Tag Archives: medical professionals

NEAW 2016 – #MoreThanFoodAllergies

The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Of course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with ‪EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, about “…the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way. The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway. The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to. The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst.

It’s about getting used to these things as being normal, or not even realising they’re not.”

We’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

My One Constant Companion

11 Replies

HS_Birthdays_30th Today 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*

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_0827 those 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.

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

Reflections of an admission

9 Replies

“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, 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/discharge – became 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. 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.

Early arrivals

Because #livinginfear is not just about the allergies

2 Replies

I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me. I quickly realised that #livinginfear is not what I want for M or, indeed, for G. It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats. They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid. They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf. After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening. Most critically, I need to teach them how to respond calmly should those reactions occur.

However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised. Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions. My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is: that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true. The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief. I second guess myself at every turn. I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true. Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t). I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey. I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

Being a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix. I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment. I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything. As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too. For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.

7 years to diagnosis

Searching for an answer