BiographyJack was born in March 02 and from the first week we had sick, we were told this was normal and all babies were sick. When he was 5 weeks old he was sick and seemed to choke, his lips when blue and we rushed to the hospital. This is when someone mentioned reflux; they sent us home with infant gaviscon and thickener which these days aren’t supposed to be given together. (They both thicken so shouldn’t be used together).
These made little difference to our life, Jack was miserable and we were miserable and our paediatrician at the time kept telling me that he was fine as he was gaining weight and that reflux was a social problem that affected me more than him. We spent the day holding him upright and hoping he would settle. The doctors would tell my health visitor that I was anxious, I was young.
As luck would have it at 7 months out doctor left on maternity leave and we got our amazing doctor that we still have today. I explained to her that we had been made feel that we couldn’t cope with our own child because people kept saying its normal. She checked him over and found a heart murmur that turned out to be innocent but the other doctor hadn’t said anything.
She referred Jack to Leeds hospital where they would do some tests to see how bad his reflux was and she also gave us ranitidine to try in the meantime.Jack went into Leeds and had a ph. study and an endoscopy which shows that he had quite significant reflux that wasn’t being controlled; they recommended that we start omeprazole and also a low dose of erythromycin.
We slowly over time increased this dose to what was considered maximum and when he still hadn’t outgrown reflux at 2 the doctor suggested we would repeat the reflux tests to see if there had been any improvements, also because sadly over time the constant vomiting had taken its toll on Jacks eating. He would refuse food because he knew it would make him vomit.
After the test it showed the start of irritation to his oesophagus (esophagitis) and also showed that his reflux hadn’t got any better in fact showed worse. With the surgeons we decided that the best way forward was to have Nissans fundoplication done and a gastrostomy feeding tube placed.
Jack had the surgery in September 2004 and for us the surgery was life changing. Jack hasn’t refluxed since, sadly because of his oral aversions from being sick he still doesn’t eat very well now and is still fed via a gastrostomy tube. We however live in hope that he will eventually be able to get off the feeding tube.
It is rare that children with reflux don’t grow out of it by Jack’s age and just recently Jack and my daughter Olivia have been diagnosed with a genetic condition called Ehlers Danlos syndrome which can cause the sphincter muscle as the top of the stomach to stay floppy which can attribute to reflux. Jack also has ADHD and anxiety; although these aren’t related to reflux they could be part of the reason for him not eating. We did try for a year to tube wean and actually stopped all feeds but Jack stopped growing completely and soon had faltering growth again so we had to put him back on full feeds.
Jack has recently started blacking out which is both frightening for him and us as his anxiety is running high as he doesnt want to go into the hospital because he is scared - a quilt that could go from home to hospital might help to make it more personal. He has been having problems with his legs giving way and he recently fell down the stairs cutting his head and his arm. Just one more thing to worry about.
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