Tag Archives: T1D

Reaching out

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I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

reach-out

My One Constant Companion

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HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

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My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world…
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

The Bionic Woman

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For the last 6 days Mike has taken to calling me the “bionic woman”. Needless to say, I have not recently had a skydiving accident which has led to bionic modifications to my broken body resulting in amplified hearing, a right arm with the strength of 10 men and the ability to run at speeds over 60mph; in fact, there has been no incident of note and my 1 broken body part, my pancreas, remains well and truly broken. Rather there has been a conscious decision on my part to finally fully embrace a relatively new technological development that I hope will make a significant difference to my diabetes care.

I first became aware of this new bit of kit through M’s school friend, F and his fantastic parents, L and I. I can’t remember quite how we got onto the subject, but I’m reasonably certain that it had something to do with school Sports Day, the challenge of T1D vs. the active child and watching L check his blood sugars simply by waving a black box over his arm. To be fair, M had been wittering on telling me for quite some while about the “white, circular sensor-thingy” attached to F’s arm that enabled him to test his blood glucose levels (BGLs), but the lack of clarity in his description combined with my own lack of relevant knowledge meant that I had absolutely no idea what M was talking about and had dismissed the subject without really giving it a second thought. However, my interest was piqued through that chance encounter on the school field and it led to the opportunity for an enlightening conversation about what this thing was.

The Freestyle Libre (FSL) is marketed as a “flash glucose monitoring system” with a tagline of:

FL

and I was intrigued enough by this to want to find out more and discover whether this might be for me, or not. I read their website, researched on-line for users’ reviews, joined the FB forum for FSL users and wondered if it was too good to be true. I’ll be honest, when I first looked into whether it would be a benefit to me and my T1D care, I loved how easy it appeared to be and, having spoken at length to L and I on more than 1 occasion, could see just how revolutionary it could be, especially for children with T1D.IMG_0131[1] But, and believe me when I say it was quite a big “but”, the sticking point sadly was the price. This type of technology is not available to anyone through the NHS as yet and funding the sensors alone would cost in the region of £100 a month. I know that you cannot put a price on good health, but as a Mum to 2 children with multiple food allergies and an already increased monthly bill due to the high costs of free from food, the challenge of finding that extra £100 each month (£125 extra earned pre-tax) felt quite daunting and I shelved any thoughts of such an investment for the time being.

However, even though the price was making me think twice, I was reluctant to dismiss the option out-of-hand and, given the lengthy UK waiting list, decided to add my name and wait to see what happened in the meantime. The daily events of life with M and G quickly overtook everything else and the FSL soon dropped far down my list of priorities, though it was never far from my thoughts. I’m not exaggerating when I say months passed, but at long last, in January 2016, I saw the message I’d been waiting for: the news that monitors and sensors were once again readily available in the UK and I decided to bite the bullet and order a starter pack to finally see if the FSL’s claims were all true.

IMG_0135[1]The concept is a simple one and reassuringly easy to use. You insert a small sensor with a thin, 5mm needle into the back of your arm and, although the initial instructions for applying it appear quite complex, it really was quick and easy to do. I didn’t find it painful at all and whilst it takes some time to get used to the constant presence of this sensor on my arm, I’ve had no problems with it. The sensor measures what is called the interstitial fluid glucose levels, which are not identical to BGLs as this is the fluid found between the cells, but are considered accurate enough for monitoring what is going on. To find out your BGL, you simply wave the scanner over your arm and it gives you the result almost instantaneously. IMG_0129[1]The sensor continually reads the changes in the glucose levels and, as long as you scan at least once every 8 hours, the easy-to-read graphs given on the screen indicate what has happened during the times you didn’t test. As with most CGM systems (Continuous Glucose Monitoring), it is recommended that the FSL user occasionally uses a standard glucose monitor to test their blood sugars and check that reading to the one given by the FSL – my tests have shown a difference of less than 0.3 mmol, which is incredible.

I can’t begin to tell you how impressed I am with this small device. It really was easy to understand how to use it and the whole family – Mike, G, M and even my Mum – have taken their turn in testing my BGLs for me. Everyday I sit with the scanner amongst the rest of my accountancy paraphernalia in front of me on my desk IMG_0128[1]and am able to discreetly test whenever I want or feel the need. The amount of information available is vast and you can look at enough graphs, bar charts and log books to satisfy even the biggest techno-geek. It has become strangely addictive to do and has already started to give me an even greater understanding of what my T1D is doing than I’ve ever had before. The non-invasive nature of the testing means that it would be easy for a parent to do during the night with no fear of disturbing their child’s sleep, and similarly for Mike to do if he ever feels that my blood sugars are dropping overnight – no need to wake me to ask me if I’m going hypo and then having to survive the often stroppy response his concerns are rewarded with, whether they are or not – yes I am precious about my sleep! I also have no doubt that it would appeal to every tech-savvy under-18 out there, which would no doubt reduce the chances of non-compliance and teen rebellion that so many young T1Ds experience,IMG_0130[1] thereby similarly reducing the risk of complications from poor control. I really can’t speak highly enough of my experience so far with the Freestyle Libre and wouldn’t hesitate to recommend it to every T1D out there. It has been a struggle to find a down-side other than the price, which is due to the £50 sensors needing to be replaced every 14 days. My personal solution to that is to fund 1 sensor a month for the time being, or at least until the point I finally win that elusive lottery jackpot!

 

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United we stand

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Yes, you guessed it, today is:

U for Unite-page0001

and signifies perhaps the hardest challenge we’ve taken on for EGID awareness week, ever. This week Mike and I are standing in solidarity with M and with all those other brave souls out there who have to battle with EGID every day and have no chance to opt out when things get tough. For the past 2 years, I’ve documented how we’ve followed M’s diet for the week, restricting our diets as he has to restrict his and even drinking the occasional glass of Neocate Active to get a glimpse into that aspect of his life.

IMG_0940When we first started planning our activities for this year’s awareness week, I briefly considered eating like M again, but dismissed it, thinking that the limitations of 3 ingredients and a litre of E028 on a daily basis might just prove to be too much for both Mike and me.  However, fast forward a few weeks to my preparations for my newspaper interview and I revisited the idea of “eating like M” and wondered if actually this might be something we could achieve.  I chatted it over with Mike, debated whether we could do it and, both being keen to give it a go, decided this would be our diet for the week.  Each day will be filled with 3 meals of rice, chicken and cucumber prepared in a variety of ways and Mike will even be drinking the litre of E028.  I have undertaken this with careful consideration of my own T1D and will be keeping an even tighter eye on my blood sugar management to make sure that I stay fit and healthy during the week.  I have also opted out of the E028, but will be partaking in a pint of Neocate Active everyday to show willing.

We’re not on our own either as there are other parents, family members and friends who will be spending some or all of this week eating like their loved ones. Trust me, it’s not an easy decision to make, but is a great way to raise awareness and get conversations started, which is reason enough to stick to it for a week. I am filled with admiration for just how well M has coped with such a bland diet for so long and have been struck with the harsh reality of how much pain he must have been in for years to be able to cope with these limitations just because it’s helping him feel better. Three_Musketeers_SwordsSo tomorrow when you’re tucking into your bowl of honey nut corn flakes or a bacon roll for breakfast, or sitting with your feet up dunking a chocolate biscuit into your cup of tea, or perhaps even enjoying a plate of fish and chips for tea, spare a thought for M and the others like him who are eating a restricted diet right now or may not be able to eat anything at all.  This week it really is a case of “All for one and one for all“.

#Changes – Diabetes Blog week 2015

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Sadly this week, time just hasn’t stretched enough to allow a blog a day for Diabetes Blog week 2015. The scant 24 hours in the average day mean that I barely have enough time for everything I normally need to do, and this week in particular has been manic as the excitement revs up for next week’s #NationalEosinophilAwarenessWeek.  I have grabbed 5 minutes here and there during coffee breaks and lunch-times to read what other dia-bloggers have had to say on the subjects of “Keeping it to yourself” and “Cleaning it out” and I’d heartily recommend a visit to Bittersweetdiabetes to peruse these thoughts for yourself as they really are worth a read.  However, today’s topic of #Changes struck a chord, not least because we’re about to embark on our own battle to change the awareness of another invisible illness, EGID and I wanted to blog my thoughts today.

Courtesy of youmatterlifeline.tumblr.com

Courtesy of youmatterlifeline.tumblr.com

The past 3 decades of life with T1D have seen a metamorphosis in my attitude to it:  I coped at the start; rebelled in my teens; became resigned to it during my 20s and in my 30s I have learned to embrace the lessons it has taught me and have relegated any other emotions to the back of the metaphorical cupboard of my mind.  As the next decade of my life comes ever closer, I’ve no doubt that attitudes will continue to change and that is something I look forward to embracing in a way that I now find myself able to do like never before.  The daily blood tests and injections are second nature to me and it’s not until I feel the curious gaze of strangers as I push the syringe needle into my leg/arm/tummy* (*delete as appropriate) during a coffee break with G at Costa or dinner out with the family, that I’m reminded that it probably isn’t a sight that most people see on a daily basis.  It has become, by necessity, an integral part of me and I am as oblivious to it as I now am to the tube that is stuck to the side of M’s face.

T1D is my partner for life and I’m okay with that.  All of the dramas and rollercoaster emotions I have experienced along the way have given me the huge advantage of immense insight and understanding of the frustrations of my own pair of mini superheroes, M and G.  When M has been sobbing on the floor because of a profound sense of despair and a feeling of hopelessness, I can honestly tell him that I know how it feels because I’ve been there and battled those demons myself.  I can empathise with G’s struggles with her own restricted diet and the temptation to cheat because I’ve done it and ended up in hospital as a result. I know that sense of isolation that overwhelms because it seems as if there’s nobody else nearby who’s going through what I’m going through in the here and now, and I know that however dark it might feel right now, there really is light at the end of that very long tunnel.

My parents were huge advocates for research into Juvenile diabetes and were involved for years in fund-raising, awareness events and medical research into T1D. A few months ago, I was talking to the Dad of M’s friend F, who has T1D, on the subject of the current developments being made in diabetes research and the search for a cure.  I am genuinely excited about the prospects of a major break-through that might see a more permanent cure becoming available, but found myself honestly admitting that, whilst I am excited for what that would mean for F, for J (another T1D friend of M’s) and for Pumplette, I am no longer concerned about the implications for me.  My focus has shifted and I have a new battle to fight – as an advocate for my son and his challenging life with EGID.  That, I believe, is the change of becoming a parent and just as my own parents worked tirelessly to support me through life with T1D, I found I have learned well from them and am hopefully just as dedicated to supporting M and G as they find their feet in the world of chronic illness.

Courtesy of ec.europa.eu

Courtesy of ec.europa.eu

That’s my change, but there is another change that I feel is very much worth fighting for: a change to the understanding of T1D which is so sadly lacking in the public eye.  Mike is well-used to hearing me shout in outrage at the television or radio whenever some well-meaning, but inadequately informed journalist or personality talks broad-brushstroke about “diabetes” and dumps those of us living with the epic failure of our pancreas to do the job it was designed to do in the same boat as those who have made lifestyle choices that have led to T2D.  Both are difficult to live with, of that there is no doubt, but the lack of clarity about the differences between the 2 conditions can be devastating for all concerned.

I did not choose to live my life accompanied by T1D, just as my parents did not choose for me to become so ill that living past my 9th birthday looked touch and go for a few dark hours all those years ago.  There are choices about my T1D management that I would change with the benefit of hindsight and I would rather have not even had to make those decisions, not just in the first place, but ever; and yet T1D arrived uninvited on our doorstep and we had no choice but to accept it, learn to tame it and eventually become comfortable with its presence in my life.  There is no reason, in this day and age, for there still to be so little understanding of the differences between the 2 types, nor so little regard for how this lack of distinction can impact young lives.  It is only when real change happens, when education improves so profoundly that there is proper understanding about what T1D is and why it happens, that those of us with it can sit back and breathe a little, knowing that that’s one less battle to be fought and that we can expend our energy on the important things in life, like continually working on preserving the best health we can, both physically and mentally.

Courtesy of annaraeburn.com

Courtesy of annaraeburn.com

Even more importantly for me, such a massive turnaround in the portrayal of diabetes in the media will signal a promise for things to improve for M too.  After all, if this is the state of affairs for a well-known condition such as T1D, then what hope is there for those of us battling to promote better understanding of the unknown ones such as EGID?

#ICan – Diabetes Blog week

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This week is Diabetes Blog Week and a chance to take some time out from the unending whirlwind that is life with M and instead focus my attention on the story that is my very own journey with T1D.  Today’s title is #ICan and, taking inspiration from lifelong friend and fellow blogger, The Understudy Pancreas, I thought I’d take a quick look at some of the #ICan moments from the past 29 years:

  • teenSurvived the trauma of teenage rebellion (and my parents did too!) against my T1D, even though I suspect my parents wondered if the end was ever going to be in sight; and have learned that that experience has now given me a unique perspective on how M feels about his own chronic illness;
  • uniDidn’t think twice about going away to University and learned that I could manage on my own, though there might have been a few lessons along the way about managing things well;
  • Travelled abroad with school and university several times and not only survived to tell the tale, but thoroughly enjoyed every moment spent with good friends and experiencing new cultures, blissfully ignorant of any worries that my parents and teachers undoubtedly had;travel2
  • Continued that travelling in my 20s and 30s, accompanied by ample supplies of insulin, needles and blood-testing equipment and the requisite letter from my GP stating why I needed to carry all this kit.  Mike and I have been lucky to be able to visit China, Hong Kong, Thailand and Australia as well as Canada, USA and throughout Europe. I’ve walked along part of the Great Wall, seen Shakespeare at the Sydney Opera House and walked behind Niagara Falls, and my T1D hasn’t stopped me doing any of them;
  • pictures-july-06-009Had 2 successful pregnancies and brought 2 gorgeous children into the world, having found that giving them the best start I could was all the motivation needed to have tight control of my T1D during those critical 9 months;
  • Do anything I set my mind to – with the small exceptions of flying an airplane or donating blood as my T1D makes me persona non grata as far as those things are concerned;
  • Survive whatever life throws me – believe me there’s been a lot – and, what’s more, survive it with a smile on my face and a steadfast determination to keep going along the path I’m following.

And the most important thing of all: that T1D does not define who I am, though it has unquestionably shaped my attitude and approach to life.  This is something that I hope I’ve instilled in both G and M and #ICan and I will continue to show them, as best I’m able, that chronic illness is only a very tiny part of the amazing people they are growing up to be.

Working hard to keep the magic alive

Working hard to keep the magic alive

You can read more from other T1D bloggers around the world, including:

The Understudy Pancreas:  “Diabetes Blog Week 2015 – Day 1 #ICan“

Diabetogenic: “I think I can, I think I can, I think I can“

six until me: “Diabetes Blog Week: I can.“

Type ONEderful: “2015 Diabetes blog week Day 1 – I can“

E028 – the success story

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When we started this new chapter in M’s life 10 weeks ago, we approached it with the attitude of “hope for the best, but prepare for the worst”.  We hoped that the move to an elemental diet, consisting of 1500mls of E028 each day, would bring some much-needed relief to his bowel and body and that, from that recuperation would come a way forward that would improve M’s quality of life.  And whilst we were well prepared that there was a chance it might not work; that it might not bring the recovery M desperately needed and that we might have to look to even more extreme measures to reach our end goal of improved health; that wasn’t a prospect we were prepared to spend too much time on, yet.  It was far more important to be positive about the route we had chosen, which wasn’t an easy choice to make and had its challenges from the start: be they passing the NG-tube at GOSH or figuring out our new routine at home.

Courtesy of nameonline.net

Courtesy of nameonline.net

Despite the roadblocks thrown in our path, we’ve kept plodding on, negotiating our way skilfully around the inevitable melt-downs, tantrums and even those tempers that lead to a tube being pulled out accidentally.  We’ve all learned valuable lessons – don’t storm off in a temper following a sibling argument leaving your pump behind being a key one for M – and we’ve survived as a family and, dare I say it, grown stronger as one too.  We have laughed, cried and got angry together.  We’ve used that laughter to overcome the depths of despair and we’ve focussed on the important things in life.  Mike and I have long been a team, since the disastrous surgery on my left eye for diabetic retinopathy 17 years ago just weeks after Mike had moved to the UK and before we were even married.  We may not always see eye to eye, but we have grown together and take turns in being the strong one when the other is feeling weighed down by the world.  Now we have 2 children who are learning those same lessons and this experience has shown me just how amazingly strong our children are. They’ve coped with all that life has thrown at them and whilst they may have been knocked down occasionally, they’ve learned to pick themselves up, to brush themselves off and to keep going along their paths. The last 10 weeks have seen them grow in their empathy for others and they too have taken turns in being the strong one when faced with adversity.

Courtesy of artiwards.com

Courtesy of artiwards.com

The best news of all is that we now know that every exhausted step has been worth it and I’m thrilled to be able to share that, for M, the E028 has been his success story.  Within days of the switch to a food-free diet, the near constant diarrhoea that has been the bane of the last 9 years of our lives stopped.  Just like that. No magic potions, no magic wands, no tricks and, so far, no looking back.  M has become the fun-loving, caring, well-behaved little boy we all knew was hiding somewhere within himself.  His joie de vivre has returned and his humorous outlook on life is much more evident.   As each day passes, we are slowly and surely making more and more progress and his confidence has grown as evidenced by his abandonment of his daytime reliance on pull-ups for the first time in a year.  It’s not been a perfect cure by any stretch of the imagination and his weight is once again giving us, and the medics, cause for concern, but it’s a massive step, a giant leap in the right direction.  We are lucky that this proved to be the way forward for M and we are truly grateful for that as we know so many other families who have not found it to be the answer to their health problems and are still battling on.

Meanwhile, the next step is the big one for us: food reintroduction.  We need to work on getting food back into M’s diet without upsetting this balance that he has found right now.  There’s a “sort-of” plan from the dietitians about how we go about trialling each food with M, but for the most part it’s going to be driven by us.  Having finally got my lad to the point where “I feel better Mummy, my tummy’s less grumbly and I just feel…well…feel so much better in myself“, I refuse to be hurried and I’m going to protect this new sense of well-being with all my strength and determination.

 

Our first lesson in Elemental feeding

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Courtesy of shutterstock.com

Courtesy of shutterstock.com

The last 11 years have been filled with one parenthood-survival lesson after another and it has to be said that the majority of those can be attributed to M.  I’ve now honed my parenting techniques to become, not just referee, cheer-leader, taxi-driver and chief bottle-washer, but also self-made expert in rare gastro conditions, skilled negotiator with both small children and medical professionals alike and ardent advocate for (my) children’s rights.  Our latest, and steepest, learning curve carries an uncanny echo of the challenges my own parents had to conquer nearly 30 years ago when faced with the diagnosis of my Type 1 Diabetes (T1D).  They had to learn fast all about blood sugar monitoring, counting carbohydrates and, perhaps most daunting of all, how to give insulin injections.  There could be no question of whether they felt comfortable in doing these things because they knew that their new role in my life was not just as parents, but as the front-line defenders of my everyday health.  I have hazy memories of learning to inject on an orange and know that those oranges were subject to the first faltering attempts of my whole family.

Courtesy of soteriapublishinghouse.com

Courtesy of soteriapublishinghouse.com

We’ve had to learn how to feed our child via NG-tube, a process known as enteral feeding and similarly there’s be no time to stop and question whether we were ready, willing and able to do this because M’s health demanded it of us.  Each step is not particularly complicated in itself, but the anxiety of remembering what we had to do and when was overwhelming in the first couple of weeks and I was scared of getting it wrong.  Due to a desperate need for M’s bed in the long-term gastro ward at GOSH, I had no choice but to learn as much as I could as fast as I could, so as not to be left struggling once we were back in our own home.  We have the support of an excellent nursing team from Nutricia, the company who provide M’s pump, feed and medical supplies, but that’s it.  Mike and I have quickly had to become experts in this new part of M’s journey and the extraordinary has now morphed into the routine.

For those of you who have never had to do enteral feeding, or who are learning about it for the very first time, my next couple of blog posts will cover the process in a “step-by-step” approach, which will hopefully give some useful tips on managing tube feeding.  I would also highly recommend reading this blog post by fellow blogger, MumAnnie123 – it was my “go-to” article when we were incarcerated at GOSH and gave me lots of tips and advice about maintaining my sanity as we ride the NG-tube feeding roller-coaster.  The one thing I’ve quickly learned is that everyone will have a slightly different approach, be they parents or medical staff, so make sure you follow the basic rules, adopt recommendations that meet your family’s needs and adapt to a routine that suits you and your child the best.  At the end of the day, you are the people living with the elemental feeding and need to have a system that works for you – alter the feeding routine to work with and around your life at home.

20150203_082342Following a timetable that is hugely reminiscent of our days with a baby, each day actually begins the night before, when I have to make up the bottles of M’s feed alongside the preparation of G’s packed lunch for the next day.  Each evening as I boil the kettle, I gather everything needed to make his feed – packets of the Elemental E028 powder, scoops (1 blue, 1 yellow), a 1 litre plastic measuring jug, hand whisk and 2 sterile packs containing the 500mls and 1000mls plastic feeding containers, also more glamorously named “reservoirs”.

We have a detailed “recipe” for M’s E028 feeds, which was calculated by the GOSH dietetics team to provide the calories and nutrients he requires daily based on his age, height and weight and I carefully measure the required scoops of the formula into the measuring jug.  Next comes adding the boiled water, which was surprisingly trickier than it sounds as Mike and I both made mistakes on our first weekend at home.  What hadn’t been made clear to us in the hospital was that the water added is enough to make the required amount , in M’s case 550mls, and NOT, as we both first read it, add 550mls of water to the mix.  Whilst this sounds a fairly inconsequential error, the nuance was important and the outcome was that we ended up with a lot more formula that M could drink and at a lower concentrate that he needs to remain healthy.  I add the boiled water whilst it’s still warm as I’ve found this dissolves the powder more thoroughly and a good whisk ensures that there are no lumps poured into the feed bottles.  This is important as those miniscule lumps can be enough to block the tube and cause the pump to alarm.

20150203_160111Feed mixed and bottles filled, we then store them in the fridge for up to 24 hours, following the advice of both our dietitian and the community nurse, who reassured us that this was safe to do and is a shortcut that makes my life a whole lot easier.  M hates having his E028 cold, so I make sure that the bottle is taken out of the fridge at least 30 minutes before his feed is due to start and warm it in a bowl of hot water – a great tip shared by the nurses at GOSH.  The first few days felt chaotic as I rushed around making up feed, storing bottles and trying to make sure that we were doing everything we were supposed to do.  Now I’ve found we’ve fallen into a steady rhythm as I’ve found my feet in making this process work for me and that was the key to our success.

Beating the Bullies – Anti-bullying Week 2014

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November’s proving to be a busy month, what with Armistice Day (11th), Children in Need (14th), World Prematurity Day (17th) and this week it’s the turn of Anti-bullying week (17th-21st).  The aim of the week is to raise awareness of bullying and encourages children, young people, schools, parents and carers to come together and work towards stopping bullying for all.  There are no official statistics about the prevalence of bullying across the UK, but recent reports state that almost 45,000 children spoke to ChildLine about bullying during 2013, a worryingly high number and one that’s unlikely to scratch the surface of the problem.

Bullying is defined as “Repeated incidents of physical or mental abuse (teasing, taunting, name calling, threatening, isolating) of a weaker person by a stronger person.”  Stronger is not necessarily defined by size, but also includes those who are more confident or more able to pinpoint a weakness in the person they are victimising. The sad reality is that this naturally makes disabled children or those with special educational needs a prime target for bullies and they are more likely to experience bullying in school and in the wider community that other groups.  The focus of this year’s campaign is to eradicate bullying for these vulnerable individuals in particular.

This focus has struck a particular chord with me this week as M has been dealing with some bullying over the last few weeks at school.  Some of the boys in his class have been teasing him about his allergies by saying that they are allergic to him and then pretending to be physically sick. This has had a knock-on impact in the playground, where the same children have then been avoiding playing with him, leaving him feeling isolated and on his own.  He has some good friends, who have stuck by his side and defended him when he’s felt unable to do it himself; and his big sister has lent her support too by watching out for him whenever she can and inviting him, and his friends, to join in games that she’s playing with hers.

Unfortunately, M’s complicated needs – dyspraxia, dyslexia, EGID and food allergies – make him an obvious candidate for attention from bullies, who only need the smallest difference to focus in on and attack. We’ve taught him to stand up for himself without being aggressive or rude, to ignore whenever possible the comments made and to walk away when the going gets tough; but it’s not an easy issue to tackle.  Right now, he’s anxious about their response when he finally has his tube fitted and is even worrying about how things will go next year, once G has moved on to secondary school.  Don’t get me wrong, his teacher and the school have been proactive in dealing with the bullies, but they can’t take away his fears or his belief that he’s not being heard.

Sadly he’s not on his own.  Children with complex medical needs can feel isolated by their illness as they struggle with feeling different and the questions of why they can’t be like their friends or why they are so frequently absent from school.  Even those with better known conditions, such as T1D or asthma, may have limited contact with others of the same age who are dealing with the same issues and I can only imagine how much harder it is for those with rare illnesses, who may know no-one else with the same diagnosis in their area.  A lack of true understanding about their medical needs and the impact on their everyday life can add to their frustration and the sense of being on their own.  Adding bullying to that already tumultuous mix is often a burden too many and these children may head into a downwards spiral that can result in poor self-confidence, depression and even self-harm.

What can we do?  I don’t have an easy answer to that difficult question.  As a parent I can educate my children to respect the differences of their peers and not to belittle those who don’t conform to society’s notion of “normal”.  I can encourage them to enjoy friendships with everyone and not just those who have similar interests or hobbies.  I can teach them that sometimes they won’t see eye to eye with their classmates and that those differences of opinion is what will challenge and shape their own beliefs.

And as a parent to children who stand out from the crowd, I can help them find their feet in our world, to stand strong when challenged and to see the value in their very uniqueness.

The Great ‘Flu Vaccination Debate

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fluIt’s that time of year once again, when the NHS starts talking about ‘flu vaccinations and those of us with chronic illnesses – or who fall into one of the other qualifying categories – attempt to book our appointment before winter’s half over and we’ve already been laid low by the ‘flu.  Somewhat astonishingly this year, both my GP’s surgery and I were quick off the mark in being organised and by mid-September, not only had my appointment been booked, but I’d also had the injection itself.  They had checked my medical records and found that it didn’t appear that I’d ever had the pneumo-vac, which led to the unexpected double whammy of a needle in each arm during my 5-minute appointment.  The only years I’ve not had the ‘flu jab in the past 29 years of my T1D life were those when I was pregnant and that was down to personal choice.  My one experience of the ‘flu, caused by an inability to get an appointment before November, saw me laid low for the best part of 2 weeks by a bad bout of the ‘flu and Mike and my Mum were let to rally the troops on a daily basis.  For me, the ‘flu jab is not an option – its a necessity.

Since having M’s diagnosis with EGID and learning more about the long-term nature of his condition as well as knowing firsthand all about life with a chronic illness, I started to investigate whether he should also be having an annual ‘flu vaccination to help keep him healthy.  Our GP offered no opinion on whether he should have it or not, though he was more than happy to agree if we wanted to go ahead, and our GOSH consultant thought it a good idea, but something that needed to be actioned by our GP.  It quickly became evident that Mike and I would be the ones making the final decision and so the hard work began.  I started researching the pros and cons of the vaccination for M, but with one thing and another, including his admission to GOSH for more scopes, last year just passed us by and as we had survived the onslaught of winter colds and bugs reasonably well, I shelved the idea for another time.

Courtesy of blog.fromyouflowers.com

Courtesy of blog.fromyouflowers.com

This autumn has sneakily crept up on me and with its arrival has come the need to revisit that discussion and make our decision.  One of my main concerns was M’s egg allergy as the vaccines given are grown in hens eggs, which can cause an allergic reaction and that is something we need to avoid given M’s delicately balanced state of health right now.  However, reading more on the subject (and trust me there’s a lot of information out there), the fact that M does not suffer with anaphylaxis, but rather a delayed reaction to egg combined with the availability of ‘flu vaccines with low or no egg content, I was reassured that it would be safe to give it to him.

Next I needed to consider whether to insist he has the traditional injected vaccine or if we should try the new nasal spray vaccinations, which are currently being rolled out across the UK for all children under 4.  Whilst the nasal spray would certainly be easier to administer, the current NHS recommendations are that this is not given to children with a known egg allergy as there is simply not enough evidence to conclude whether it is safe or not.  Much as I feel M needs to be protected against the ‘flu, I am not yet prepared to take an unnecessary risk whilst there are still alternatives available.  We are struggling with his EGID at the moment anyway and adding an unknown to the mix could lead to repercussions that could affect us all for months.

dateSo, it would appear that the debate has been settled.  I have requested with our new GP that M is given the ‘flu vac and am waiting for the phone-call back to confirm that a low/no egg vaccine has been delivered to the surgery.  Fortunately, M is astonishingly stoic about having injections, so I’m confident that he will take it with the minimum of fuss – it would be a whole other story if the child in question was G, but luckily we don’t feel she needs to have it too for the time being.