catch up time!

Under the neon sky my favourite boy… (Iceland 2018)

It’s been a year and ten days since I last wrote a blog post! Quite astounding… so much has happened in that time and all my energy was consumed by surviving the storms we found ourselves in, keeping Aars afloat and finding ways to feed him. It has been tough. My son broke down for the first time in his then 14.75 years expressing how awful and difficult it is to be stuck in his ‘crappy’ body. (I did turn it around and made him laugh by asking him if he was dissing the creation I had made with my own crappy body!) We also had serious conversations, hugs and tears… There was no energy or time to indulge in blog posts!

The fact that I’m back and typing means that we have weathered the storms and hopefully have come out of them stronger, more centred, more rounded and grounded with a clearer sense of all that is important to us.

it’s a long old journey… my teenager sitting on his case all cas’ ( going St Ives Apr 2018)

I think that we’re also a little more realistic about the life which lies ahead. Aars turned 15 in March and it was his first birthday on which I felt no hope that things were going to get better, there was no sense that we could conquer this or even fully get to grips with it or understand it fully. I felt more like I had to gird myself up for the next onslaught! I think that accepting this unpredictable monster (anaphylaxis) and it’s more monstrous cousins (EoE, Eg, pollen cross-sensitisation with foods causing anaphylaxis) has been a relief and a blessing. It’s hardest to fight the invisible and unpredictable like pollen and EoE. For me it’s strange to say – but the normal food allergies which cause anaphylaxis are the lesser worry these days – because we know he just has to avoid those foods and that’s simple and very achievable!

In March 2018 two days after his fourteenth birthday Aars had  the amazingly wonderful biopsy results from his operation in Feb, of ‘0’ ‘0’ ‘0’ eosinophils after a course of steroids for six months. Yet two months later he was really struggling. This time last year he was suffering severely from the symptoms of EoE, he was also loosing previously safe foods at an alarming rate. We lost not just potato skin (which happens every spring as it’s linked with cross-sensitisation with silver birch pollen) but potato flesh and any food with trace amounts of potato starch or potato flour. We lost corn (a.k.a maize)… the list was ever increasing.

I called his gastroenterologist consultants at the Royal Free Hospital, in June 2018 explaining the EoE symptoms Aars was struggling with. As usual they were wonderful and found a way for him to have an operation the following week for more biopsies. Aars was in the midst of exams for setting his GCSE classes the following school year so wanted to wait till they were done. So the hospital accommodated him. He had his op a couple of weeks later at the start of July instead.

The biopsies they took during the op demonstrated that the EoE was rampaging the numbers were back up to 100+ (12 is a clear diagnosis). The photos illustrated the damage that they had done to his oesophagus in just 3 months! So Aars was put on a double dose of steroids for three months, and then back to his previous dose for another three months. BUT he continued to loose foods and was having more and more allergic reactions of increasing severity to previously safe foods. Basically I would think I had found a way to make bread/pancakes/biscuits… for him and then he would have a reaction so I would try a different way and then he would react to that… on and on… it was a nightmare of ever diminishing circles of ‘safe’ food. We were left with rice, sweet potato and cassava – for starches and when he said he was starting to react to them. I was desperate.

still exploring, still adventuring – we are managing the illnesses not allowing them to become his identity, nor allowing them to limit life and living… this is the mouth of a lava tunnel in Iceland, incredibly dark and mesmerisingly beautiful

After a summer of intense food losses and reactions, Aars ended up being admitted into our local hospital in October. The day before Aars felt like he had had a severe allergic reaction to the air on the high street and was scared to take the steroids because he felt they were making the reactions worse and he was scared to leave the house. I (and his GP) were also concerned because Aars was loosing  weight and I was struggling to feed him as he said he was reacting normally safe things and he was getting through bottles of antihistamine!

The paediatrician who looked after Aars whilst he was in the local hospital was an amazing individual. The perfect person for Aars at that time, he was a really softly spoken American! Not being and immunologist or a gastroenterologist he looked at Aars holistically. He asked Aars to explain his experiences of anaphylaxis, to describe the differences between anaphylaxis, lesser allergic reactions and EoE – really getting into what the sensations were for Aars… He really helped Aars to differentiate between them and reduce the fear-factor and acknowledge the anxiety which was clouding perception. He asked Aars to take the steroids in the safety of the hospital and asked me to bring in some of the foods which I thought should be safe (which had been safe the week before) for Aars to try in the safety of the hospital.

He built trust and understanding with Aars. He was interested in Aars and his experiences rather than asking me questions. It was good. Aars took the steroids and ate the foods he had been wary of and he was fine. It was a key moment of clarification for Aars. Of stopping and really tuning into his body and getting a clear sense of what was going on. The paediatrician also did a load of blood tests to check Aars health and nutrition… and amazingly Aars wasn’t deficient in any way – which I was astounded and encouraged by. I was still managing to get everything he needed into him, in spite of loosing food after food!

Unafraid of exploring the dark spaces of our existence… the lava tunnels Iceland

A month an a half later we were back at the Royal Free seeing his awesome allergy consultant – she tested Aars for many things. Aars was proven to have many new severe food allergies – which did not surprise us given our experience during the preceding eight months. But when she heard the list of food losses he’d experienced during March – October she also thought that he may have developed more tree pollen allergies and was experiencing cross-sensitiatation with foods. (Aars last two anaphylactic shocks were to ‘safe’ foods which had cross-sensitised with silver birch pollen). She was right. He had become severely allergic to all tree pollen.

So, as Aars is so severely allergic, and we are so limited in the foods he can eat immunotherapy was suggested, to start as soon as possible. Thus we started our new year 2019 heading up to the Royal Free every Friday afternoon for immunotherapy. Unfortunately (and unknown to us and the docs at the time) the steroids Aars was taking have reduced his ability to respond to normal sickness so he got really ill. It was awful. An exhausting and terrible way to start the year. But he got through it, and the next course will be in the Autumn and everything crossed maybe we will see some benefits this time next year.

Aars with his fave Royal Free team member – Rolo         (March 2019)

In March Aars had another op and more biopsies. They showed that the immunotherapy hadn’t aggravated the EoE, the steroids had done the trick and the numbers are down to a far more reasonable 10. We also got the results from tests done to see how the steroids are effecting his body’s ability to produce hormones and steroids – which was not such great news!

So Aars is on steroids for the duration of the tree-pollen season, then hopefully he will be able to have a holiday from them for a few months over winter. Probably more ops and biopsies will be required to monitor the EoE.

So that is him up to date.

Hampstead bathing ponds… what a mistake that was! (July 2018)

Shockingly I also was über ill – but that is a tale for another day. It started the night before Aars operation in July 2018 when we foolishly went for dive and duck in the Hampstead Bathing Ponds. The symptoms have been varied and weird half my hair fell out for example! But I feel like I am on the path to healing now – really focusing on listening to my gut!

In the midst of all the hospital and struggles we have, as always, been really blessed. Blessed with wonderful care from the amazing staff at the Royal Free, our GPs and our local hospital. Blessed with amazing support, love and encouragement from our wonderful, kind, generous, loving and beautiful friends, neighbours and family. I have been truly overwhelmed by the kindness and love demonstrated by friends both near and afar, people who I see often, rarely or haven’s seen for twenty+ years yet send me emails and cards with affirming and encouraging words and gifts. Blown away I have been! Thank you! You really are unaware of how much these expressions of love truly support us.

What doesn’t kill us makes us stronger! Ha! Well neither of us are feeling particularly strong – but our relationship is super strong. We have been on adventures together, not just health ones but in the UK and Iceland. We are very blessed to have an honest, authentic and genuine relationship. We have cried with laughter through the worse times at hospital! We share a macabre sense of humour. I feel deeply honoured to have been chosen to nurture and care for Aars. He has been developing his creative outlet and photography skills – check out his Instagram if you haven’e seen it yet. He has an unusual eye for a fifteen year old boy. I am über proud of the young man he is transforming into.

stark, harsh beauty… Aars amongst fragments of the glacier on diamond beach Iceland      (December 2018)

In spite of Aars missing more school than ever before due to all his health issues, his attendance is down in the low 80% he’s doing OK!! We got his report this week and his GCSEs are all on target for high B’s with potential A’s dotted about!

Due to loosing loads of basic foods – like potato starch and corn or maize I have been developing many recipes so I will start getting them up on the blog in the coming weeks or months. Looking forward to engaging with the blog again!

Until I do peace and love to you,

Rai x

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