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Hi We've just come across this forum and just so pleased to be able to speak to others in the same situation,
Our Son Zak has a condition called pelizeaus merzbachers, although they were questioning that, zak has been doing well and then has been struck with these problems, he was eating slow for such a long time and then I saw him struggling to swallow and ask what's up, he said I have a swallowing problem, I noticed he was then getting pain directly after eating and he was leaning forward trying to bring wind up and not finding it easy, he gets bubbles of air keep coming up and needs to keep drinking water when these episodes happen, I got fed up waiting for an appointment at the hospital and took zak up A&E, I got upset and cried, they could see my worry and kept him in on a drip as he'd not been eating,the next day they did the camera down the throat and came back fine, the doctor said there's no strictures or blockages and that it was most likely due to Zak's condition, I was given domperidone for Zak to take before his meals and was told he should be able to eat and drink again, but we are still struggling and as I say these air bubbles keep coming up and he finds it so annoying, sometimes he just doesn't fancy food and other times he will eat and then is doubled over, has chest pain all the time and just tries to release a burp bless him, we rang the doctors again and she didn't know really what to do so said she would refer us again to see a gastroenterologist , but if it's urgent will take 8 to 12 weeks just to see someone, you can't wait that length of time, so we are going to pay private out of desperation, we really need a barium swallow and mamontry test done, to see exactly what's going on, I just feel so desperate and they say there's nothing we can do, it gives us hope there's a operation that could hopefully give relief !
I would just like to ask how your son is doing now? Lisa
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