PARKER's Story

Rachel - Parker's Mom
January 2007

Parker was born by elective cesarean at 39 weeks though it is believed that he was only 37 weeks. He came into the world strong, healthy and beautiful, but the pediatrician thought he would need the humidicrib but he he got stronger and stronger and never needed to. We ended up staying in hospital for 10 days as he wasn't gaining and had some jaundice and were only allowed to go home with follow up visits to the pediatrician.

He started gaining, probably because all though I breastfed I was topping him up with formula and he started to thrive. He was going great till about 4 weeks when I assumed he had colic like my first son, he would go hours crying (that would gurgle in the back of his throat), arching, hiccups the list goes one, it got worse and worse and by 6 weeks I knew this wasn't colic. I rang a friend who's child had reflux and I described everything to her and she said it sounded like silent reflux. I never knew that there was such a thing as reflux without vomiting. I went to the doctor armed with this information and asked for zantac. He reluctantly gave it to me and it made a lot of difference, well at that time less screaming was a lot of difference!

He was still unsettled, we couldn't drive with him, he slept badly, so much so that I had to move out of my room onto the couch so at least one of us got some sleep. I still did not think anything of it, all I knew of reflux is that children had zantac and they grew out of it by age one.

I went to many doctors saying that it must be something more because he was still very upset a lot, but he was still gaining weight so no one was too concerned. At 7 months, was our first inking that something wasn't all that it meant to be, he developed sleep apnea, which was picked up by our movement monitor, without that we would never know, a sleep study (which I had to beg for and the process to see the specialist and the study meant we didn't get these results till he was almost one) showed that he did indeed suffer from apnea.

At about 8 months though, was when everything for us went downhill. Prior to that he was a great eater and I did not know that he was comfort feeding. He started to realize food meant pain, so he stopped, it was like overnight, good feeder to nothing. He would go a day or so without a wet nappy, and again I would take him to the doctor and they would say he is a good weight, one actually called me overprotective. He wasn't gaining weight anymore, but continuing to do all right with the 'curve' because he had weight stacked on by the overeating.

By 11 months we weaned him from the zantac (after unsuccessful times in the past), and that's when all day screaming ensued. I kept telling myself that it couldn't be reflux as all babies outgrow it by 12 months. I enabled my mums help and went to a doctor I had never seen before and cried that there was something wrong and no one will do a thing about it. He put me onto a pediatrician (over here pediatricians are not the norm for children) who also said that it wasn't reflux, though he was very diligent and tested him from head to toe,

By this time he was 13 months and hadn't gained in 5 months, he had dropped from over the 75 percentile to just under the 10 percentile, he was then labeled failure to thrive. I was afraid he was going to starve himself as he ate nothing in a day. I had stopped breastfeeding at 9 months in the hope that a bottle will be substantial calories but he has refused every bottle except the one when he first wakes up ever since.

We were given prevacid which we had to stop soon after as he screamed more and we ended up in the ER. The pediatrician authorized blood tests, urine tests, treatment for his fifth back to back ear infection, x rays and an abdominal ultrasound STILL they did not think that reflux could be producing his symptoms. The ultrasound picked up some swelling in his abdomen, and some inflamed lymph nodes and an enlarged ileum, this indicated inflammatory bowel disease, so we were granted a referral to a pediatric GI (again not something many kids get over here)

At this time I joined IRD and knew then that kids don't always grow out of it and it is possible he was suffering a bad case of GERD. At the GI we were ultra sounded again, more x rays, an upper GI, more blood tests an endoscopy and a pH probe, which came back with heaps of reflux episodes and finally after 14 months we had a diagnosis, even the GI was surprised at how much reflux he had. We were put back on zantac as I was afraid to go on prevacid again.

When we went back at 16 months, he still wasn't gaining well and we trialed losec. WE LOVE LOSEC, this is when his life started to turn around, his feeding improved dramatically and he started putting on weight again. In the 10 months that followed we stayed on the losec increasing it as needed. All the things that were a problem just started to disappear. We tried a few decreases of medication every couple of months and the reflux would return with great gusto, so we would go back on the losec even increasing the dose and the symptoms would subside again.

When Parker was 26 months, only 2 months after the last trial wean, we weaned him again as per the GI's instructions, this one was to be a full one, so that we could get re-tested with the pH probe. I was extremely apprehensive about this, as he had not been totally unmedicated since the last testing a year ago.

Well the great news is that he did fantastic with the wean, it was so different to all the other attempts and so far he is doing great. The probe came back as minimal reflux a huge improvement to last time and we have decided at this stage to not medicate him. He is still doing things that make me wonder if the reflux is bothering him still and I suppose only time will tell if we have really beaten this thing.

As you can probably tell I feel that the doctors played a large part in Parker reflux being so out of control and causing so many problems, they did not listen to what I had to say and trust that I knew that this was not right, if we were given the proper medication and treatment early on I don't think we would have had all the problems that we did. Our reflux journey contained a lot of ups and downs.

In Parker, reflux has caused FTT, food aversions, excessive myclonic jerks due in some part to medication, ear infections, which lead to deafness for 5 months, and delayed speech, pneumonia, sleep apnea, aggression, an older brother who is now trying to deal with the emotional aspect of having less time and attention spent on him. Daniel and I are also unsure if we will be having any more children as we don't know if we could go through it all again.

Describing how a thing like 'a little reflux' could change your life so much is quite hard, a lot of people do not see how much it can impact your child and your families lives and you get tired of people not understanding this. I feel that we are very lucky to be having so much success lately and just hope it keeps going that way.