GERD / Sandifers syndrome

[Clairep1988]

My DS was born prem at 30 weeks and ever since he was in the hospital has always had reflux. He was fed EBM for 3 months and transitioned onto Nutriprem. Since going on to full formula, the symptoms have got really really bad. Basically at 2 hours after his feed, he will start writhing, and kicking his arms and legs inwards then outwards and sounds like he has something in his throat. This will continue until he is eventually sick. This happens after every feed so I'm just waiting for it! This process was just unbearable as I knew what was around the corner as he would wake up screaming.
Our Paediatrician has now put him on omeprazol and nutrimigen - currently waiting for improvement! When I mentioned about the 'thrashing' symptoms, he said it is not unusual when a baby has severe reflux to act like this and can get misdiagnosed as seizures. I've done a bit of Doctor Google myself and I'm fairly certain he's referring to Sandifers syndrome (I imagine he didn't give the name as he has an idea about how obsessed I would get with this, as he was on the NeoNatal ward when DS was in there!)
Does anyone have any experience of Sandifers? Is this what it sounds like?
How long before they grow out of it? It's just so awful expecting his little episodes... they really do happen like clockwork. I thought we'd be sorted by now so it's heartbreaking to see him so uncomfortable thanks in advance xx

I should also mention he grunts 24/7 with the occasional gag :-( poor little thing, his throat sounds soo sore xx

Dr. Google is nobodies friend. My DS had reflux and (an undiagnosed at the time) dairy allergy. I looked things up myself and gis symptoms also led to sandifiers syndrome. He's 16months now and has grown out of reflux and his dairy allergy is under control. No more writhing, choking, wriggling, twitching, etc. So it wasnt sandifiers syndrome at all.

Oh that's really good to hear, thanks for replying. It sounds like your little one did exactly what mine is doing. I'm FTM so all these noises / spasm like movements are so scary! Can I ask whether weaning made
A difference to reflux?
I'm hoping the nutramigen is going to be a step in the right direction!

I hear you with being scared as a FTM. DS is my first too and I think I developed post natal anxiety after Googling all of his symptoms.
His reflux did die down when he began weaning. But it's hard to tell if weaning was the cause or just him generally growing out of it 🤷‍♀️

My DD was never officially diagnosed with Sandifer’s, but definitely had all the hallmarks of it. She used to contort herself into some horrible positions and it was quite scary.

The important thing to remember about sandifer’s is that technically it’s just a symptom of reflux, it’s not something that causes reflux. Once the reflux is under control it should stop.

Things got better for us around the 5 month mark. We combifed so I gave up all dairy and we were prescribed nutramigen. DD also took ranitidine which helped.

She’s 15 months now and aside from the fact that we’re both still off dairy you wouldn’t know she’d had anything wrong with her. I couldn’t say exactly when it was no longer an issue, she just got better slowly and steadily.

@Bethacus thanks so much for replying!
My DS will pull his limbs inwards then fling them outwards, it's just awful to see as they can't tell you what's wrong.
Can i just ask you what you considered to be the reflux under control? He's now on Nutramigen which is making a difference inbetween feeds (less trapped wind ./ less crying and less demanding to be held) but he's still having these 'spasm' movements and the sickness. I know they can still be sick on omeprazole but it 's the writhing which raises concerns for me.
Ahh it's so difficult as i really want to keep working on medication until all symptoms have gone, but not sure whether this is the best he can get for now and just wait to outgrow it xx

Well, I had around a month of her coming off almost every feed screaming, so once that calmed down I felt like we were getting somewhere! It was so demoralising.

DD’s reflux was silent, so she was very rarely sick but would have these spasms that were really horrible. You could just tell she was very uncomfortable and it was horrible to watch.

We went back to the gp a couple of times to change her doses, and it took about 6 weeks to really feel like she was getting better.

I have stumbled across this and I am in the exact same position as you were in 2019.

please can you share an update and what worked? @Clairep1988