Severe reflux mums' pls help -What do you sleep your baby in at night time?

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Permalink Reply by emma short on July 31, 2009 at 22:44

Hi Carolyn,
so sorry to hear what you are going through. My daughter has severe silent reflux too, the only thing that works for us, is putting her in bed with me. While her dad sleeps on the settee. Recently though she likes to be on a pillow that is not so thick, she has that little bit of elevation but she can also strtch her neck away from the acid. Sometimes though ive had to cradle her in my arms in bed.
The more elevated she is sometimes it can make her worse as it puts too much pressure on her tummy, for example.. the carseat is a complete no no for us, and the buggy.
I hope you find something that works soon..What meds and formula is she on? xxx

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Permalink Reply by Carolyn Brathwiate on August 1, 2009 at 0:16

She's currently on maxalon, lactulose and nutramigen2 with carobel. With have been through all the usual suspects in terms of medication domperidone, ranitidine, omeprazole, enfamil. Had ph study, barium swallow, barium tube dye connection of airways analysis, ultrasound and we have an endoscopy coming on aug 14th. We've had a few hospital stays amd she's on the verge of another from the acid/milk entring her airways when refluxed.
I can't lie her flat at all, she chokes as soon as we do that. Even changing her nappy results in coughing and choking fits. She even refluxs any stage 1 food unless it's thickened. She had apnea from her reflux so we have to keep her upright, if i could put her in our bed there'd be no problem with her cot.
What is your daughter on?

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Permalink Reply by Victoria on August 1, 2009 at 14:00

I cannot recommend the safetsleep more - they do a reflux one which wraps round the waist and goes through the legs so you can prop the bed up to any angle you like and it will be fine as the bubs won't move

I bought one for my son who didn't have reflux and he still sleeps in it now (he is 2) he can undo it but he likes the safety net it gives him - my little girl also has one and I think they are great great great and worth the money ten fold

Google it and look at the NZ site as its the most comprehensive

Also just FYI they have never had a baby suffer SIDS who has used one of these - it might be a fluke but as they have solds over half a million thats good odds for me

Hope it helps

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Permalink Reply by emma short on August 1, 2009 at 19:49

Hi Carolyn, My daughter was on ranitidine, it didnt work, She has also tried Domperidone which made her worse.
At the moment she is on Neocate with Carobel, and Omeprazole, she is still no better on these though, i currently trying to get her to see a GI pedatrician.
Im sorry to hear about your little ones sleeping issues, i wish i could offer more advice, Holly has sandifer syndrome, which is brought on by her reflux, and is distorting her body all through the day.
Im hoping for a PH probe next, as im so sick of trying meds and failing xxxx

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Permalink Reply by Carolyn Brathwiate on August 2, 2009 at 22:38

Hi,
Yes ranatidine wasn't strong enough for my LO or rather I couldn't give it enough times as it only seemed to lasts 3 hrs with her and you can only give 3 times a day - i was giving extra doeses as it wasn't enough and got told off for that so they tried her on omeprazole.
good luck with the ph study. have to say try not to pin all you hopes on it helping you with the meds side of things, all it really told us when we had it was how often she was refluxing, how long each episode lasted and the acidity level that was being refluxed. They just up'd the strength of her treatment but Unfortunaely it still means you have to go through a trial and error process with meds.
I thought by 9mths we would start to see improvement in her symptoms but it's actually getting worse as she is now spending more weeks unwell with respiratory infections from reflux than she is well.
Finding it really hard as it seems to consume my whole life! Sure you and others must find the same xx

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Permalink Reply by Carolyn Brathwiate on August 2, 2009 at 22:25

Hi victoria,
Thanks so much for this. I was looking at one of these but couldn't tell whether it attaches to the cot matress in a way that would stop the whole thing sliding or not.
Please please could you give me the url to a site which has a reflux one cos I have googled it and can't see which is which etc. Don't want to get the wrong thing cos I've bought so many things already. Had seen a big wedge with a harness on it but it's out of stock and I'm not sure if anyone has used one to know if it's any good.
Many thanks
Carolyn

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