn’t show up in the results. The only way to confirm this was to try a formula low in cows milk protein and see if there was a change in his symptoms. On this basis, the paediatrician gave us a prescription for Omeprazole (losec) and a formula called Nutramigen.
Omeprazole works by stopping the production of stomach acid which is then regurgitated, causing the pain. Within two weeks, we started to see improvement. Not all the symptoms had gone and he still seemed a little uncomfortable, we knew it could take a little longer to kick in so persevered.
By week four he still showed some discomfort, especially at night time. The screaming hadn’t completely subsided and so i decided to try him on a bottle of Nutramigen. Nutramigen is a Hypoallergenic formula where the cows milk protein has been extensively broken down so the body doesn’t recognise it as a whole protein; which means it is much less likely to trigger an allergic response.
To my surprise, he chugged the whole thing down in one go. By the end of that week, his symptoms disappeared.
He slept through the night without any of the squirming or discomfort, the hiccupping stopped and he would welcome the bottle and finish the lot without any issues.
He was a completely different baby. He was a happy baby.
We couldn’t believe it! He smiled more and cried less, we didn’t fear taking him out in case of an outburst of screaming and bit by bit the anxiety disappeared and we started to look forward to planning things as a family.
We have been very lucky in that the support we have found in our friends and family has been overwhelming.
Little man is now 21 months old, over the past two months we have slowly weaned him off his medication and i’m happy to say its been successful. We did attempt to do this earlier, just after his first birthday, but one week in and all of his symptoms came back, it was disheartening at the time but we knew we had to wait a little longer.
There are some children that will suffer with Silent Reflux until they are older, so we knew we just had to be patient. This time round we did it very slowly and although some of this symptoms emerged, it wasn’t severe enough for us to believe he wasn’t ready.
In July, we also found out that he suffers from an egg allergy. He had awful eczema that he scratched red raw and we were advised to avoid dairy and egg, but also wheat and soy just to make sure we knew what was causing it.
We were then moved over to a completely dairy free formula called Necoate (this is probably the formula he should have been on from the start). Within three weeks, his eczema had cleared up and he hasn’t had a flare up since. (I will be writing more about his allergies and food in other posts, but he is now back on wheat and soy with no issues).
We have since taken him back to see an ENT specialist who has confirmed his floppy larynx has gone and that there is still a little swelling in his oesophagus due to the reflux but all in all he is near the end of the road. You can’t imagine the relief we felt when we heard this.
It confirmed all our perseverance with the doctors and putting him on medication was the right decision for him because he DID have this condition.
We could finally see the light at the end of the tunnel, knowing that he would soon be off his medication, not in any pain, eating well and growing into the happy boy we now know.
To the parents going through it
Everyones journey will be different and we know that our son could have suffered much worse, but remember you know your child and if you feel that they are displaying signs of reflux, then keep fighting your corner.
In the same breath, remember to take care of yourselves as you will be so focused on your babies well being that you will often forget about your own. Don’t be afraid to ask for help when needed, it will make all the difference in ensuring you are in the right frame of mind and have the energy you need to take the best care you can of your little one.
Finally, please remember you are not alone and i hope our story shows that. With time, things will get better.
P.S. Some tips on what we did to help our sons reflux can be found HERE