Honestly not sure where we are at now :-s

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MY son of 11 (a former preemie) has suffered with reflux since he was still on the special care unit. We were told it was infact reflux which he'd grow out of and given infant gaviscon. He didnt grow out of it as a baby so he was given ranitidine and domperidone at around 6 months old. This never really did a great deal so he was put on omeprazole as a toddler. JUmp forward several years, and he still suffers. He's had 2 endoscopies, a barium ,ph study (as a baby) , also had coeliac test last summer. He currently takes 40mg omeprazole daily and has now had to have GAviscon Advance added in a month ago. He's due to see his paed locally in 10 days or so, but I dont know what else they can/ will offer him. I'm not overly happy about his long term use of omeprazole, but dont know of an effective alternative. He also has asthma, rhinitis which he has cetirizine daily for. He seems to have more of a cough recently and although doesnt have as much pain since the dose increase, I do wonder whether the cough might be linked. Poor child also has migraine for which he has pizotifen each night and cyclic vomiting syndrome which is linked to the migraine.(Dont want to jinx anything but that seems better at the moment). So, he's not a straightforward case at all. He was recently discharged from his gastro dr last month because the coeliac endoscopy showed no damage - thank goodness we have a nice general paed who's looked after him since birth. Any thoughts/ ideas?

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  • Posted

    I feel so bad for you and your son, that has to be so difficult watching your boy go through this and feeling helpless.  All I can tell you is when I upped my dose of Prilosec it made the reflux worse.  I weened myself off,  now mind you I still have it but it is a lot better since I quit the medicine.  It took a few weeks  after weening myself off to feel better, in the begining you have more reflux but it goes away.  I think your body needs time to figure out how much acid to produce.
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  • Posted

    Hi Amanda:  I'm sorry to hear that your son has had such a difficult time with these issues.  Sometimes, it is good to have a second opinion.  This treatment does not seem to be working.  I took 20mg of Nexium for about 2 years.  It definitely has side effects.  They did a study using healthy adults.  They put them on acid blockers for a few months, then abruptly stopped.  Most of the participants then reported acid reflux symptoms.  The medication can cause symptoms.  The stomach puts out a chemical when it needs acid to digest food.  The proton pumps receive the chemical message and release acid.  Acid blockers block the chemical from reaching the proton pumps.  Thus no acid.  But, this chemical builds up in the stomach tissue, and if the acid blocker is not taken then the stomach gets all that chemical message and dumps acid.  You can only deal with one of these many problems at a time.  Perhaps a GI specialist  can help.  If your sons esophageal sphincter is damaged, then it could be surgically repaired.  That would be a huge leap forward.  Our stomach makes acid for a very good reason.  It protects against bad bactera and breaks down food so it can be assimilated.  I know I had many symptoms because I had bad bacteria in my small intestine.  I finally took Pepto Bismol, 5 doses, 1 each hour.  That kills off the gut bacteria. Then I started eating yogurt, raw vegtables and peeled apples.  Every 2 or 3 hours.  This helps to rebuild the good bacteria.  Once the bloating stopped I made good progress.  You did not mention the symptoms of acid reflux when he was a baby.  Perhaps that was a misdiagnosis.  I think if you can make progress on this issue, the other issue may resolve afterward.  Regards, John

    40mg omeprazole

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  • Posted

    Thank-you Debra and John, two great replies with plenty of helpful info. It was unfortunately the GI dr that discharged him BUT his paed said that when he sees him next he will refer him back if he's not satisfied that he's improved.
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  • Posted

    Hi Amanda, wow what a rough ordeal for your son. I can't comment as the history has been on going over your sons life. And can only speak of my own personal experience which would be as an adult not a child. I just wanted to give my support to you as having had two ill children can understand the stress and anxiety you must have had to go through. I hope that you can get the answers your needing.
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