Saturday, July 23, 2016

If I Had Known Before

Birdy has developed a new and terrifying allergic response. Previously her episodes have involved anything from mild reddening of the skin around her mouth, right up to full-on wheezing with hives, running nose and eyes, coughing - anaphylaxis in fact.

Prior to her diagnosis, she had several anaphylactic reactions - thankfully none going as far as anaphylactic shock - but I didn't realise what they were until later as her symptoms varied slightly each time and she seemed to recover relatively quickly with the blue inhaler I thankfully remembered to administer. I had never seen it before and couldn't correctly interpret what was happening. The worst was when she touched some peanut butter. She probably has a reddening of the face reaction about twice a week, but we haven't had a serious reaction since we had some allergy testing earlier in the year.

However, nearly two weeks ago and only a few days after being discharged from hospital after the 'viral wheeze' episode, she had quite a different reaction. Swelling. I don't know why she's never experienced significant swelling before but on this day she made up for it in spectacular style. If I describe what her face looked like it will sound as though I am indulging in extravagant caricature. Suffice it to say, it was extreme, sudden and horrifying to witness. And it was accompanied by lots and lots of hives. The only explanation I can come up with is that some children in the vicinity had chocolate spread. She didn't eat the chocolate spread or, as far as I know, touch it. But there we are.

Yesterday it happened again, at home, over lunch. I was quick with the anti-histamine but still had to dial 999. It's very difficult to tell whether her tongue and throat are swelling in the heat of the moment when she's screaming crying anyway, and if I wait until I am sure, it might be too late. So off to the hospital we went. Thankfully, as with the first time, it was superficial and mostly confined to her face, leaving her airways unaffected. The culprit? Houmous containing sesame seed paste. It's not on her list of confirmed allergies and she's had it a couple of times before with no ill effects but apparently that can happen.

So, now we have an epipen to add to the Salbutamol and Desloratadine toolkit (note to self: carry a large bag), and a referral back to the Immunology Department for further investigations. And I have spent a couple of days re-reading the packets in my cupboards looking for sesame-related ingredients.

I can't help feeling as though my parenting resume makes me the last person who ought to be raising a child with severe food allergies. I am a terrible cook. My idea of meal planning is rifling through cupboards at 4.45pm wondering what we can have for tea. I am, in short, distinctly laissez faire about food in general. Added to this, I have no food allergies myself and I'm not aware of anybody else in the family that does have them. My friend has a nephew who is severely allergic to many foods. I have listened to her talk about him and his family with my mouth open, barely able to imagine how they live their lives when even a glancing contact with so many foods would land him in hospital. I thought I could never cope with something like that. And now, here we are.

Before you adopt, they give you a terrifying sheaf of papers detailing a list of potential 'issues' that a child might come with, and ask you to indicate for each issue whether you would be fine with it, would possibly consider it, or would not consider it. Would you consider a child with a range of learning or physical disabilities, chronic diseases, horrifying past experiences? You have to decide about that when your own personal experience of these things may be absolutely zero. I am eternally grateful that adopting children I have fostered has meant that I have escaped this form entirely.

I am even more grateful about that now as, had I been asked whether I would be comfortable with adopting a child with a range of severe food allergies, I might have been unsure for all the reasons above. I'm not even sure if that's one of the questions, but either way, I'm glad I was never asked. Many of the things on the list would have left me unfazed, but thinking very logically about severe allergies, I might have been concerned that I would not cope very well and that frequent hospital visits would have a deleterious effect on the other children in the house (and they do!).

But I am coping. I am coping because there is no other choice. I have to become good at things that I was not previously good at. I have to change my habits and increase my vigilance in order to protect Birdy because she's not a list of symptoms on a page, she's a lively, characterful, beautiful, funny, smart, loving, human being and I love her outrageously. I can hardly imagine a day without her. I can hardly remember a time before her.

Adopting a child with medical issues also means that family medical history will always be looming over us. In all of OB's life, I have never been asked about his family medical history, which is a good thing as I know virtually nothing of it. I get asked about Birdy's all the time. She is little now and doesn't understand so I can give all the information I have (we have some relevant information in her case) without beating around the bush. I hope those questions will lessen as she gets older and the diagnosis phase of all this is completed, but if not, we may be having a lot of conversations with medical professionals where 'adopted' and 'birth mum' will be unavoidable phrases. It's just another  manifestation of the 'white noise' that accompanies adoption.


5 comments:

  1. This is terrifying, the 'white noise' in this case has a real and physical manifestation that could be life threatening!

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    1. Exactly. Thankfully as Birdy's foster carer I spent a lot of time with her birth mum - enough that I had a heads up that some of this may be coming. I don't know how much of this information would have been known if she had gone for a quick adoption - certainly she would have had no diagnoses. Scary indeed.

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  2. Thank you for a really helpful, well-written post that gives an insight into what it's like to cope with allergies. It's not something I've had to consider much before other than what I'm allowed to put in packed lunches. It sounds a scary situation to manage on a daily basis.

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    1. Yes - I am definitely 'that' parent now! Not only the parent making a fuss about photos at the nativity, but also the one making a fuss about other children's peanut butter sandwiches!

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