extreme reflux

.At 12:02pm on September 5, 2009, JULIE RIVERS said…My baby had reflux and projectile vomiting up to 6 weeks old, then it went silent where the problems began! He stopped being sick and far from not wanting feeds he would comfort feed at the breast like crazy to 'wash away the acid'. Then he had the following episodes- he started to look vacant due to stopping breathing turn blue, recover then flop and fall asleep. We had a few 999 calls and hospital admissions. Due to how he presented the doctors became obsessed with him being epileptic despite us telling them all the episodes happened during or just after a feed, or related to swallowing. However they carried on 'eliminating epilepsy' with a working diagnosis of reflux, treating him with gaviscon, ranitadine and domperidone. He had a CT scan, which showed a slight benign mark, which we now have to have an MRI scan whilst he is put under to just check further, but docotors seem to want to just eliminate this as a problem. He was settled for 2 and a half months, however his meds were not increased with his weight and therefore he had episodes again. He would have 1 blue episode and seemed to then have them for the rest of the day. Up to press he has stopped breathing 30 times. Very long storey and 5 fustrating admissions to hospital. Son is now 7 and a half months and I have just come out of hospital after a ten day stay. This time I had refused to leave until a barrium swallow was organised. The swallow xray caught the reflux in action and we were happy that we could now look into the reflux further rather than try convince people it is not fits. We have got a lovely consultant though and he has been very helpful and he stuck his neck out for us to the others doctors as he agreed it was silent reflux and now has been proven right. This admission he was changed from ranitadine to omeprazole and we are monitoring now if he will settle on this. He was due an endoscopy and the PH test on Monday at Leeds hospiatl, but our consultant wants to delay this as he would rather see if he settles on new meds before any invasive practices, so thats the plan up to press. Very stressful looking after a baby with apnea but at least now we have our diagnosis and the entire childrens services know our baby and his problems so dont feel on our own so much. Although the health visitors can go sing as they are useless and told me his problems were all manner of things such as 'it is just his way'. I am surprised that they are so uneducated on reflux and the difficulty of looking after a baby with reflux, they are just obsessed with weight increase and because my baby looked and fed well as this is how his reflux is, the health visitors had nothing to offer me other than talking bollocks!!! (yes I am angry with them and there stupid comments!! Anyone who wants to chat, give advice, or ask any questions about out situation are welcome to contact us...
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