Losec, neocate make no difference – help!

My issue is with my second bubba, but I’ll start with my first son for background.

Ds1 started showing signs of silent reflux around 6-8 wks. After many doc visits, we finally had him put on losec suspension – I think it was 5mg once daily. We had two blissful weeks and then of course back to screaming during feeds, catnapping, refusing bottles etc. His dose was doubled so he was having 5mg twice daily. No real improvement on this but his paed straight away suspected mspi.

Ds1’s symptoms were fussiness, poor sleeping, bottle refusal and chronic constipation – not textbook mspi. His paed wanted to rule out other things so we trialled different losec formulations, wind meds, soy formula, pepti jr, feeding specialists and then when he was barely drinking anything at about 5 mo we started him on solids. As he wasn’t drinking much milk I gave him loads of cheese and yoghurt to make up for it. He loved it and thrived on solids. And then he refused totally to eat or drink anything.

We were admitted to hospy where they did tests and put an ng tube in and put him on neocate lcp. Probably the worst time in life. I felt completely helpless. He put on heaps of weight in a very short space of time and the diagnosis was confirmed – cows milk protein intolerance. We took the tube out after a few weeks and reintroduced the bottle. It took awhile to get past his aversions and we were put on a “white diet” – pears, chicken, bread, rice – and not much else. He started drinking lots of neocate. His eating was getting better and we started introducing dairy soon after his 1st bday. He is now 2.5 and has been on dairy and cows milk for over a year. 🙂

When I fell pregnant with ds2, I was terrified about possibly going through this all again. We decided if he showed any signs of mspi or reflux, we would put him straight on losec and neocate.

He bf well initially, but my supply (as with ds1) was terrible and despite trying pumping, meds and herbs we had to sup feed. At 2 wks he starting crying and getting fussy. So into neocate – a marginal change at best. A week later, 5mg losec twice daily in suspension form. No real change. If anything he was worse. I tried wind drops. I tried winding him constantly. Distracting him. Everything we did with ds1. Nothing worked. He was worse than ds1 ever was and I was getting worried. I thought that because we didn’t know about the mspi with ds1 that it had to be the reason for our troubles – that by putting ds2 on losec and neocate he would be fine. So why wasn’t it working?

It was recommended to me to double his losec dose to 20mg daily. My paed said no, but eventually agreed and I decided to switch to losec tablets, dissolved in cooled boiled water. He has been worse if anything on this. I’m not sure if the losec is causing him pain, if his reflux is getting worse or if maybe it’s something different from reflux that we are missing. He screams and cries a lot – particularly during feeds. He chokes a bit when feeding so i added a bit of karicare thickener and he now has a bit less wind which is good. I discussed cutting losec out entirely incase and his paed said no for now. I asked to see a gi and she said no – if it came back as mspi or losec the treatment would be the same so there was no point. I asked if it could be any thing else and was told no. I asked what we do if we starts refusing feeds and was told we just have to hold out to solids and hope it improves. There’s nothing else we can do.

Of course it HAS gotten worse. Much worse. He screams as soon as he sees the bottle. Some feeds he won’t drink anything. Very occasionally he will scull a bottle, but that is now rare. I’m not sure what to do now as my paed has already said she won’t increase his losec dose. He is already on neocate so I’m not sure what to do.

The past few days have been shocking – he has barely drunk anything. I halved his losec dose in desperation and he fed a bit better but he is again really hard to feed. Now I can only feed him by constantly bouncing him on my knee, feeding him in front of the tv up close or walking around. Previous experience tells me this won’t last long and I’ll soon be searching for other ways to distract him so he will eat something – anything!

I’ve read a lot on this forum and I’m grateful to have found it. It’s a bit confusing with the terminology as I’m in Australia and the meds are different here!

I’m hoping someone might have some advice on where to go from here? I’m very worried at what the future holds for us as right now it’s looking very bleak. I’m not sure whether to increase his losec dose or take him off entirely in case he is getting tummy pains from it. I don’t know whether to try something else like zoton or nexium? Or something else entirely.

I’m not getting a lot of help from docs here – the standard line is that they will grow out of it eventually. But I’m not prepared to watch my 2nd child starve himself and be fed by a tube. I need to find an answer and get help myself it they won’t help me.

So if anyone has an idea on next steps for us, I’d sure like to hear it. I’m feeling pretty down and desperate ! 🙁Champagne4lulu2011-04-24 06:54:25