Day One – Sunday May 19th

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Today was the first day of our week on a M-friendly diet. Mike and I were both quite looking forward to the challenge of eating as our youngest does, not least to see what health benefits we gain as the week progresses. I don’t think it will come as any great surprise to anyone that Mike and I would both like to loose a little weight and this seems like the perfect opportunity to kick-start that whilst supporting M in his daily struggle too.

I’ve spent some time explaining to M what Mike and I were doing this week and think it only fair that I do the same for you. From today to Thursday, we will be eating food that M could eat if he wanted to, but will not be eating necessarily exactly the same meals. For example, Mike and I will be adding vegetables such as mushrooms, courgettes and tomatoes to our meals, knowing full well that M won’t eat them, but that they currently are part of his “safe” foods. Friday will be different. We will eat exactly the same things that M eats, nothing more, nothing less and, at M’s request, we have both agreed to drink his protein shake (Neocate Active) on that day too.

Breakfast was, perhaps, the easiest meal to cope with as, for the most part, it wasn’t going to see any major changes to our usual fare. Mike usually starts his day with a bowl of cereal, raisins and either coconut or rice milk and as M can eat all of that too, he didn’t need to change that meal at all. My breakfasts will need a little more adapting as I typically eat fresh fruit and yoghurt or some toast, neither of which fits into the wheat, gluten, dairy, soya and egg free regime.

Lunch was a little more challenging and saw our first pitfall of the week. We headed to Tesco to pick up a couple of their Free-from frozen pizza bases as well as a couple of other free-from ingredients to see us through the week. I was disappointed to discover that our local Tesco appears to have stopped stocking these pizza bases, which are the only ones I’ve found that M can eat as they are egg-free too. I had to make a quick decision and decided to pick up a pack of their fresh bases instead as they contain a little egg, but are safe for G to eat.

Getting home, I made my 1 remaining M-friendly pizza base into a pizza for Mike and him to share and used the smaller, individual bases to make a pizza each for G and me. The ingredients were as follows:

Heinz tomato ketchup and Barbecue sauce on the base (though mine had a home-made salsa of chopped tomatoes, onion, garlic, chilli flakes, balsamic vinegar and sugar)
Marks and Spencer’s salami slices and gluten-free breaded ham
Pimiento stuffed olives
Corn
Tinned pineapple (though I forego this as I’m not a fan of fruit and savoury together)

G had the same, except without the pineapple or olives and with some goats’ cheese grated on the top.

The pizzas were delicious, but I was soon to suffer the consequences of a very silly mistake. In my rush to check the ingredients to make sure that we weren’t inadvertently adding anything that M couldn’t eat, I forgot to check for my arch nemesis: potato. Within minutes of finishing my pizza, I started experiencing stomach cramps and quickly realised my mistake. Thank goodness that the mistake was mine and didn’t cause problems for my boy!

An afternoon bike ride and play in the park for Mike and the children followed, whilst I got started on tonight’s dinner. I decided to ease us in gently and opted for something I knew we could all eat and would enjoy – a Roast Chicken dinner. This consisted of:

Roast chicken (with enough left-overs for Mike’s lunch tomorrow, dinner tomorrow night for us all and even some chicken soup for later in the week)
Sweet potato mash made with Dairy and soya free spread for M and me
Mashed potato for G and Mike
Peas and corn
Carrots
Courgettes topped with mustard (just for Mike and me, though M did give this one a go)
Gravy made from Knorr chicken stock cubes (wheat and yeast free), onion and a little balsamic vinegar

I even managed pudding tonight and adapted a recipe for Treacle sponge pudding made with rice milk, rice flour, xantham gum, dairy/soya free spread and egg replacement powder and all cooked in the microwave in 5 minutes. Some custard made from Birds’ custard powder, sugar and rice milk topped it off perfectly.

Today was an easy day for us food wise. I chose to cook things that I knew were easy to ensure as being M-friendly as well as things that the whole family enjoy to eat. The rest of the week will most definitely be more challenging, but it’s a challenge that I feel I’m up to, after all I’ve been cooking this way for the last 2 years.

An unexpected hiccup

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Today has just been one of those days. Mike and I have been psyching ourselves up for the start of our week on the M-friendly diet which starts tomorrow morning. The sun came out to make today a beautiful day and we had every intention on going out on a family bike ride, possibly with a picnic in tow.

However, despite the best laid plans, today has not gone as we were expecting.

Our hiccup started at around 8.30am this morning, when G and M descended on me and woke me up to tell me that M had some spots on his back and he was very, very itchy. A quick glance showed some unpleasant red welts on his lower back, which he couldn’t stop scratching. When I examined a little further, the welts were in fact across his left shoulder, in two patches on his middle back, down one side and in a patch at the top of his buttocks too.

M has been a little out of sorts for a couple of days and yesterday evening described his feelings of a “tummy-ache” and “feeling very hot inside my tummy”, even though he had no obvious temperature. Today he was more than a little out-of-sorts, but considerably more grumpy than usual. He has over-reacted to everything that happens, but then flaked out with no energy to keep his frustrations going.

I consulted my Mum, her medical books and Dr Google. We were a little concerned about measles given the current epidemic in Wales in particular, but didn’t feel his rash looked enough like measles spots to warrant us being unduly concerned. I tried our local GP, but the health centre was closed because it’s a Saturday, and we all know that you can’t get ill on a weekend! The recommendation on the recorded phone message was to call the NHS’s new number “111”.

As Mike organised a cooling bath for M and supervised both children getting dressed, I phoned the NHS helpline and talked through M’s symptoms with the phone operator. Her reply was that we needed to keep M cool and hydrated and she would arrange for a consulting operator to call me back within 2 hours as she felt that his condition warranted it. I gave my mobile phone number as the contact number and decided with Mike that we would leave G with my Mum and take M into the A&E department of the local Children’s Hospital.

Off we went on our unplanned Saturday morning visit to the local A&E and I have to say now how impressed I was with the NHS 111 operators. During our 25 minute journey, not only had the consulting operator called me back and discussed M’s symptoms, but she also arranged for the local out-of-hours GP to phone. His recommendation was that we came in and got the spots checked out, particularly because of M’s underlying condition and booked us into the Out of Hours GP surgery at the local hospital.

We got there and were seen unbelievably quickly. The doctor we saw gave M a thorough examination and then gave us her verdict. She believed that M had had an allergic reaction to either another food or possibly to an environmental allergen, which caused his body to “break-out” in the red and itchy welts, rather than the usual response of stomach cramps and diarrhoea. Fortunately, we keep a detailed food diary as a matter of course and so are able to track everything M has eaten and also every complaint, reaction or temperature he experiences.

At the moment, we have no idea what caused this reaction and have to just persevere with helping him recover from it without the assistance of any additional medicine – as he already takes 2 anti-histamines, the only logical next step medication-wise would have been a steroid-based treatment and we didn’t feel his symptoms needed such an extreme response. All we can now do is keep monitoring the situation and look out for further break-outs on his body. I hate to think that there could be yet another food that needs to be removed from M’s limited diet, but that may be unavoidable.

By the time we got back, recovered G, ate lunch and got home, most of the afternoon had disappeared on us too and we had time enough to play some board games and watch a little TV before bedtime. It’s not been the day any of us planned, but I guess that that’s just life with an allergy child.

National Eosinophil Awareness Week

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Forgive me for interrupting our “story so far” and I promise that normal service will resume soon, but I wanted and needed to raise awareness of the importance of next week. As the image above shows, May 19th – May 25th is a week dedicated to raising the awareness of everyone to Eosinophilic Disorders. Until we were dragged kicking and screaming on this tumultuous journey with M, neither Mike, I or indeed our families had ever even heard of Eosinophils, let alone had any idea what they did and the massive impact they could have on life as we knew it.

We are amongst the lucky ones as M is able to eat “proper” food, even with all his dietary restrictions and is happy to take his medicines on a daily basis to help manage the symptoms. There are very many children out there who have even more restrictive diets or cannot eat at all and instead are fed through nasogastric tubes. That could so easily have been the position for us and could still be if we can’t stabilise M to everyone’s satisfaction, and so I’m thankful for every day that it isn’t.

Over next week and the weekend of June 8/9th, we will be committing to raising awareness and educating friends and family about M’s condition.

Next Friday, May 24th, is “Eat like us” day, when families of children with EGID will be committing to eating like their child for the day. Mike and I are, however, committing to something slightly more. We will be adopting M’s diet for the full week, adapting our recipes and meals to accommodate the “egg, dairy, wheat, gluten and soya” free diet he has to eat everyday. On the Friday itself, we will be eating exactly what he eats for the day, though I’m not sure either of us will be braving the Protein shake!

On Sunday June 9th, we have signed up to walk the RBC Race for Children in Battersea Park, London. This 5k walk/run/ride/scoot is to raise money for GOSH, who are currently redeveloping the hospital to create more much-needed space for the children, family and staff who are there on a daily basis. M is keen to fundraise for “his” hospital and as we are already in London that weekend and have a lot to say thank you to GOSH for, it was a really easy decision to make.

This is not M’s first foray into fundraising for GOSH. Following his and our stay at the Patient hotel last January whilst he had his scopes, M asked how much money it cost to support a family to stay there with their child for the week. Through some research on the GOSH charity website, we learned that £50 would pay for the upkeep of one room for a family for 5 nights. With the help of the Stagecoach theatre school that G and M have been attending for 5 and 3 years respectively, the end of term collection in March 2012 raised a fantastic £135, which will pay for nearly 2 full weeks for a family in one of their rooms.

I will be updating my blog on a daily basis from May 19th to detail our menu choices and how we manage the week on the diet M has been following for the last 2 years. It will undoubtedly be a tough week for us and I have to ask – would you be brave enough to walk even 1 day in the shoes of these courageous children?

Everyone needs a hero

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This photo of M was taken during our stint at the London 2012 Paralympic Games last September. It was an amazing experience for us all and one I doubt we will ever forget. Thinking about the trials and tribulations we face on an almost daily basis, I realise that it really is true, everyone does need a hero.

I’ve yet to find out who M’s hero is, or indeed who G has found to admire, but I know my hero without question – Sir Steve Redgrave. One of the greatest British Olympians ever, in my opinion, and what is more, he’s an individual with diabetes succeeding in his chosen field. He may have been diagnosed over 10 years after my own diagnosis, but his determination “[from]…very early on that diabetes was going to live with me, not me live with diabetes” has always been inspirational to me. Whilst I have never had, nor am ever likely to have, aspirations to be an Olympic athlete of any description, to know that a fellow diabetic, just like Gary Mabbutt MBE, could become a world class athlete is awe-inspiring.

I would love M to have a hero who suffers from the same condition as him, so that he can see that he can achieve anything in life that he puts his mind to. As a parent, I believe it’s my job to help him build his dreams and see them through to fruition. Whatever our children choose to be, I hope that Mike and I can support them as they strive to achieve their goals.

Attending the 2012 Paralympics was an opportunity for our children to see that, whatever your disability or difficulty in life, you can become an amazing sportsman (or woman!) and represent your country. There was a refreshing honesty in walking around the Olympic park, feeling the love and support for these athletes from everyone there and being able to hold them up as potential heroes. I loved that M and G could openly question what disabilities existed without being embarrassed or hushed for fear of offending the individual in question. Of course, they need to learn to be tactful, but we need to learn to be honest with them. If we show embarrassment in our approach to disability, how can the next generation learn to be open-minded?

There is no embarrassment in being a little different from your peers and M will need to learn to cope with the questions and comments that will no doubt come his way as he grows older. He struggles with dealing with his classmates and will often want to keep quiet about his regular hospital visits, but he does carry on, against the odds. As he hits his teen years, though not for a long time yet thank goodness, I have no doubt that he will rebel against his condition and the fact that he is different, but as long as I can see him through those turbulent times, I will feel that it’s a job well done.

And who knows, whilst we still search for an EGID hero for M to admire, perhaps he will become one in his own right one day!

It’s the little things

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That can cause the biggest problems, as we learned to our dismay last May. Following our previous GOSH appointment, life had been ticking along quite nicely. We still hadn’t achieved an “accident-free” life for M, but things were improving and he no longer had soiling issues on a daily basis. We hadn’t got a confirmed diagnosis, but we seemed to have reached a reasonable status quo and had hope that things could and would continue to improve.

M was happily taking his medicines daily and we had conquered the protein shake challenge and had possibly the only child in history who liked taking his “special” drink. Just when things seemed to be settled and quiet, we suffered a setback that none of us had been anticipating.

M woke one morning with a sore and slightly puffy left eye, which two days later, looked like someone had bopped him in the face and left him swollen and bruised. Having had my own eye problems over a decade earlier, this is one area that I am particularly sensitive to and without questionning my decision, we all headed to the local eye hospital. M and I went into A&E, whilst Mike and G disappeared off for a walk around the harbour and a second breakfast. We didn’t have to wait too long and the consultant quickly diagnosed Blepharitis, which is an inflammtion of the rim of the eyelid as a result of a bacterial infection. I was shown how to soothe M’s eye and we went away with a prescription for an antibiotic to ensure that the infection didn’t linger. Oh, if only every diagnosis and treatment was as swiftly delivered as that one!

One week later and a follow-up appointment at the Eye Hospital, and M’s eye had returned to normal and the infection appeared to have cleared. BUT, we hadn’t expected the impact of a simple infection and a course of antibiotics on M’s gastric health. It was like going back to our starting position a year earlier as all of the improvements disappeared and M’s health took a nose-dive. This was disappointing for us all and extremely frustrating for M. Having gained limited control over his toileting and his diet, we were back to square one and M couldn’t cope with this change to his circumstances.

What followed was a disheartening and frustration-fuelled few months. We made sure that his diet was as tightly controlled as possible and gave M as many outlets for his angst as possible. During this time, we learned that any infection that M experiences, even something as simple as the common cold, can upset his gastro system and cause a flare up. This leads to a return of the original symptoms and can take time to recover from. The eye infection started M’s flare up and the course of antibiotics added to it. I now know that M is living in a highly sensitive balance between his condition and his general health and this has to be one of the hardest things that we will have to deal with as he goes through life.

This state of affairs continued without improvement until finally, in the middle of August and not long before another holiday to Portugal, a GOSH registrar suggested we tried adding a probiotic supplement to M’s diet to help his body recover. We had a month to try out this change and it was tough. Whilst everyone had warned us about the difficulty we would face getting M to drink a protein shake, no-one though to mention that we would face similar challenges when introducing the humble probiotic supplement.

I think we tried just about everything to get M to take it, and have a vivid memory of sitting in the breakfast room of a London hotel whilst visiting for the 2012 Paralympics, with M on my lap, a glass of apple juice laced with probiotic on the table in front of me and a medicinal syringe to physically get the mixture into M. I have no doubt that we must have been a sight for sore eyes on that glorious September morning as families surrounded us enjoying their breakfast and I strong-armed M into taking his medicine; and I wonder what tales of family life in UK may have gone back with visitors from around the world.

The good news is that the probiotics helped and by the time of our return visit later in September, we had regained some of our lost footing, though we still weren’t moving along as quickly as any of us would have liked.

Life is a roller-coaster

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Having put M’s scopes behind us, we headed into February and our next appointment at GOSH with lighter hearts. We had been reassured that Dr Hill had identified what the problem was during the surgery and that all we needed was the biopsy results to confirm the diagnosis.

Unfortunately, Mike and I were about to hit a “low” on our roller-coaster ride. The much anticipated diagnosis of Crohn’s Disease was not supported by M’s biopsy results and we left that appointment with no end in sight. There was talk of putting him onto the “Elemental diet”, which entails removing all foods for a number of months until the body has time to recover. The prospect of having to consider a nasal-gastric tube to feed M for any length of time was a tough one and one that Mike and I disagreed over. I felt that we needed to do whatever was necessary to get our boy onto the road to recovery, whereas Mike felt this was too extreme an approach and one that he wasn’t yet prepared to commit to. The registrar we saw suggested that M had some blood tests done to rule out some other possible contenders before we headed down this road and another appointment was set for a month later with M in tow once again.

Another month passed and the day before M’s birthday, we headed back to GOSH. This time Mike wasn’t able to take the day off work, so Mum accompanied M and me on our trek to the capital. We weren’t really sure about what we were trying to achieve and where we were heading. M had now been on his free-from diet for 9 months and whilst we had made progress, it wasn’t enough to satisfy us or the medical team. We were also concerned that M’s weight gain was minimal especially as his appetite had dropped off since starting his new diet and it was becoming a tough game to get him to eat.

We left GOSH with a raft of medicines to add to M’s daily diet. He was prescribed Cetirizine and Ketotifen, both anti-histamines that would help his body recover and repair from the allergic reactions he was still suffering from internally. We also needed to introduce a protein shake called Neocate Active to help him gain and maintain his weight. The biggest challenge was going to be to convince M to drink the protein shakes as they are notoriously difficult to introduce successfully to children and even our GP wished us luck as he wrote the prescription.

True to form, however, after an initially bumpy start and numerous attempts at flavouring the shake, M willingly drank his shake daily and even now, 12 months on, has been known to ask for more than one in a 24-hour stretch! The medicines proved to make a difference to how M was feeling and whilst there were no immediately obvious improvements, M seemed to understand that they would help him feel better and took them with very little fuss.

It was during this time that I became a big fan of Dr. Google. I wasn’t looking for all the answers to all my questions, including those I hadn’t yet thought to ask, but rather needed to find information about the experiences we were going through and to know that we weren’t on our own. It is important to stress that you do have to be sensible in your approach to using on-line search engines to identify a condition. It would have been very easy to diagnose any one of a number of frightening illnesses, so a modicum of common sense had to prevail.

However, in my desire to understand why both antihistamines had been prescribed and what result we were trying to achieve, I stumbled across a list of symptoms that fitted M to a T. The Fabed website sought to educate and support families coping with something called “Eosinophilic disorders”. I knew nothing about these conditions, having never even really heard about eosinophils and what they were, but the symptoms rang a bell and I determined to read around it until I became a home-grown expert in it. I discovered not only Fabed, but also another website called Parentsown, which is home to a series of forums for varying conditions. Whilst the forums are not massively active, I made contact with a couple of other parents who had children with Eosinophilic disorders and became more convinced that this was the diagnosis we were seeking with M, although the condition was going to haunt me for another 9 months before we got it confirmed as a definitive diagnosis.

D-day

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As we head up to London today for yet another appointment at GOSH, I thought I’d complete the story started in my last blog.

D-day had finally arrived. We got up, washed, dressed and packed up our bags before heading over the road to the ward for M’s scopes. We had a lot of hope pinned to these simple tests and both believed that we would get some answers once they had been done.

When your child faces surgery of any kind, as a parent you are understandably nervous. The medical team at GOSH did their best to put us at ease and to reassure us that all would be well whilst M was being examined. My biggest concern was the anaesthetic. M had broken his left arm in 4 places when he was 4 and had had to have 2 operations to put it back together. Both times he had experienced a noticeable reaction to the anaesthetic used with symptoms of a high temperature, hallucinations and thrashing about as he came round from it. The second time had been worse than the first and I was concerned about how he would react this third time as I had been warned that his reaction may become more severe each time he had to undergo anesthesia. His consultant and the anesthetist talked this over with us and reassured me that they would keep an eye on him.

We went with him when he was given the anaesthetic and this experience hit Mike particularly hard. On both of the previous occasions, only one parent had been allowed to accompany M into the prep room, so I had “been there and done it” before. The sight of M chatting away one moment and drifting to sleep with his eyes rolling back in his head the next, reduced Mike to stunned silence and to something of an emotional wreck. We returned to the waiting area, where the nurse advised us that it would all be over in about 30 minutes, so enough time to go and get a coffee at the nearby coffee shop.

Taking note of my need for a sweet and caffeinated beverage (Vanilla latte!) and his own for some fresh air , Mike and I wandered out into the winter weather and down the street. Neither of us wanted to linger, so we grabbed a coffee to go and hurried back to the waiting room. What happened next was every parent’s nightmare. M did not come out of his surgery within half an hour, or indeed within an hour. After over an hour of anxious waiting and quizzing of the nursing staff, we were finally ushered into the recovery room to see our boy.

The operation had not gone as smoothly as hoped because of the state of M’s insides. The colonscopy had gone well, but when they inserted the tube for his endoscopy, they discovered that his intestines had been badly damaged by the as yet undiagnosed condition and he had bled heavily as they tried to examine and take biopsies for testing. In the end, they had done what they could and had left it that. His consultant was confident that she knew what the problem was, even with an incomplete examination done, but she wanted to wait for the results of the biopsies before confirming her diagnosis.

The original plan had been that M would come round from the anaesthetic, have a small bite to eat, use the toilet and then be discharged by lunch-time. The extended length of the operation and then the extreme reaction to the anaesthetic meant that we’d be lucky if we got out by dinner. Fortunately, Mike and I had anticipated this turn of events, well the reaction bit at least, and had sensibly booked a later train to take us back home.

I dealt with the thrashing, the biting, the uncontrollable sobbing and the screaming as the anaesthetic passed through M’s tiny body, until finally he fell into a fitful sleep. We survived the departure of those children who had been scoped after him and the arrival of those for the afternoon list for theatre. We manoeuvred ourselves, M’s bed and our bags away from the main recovery room to the “spare machinery” room as they needed the bed space for those new patients. And we appreciated the drinks and sandwiches they provided for us and for M when he eventually woke up completely.

As the consultant left at the end of her day, we were finally told that M was going to be discharged and we left GOSH approximately 10 hours after we’d entered it that very morning. Mike flagged down a passing black cab and the cabbie helped us in with our luggage as I carried our suffering and sleepy lad in and onto my lap. We had acquired some additional soft toys on our trip, well every boy needs a gruffalo and mouse to see them through surgery, as well as a GOSH bear for G as a present from our stay away from home and we needed extra arms to manage those without losing them along the way.

Getting onto the train at Paddington felt like no mean feat, but we were reassured and hopeful by our consultant’s assurances that she knew at last what we were dealing with and prepared for our return visit less than a month later.

The countdown begins

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As the date for his scopes, endoscopy and colonscopy, approached, and filled with dozens of questions, I read the information sheets sent by GOSH and forum links found through vague internet searches to understand what would be involved. Our trip to London was going to be a 2 night stay and this is where GOSH really comes into its own. They have the most amazing facility for families such as ours with children who need to be there for more than a flying visit and are travelling from outside of the M25. The Patient Hotel is situated opposite the main entrance to the hospital and is free – yes you read that correctly! – accommodation provided to patients and their families who need to stay overnight. All they ask is a £10 deposit for the room, returnable when you check-out and a £10 deposit for the TV remote control, which is similarly refunded.

Each room is large and practical as well as comfortable, allowing for hospital beds or other specialised medical equipment to be reassuringly on hand without crowding the space. There is a large kitchen and sitting room area open to everyone on every floor as well as a pile of menus for the local restaurants and takeaways. When you’re facing the trauma of your child being in hospital for however long, having one less thing to think about is invaluable and knowing that you’re on hand for the hospital, a real god-send.

M was due to be seen for his pre-op first thing in the morning, so we travelled up to London by train the night before, leaving G once again in my Mum’s capable hands. We settled quickly into our room before heading out to have some dinner and then to get some sleep before the challenging days ahead. The pre-op was an emotionally charged occasion for us all. M was allowed to eat breakfast on that morning (Wednesday), but would then be unable to eat any solid food until after his scopes, which were being performed on the following day (Thursday). His bowels needed to be “prepped” for the scopes, so his system was flushed out completed by a series of strong laxatives given in intervals during the Wednesday.

M approached the whole experience with a stoicism that belied his years. He chatted cheerfully to the nurses we met during the pre-op, listened intently when the anesthetist talked about the procedure and refused the “magic” cream to numb his arm whilst his cannula was put in. Armed with the list of the few things he was allowed to consume before his operation and filled with more than my fair-share of trepidation, we left GOSH at lunchtime to while away the hours before bed.

M understood that Mummy would have to eat during his 24+ hours without food because of my diabetes, but he asked Daddy to stick to his enforced fast with him. Mike gladly agreed and the pair of them survived on ice-lollies and fruit juice whilst I enjoyed, somewhat guiltily, the sandwiches and snacks I needed to keep me going throughout the day.

With a long day ahead of us, we prepared as best we could. We know M would experience intense diarrhoea as his bowels were emptied, so we bought some boys training pants to keep his clothes from being spoiled. We also decided to take him to the theatre to see “Stick Man” by Julia Donaldson. This took us into the evening and we finally headed back to our room at GOSH. I had hoped that M would settle to sleep quite quickly, though looking back at it now, I have no idea why I thought that day would be so very different to any other! I think I had hoped that the lack of food since 7am would mean that his body would be tired and push him towards sleep, but instead he and I sat up watching “Monsters Inc” on our portable DVD until at least 11pm.

M was understandably nervous about what was going to happen, though we had taken time to explain it to him and to answer any questions he had. I suspect that his sense of humour was probably what helped him the most, the prospect of a camera going down his throat, but even more hysterically, up his bottom, to take photos of his tummy had him giggling for days and even now, he laughs every time he thinks of it.

By midnight on that Wednesday evening, our room was finally quiet and whilst it took me a little longer to drift off to sleep, we all managed to get a reasonably good night’s rest.

When life gives you lemons…

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…make lemonade. Isn’t that how the saying goes? I have to confess to pondering this one in the early hours of this morning after being woken up by a somewhat distraught M who had just had a soiling accident whilst asleep. He woke me at 3.45am and 2 hours later, my mind was still buzzing and sleep seemed a thing from the dim and distant past. This doesn’t happen very often, but the impact is huge and it got me to thinking.

The impact of M’s condition has been massive on us all as a family and not just on M himself. To anyone who has a “sick” child, you will understand what I mean.

Mike and I have suddenly had to become medical experts in our own rights, despite our alternate careers as an accountant and surveyor, as who else is going to make sure that the best is done for M? I now know so much more about gastro conditions and food allergies than I ever anticipated needing to know. I’ve had to learn coping mechanisms, not just for M to deal with his frustration and anger at being ill, but to help us cope as well. The years of not having an answer have taken their toll and both Mike and I have had to re-learn who our little boy is and what makes him tick. I have to be his first line of defense wherever we are and I’m the one in his corner fighting his cause.

One of the hardest things about this illness is that there are no obvious outward signs that M is ill. He is a slight child and even when seriously underweight and struggling with full toilet-training, he has never lacked energy or enthusiasm for life. He may suffer with stomach cramps and joint aches that would floor most adults, but he just gets on with it. His complaints of aching limbs have been ignored for years as I was guilty of thinking of him as a “moaning” child, but now I know that those aches are very real and extremely uncomfortable whilst they last. He has been living the last 7 years with these as his normal, so he only stops when he’s suffering extreme moments of pain. He had then, and continues to have, the most amazing stamina and a reserve of energy that I can only envy. He is constantly on the go and has never let his health problems slow him down. In very many ways, this is his greatest strength, but also the biggest problem for us.

The lack of obvious evidence of his poor health means that people just don’t understand that he is ill and look at me in disbelief when I explain just how poorly he can be and, to be perfectly honest, I don’t blame them at all. He doesn’t look like a child who eats fresh air and frequently manages on less than 8 hours sleep a night; but he is.

I don’t think that Mike will mind me sharing that he has struggled to come to terms with M’s condition. I have an advantage in that I have grown up living with my own T1 diabetes. I know that these things can be survived and have just got on with it. Mike has found it harder and has longed for an easier fix than the road we seem to be travelling down at the moment. Of course, we now have a diagnosis and that has helped us all. Being able to put a name to the condition, even though it’s so rare that no-one ever seems to have heard of it, means that our fight has not been in vain and we can no longer be dismissed as fussy parents. This is M’s life for now and for the foreseeable future, and as his parents, our job is to ensure that he learns how to make the best of a bad situation.

M has struggled too, as you would expect and his levels of frustration at times are massive. Not only is he restricted by what he can eat and how his body reacts, but he also has to deal with the knock-on consequences. It is no longer possible for him to go home for tea with his friends, attend birthday parties, participate in cooking at school or even have a Christmas or Easter treat, without me having to provide a detailed list of what he can and can’t eat and the inevitable 20 minute discussion with the adult in charge about his condition. We encourage him to have a go at whatever he wants and refuse to let his condition dictate who he is or how he lives his life; and a big thank you has to go to my parents who brought me up with that very same approach to T1D and my life.

He acts out – he kicks and hits and shouts and bites – and sadly the people who have to survive the mood swings are us and G. G has had a hard role to play as the big sister to a poorly child. She worries about his health and I know struggles when we have to disappear off to London for the day for his hospital check-ups. But, she is also a child and has her own challenges to deal with. My children are the best of friends and would defend each other to the end; but are also the worst of enemies. It has become extremely important for us to invest as much time in G as we can and the last couple of months have enabled us to do just that far more than before. She recently took part in a music event organised by the local authority music education department and her clarinet skills were considered good enough to allow her to play with the wind band. This was something just for her and she loved every moment.

She has also been invited to join the local swimming club and that is something we are keen to encourage her to do. There was a point when we wondered a couple of years ago if she’d ever learn to swim, but she is now excelling at it and her teacher invited her to join the Club to see how she gets on. It’s an additional time commitment on a weekly basis for us as she will need to attend at least 1 extra training session a week as well as competitions, but we wouldn’t have it any other way.

I’m proud of both my children – M for his stoicism in dealing with his condition and making the most of life; and G for her continued hard work at school and at her after-school clubs. She may not like the fact that M misses school regularly to attend hospital appointments, but she admits that she wouldn’t want to have the blood tests and diet that he has. Neither child has an easy cross to bear right now, but I hope Mike and I manage to get it right enough to see them successfully and happily through to adulthood.

7 years to diagnosis

Searching for an answer

Day One – Sunday May 19th

An unexpected hiccup

National Eosinophil Awareness Week

Everyone needs a hero

It’s the little things

Life is a roller-coaster

D-day

The countdown begins

When life gives you lemons…

First Christmas