Wednesday, 28 May 2014

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!

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