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The grunts, whines, screams and chokes we have heard form this “silent” affliction have never been on the quiet side.
In fact, even when my baby is sleeping I can still hear acid rise up his throat and him gulp it back down most nights.
Dexter like his brother has cows milk protein allergy. We got this sorted pretty early after trying a couple of milks and thickeners. This however didn’t alleviate the constant grind of being awake from 2am onwards until breakfast time, of Dexter fighting a losing battle against his body producing acid whilst last propped on my shoulder. I felt guilty every time I fed him knowing what was coming.
Dexter has silent reflux, he doesn’t throw up his bottles like in acid reflux, in fact he would feed and feed to soothe the burn of acid in his throat. Silent reflux is the flow of acid up from the tummy into the mouth or throat. It’s normally swallowed back down rather than vomited out as milk like in acid reflux. He comfort feeds to fight the pain of the burn and as such doesn’t struggle with losing weight. He aspirates frequently on his feed and acid mucous, this caused extreme burning to his throat/ lungs which causes him to shriek in pain and choke.
His problems present themselves in the day as a constant chesty wheeze, he struggles for breath, he coughs, he chokes, he stops breathing. This sounds over the top dramatic. In fact it’s a constant reality that scares me everyday. When dexter was three weeks old we almost lost him when he choked on his acid reflux. He choked, went red and silent, then blue, floppy, unresponsive and foamed at the mouth. The ambulance was on the way but we could not bring him to, we back slapped him, we screamed, we panicked. I couldn’t hold him, I couldn’t help him. I am a nurse and yet seeing your child in this state destroys your person. I was powerless. My husband was calmly struggling to help him, screaming underneath “Dexter come on come ON” like I was outwardly.
My husband fished his fingers into Dexters through a few times and the third attempt he brought up a big thick string of acidic mucous.
And Dexter gulped. And breathed. And cried.
The ambulance showed up 14 minutes later. He was checked over but doing well. They warned he may get a chest infection from aspirating, but on the whole he was fine, daddy saved his life.
What have we tried?
We have been through a range of medications to try and help. Initially he was offered Infant Gaviscon to thicken is dairy free Neocate milk and reduce acid. This did absolutely nothing but constipate him. Constipation and reflux..we had one sad baby!
Then we were switched to Carobel to thicken the Neocate with Omeprazole Losec MUPS dispersble tablets. This was a struggle for a good two weeks of Dexter being too small to easily take in the granule formula. This left us to our biggest struggle. Getting prescribed the Omeprazole but in suspension form. This is extremely expensive and so it was a fight to convince the GP and pharmacy to prescribe. If the medication is ordered and not used the pharmacy foots the bill. It has to be specially ordered and has a short shelf life. Dexter still has this morning and evening, but ordering is a challenge every single time. I am always advised it’s expensive so can’t be ordered in advance, I can’t order when he runs out as it takes almost a week to order in and it’s dispensed in small bottles so it needs to be ordered about every week and a half. I understand how expensive it is, but he needs to have it. Why should it be such a struggle and fight?!
We have seen consultants numerous times anywhere from increasing his dose, check his wheezing (initially passed off and treated as asthma with an inhaler until someone believed me that he was aspirating) and trying different medications mixed in. Ranitidine was tried and failed.
Most recently he was prescribed Domperidone, which helps the gut move quicker and there for it should reduce the amount of time for acid to be present in the stomach. Dexter had to have an ECG as there are links with Domperidone having cardiac side effects of people with existing heart conditions. Luckily we were ok to take.
At present we are awaiting another GI consultant appointment as Dexter is still chesty, wheezing and struggling with acid gulping. The Omeprazole has been increased by myself and the consultant, we are almost four times over the original dose we were on and it also increases with weight chane, we have Domperidone three times a day also. We are weaning early to help with the symptoms and find that Dr Browns bottles help him feed more comfortably. We continue to use the Snuza Hero to alert us for any choking/aspiration over night. He is fed upright and kept upright after feeds. I can often tell if there is going to be a flare up as there is a strong acid smell in his mouth. He is much better controlled overnight and sleeps through, our main problem times are during/ after feeds in the day and around 5pm.
Support and what to look out for
We have had some fabulous support from Reflux/Silent reflux groups on Facebook, if you are struggling please have a read as it helps just to hear that someone has been where you have.
The symptoms for us were/are
- A constant grinding/growling noise
- Thrashing of head and arms whilst asleep
- Hearing the acid being gulped down normally followed by a scream and complete inconsolable crying as it burns
- Choking on mucous
- Acid smell to the breath
- A constant chesty wheeze
- Aspirating on feed/ acidic mucous
- Weight gain due to comfort feeding
If your little one has struggled with Silent reflux what worked for you?