Thursday, 17 October 2013

Reuben’s Tummy

Reuben has been vomiting since his very first feed. I’ve mentioned it in many blog posts, from when he was one month old to when he was eleven months old and I finally managed to get someone to listen to me that it wasn’t ‘just reflux’ and could we please find out what was going on with my boy!

It’s been a long road, and our boy has had to go through so much, but on Monday we finally had our follow-up appointment with our Gastroenterologist and it looks like we may finally be getting somewhere.

At the beginning, Reuben would vomit after every feed. Like, big vomits. I would talk to the health nurse about it, and she would give me the line about how a vomit the size of an A4 piece of paper is only about 5mls. All fine and good except that Reuben’s were the size of a piece of butcher’s paper! His vomiting was so bad that I gave up on changing his clothes when he did it and would just mop up after him with my ever-present ‘pukey-cloth’. My sister would come over after work to help with the kids and send me for a shower because, she would tell me, I reeked of vomit. I could never figure out which was worse: The fact that I reeked of vomit; or the fact that it had become such a normal part of life to me that I couldn’t even smell it anymore!

At four months old he lost a little bit of weight, and we decided that as well as slowly introducing some solids, we would exchange a few breastfeeds for bottle feeds (I was not coping with 12+ feeds a day, half of which would end up covering both Reuben and I at the end of each feed… it was exhausting and so discouraging). We used some anti-reflux medication in his bottles, and he had some chiropractic appointments and we thought thing might be getting better. Except they weren’t. Before too long, it became apparent that the vomiting hadn’t gone away after all.

The nurse would tell me it was ‘just reflux’ and it would go away when he could sit up and be upright for more of his day. It didn’t. It would go away when he fully started solids. It didn’t. I thought milk vomits were bad…. they have nothing on wheetbix vomit, or spaghetti vomit, or blueberry vomit. No matter what he ate, he vomited. And it became more random. He might keep his food down for a few hours, then suddenly start vomiting again. He might have a couple of days of no vomit and we would start to heave sighs of relief… and then it would begin all over again. They said that it would go away once he was upright and walking. It didn’t. How fun to be a mobile vomiter! Reuben would pause in the middle of running to vomit, then just keep going. I would find surprises all over the house!

The only ‘good’ thing about it all was that it didn’t seem to bother him. He was never a fussy baby, he didn’t scream with pain, he slept really well. He would literally open his mouth and vomit, then just keep on doing what he was doing. I think that is why it took such a long time to get someone to listen to me. I finally found a doctor who after going through his symptoms with me looked at me and said, “Are you, as his mother, worried that this is something bigger than ‘just reflux’”. YES!!! I was worried for a number of reasons. For one, I was big-time over it (a full time vomiting toddler is the pits), and it was flaring up my anxiety and making me resentful. For two, I had been reading about possible long-term effects of oesophageal scarring, and it was concerning me what this constant flow of acid up and down his gullet since day dot had done to his insides.. as well as his teeth! My doctor agreed, and the testing began. Reuben endured x-rays, ultrasounds, a barium study, blood tests, a few days under observation in hospital, a few weeks of a dairy-free diet and elemental formula, another type of anti-reflux medication and finally… finally we were referred to a paediatric gastroenterologist in Brisbane.

We had that first appointment about four months ago, and the doctor agreed that it had all gone on for too long and we needed to find out why. Reuben’s barium study had showed some kind of a blockage between the stomach and the bowel, and it was unclear whether it was a physiological blockage, or due to swelling or inflammation or a motility issue. The next step was a repeat barium study done at the children’s hospital, where they are more experienced with infant studies than our local radiology place. He also had extensive blood, stool and urine tests for everything. A major thing they wanted to rule out was coeliac disease. After his first lot of blood tests were done, I got a phone call to let me know that Reuben was anaemic, and we needed to get him onto an iron supplement today. We went down to Brisbane a second time for the barium study and a second round of blood tests. This time the barium went through more slowly than it should have, but there was no actual blockage like the last test had shown. The radiologist couldn’t give us more information than that though. Then it was back to waiting. I must say that spending time in the Children’s Hospital… especially the day we spent in the diagnostic imaging department, has really made it hit home to me how lucky we are that this is all we are dealing with. I guess it’s put it well into perspective.

In the meantime, Reuben’s vomiting has improved quite a lot. Instead of vomiting 20-30 times a day (he would easily do that when this thing was at its worst) he might only vomit one or two times a day. He does however regurgitate and swallow very often. His breath almost always smells of very acidic vomit. He coughs a lot, especially when he sleeps (but has no cold), and constantly has hands down his throat as if he is trying to get something out. His vomiting episodes seem to build up… he might have a week or two of no vomit at all, then suddenly be back at 5 or more in a day.

This Monday we finally had our follow-up appointment. The good new was that the coeliac screen had come back negative… praise God!! The gastroenterologist believes that Reuben does have a type of reflux that has a really long and unpronounceable name which the doctor really seemed to enjoy saying, but is best described as Oesophageal Asthma. Basically it is an allergy-induced type of asthma that affects the oesophagus instead of the airways. In the past it would have just been written off as general reflux, and we would have been left scratching our heads as to why his has continued well beyond infanthood. The doctor believes that this diagnosis fits with many of his symptoms, including his iron deficiency; the way that the episodes build up and aren’t always an immediate response to having food; the first barium study (which was likely done in the midst of a reaction so motility would have been affected) as compared to the second study in which motility was slow but not stopped.

So our plan of attack from here is to try an anti-reflux medication as a last-ditch attempt to rule out ‘normal’ reflux. The medication is the same one we tried at around 11 months when this part of the saga began, and which made no difference at all, so I’m trying to not get my hopes up. The good thing about this particular med is that it also acts as an acid suppressant; so even if it doesn’t actually stop the vomiting, it will help to remove the amount of acidity in it, which will hopefully lessen the effects of burning/scarring. As well as being given this medication, Reuben has been put on the waiting list for an endoscopy in December. If the medication works between now and then, we can cancel the procedure. If not he will have the endoscopy, during which they will take a tissue biopsy which can be use to confirm the diagnosis, and check what, if any, damage there is from scarring etc. If the diagnosis is confirmed then we need to figure out what is causing the allergic reactions! It can be difficult because it can be quite a delayed reaction as the vomiting only starts when the inflammation builds up to a certain point. This may also explain why he has vomited less the bigger he has grown – everything in there has grown with him and it takes more to get to a point where the vomiting actually occurs. He also will have more blood tests this week to see where his iron levels are at, and if the supplements are helping him. Regardless of what the results of any of this are, chances are he will most likely be on the iron supplements and the anti-reflux medication quite long term.

Reuben is eighteen months old on Saturday, and has vomited almost every day since the day he was born, and I can’t tell you how much of a relief it is to feel like we are finally finding a reason for it, that will hopefully lead to a way that we can help him get past it. It’s been a rough ride for all of us, and I’m so grateful to our wonderful medical system, which in spite of being such a slow process, has been brilliant. It’s been quite a journey, and we’re not done yet… but praise be to God, we’re finally getting somewhere.


1 comment:

  1. Good to hear Zoey! Very rarely are mums wrong when they think there is something more going on with their bubs! Hope the triggers will be picked up soon! God bless xx


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