Sheffield Baby Reflux Support Group

Comment by Tixy on March 17, 2009 at 6:54pm

Is there anyone there??

Comment by Susie C on November 2, 2010 at 1:38pm

Hi
I have a 6 month old boy who suffers from reflux and 'lactose intolerance' (daignosed by reducing substances in his poo sample when he was 1 month old as he had explosive green diarrhoea). The reflux was initially silent but he is now vomiting after every milk feed (breastfed). He is currently under SCH and currently on rantitidine and domperidone but is still suffering, particularly at night when he wakes crying every 45 minutes-1.5 hours. Can anyone advise?

Comment by Tixy on November 5, 2010 at 6:21am

Hi Susie

You have my sympathy, our little boy is now 2 and half and has come through a very difficult time. At the time I posted below he was just one and we were still going through a terrible time.

He was diagnosed at 2 months as having an intolerance to the milk protein (he had shown blood in his stools) and as a result I was placed on a milk free diet (I was breastfeeding). He never settled very well and was constantly windy, crying & being sick. We could only get him to sleep by settling him in an upright position. At 20 weeks I took him to the GP (again) as I was so upset and he just didnt seem right and I was fed up of being fobbed off with that all babies get sick and it was likely to be colic. He was admitted to hospital and was diagnosed with reflux. He had started to lose weight and I was no longer producing milk so I was placed on Domperidone (it stimulates the milk supply) and I was expressing using a double electric pump to try & get things going again and in the meantime we were supplementing his feeds with Neocate ( a milk free formula) He was also placed on Gaviscon & Ranitidine. He did improve a little and it was if he got used to the meds and we were back at square one. Going out was a nightmare as everything had to be stragically planned. I could cope with the sickness and being unsettled most of the time but the main issue was getting him to sleep at night and him staying asleep. Like your little boy he was up every few hours. You expect not to get sleep when they are tiny but by the age of one he was still the same & I was struggling to cope. We had tried every gimmick on the market and we had been told he would get better when he was on solids. All that happened was he was bringing back coloured vomit instead. Then we were told he would be better when he was walking and he wasn't. We found ourselves wishing his childhood away. Every website I went on, people seemed to find solace in the medications he was on and their children had grown out of it pretty quick.

Just after he was one we were finally referred for a gastroscopy at SCH ( he was now on Lansoprazole, domperidone & gaviscon and we were still no better) The results showed that he had reflux but the medications should be helping so the consultant suggested that maybe he was intolerant to something in his diet so we excluded wheat, milk, egg, gluten & soya. It was very hard to police but we would've tried anything at that point and miraculously after one week of exluding everything he slept for 10 hours straight! Gradually we introduced things back in, in the hope we could identify what the problem was. This was hard as sometimes if he was unwell, it was difficult to know whether he was just unwell and unsettled or gripey because of the food as by now he had stopped being sick, he was just generally unsettled. It took 6 months and by then the consultant suggested taking him off his meds and letting him have a full diet. By now, most children grow out of these intolerances. So now he can eat anything (although he won't as he spent that long without some foods he won't touch them now!!) and he sleeps loads better!

I suppose all I want to say is that there is light at the end of the tunnel. For us it was very difficult to see as it went on for a very long time and for some people medications just don't help. There seems to be no explanation and they just grow out of these things. All I wanted to know is when!! Ours is probably the exception to the rule and it doesn't normally go on for 18 months so try not to think that you will be at it for ages. Just think that it will come to an end and leave it at that. I really believed he would be like this for the rest of his life! I hope that you come back on here soon and tell us everything is ok

xx

Comment by Susie C on November 6, 2010 at 4:58pm

Hi Tixy
Thanks so much for response. It all just seems like such a long time - and I am really wishing his childhood away which is so hard. It is so hard getting no sleep and I have to go back to work soon which is going to make it even harder.
He is 6 months old this weekend and I agree you expect them to sleep a bit better by then. We also have a 2 year old girl who is finding it hard.
I am waiting to see Dr Campbell at SCH and hope he has some sort of miracle for us - I am hoping he may start lansoprazole as it appears to work for lots of babies.
Glad you got through it and hope that in 1 year or so I will be able to post something cheerful and give others hope. At the moment that seems a long time away!
Susan
xx

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