Have you heard of other children who develop ulcers after having reflux?
I have a 27 month old who was diagnosed as reflux at 9 weeks. Over the past 2 years she has been on Zantec (increasing doses as she got older) Every time I started to attempt to wean her of the zantec she would again have disturbed sleep and wake screaming in the night. I have seen 3 peads, the last one (who I saw in January) told me that it was all behaviourally and I did not wean her slowly enough.
My GP and I did not agree with this advice so in May this year went to a gastro pead. He placed my daughter on Losec at 21 months. She was on Losec till 2 years and weaned. She was fine for 3-4 weeks and then started again waking at night in screaming fits.
The final upshot was that she had an endoscope in early October and discovered 7 stomach ulcers. Which means she is back on the losec and also has Mylanta quite frequently. The biopsies of the ulcers came back all normal cells which means they are not caused by food allergies or a virus.
Have you heard of other children who develop ulcers after having reflux? At the moment I deal with whatever sleep I can. But wondering what the long term future holds. I do not se the gastro again until February.
It sounds like you have been on a really tough, isolated road. Unfortunately it isn’t uncommon for reflux children to have ulcers; even babies can have them as a result of reflux, along with other issues like scarring and strictures. Most people don’t seem to think that reflux is anything more than a baby who spits up occasionally, but as you know, it can be so much more than that.
I’m so glad that you were able to listen to your instincts as well, when your specialist told you her issues were behavioral. It`s not always easy to do that, especially when others around you would have been telling you it was your imagination too (or that she was being naughty!!) I’m also glad you have a GP you can feel comfortable with as that is really important (after all, we need as much support as we can get!!). To me it makes sense if you weaned medication and found it caused problems, so how can that be behavioural? It is so hard to know though!!!
From talking to lots of other families, I didn’t think that biopsies could definitively say that allergies/food sensitivities are not an issue. It may help to talk to your doctor about that, but from my understanding, the cells they look for when they look for food sensitivities, can be very patchy, and they need to take multiple deep biopsies if they have any chance at trying to catch them (and even then, if they don’t, it isn’t excluded as a possibility). I thought the only way of making extra sure you could exclude food is by doing that and seeing if it makes any difference. (under medical guidance of course)
If you are still struggling with lots of issues, then please don’t wait to talk to your paed gastro. There is no reason you would have to wait until February. You could perhaps try ringing to speak with them, or getting an appointment a bit closer. Perhaps in the short term her medications need to be looked at- either increased, or changed, or others added in.
It may still take some trial and error to find out what works best for her, and I know how hard that can be, especially at that age when you thought it would all be completely gone by then. If you need more support, we’d be happy to help as much as possible, as we have quite a large number of families with older children who still reflux (and you may like to consider joining our group). Our website has info on reflux in older children (at http://www.reflux.org.au/olderchildren.php
) which may help some too.
The options from this point, of course depending on a LOT of factors, may be continuing with medications, altering diet, trying alternative therapies, or surgery. It may be difficult to find the path that is best for your child and your family, but please hang in there- life does get better and you are doing a fantastic job! If you would like more information, please ask.
Hope that helps,