Reuben’s Tummy: An Update

Last time I blogged about this, Reuben had just had his second gastroenterologist appointment and were waiting for an endoscopy. If you read that post I just linked, you’ll get a great big overview of what’s going on… in case you’ve missed it!

So, in December, we had the endoscopy. It was weird, scary-ish. He was meant to be second in line for the procedure that day, but because the little girl who was scheduled before him had drunk too much juice (they had to drink 50ml of apple juice before the procedure) he got swapped and was lucky enough to be first on the table for the day. I got to go into the theatre with him until he was put under. I was a bundle of nerves… I’ve never been under a general anaesthetic, and the idea of it scares me… and here was my little baby about to have one! I kissed him goodbye once the ‘knock-out gas’ had done its thing. The procedure is relatively quick, and then it was just a matter of waiting for him to wake up. Post-anaesthetic Reuben was very grumpy, but also a little funny. Reuben’s Gastro was pretty happy with how things went, the good news was that there was no visible scarring on his oesophagus, which had been one of our concerns. As for the rest of it, we would have to wait for the biopsy results…

Fast forward to a few weeks ago, when we finally had our follow up appointment. Things move slowly in gastroenterology. There is such a small number of Gastro specialists in our state, they definitely get busy!

Long story short, it’s looking like Reuben has an Eosinophilic Gastrointestinal Disease (EGID), most likely Eosinophilic Oesophagitis (EoE). Crazy big words huh? So basically, it boils down to being an allergy disease.. much like eczema, only on the inside. An allergy occurs when the body mistakes a non-threatening food (the allergen) as something bad, and attacks it. For Reuben, this happens when the allergen passes through his oesophagus, and causes a build up of eosinophils (white blood cells). So his biopsy showed a reasonably high count of inflammatory cells in his oesophagus and duodenum (small bowel). Back when he was a lot smaller, his oesophagus was really tiny, and the inflammation would have been so bad that it would have essentially blocked the oesophagus (hence the weird barium study results), and caused copious amounts of vomiting. As he’s gotten older, and bigger, the oesophagus doesn’t necessarily get entirely blocked, and the vomiting decreases (in the second barium study, when he was over one, they saw that it was slowed, but not blocked… he was a lot bigger then than he was in his first one).

This is a really great little video that simply explains the condition.

So what now? First thing we have to do is find out what Reuben is allergic to. Reuben’s inflammatory cell count was not quite high enough to make a confirmed diagnosis of EoE, but his Gastro called him a ‘borderline case’ and said that it is bad enough that if we don’t work on fixing it, it will get worse. Inflammation of the oesophagus has pretty yucky long-term risks, so we really need to find out what is causing it.

Unfortunately for an allergy like this, a skin prick test or allergy blood test is not going to be accurate. Reuben’s Gastro in fact said that it would be a waste of time, because his reaction is delayed and compounding, and those tests really only show results for immediate reactions. So now the fun begins.

For six weeks, we have to eliminate the following foods from Reuben’s diet: dairy, soy, wheat, fish, eggs, corn and nuts. Phew! As you can imagine that really doesn’t leave a whole lot. And can I just say, soy and corn are in EVERYTHING. I thought those two would be the easiest for us to avoid, because at face-value I didn’t think we ate a whole lot of them.. but yeah, we do.. and you probably do too. Also, pretty much any gluten/wheat-free product is guaranteed to contain either corn, soy, or both, so that’s fun. Anyway, we go allergen-free for six weeks, and then we reintroduce the allergens one at a time, each one taking 1-2 weeks, and observe. We look at Reuben’s symptoms.. the vomiting (which has really slowed down in the last few months, thank goodness!), bowel movements (which were MANY and gross and all kinds of unpleasant), nappy rash (the condition can cause very acidic faeces) etc. He will also have another blood test to check how his iron levels are going (he is still on is iron supplement as he was still quite anaemic), and he is still on his acid suppressant medication. It hasn’t been mentioned yet, but from the reading I have been doing online and in a Facebook support group for parents of children with EGIDs/EoE, it is possible that he will have a follow-up endoscopy to make sure those inflammatory cells are leaving his system.

Can you believe it! I can’t. It is certainly overwhelming, but I am so grateful that I listened to my Mama-instinct and pushed to get this thing followed up. I praise God for out amazing health-care system that has allowed us the opportunity to access highly skilled specialists who could give us some answers. Mind you, joining the facebook support group I mentioned before has shown me how blessed we are that Reuben has such a comparatively mild case of this condition.

This diet is pretty full on. I have to make most things from scratch, and he is missing a lot of his favourite foods – particularly dairy. He as to drink this disgusting elemental formula called Neocate. It’s got pretty much everything he needs to survive in it, and will help him to stay healthy and gaining weight while he is off so many essential fats and proteins. He’s doing so well with drinking it (I dress it up with honey, chocolate or in a banana or berry smoothie). I’m so grateful that we still have access to the thermomix, and it is definitely making things easier. I have used it to make my own everything-free flours (commercial gluten-free flours are made with corn), milks (coconut, rice, oat), breads, and lots of other yummy treats. Without having had the thermomix all these months, I never would have had a lot of these ideas for alternative foods on my radar, and it’s made a huge difference. I’m being as creative as I can to find ways to give him alternatives to his favourite foods, and most days we are doing ok. Sometimes I just feel really sad for him though, when he knows that the ‘milk’ I’m giving him is not milk at all, or when he sits next to someone at Mainly Music who is eating a piece of his beloved cheese. I think the fact that he’s old enough to know what he wants and likes, but still too young to really understand why Mama is suddenly not feeding him those things!

But. We are getting there, and doing this diet and finding his allergen is going to be the beginning of the end of this long journey, and I can’t complain about that! If you are interested, you can follow the hashtag #reubenseliminationdiet on instagram to check out some of the allergen-free foods I’ve been making for Reuben, and I will update here as we go. Thanks to everyone who has followed along on this journey so far, I’ve had lots of support and it is so appreciated!

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.