Need some advise for my son

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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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  • Posted

    My 17 year old son Zach was diagnosed with Achalasia after 8 months of doctors not knowing what was going on.  It is such a rare condition that they overlooked it, especially in a teenager.  The manometry test was the diagnosing test that we needed and I wish it would have been done much sooner than it was.  However, he had the heller myotomy with fundiplucaiton surgery and was back to school within in week after surgery.  He was able to keep water down within hours after surgery!  No more chest pains, no more regurgitation of food and water.  The barium swallow was the first test they did.  If Achalsasia is a consideration in your son's case, tell the doctor they need to do a manometry test.  The test is not pleasant, but it is quick, on outpatient basis and was the answer we needed to proceed with a solution!  Best of luck to you!

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    • Posted

      Thanks for your reply and that's just great to hear your boy is doing just great,  I hope I can get the same outcome,  he's just exhausted today with these continues air bubbles, someone said to have a fizzy drink to get rid of the built up gas?? Lisa

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  • Posted

    I certainly sympathise with your son's problem.   I think it is the best thing to have the tests you mention to clarify exactly where in the oesophagus the problems are occurring.   Normally it is around the lower oesophageal sphincter but this may not be so.

    ?I am wary of thinking of this as achalasia because it might be different in your son's case.  Achalasia itself is normally caused by an issue with the muscles that drive the peristalsis, the chain reaction of muscles that propel food downwards into the stomach.   It is not the muscles themselves so much as the nerve endings that drive the muscles.   The sets of smooth muscles need to have one nerve ending switching each one on, and the nerves in the muscles either side to be switched off, all in the right sequence.   It is an automatic unconscious muscle movement for most people.  

    ?I think it might be connected with his condition, so the issue then would be whether trying to improve his swallowing by surgery would be prudent or not.   For most people the procedures are associated with cutting the muscles in and above the lower oesophageal sphincter so that gravity can help the swallowing process better.   Sometimes the surgery might have an effect on the nerve system, and there is a proportion of people who suffer from painful spasms after surgery (but most of these spasms are not so bad as they were beforehand).   So any surgeon would want to make sure that an operation would not make his overall condition worse. 

    ?This can have an effect on his nutrition intake and you do not want him to get malnourished.

    ?There are some medications that can help, but you really do need to find a specialist.

     

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    • Posted

      Thanks so much for your message,  we've been finding this so hard and my son is having bad episodes of this air bubble that continuesly keeps coming up and he can't free it, it's just exhausting for him and his  patience is wearing out bless him, just so much want to get him comfortable again! Lisa

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