Sorting out the nuts

We've known for almost a year that the littlest hobo is allergic to nuts, after a minor (coughing and rash) reaction to a satay dish, the third time she'd tried peanuts, followed by a rash where her daddy kissed her after jsut having eaten peanut butter herself the next morning. I took her to the doctors that day and the peanut allergy was confirmed a couple of months later by a skin prick test.

A few weeks before she had the test she was admitted to hospital with a spurious illness that left her dehydrated and weak. 

She'd always been a small baby, she'd never grown particularly well, had slept absolutely terribly since birth, had an abominable immune system, and she had become a fussy eater at a very young age in spite of our efforts to the contrary. When they discharged her from hospital they referred her to a paediatrician with concerns about her chest as well as her growth. It was thought that she'd had a chest infection, but as the weeks wore on and her chest didn't clear the doctors became more concerned. 

It was a stressful time, we struggled getting our heads around what was going on, as did the doctors, it appeared. She was so little to be going through all this and it felt like there was nothing we could do to protect her or make her better, we felt somewhat helpless, which is an awful feeling to experience as a parent. I started taking her to a chiropractor, and we saw an improvement, but they felt that there were other things going on with her health that they couldn't work against until we worked out what they were. She was put on a strong asthma steroid, and a medication to control her reflux, which made an immediate improvement, but it wasn't enough. Her growth was poor, and her eating deteriorated further, and we became more worried. She was put through a series of tests, which were inconclusive except for low iron levels; they couldn't work out what was causing them. She was given an intensive course of iron supplement, and we also decided to introduce a good fish oil, and they continued on with the tests, some of which caused us great concern due to the possible outcomes. She was also put on a wheat and dairy free diet, which was challenging and extremely limiting at times, but worth every second if it helped her health.

In the meantime, the combination of our concern over what was happening with the littlest hobo and other circumstances led to us making plans to return to the UK. While we were getting ready to leave Sydney, the littlest hobo continued to go through tests, and finally they managed to get a clear enough test result to clear her of the most concerning illnesses.

When we arrived in England we had to get her into the medical system, so it took a while, and in the meantime we managed to wean her off the reflux medication, which we were really pleased about: as she was taking a strong adult dose and we didn't feel comfortable with her taking it long term. When she saw the paediatrician he also changed her asthma medication and referred her to a dietician and for more extensive allergy testing. he was keen to do a test for coeliac disease too, but couldn't do it until she'd been eating wheat for at least 6 weeks.

Over time we could see her health, and her appetite, improving. She seemed less susceptible to every single little sniffle doing the rounds, she looked a better colour, and she appeared to have a couple of massive growth spurts too. After we saw the dietician we introduced a vitamin d and calcium supplement. We decided we were ready to try introducing wheat back into her diet. She coped with it really well and seemed to improve even more dramatically. 

This week was a big week - first she had skin prick testing, where 18 allergens were tested. We were absolutely delighted that only three caused a reaction - peanuts, nuts and dust. Wheat, dairy, soya, mustard and fruits, all of which we had suspected at times, were clear. Skin prick tests identify IgE allergies - those which cause the most severe and at times life threatening reactions. While she may still have some non-IgE allergies, we're really hoping that her problems were due to intolerances or allergies that she has or will soon grow out of. above all, we have the confidence to start reintroducing dairy too, knowing that we shouldn't expect a major reaction. We also saw the consultant this week - he was so pleased by the littlest hobo's  improvements that he has discharged her from his care; she only has to see the dietician and the allergy clinic now. 

This has been the most fantastic week in the littlest hobo's medical history! We've worried about her on and off for such a long time now, and it feels like a huge weight has been lifted. a few months ago we had a little girl with a complex set of medical issues, now she's just a regular little girl with a couple of allergies. This will give her so much more freedom in the long term, and it feels like it gives us more freedom and peace of mind in our upcoming travels too. They've given her an epipen for her peanut allergy, which is comforting to have; I'm sure that had none of the history happened, we might be fretting now about her having an allergy that requires an epipen, but given everything that's happened in the last few months we're hugely relieved that that's all it is - something that is both avoidable and controllable, and something that's being taken increasingly seriously by the world, so should be relatively easy to communicate. I'm sure the future won't be without hic-cups, but it's much brighter than it was a few months ago, and that's a worthy celebration. 

Travelling with allergies and intolerences

One of our biggest considerations when we decided to go travelling was whether we could do it with our daughter’s medical needs. The littlest hobo has had various health concerns and issues over the past year. As time goes on, it appears that the majority of them are caused by allergies and intolerances, which has been a huge relief, because they are manageable, but it does put various constraints on us.

She can rarely eat a restaurant/café meal so we have become accustomed to taking food everywhere with us. This means that we must always have access to a kitchen to prepare food. It’s not a problem, and in many ways staying in self catering accommodation is the better option with a toddler in tow anyway, and we’d become so used to bringing her food with us before we left Sydney, that we just do it automatically.

We have friends with allergic children who won’t go on holiday out of their own country - when they holiday in their homeland they choose their location based on proximity to a hospital. While I completely understand their fears, we just weren’t prepared to live by those parameters, constantly working around the what if’s.  So we decided that we can only visit countries where we can access ‘allergy safe‘ foods. This leaves us primarily with the developed world as our oyster - still enough to fill a year or two with travels, and leaving plenty of countries for us to enjoy in later years, when she’s hopefully grown out of some of her allergies, or when we’re old grey and wrinkly and she’s got better things tyo do than go globetrotting with her olds :)

To an extent, we’re learning as we go along. But that’s not really much different than what we would have been doing if we’d have stayed at home in Sydney - most allergy treatment, especially in the very young, is based on experimentation - remove this and see what happens, reintroduce that and see if there’s a reaction. We’ve done our homework with regard to infant nutrition and allergies/intollerences, talked to her team of specialists before setting out to make sure we weren’t doing something crazy and we carry the necessary antihistamines with us everywhere (as we would at home). I research each destination before we go to make sure we can get suitable food/drink. When we went to Korea I’d found out that although her usual rice milk wasn’t available, soy milk was, but since that trip, and the reaction she had from 3 days of constant soy milk, we know that rice milk must be available.

It’s probably changed the way we’ve done things a bit - in Europe, we’ve bought a car and we’ll be driving/getting ferries. We can buy as many cartons of rice milk in the countries where it’s available, and take it with us in the car - an option that definitely wouldn’t have been available to us with the weight restrictions of flights. On the plus side, I feel like we’re seeing a bit more of the country this way, and it definitely seems to be working out cheaper.

We’re staying in cottages/apartments/houses which mostly end up being a bit out of town, which in turn means that we may spend less time in the town/city than we would have done otherwise. Our experience is different to what it would have been if we’d been staying in the city in a hotel or hostel, but often we feel less like tourists this way, and more like locals.

The other constraint we have is that she still needs medical monitoring, so given that our families are there, so there’s always people to stay with, and we’re likely to spend more time there than anywhere else for now, this has become our official country of residence, and she’s registered with a paediatrician there. This means that she and I may be taking the odd flight back to make sure she’s keeping on track, but hey, that’s a small price pay to enable this lifestyle.