Tag Archives: hospital

Grief

We’re almost at the end of term and not just that, but also the end of the school year. As I said in my last blog post, it’s been a time of reflection about M’s health and his first year at secondary school as well as an opportunity to draw breath before we head into the chaos of a busy summer and swiftly followed by the start of G’s GCSE studies. Following the challenging start to 2018, when both Mike and M came down with a nasty bout of Aussie ‘flu, life continued to be incredibly difficult and the saddest of circumstances meant that my birthday, M’s birthday and the 5th anniversary of this blog passed quietly and with far less recognition than would normally be the case. I’ve sat down so many times to try and find the words that could even begin to explain my extended absence from my blog, but it felt for the longest time as if my creative well had run dry and only now am I beginning to emerge from the other side of a deep, dark hole.

Just a couple of days before my birthday, I received a message to say that my Uncle had been taken ill and rushed overnight to ITU. There was no question of my next move when I received that news and fortunately Mike was working from home that day, which allowed me to get home, pack a bag and drive to South Wales to stay with my Aunt for as long as I needed to be there. We were both extremely lucky to be working for understanding employers, which enabled us to adjust our working arrangements and commitments to accommodate the needs of all concerned, most especially G and M. Whilst this sudden downturn in health came as something of a shock, we had actually visited them both the previous weekend when my Uncle was first admitted to their local A&E with a stubborn chest infection that refused to go away. It wasn’t quite the visit we had had in mind, but now we are all so glad that we had the opportunity to spend a little time with him, laughing, sharing news from work and school and that the children could create memories that will stay with them for a lifetime. There are hopefully no regrets that they didn’t have time to come to say a final goodbye as they had that precious time with him before he was taken so ill.

Sadly, despite all our hopes and prayers, there was no coming back from the sepsis that had taken hold so unexpectedly and just a few days later I sat by his bedside with my Aunt, his sister and other niece as he passed away. He was just 63 and had been fighting MS, T2D and other health complications over the last 20 years, but this last battle was just too much for him to win. Mike continued to hold the fort at home, whilst I did all that I could to support my family in both places. The children have grieved in vastly different ways, just as we adults have experienced and dealt with our grief in our own ways and there have been no easy answers or quick-fix solutions in helping them cope with this, their first real experience of death.

My Uncle was, in many ways, a step-in Granddad for both G and M as my Dad passed away 14 years ago this year; and they both had a very close relationship with him. G has grieved quietly, keeping much to herself, whilst M has shed many more tears and been more open in showing his loss. Never was this so clear than on the day of the funeral itself, when G’s only wobble came as the hearse pulled up outside the house and we took our places in the cars. I was travelling with the women of the family, whilst G and M were both due to be travelling with Mike. It was at that point that G’s eyes filled with tears and we walked hand-in-hand to the car, allowing her some time to look at the flowers with the coffin before she travelled on to the crematorium.

In complete contrast, M was happy to travel with Mike and G, but as soon as we all arrived and it was time to go into the service, the tears started coursing down his cheeks and didn’t let up until long after the service had ended. The days since the funeral have had their ups and downs as you’d expect. In recent days, we’ve been able to talk openly about why their beloved Uncle was taken ill and died and they’ve had the confidence to ask us challenging questions, fully expecting us to be honest in our replies. I never really thought twice about whether they would attend the funeral or not, though we did give them the opportunity to say no if they really didn’t want to go, but they both wanted to have the chance to say their goodbyes and I’m glad that they did.

Devastatingly, this was the start of a tragic 6-week period for Mike and me. Just 2 days after my Uncle’s funeral, we found out that a close friend who we have known since Mike first met her over 20 years ago in Canada had passed away suddenly. She had emigrated to less than 20 miles away from us here in the UK with her family a few years ago and Mike and she regularly chatted on the phone. Jenn had turned 42 at the start of February, just 8 months older than Mike and a year older than me, and her 2 children are more or less the same age as G and M. Her sudden death hit us both hard and left us reflecting on just how fragile life can be.

Not long after we heard the devastating news about Jenn, Mike voiced out loud that one thought that had been playing in the background for us both – who would be the third? His throwaway comment was that he hoped a celebrity death would count and there have certainly been enough of those over recent months to more than count as our third. Unbelievably however, it seemed destined that we would be hit by a third death much closer to home and on Maundy Thursday one of my cousins got in touch to tell me that my 99 year-old Gran had passed away quietly at home that evening. Whilst we weren’t expecting this news then, she had lived a long and full life with 5 children including my Dad, 10 grandchildren, more great-grandchildren than I’m confident to count and even the odd great-great-grandchild. I spoke to my Uncle the day after, who was able to share with me that she passed quickly and peacefully at home in her chair.

It comes as no real surprise that death was a topic of conversation that peppered our Easter holidays as both G and M expressed their thoughts, questions and feelings about it and as we all dealt with our grief as best we could. The children were not as affected by their Great-Gran’s death as they were by that of their Great-Uncle as she hasn’t been more that a name at the bottom of a birthday or Christmas card for a few years. They understood that, whilst they didn’t feel particularly sad, I was and gave hugs and kisses whenever they thought I needed them. Helping our children to cope with death and grief both in the immediate, but also as it revisits at the least expected times has been an incredible parenting challenge. Death is sadly very much a part of life that has to be faced and I hope that we have given G and M the life skills to deal with their grief and to empathise with others struggling with it.

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And I’m back!

You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Eyes on Diabetes

jdrf-t1dfootprint2016 has marked 2 significant milestones in my life, both of them linked by 1 common factor: Type 1 Diabetes. Back in February I celebrated my 39th birthday and my 30th diaversary, something I can never ignore as they fall on the same date, but this year has also marked 18 years of living with a complication of that disease, diabetic retinopathy. As a rebellious and angry teen, I never anticipated that the years of refusing to accept and manage the illness that set me apart from my peers would ultimately result in near complete loss of sight in my left eye. Of course I knew that the risks were there, but I didn’t fully understand that the problems could, and in my case would arise when I finally stepped up and took control once again, determined to make T1D only a bit player in the story of my life. I now have to live with a permanent reminder of just how damaging this illness can be.

For those who don’t know, diabetic retinopathy is caused when the fluctuations in blood glucose levels cause changes in the blood vessels in the retina. New blood vessels may grow on the retina to improve the blood supply there and in turn, these weaker vessels can swell and burst leading to a detached retina or, in some cases, complete loss of sight. If the symptoms of this complication are identified early enough, careful monitoring of the eye can help reduce the need for further treatment and the risks of the problem spreading further. stages-of-diabetic-retinopathyFor those with already well-developed retinopathy, laser eye treatment can be given to prevent those new vessels growing further and reduce the chance of new vessels growing too.

Regular diabetic eye screening should be done on an annual basis and can be carried out at your local optician as long as they have the facilities and expertise to do so.The screening tests are not invasive as they simply require photographs to be taken of the retina and a thorough examination of your eye. In my case, a regular eye examination at my opticians  picked up the signs of retinopathy in my left eye and I was immediately referred on to our local eye hospital for further assessment. What happened over the next few days is still shrouded in something of a blur as consultants were summoned, examinations carried out and advice sought from Diabetes UK as to what my next step should be. The laser treatment I needed to stop the progress of the rogue vessels was done and that really should be where my story ends with lessons learned and an altogether wiser individual moving forward into the exciting new challenges of career choices, married life and parenthood.

Unfortunately, I was not so lucky.

I had the misfortune of being treated by an over-zealous medic, who wanted to ensure that the retinopathy was stopped well and truly in its tracks and that no further intervention was required. Instead of treating the eye with the recommended number of burns, a huge amount more was administered leading to the partial detachment of my left retina and leaving me with less than 5% vision in my left eye. blurred-eyechartThe 18 years since that fateful day have been filled with twice yearly eye examinations at our local eye hospital, regular eye checks, cataract surgery, prism lenses to reduce double vision and the resulting headaches, and the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment. I am still able to drive, though my licence now has to be renewed every 3 years following a specific eye test to ensure that the loss of vision in my left eye won’t impact my ability to drive safely and I can still be independent in the things that I do. I have travelled, got married, had children and continue to build my career as an accountant and my eyesight hasn’t stopped me doing any of those things. My night vision is poor, my depth perception almost non-existent and my colour perception drives the rest of the family mad, but I am fortunate that I can still see.

I am one of the lucky ones in so many ways.

Back in 1991, the International Diabetes Federation (IDF) and World Health Organisation (WHO) created World Diabetes Day as a global opportunity to raise awareness of both types of Diabetes, the reality of living with this disease and the escalating health risks resulting from these conditions. That’s why I’m pleased that this year’s World Diabetes Day (#WDD2016), celebrated today on Sir Frederick Banting’s birthday, has taken “Eyes on Diabetes” as its theme, focusing on two key areas:

  • The importance of screening for early diagnosis of Type 2 diabetes; and
  • The treatment needed to reduce the risk of serious complications.

Statistics suggest that at least 25% of those diagnosed with both types of diabetes will suffer from diabetic retinopathy in their life, with some sources quoting figures as high as 90% of those who have been living with it for 20 years or more. These are statistics that can be reduced and I truly believe that education is key in making that difference. What I hadn’t understood was that a rapid improvement in blood glucose levels can lead to a worsening of retinopathy and my approach to improving my control should have been to do so gradually to ensure that my body had time to adapt. There are always lessons to be learned from the experiences of others and I just hope that my story can add to that education process.

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Rice Two-Ways

When we made the decision to go elemental in an attempt to bring about a reduction in M’s chronic symptoms, I never imagined that the reintroduction of foods would be as fraught and intensely stressful as it has proved to be. In the past 12 months we have made absolutely no progress whatsoever and everyone is stumped about what the root cause of M’s problems actually is, with opinions fluctuating between complications from his EC, “simple” multiple allergies or a physiological problem with his gut. Whilst the teams of medical professionals involved in M’s care try to decide on what direction they should follow next, I’m left stretching my ingenuity to its very limits when it comes to preparing meals for my understandably fed up 10-year-old.

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I’m constantly on the search for anything that will make my cooking life that tiny bit easier and a lot more interesting and love finding products that are both M-friendly and a little out of the ordinary. Like many of you I’ve eaten rice for years, but generally just as boiled rice to go with a tasty chilli con carne or egg fried from the local Chinese takeaway and had never really thought much about it. Since rice has become the staple carbohydrate of M’s diet, I’ve come to love the versatility of this ingredient and continue to be delighted by the many versions of it I’ve uncovered along the way. Rice milk, rice porridge flakes, rice cereal, rice flour, rice crackers, rice noodles, rice pasta, rice vinegar and your choice of plain rice: long grain, brown, basmati, wild or black have an overwhelming presence in my kitchen cupboards and so now do 2 rice-based products that I’ve discovered over the summer.

img_08441First are Blue Dragon Spring Roll Wrappers, which do contain a small amount of tapioca starch, but are predominantly made from rice flour. Having recently perfected my own version of lemon chicken to satisfy M’s longing for some much-missed Chinese food, these seemed like a great addition to the repertoire and I couldn’t wait to make both M and G some M-friendly pancake rolls for dinner. If you’ve never attempted to cook with these before, let me tell you that they are not the easiest ingredient to use, but I suspect that a lot more practice will make a big difference. I set up my workspace next to the kettle, filled a shallow baking dish with boiling water and then painstakingly soaked the wrappers, 1 sheet at a time, before filling them with some thinly sliced chicken, cucumber, apple and pear that I had already prepared. img_08461I cooked them in 2 different ways, interested to see which my discerning duo preferred and was very much surprised by the results when they came in. G loved the bigger roll which was just prepared as I described above, whilst M told me he’d opt for the shallow-fried triangles every time. I am thrilled that the wrappers were so well received by both children and can’t wait to see what else I can cook with them as I’m sure that they are versatile enough to be used to create some sweet treats as well as the more traditional savoury dishes.

img_11031The other is a real store cupboard essential and I can’t begin to tell you how excited I was to discover this item when I was perusing the virtual aisles of the fantastic online supermarket that is the FreeFromMarket. As for when the box of Clearspring Brown Rice Breadcrumbs arrived, nestled in the midst of my other purchases, well, Mike and the children were all summoned by my squeals of joy and then left me to my celebrations, shaking their heads sadly in complete disbelief. I am sure that there are so many ways to use the breadcrumbs in my cooking, but I started by preparing a breaded, stuffed chicken breast along the lines of a more traditional chicken kiev. I made a coconut oil and herb mix, which I carefully squeezed inside the cut I’d made in the chicken breast, before coating it liberally with the breadcrumbs. 25 minutes later and img_11091dinner was ready with a golden brown chicken breast tantalising the taste buds with both its look and its smell. They really were delicious and neither child was very willing to sacrifice a mouthful of their meal for Mum to taste-test herself. Now that the summer holidays are over and we’re heading into the autumn, roast dinners will make a more regular appearance in our household and I’m hoping to use these breadcrumbs to create an M-friendly stuffing for us all to enjoy.

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So, how is your leg now?

“Still broken!”

That question has been directed a lot at both M and me over the last couple of weeks and yes, I’m afraid that is the answer we’ve almost flippantly begun to give in reply. As we head into our 8th week of a left leg in plaster, the initial pain and shock that gradually gave way to the novelty of the cast has all but disappeared and we are now well and truly into the “fed-up of it all and ready to move on” stage of his recuperation. M has borne the last 8 weeks with the fortitude and strength of spirit that we have come to expect of our youngest. They haven’t been the easiest, but he continues to persevere at finding the best in any given situation and whilst there has been the inevitable tears of frustration and angst, there have also been moments full of laughter and jokes and M’s unparalleled sense of humour. IMG_0308[1]With hopefully only another 2 weeks or so to go until the leg might finally reappear from underneath the protective plaster, I thought it about time I give you all a proper update.

After 10 days in the plain white, full-length, backslab cast with squishy top, M was upgraded to a lightweight, rock-hard, full-length cast in camouflage just as he had decided on that very first night in our local A&E. Fortunately, the green camouflage plaster ran out after img_03921M’s leg was finished, rather than before, although that day’s orthopaedic technician did offer him the alternative of pink camouflage with sparkles whilst she was checking that stock levels were enough to cover his entire leg. 6 weeks later, and following regular fortnightly fracture clinic appointments with x-rays, the bone growth was considered enough to move M to a sarmiento cast – something we’d never heard of and instantly googled the moment it was first mentioned to us. This cast reaches up over M’s knee at the front, but below it at the back, enabling him to freely bend his leg without allowing it to twist. This is particularly important for M as he has a spiral fracture of his tibia, which needs time to fully heal correctly. Upon hearing his newest cast would need to be in place for at least 4 weeks,IMG_0479[1] M requested a “70s Disco” theme for reasons that will later become clear, and believe me when I say that the bright orange and neon yellow stripes with added silver glitter certainly meets his somewhat unusual brief.

From a medical viewpoint, the fracture is mending well and in the latest set of x-rays we could clearly see the new bone growth that has formed. The latest orthopaedic consultant was fantastic and not only explained what was going on, but pointed it all out on the x-ray for M and me to see too, which meant that we both had a clear understanding of what he was talking about. M’s GOSH consultant and dietician have raised a concern over M’s bone density and health given the severity of this break and his previously broken arm, and have requested that a DEXA scan is carried out at our local hospital to check that all is as it should be. We are very much aware that the delay in reaching a diagnosis, the initial concerns about malabsorption issues during his early years and the subsequent increasing restrictions to his diet could have compromised the levels of both calcium and vitamin D in his bones. Hopefully this scan will reveal the current situation and indicate what additional steps should now be followed to improve his bone health.

Unsurprisingly, the shock of the break on his body caused an unwelcome flare of his EGID at the most inconvenient of times and the combination of flare and his necessary immobility meant that we took some massive steps backwards in terms of his general and bowel health in those first few weeks following the accident. As a result of this, all food challenges have had to be put on hold for the foreseeable future until we can regain the status quo we had worked so hard to achieve in the last few months. Coming so soon after we had finally recovered from the challenges of his December GOSH admission, this has been something of a bitter pill to swallow for us all, but M remains upbeat about the situation and continues to plan his upcoming hit-list of possible food contenders with gusto. This relapse has reminded us of just how precarious the balance is when it comes to M’s health and just how easily he can be tipped into a downwards spiral.

Naturally, the hardest impact of a broken leg has been the inability to move around freely, which for my very active lad has been absolute torture. Progress has been slow, but M has worked hard at each level meaning that he is finally beginning to master the set of crutches he was given when his cast was changed to a sarmiento one. The first 2 or 3 weeks saw M use almost exclusively a wheelchair to get from place to place, something that was only possible thanks to the British Red Cross, who lend wheelchairs on a 6-week basis for a small voluntary donation. This is an invaluable service, especially as the hospital wasn’t able to give us one and it has made going to school so much easier than it might otherwise have been. We quickly introduced a walker – think miniature Zimmer frame – to him too and the ability to use his walker to travel short distances as well as climb up and down stairs was key to his discharge from our local hospital after the break. Once the initial anxiety about re-hurting his leg disappeared, M has adapted to his one-leg status remarkably well and can move at astonishing speeds both on his walker and shuffling along on his bottom when the occasion demands. IMG_0506[1]The crutches have taken longer to adjust to, not least because M now needs to start putting some weight on to his leg, something he has been very reluctant to do. We finally seem to be breaking through that last mental barrier as he builds his confidence by beginning to stand unaided, though his walker is always close on hand should he need it.

Poor M has been forced to miss out on a number of activities as a result of his leg, though whenever possible, we have worked hard to involve him as much as we can. The first and biggest disappointment was that he was unable to act in a touring stage production at a regional theatre, something he loves to do and had been looking forward to for weeks. However, never one to let life get him down for too long, M insisted on going to watch the play instead as some of his friends were also involved and the production company kindly arranged for him to meet some of the other cast members following the performance. He did spend a lot of time talking about what he should have been doing, but his love for the theatre and the strength of his friendships saw him enjoy the afternoon regardless.

He also had to cope with his school’s Health and Fitness Week, where lessons are more or less put on hold whilst a number of visiting instructors as well as the staff introduce each class to a number of new sports activities. M was nominated “class photographer” and enjoyed spending his time cheering his friends on as well as capturing the week on film. His favourite activity turned out to be wheelchair basketball, booked months before but ironically apt for him and he has expressed an interest to training with the wheelchair basketball squad – once his leg is better! The end of that week culminated with school sports day and sadly, despite refusing to let his tube stop him participating last year, M’s leg made it impossible this. However, his fantastic school made sure he didn’t feel left out and he took charge of ringing the bell between events as well as announcing the scores throughout the morning. I am so grateful yet again that we have such an amazing school that has supported us all through the ups and downs of M’s 3 years with them. IMG_0439[1]He has not missed a single day of school due to his broken leg, other than for necessary appointments and that is due to the willingness of the Headteacher and his teaching team to accommodate M’s needs in a safe way and involve him in the classroom as best they can.

Nor has being confined to a wheelchair stopped M’s extra-curricular activities, even if it might have limited them somewhat. He has continued with his weekly cello lessons at school, again thanks to a fantastic music teacher who has worked around his worries and allowed him to either play his cello or hone his oral skills as he has chosen. We experimented at home until we found the most comfortable position for him to be in to practice his instrument and he has been encouraged to take part in the school music concert in a couple of weeks time. As for the “70s disco” theme plaster, this specific request is because he, G and the rest of their IMG_0499[1]Stagecoach school are performing a 70s tribute routine in a local carnival parade in the middle of June. He has once again been to every Stagecoach session this term, and so have I, and knows both the songs and the dance routine by heart, even though dancing it has been an impossibility. There is every chance that his cast may actually be off his leg by the time the parade happens, but we wanted to show wiling and be prepared “just in case”. Given the length of the parade route, M will unfortunately still be restricted to his wheelchair as his leg won’t be strong enough to walk its length, but we have some other suitably funky 70s ideas in mind to pimp both his costume and his wheelchair to fit the party vibe!

NEAW 2016 – All over for another year

With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

NEAW 2016 – I am an EGID Mum

Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

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This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

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Do you know LimbO?

IMG_0391[1]You might think that the possibility that a full leg cast would prevent regular bathing would bring joy to the heart of any small boy and, as far as my 10 year-old is concerned, you wouldn’t be far wrong. He spent the first night back at home pouring over the “How to look after your cast” leaflet that had been given to us on discharge and, having inwardly digested all the salient facts, made his opinions on the matter quite clear:

Mummy, it says right here that you absolutely must not get the cast wet, so I’m just not going to be able to have a bath or a shower until it comes off!”

before leaning back with a satisfied look on his face. I swiftly pointed out that, given his leg could be encased in plaster for anywhere up to 12 weeks all told, he would soon become very stinky, which caused many giggles before his face got serious once again and he reiterated that the instructions on the leaflet simply had to be followed:

They say I can’t get it wet and how exactly am I going to wash without getting my cast wet?”

Well, you wouldn't want to ruin this rather spectacular cast by *just* having a bath, would you?!

Well, you wouldn’t want to ruin this rather spectacular cast by *just* having a bath, would you?!

I’m not sure if he thought it likely that this Mummy was going to agree to spending 12 weeks in close proximity to a child living in a bath-free zone, especially given we’re currently sharing my bed whilst Mike has been banished to G’s room and G has taken up residence in M’s cabin bed; but I quickly disillusioned him and put him straight. Fortunately, or I suppose unfortunately if you look at it from M’s point of view, there is a fantastic product which solves that very problem for all those clean-freak mothers out there, the LimbO.

Six years ago when we experienced our first broken appendage with M – left arm with 2 breaks to the elbow and 2 to the wrist – we puzzled over how to keep his arm dry when near water. It was not so much that he couldn’t keep his left arm out of the bath water, but more that I doubted my active 4 year-old would remember to do so, let alone the problems of a hot summer and the desire to keep cool by running through the garden sprinklers. I can’t quite remember who it was who first told us about the LimbO, although I’m certain that it wasn’t the hospital, something which hasn’t changed in the time between our broken bones experiences. To put it simply, the LimbO is a little like a plastic bag – made from a thickened and durable plastic, which is latex-free, and with a tight-fitting neoprene seal that means the cover completely encases the cast and protects it from water. IMG_0409[1]What is even better is that the seal means that air is trapped around the leg and it becomes self-supporting, effectively allowing the leg to float in the water without any effort on the part of the child. That was the bit the M liked best!

You can order LimbO products via their website and the step-by-step process ensures that you buy the size that will best fit the person who needs it. I was impressed with the speed of delivery too as M’s full leg protector arrived within 48hours of ordering it, meaning that his normal bath-time routine could quickly be resumed. I do wish I had spent a little more time perusing the site as I noticed after processing my order that they now also sell a range of other products designed to make having a cast that little bit easier. From outdoor weather protectors to toe cozys and Sealskinz outdoor socks, there really is something to protect the cast in every possible situation.

I don’t know why there isn’t more information readily available about this fantastic product through A&E, fracture clinics and hospitals because it is, to be frank, a complete life-saver. Anything that makes the challenges of coping with broken bones even a little bit easier is invaluable and this is one product that is definitely worth the investment.

Mark: 10/10 from us both – though M gave bonus points for the fact his leg floated when in it!

Why we should value our NHS

nhs-logoIf you live in the UK, you can’t help but be aware of the current problems faced by the NHS. The continuing debate over contracts for junior doctors has led to 4 strikes in the last 4 months, though the discussion has been raging for much longer, and there are more strikes on the cards if the issues can’t be resolved. Theses issues have been well-documented in the national press and I’ve no doubt that those of us who depend on a very regular basis on the healthcare provided by the NHS have our own opinions about these strikes, especially if we know, or indeed are, one of the 25,000 cancelled operations that have resulted from their action. Whatever your thoughts about these strikes – and believe me when I say that I’ve heard a huge cross-section of opinions from friends and acquaintances – it is impossible to ignore the underlying truth that the NHS is struggling and its future doesn’t necessarily look all that rosy.

Over the last 5 years, our experiences of the NHS have ranged from the outstandingly good to the outrageously awful. We continue to have a very reluctant relationship with our local hospital, who has unquestionably failed M at almost every step of the way and it is only our belief that local support and care is tantamount to his continued health and well-being as well as our peace of mind that has kept us in the battle for a shared care relationship between our local and GOSH. Likewise, whilst we are extremely grateful to M’s GOSH consultant and dietician, who not only gave us that elusive diagnosis 3 years ago, but who continue to advise, support and care for him with the honesty that we requested, the disastrous outcomes of our last admission have tested that “doctor – patient’s parent” relationship to its limits. We have accepted that they don’t have all the answers, nor access to that much longed-for magic wand, but we will keep going back because we have absolute confidence that M’s medical team, at least, will carry on striving to do their best for our medically complex challenge of a child.

Yet, despite all the lows, the high points mean that I can see there is something truly wonderful to be valued about our NHS. I see it in the regular phone-conversations that happen between M’s dietician and me, so that she can keep an eye on what’s going on from a food point of view and monitor how well he’s managing with drinking his E028 now that the NG-tube is gone. I see it when she takes her concerns to M’s consultant and talks them through and agrees a way forward, so that we don’t have to wait months for our next trek to London for an appointment before we act on the problems we’re experiencing now. I saw it in the care given to both M and me during his admission, when the nurses made sure that his best interests were met as far as possible and offered cups of tea when they were otherwise powerless to help. value-620-320I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.

And I see it at the local level that for most of us is our main contact with the NHS. Not the senior consultants, junior doctors and hospital staff dealing with the chronically ill, but through the GPs surgeries and the doctors, nurses and other staff that work there. I know that we are incredibly lucky with the local medical centre that’s found in our small village and for as long as we have been a part of it, they have gone above and beyond so many times to make things easier and get answers and help whenever we’ve needed it. Recently, I hit an unexpected stumbling block in ordering the E028 formula needed to keep M going, one that had been caused by a lack of communication between the feeding team at our local hospital and just about everyone else. A feeding team nurse had contacted GOSH to confirm whether M still needed regular tube changes and, on being told that he no longer had his tube, she cancelled the monthly orders with the feeding company. Nothing wrong there you may think and I’d agree, except she didn’t advise us that she’d cancelled it, nor did she tell our GP that it was now their responsibility to sort out his monthly prescriptions.

may-arrows-on-a-wooden-post-and-a-white-sign-for-writing-a-message-D6WY0KThanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.

That is caring for the patient at its absolute best and that’s why we should value our NHS; for all those staff who get little thanks but make a big difference – or certainly did for this harassed Mum!

Reflections of an admission

strictly-craig

“I think we can all agree that this admission has been a complete disaster”

Mike and I could have been forgiven for expecting to see Craig Revel Horwood in the room, but in fact those were the opening words of M’s consultant at our meeting on day 13 of his admission. A meeting attended by on-call gastro consultants, ward registrars, dietician, nurses and the gastro psychologist and where not one of them disagreed. When those are the words you hear uttered by one of the senior gastro consultants at Great Ormond Street Hospital, you know that things have gone really badly wrong. To say that Mike and I were surprised to hear them offered as the opening gambit is an understatement: we had gone into this meeting prepared for battle, expecting to have to defend our opinion that M’s current deterioration was due to the food challenges, that same discussion I’d been having for the previous 10 days with that same multitude of medics, and without warning they appeared to have come round to our way of thinking.

Since M’s discharge, lots of people have asked about the admission and what happened whilst we were in London. The plan for the original 2-week admission was to trial 4 foods whilst we were there – potato and egg, which we hadn’t done at home – and banana and salmon, which we had, but he had failed previously. The original expectations as discussed and agreed with both his consultant and dietician were that he’d start to show a reaction within 48 hours of starting each food and so the admission was to look like this: 3 days observation to understand his “normal”, 8 days of food challenges – a new food every 2 days whilst continuing with the previous ones – and then 3 days to assess before sending him home. This approach of challenging with 4 foods in 10 days was ambitious to say the least and left no wriggle room for recovery if he failed at any point. Given we are used to spending at least 5 days slowly introducing a new food to M and then expect to take a week, if not longer, to get back to normal, it quickly becomes evident why things didn’t go according to plan.

3 days observation – these happened, but they hadn’t allowed for just how upset M would be by the short-notice of his admission. As I had packed our case having picked him up from school, I could hear him sobbing in the other room and discovered him lying on G’s bed, wrapped in her arms as he cried about missing her birthday and being away from home in the lead up to Christmas. This traumatised him so much that, as for so many people even without gastro issues, his tummy/bowels/digestion were upset and didn’t behave as the “normal” we’d got used to over the last 12 months. This was to later prove a problem as the ward doctors insisted he was constipated on admission and struggled to accept that these new foods were in fact the issue.

8 days of food challenges – we started with potato at a speed and quantity that I just couldn’t comprehend. There was no go-slow and gently increasing his intake here, instead he was allowed to eat “as much as he wants” and after 2 years without potato,12309588_10153139593761123_4933720941134322006_o believe me he went at it with gusto, even eating 6 roast potatoes at one sitting. Within the first 24 hours he started to show reactions to the potato  – severe reflux, tummy aches, a constant need to wee and he started to soil again, something he really struggled with on an emotional level. The ward doctors refused to believe he could be reacting so quickly and their repeated mantra to me soon became “it’ll take 4-6 weeks for him to show a reaction” and “he just needs to push through this“. As each food was introduced, things got worse and worse as he was now completely incontinent, a position we hadn’t found ourselves in for a year. All the signs of his bowel starting to shut down were there as he was weeing for Britain, his appetite was dropping off and his energy levels started to wane and I kept saying that these indicated he was failing the foods, only to be told that it wasn’t possible. They were palpating his tummy twice a day and insistent it felt fine and every conversation ended with “it’ll take 4-6 weeks..yada yada yada…” – by now you get the picture! By day 8, they finally agreed to x-ray and, lo and behold, he was chronically impacted. This x-ray was apparently one of the clearest they’ve ever seen showing it – solid black throughout his colon due to the blockage.

Then came the heated discussions about why this had happened. They were insistent that he must have come into hospital constipated, though how a child who goes every day can be constipated they’ve still to satisfactorily explain to me, and I was equally insistent that he wasn’t. We ended up agreeing to disagree as neither of us could prove it either way, though it has now been noted that should M be admitted again, they will x-ray at the start of the process to make sure we all know the state of his bowel.

3 days assess/discharge11018900_932190456872138_8699359326763992708_obecame 6 days of powerful bowel prep continuously via M’s NG-tube plus additional senna for the last 3 of those as things simply weren’t shifting as hoped. I have honestly never seen him so ill as he was by the end of that week – bent double from the cramps, crying, refusing to move from bed or engage with anyone, lethargic and rating his pain at an 11 or 12. Throughout this time he was expected to continue all 4 foods, just in case his obvious bowel reactions were actually nothing to do with the challenges and they had introduced a daily dose of senna to keep things moving, something we hadn’t needed at all during the 12-months being tube-fed.

We finally came home after a further 5 days of “recovery” time in hospital and decided to stop banana and salmon straight away as well as the daily laxative. Things slowly started to improve and we made the decision to allow him to have egg and potato in small amounts for a few more days over Christmas. However, since the 27th we’ve stopped those too and gone back to just his 5 safe foods – and he has recovered amazingly. No tummy aches or pains, as much energy as we’re used to, back to regularly using the toilet with no issues and much, much happier in himself. The medics would no doubt argue that it’s difficult to pinpoint when things started going wrong, but to me it seems obvious: the introduction of these 4 foods is undoubtedly the root cause of his bowel problems in GOSH.

That’s the truth behind our December admission and yet to many I’ve no doubt it will seem that it all went incredibly well. You see, the one thing that was achieved during our stay was that M’s NG-tube was removed and my little superstar has proved us all wrong by accepting the challenge of drinking his feed head-on and is drinking a much-reduced volume on a daily basis.IMG_0067 M’s consultant was very determined to get the NG-tube out and at times it felt to us that it was her sole focus for the duration of the admission, which was difficult to cope with when we were needing and hoping for so much more. Achieving that has been amazing, but he hasn’t suddenly started eating a “normal” diet, in fact he’s exactly where he was before we went in, and the need for the elemental feed (E028) is still very much there. The flip-side of losing the tube is that M’s EGID, multiple food allergies and limited diet whilst not diminishing in any respect, have once again become hidden, a set of invisible illnesses, and we have all had to adapt our expectations by keeping that knowledge firmly in the front of our minds. That single small step forward simply does not cancel out the many massive steps backwards that happened whilst we were in hospital and doesn’t acknowledge the harsh reality that very little else in his life has actually changed.