Westmead – done. Yawn. Sigh. Relief. But maybe also a few after thought questions ?!
Diagnosis – NON IGE ALLERGIES. PROCTOCOLLITIS
See here for more info: http://www.rch.org.au/uploadedFiles/Main/Content/allergy/Non%20IgE%20Food%20Allergy.pdf
I was expecting this as this is what we were initially told at ED when he was 6 weeks old however I am glad to know they are non IGE therefore there does not appear to be a risk of anaphylaxis – so that is very relieving…
However, with this, comes the fear that if people know this, they will become flippant about his allergies or giving him the wrong things but they absolutely cannot be.
Proctocollitis means that his body treats the food as an enemy. Minute traces kick off his immune system to fighting it like an invader, which includes inflammation and his stomach shedding it’s lining which sees him passing blood and mucous.
Inflammation puts pressure on all internal organs. His ear issues requiring grommets were caused by this and it can cause a lot of other issues too.
So we are going to be treating it the exact same way as we have been for now, nothing changes.
As the SPT has ruled out the risk of anaphylaxis, in time, we have been instructed to do controlled trials at certain times and in a specific way:
First and foremost would be “May contain traces of soy -> soy lecithin -> soy oil – soy is his least reactive allergen and the above are the items where there is the smallest amount of the protein or it is said to be fairly reconstituted and less likely to react – although he has in the past.
Then we move down the line and onto the others. Dairy is his most reactive so he doesn’t want us to do for some time.
He said however that 18 months onwards is the most likely time to grow out of, even closer to 2 is even better.
His reactions re vaccinations – the specialist was of the impression that his immune system is over reactive, therefore it is overreacting fighting off the vaccine by giving the diarrhea, so he has given the green light for the next round – a bit nervous as I hope we don’t have a repeat of what happened last time but will see how he goes. I have been working a lot more on his gut health recently so fingers crossed that will help.
Ok so I think I’ve covered everything, I feel like maybe I’m missing something but I’ll write again when I think of it, I’m pretty toast, it’s been a massive day – he didn’t sleep well last night cause of whatever set him off the last few days and then I crammed a weeks worth of uni work into 4 hours this morning, drove to Westmead, had problems finding the right spot to go to and then spent 3.5 hours there, rushed home for dinner and kids bed so I am finally sitting down now catching up on some Married at Fist Sight (yes I’m lame lol – I don’t mind this trash tv) and I’m looking forward to a good night’s sleep!
Goodnight everyone x