We had another hospital appointment today (the latest in an ongoing string of medical appointments). It was our first with paediatric Ears Nose Throat (ENT) and thankfully after months of waiting it actually was timed perfectly so that she could still have her day nap.
It’s hard waiting in the public health system (while also being grateful that there is a free public health system and the knowledge that there is always a child sicker or more critically urgent than yours). At the same time, I was genuinely grateful today for the way that the timing worked out. Grateful that it had come after her diagnosis of being atopic & (atypically) allergic. Grateful that I now know about the atopic triad and allergic rhinitis and that her many blocked noses and sore ears are quite possible part-and-parcel with the rest of her chronic health issues. Grateful that I now know that when she’s extremely pale and has dark bruises under her eyes, these allergy shiners are actually a warning sign that that her body is battling (with her allergies, inflammation, and atopic illnesses) not that she isn’t sleeping enough. Grateful that we saw the ENT specialist today while she is pale enough that I can heartbreakingly see the veins in her face when she lies on my lap and there are dark smudges under her eyes (while I keep waiting for the paediatrician and dietitian to confer and advise a way forward). Grateful that I have had nudges in the right direction to research and have some idea of what to discuss with today’s specialist.
She was anxious and clinging to me like a koala bear; I’m pretty sure she remembers her panic from the failed barium x-ray despite my assurances that we were going to a different part of the hospital. Thankfully this first visit was short and relatively introductory. The doctor wore special magnifying glasses to look up her nose and at her tongue and throat (she played yawning hippopotamus very well). He looked in one ear with a standard otoscope (the one that looks like a flashlight) and she refused to co-operate for the other one (which he respected).
He needs to confer with the paediatrician so is aiming for minimal intervention at the moment. Apparently she does have a lot of congestion up her nose and allergies/sensitivities (whether to food, plant, or environmental) are likely to be playing a part in the inflammation affecting her sinuses and the soft tissue beneath her eyes. There’ll be another skin prick test, for airborne this time, and I hope it yells us something useful. I’m scared it will come back negative again and in her case that doesn’t necessarily mean negative it could just mean that she has non-food allergies but is also reacting to them systemically and with a non-IgE mediated delayed response.
She’s also going on to nightly doses of an antihistamine which may help to settle her system overall and reduce her current swelling and inflammation. It’s a good thing, I think, but at the same time I’m sad because she’s still trialing being off daily doses of reflux medication and now we’re onto another med. I also know that while some parents of toddlers might secretly be grateful (in some tiny, dark, secret, exhausted part of themselves) to have to give their toddler daily medication that also has a sleepy sedative side-effect; I’m more worried about the rebound effect. I’m looking to when she hopefully comes off of it in a month’s time and potentially goes through weeks of being up late with her cranky drunken-monkey routine because she’s forgotten the knack of falling asleep naturally. Sleep has always been a troublesome thing and precious commodity because of multiple health issues since she’s been born.
Still, right now, I am glad that she is sleeping and that I can drink chamomile tea while gathering my thoughts and processing today. Right now I am grateful that her GP can fit us in tomorrow so that her next specialist test can be re-issued on the correct form (because the hospital apparently used one from before the forms and processes changed in October 2016 – so the scheduler informs me); so grateful that it can be amended by the GP and not some administrative nightmare trip back to the children’s hospital.