Tag Archives: love

At the heart of the matter

Sometimes in life you encounter a small bump in the road that makes things just a little more complicated than you were expecting; that’s something that’s true even for families already dealing with an array of medical issues. Our most recent hurdle was completely unexpected and fortunately had a far better outcome than could have been the case.

We have long been aware that M suffers from a low heart rate and blood pressure, something that has reared its head each time he’s had to have an anaesthetic, whatever the reason. Various medics have commented on it, left him a little longer in recovery and then we’ve just got on with life as we know it, without a second thought. Last December however, things changed and we had to face this issue head-on. During M’s GOSH stay, it quickly became clear that both his heart rate and blood pressure were a little lower than the nurses were happy with and the ward doctors, after much discussion, decided to adjust the parameters as they felt this was perhaps just his normal – I wasn’t so sure. By the time he had started experiencing dizzy spells, had ended up lying in bed with his head lowered and having his blood sugars tested to rule out hypoglycemia as the root cause, I was concerned that it was something more and determined that further investigations were necessary.

Fast forward a few months, M continued to experience dizzy spells, though fortunately he never fainted outright despite a couple of close-calls and we had a referral to a paediatric cardiologist from our GP. M and I headed off bright and early for an 8am appointment and met the charming Dr S, who listened carefully and made copious, comprehensive notes about M’s extensive medical history before starting his examination. He began with an ECG to examine the rhythm and electrical activity of M’s heart and then did an echocardiogram to look at its structure. M was fascinated by the whole procedure and questioned Dr S every step of the way, not least as he was performing the echo. What impressed me most was the calm approach this doctor adopted to my inquisitive boy. He didn’t ignore his questions, nor did he ask him to be quiet, but instead explained each and every thing he was looking at, telling M what he could see, what each part of the heart was supposed to be doing and uttered the words that M has since repeated ad infinitum, that he has a “Waitrose-quality heart”.

However, the ECG did show a problem with the electrical impulses in M’s heart, namely that they do not start in the right place. Dr S reassured me that this was not anything to be overly concerned about as many people live perfectly active and normal lives completely unaware they have this condition, but the complicating factor was that M had been experiencing periods of dizziness, which needed examining further to determine whether any medical intervention was needed at this point. So, we headed into 5 days of testing and poor M had to survive the permanent fixture of a portable ECG monitor for 24-hours a day as well as his feeding tube and pump.

There is no doubt about it, they were a tense 5 days, but M made his way through it with his usual indomitable spirit. He had to push the green button every time he felt dizzy whilst the monitor was attached, so that the cardio team could examine the ECG results to see what was going on with his heart when these episodes happened. He also suffered an allergic reaction to the sensors that were stuck, day and night, to his body, and which left his torso itchy, red and raw for weeks afterward. We experienced more beeping alarms in those 5 days than we had in a long time and I became adept at changing sensors and resetting monitors whenever and wherever necessary. M and I were also able to find some humour in the situation and he agreed to leave further health problems for someone else to experience for the foreseeable future!

Fortunately, we didn’t have to wait too long to review the results with Dr S and the answers were encouraging. M has mild sinus node dysfunction and what is known as a junctional rhythm. At the moment, he is having regular episodes of dizziness due to these problems, but as he has never fainted, they are not considered serious enough to require any treatment. There is a strong likelihood that his NG-tube is a contributing factor to these symptoms as it is known that tubes can trigger a response in the body causing his heart to slow down and so it may well be that when his tube is removed, he will become asymptomatic once again. Dr S will see him in a couple of years to monitor what happens as he heads into puberty as this is considered a key time for potential changes to occur and in the meantime, we will keep a watchful eye to make sure our boy stays as healthy as possible.

Flatbreads and Fajitas

An unexpected day off!

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As a parent of a child with a chronic illness, one of the unexpected challenges you have to cope with is finding people you trust to take on their care, even for a short while. It can be difficult to entrust your child and their needs to anyone other than immediate family and, for Mums in particular I suspect, that may mean you end up doing almost all of their care by yourself. The opportunities to have that much-talked about and desired “me-time” are often few and far between and, to be frank, if you do manage to grab some, it’s usually at the cost of not spending it with your significant other at a point when time together is most needed. In the 6 months since M had his tube, Mike and I have become like those proverbial “ships that pass in the night” as we juggle work commitments, school timetables, extra-curricular activities and those few social events that have helped keep us sane. Any time we have managed to spend together has revolved around appointments or meetings about M and the constraints of school hours.

We are extremely blessed that we do have an amazing support network surrounding us, which pulls together to ensure that we are able to keep going to work and can even occasionally both be out on the same evening, albeit often at separate events. My days are made easier by the fact that M’s school have so willingly shared my burden and responsibility by ensuring there are members of staff who know how to take care of his feeding pump and tube, meaning that I don’t have to be there every minute of every day. Without a doubt, their decision was made easier by the fact that I work less than 5 minutes away and they know they can call whenever they need to, but those phone-calls have been few and far between. My Mum lives close enough that she has been able to continue the routine of picking G and M up from school a couple of times a week, allowing me to work my hours and has been willing to provide some invaluable school holiday care for us too. We even have a babysitter who was willing to learn about the tube and whose GP parents, less than 5 minutes away, were an added bonus for the couple of hours we’ve needed once or twice.

Last week, we had an amazing offer from good friends – in fact, those GP parents I’ve just mentioned – which astounded us and gave us a break from routine that we haven’t enjoyed since last December. It all started at the beginning of half-term, when an unexpected text arrived on my phone as I was in the middle of convincing M to help me clear out and clean the pit he calls his bedroom:

“Hi, we wondered if we could look after the kids for you on Bank Holiday Monday so that you can have a bit of time for yourselves. Let us know what you think. O x”

Then there was a flurry of messages between us as I sat on M’s floor, overwhelmed and close to tears at the kindness of these friends. Not only were they offering to take G and M for a couple of hours, as I originally thought, but in fact wanted to look after them for the whole day and take them to a local wildlife park that I knew my 2 would love. They sorted out food, were not phased by the pump and tube and even claimed to be excited at the prospect of having G and M as their guests for the day. What was even better was that the children were as thrilled as their hosts at having a day out too; and what a day they had! For the rest of the week, it’s been endless tales of marble-run competitions, playing in the hay barn, seeing the animals and the zip-wire in their back garden.

As for Mike and me, well, we had our day together and enjoyed every moment. It may not have been the adrenalin-filled adventure experienced by our children, but we had time to buy some much-needed bits and pieces for the house, enjoy coffee and cake mid-shopping trip and lingered over a late lunch not constrained by complex food allergies and a restaurant of our choice. We didn’t get to the cinema as we had originally hoped we might, but thanks to my Mum, we got our night out at the theatre the following weekend instead – I know, two dates in one week, unheard of! Most importantly, we were able to spend precious time with each other without worrying what G and M were up to and without waiting anxiously for my phone to ring.

NEAW 2015 – The Round-up

NEAW 2015 – The final day

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This has been the hardest day’s blog to write. Inspiration has been lacking and I just couldn’t think of what to write about on the subject of “Engage“. In an attempt to stir my creative juices, I looked again at the many daily updates, photos, videos and statistics I’ve been seeing, reading and “liking” all week, posted by many fellow EGID families on their FB pages, all in an attempt to raise awareness of the illness. It was as I was browsing that I started to notice that many of them began, almost apologetically, with words to the effect that they were sorry to be bombarding their FB friends with these regular informational posts on the subject, but that it would be for this one week only.

That’s when it struck me. This week, 7 days from May 17th to 23rd, I and tens of other EGID families here in the UK and across the world have been fighting hard to raise awareness of this illness that impacts our lives; and we’ve been apologising for it. We’ve been grateful that we have been able to engage with our audience this week and we’ve almost promised to give it a rest until NEAW 2016 rolls around. BUT the reality of EGID for us is that we don’t get that break. We don’t get the chance to focus on it for one week only and then go back to the daily grind of school runs, workloads and running the home. This is it. It’s not even just a year-long commitment, but a life-long one and there’s no escape. I can’t shut down my computer and ignore the posts. I can’t groan inwardly, grit my teeth and ride the week out, thankful that the 24th will soon be here and then breathe a huge sigh of relief that that’s it done for another year. I don’t have that privilege.

The reason the EGID community has been trying so hard to engage with you this week is the people in our lives who struggle with this rare condition on a daily basis: our superheroes. Their strength and courage in facing adversity is awesome and their brave smiles bring inspiration at the most difficult of times.

My reasons for engagement are summed up beautifully here by my 2 amazing children:

and with that, there really is nothing more to say.

Our thanks go to…

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The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend. One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it? But whichever side of the ocean they may live, our families have been there in whatever way they can and supported us in the tricky decision to move M to a NG-tube and the elemental diet. We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all. Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump. We also owe massive thanks to M’s fabulous dietitian, who is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school. 5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do. This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had. This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had. She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time. She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home. And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak. We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with. He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with ~~some~~…~~many~~…repeated requests on my part and have done an amazing job at sharing my posts on. Your silent show of support is what helps keep me going, even when times are tough.

Day 5 and finally it’s A for Awareness!

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A for Awareness has meant:

This… and this…

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…lots of this…

and this…

This is the amazing video that M made, with help from his big sister, to share his story about life with EGID. By the time this blog post is published, he will have presented it to every class in his school – that’s 8 classes, approximately 220 children and around 15 members of staff who will now understand his journey a little better.

So come on, you all know the drill by now: share, share and share some more and help us get M’s message out there.

Changing Attitudes – NEAW 2015

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Last week I took part in the Diabetes blog week and looked at my changing attitude to my T1D over the past 3 decades as well as changes I hope will happen in the future. My plea for improved education about T1D vs. T2D is closely linked to my longing for increased awareness about EGID and has resulted in my efforts to bring the focus of family, friends and our local community to the subject through local media coverage and social media this week.

During a music break in my recent radio interview, the presenter asked me an interesting question: whether I’m upset when people misunderstand EGID? We had been discussing off-air the fact that there is often recognition of the food allergies side of the illness, rather than the disease itself and whilst I understand that allergies are something easy for people to understand, I’m frustrated that that’s what gets people interested in finding out more. I pondered his question for a while and once the session was over was able to give him my honest answer: No. I’m not upset that people misunderstand EGID because I’m usually impressed that they know something about it. The truth is that they must have heard of EGID in the first place to be capable of misunderstanding this complex disease and therein lies the problem. Ignorance of EGID and the unseen effects it has on individual and family alike means that those of us living with it are sadly often viewed as making it all up or wildly exaggerating the severity. That attitude can leave a family feeling very alone at a time when emotional and practical support is needed most.

This is what today’s C is all about – Changing Attitudes.

The truth about EGID is this: It’s not just about the food allergies, that’s the easy bit to understand and, in many ways, the easiest bit to live with. It’s about much, much more than that. It’s 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 and you’re familiar with just about every pain chart created in the history of man.

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

And it affects the whole family, not just the one with the diagnosis. The endless merry-go-round of numerous hospital appointments, medicines to be taken and food to be cooked safely, avoiding cross-contamination at all costs is exhausting. The keeping of meticulous daily records of food eaten and symptoms experienced to try to find a link and make sense of what’s going on, and dealing with the self-recrimination when you miss a day out because what if that was the one that would give you more answers? Day trips, meals out, holidays all require military precision to organise and every decision is coloured by whether needs can be met or not. The feelings of isolation, for parent and sibling alike, because it’s frequently the case that there is no-one else nearby who has the same experiences or can truly understand. The lack of any conversation that doesn’t revolve around toileting and being too worn out to come up with an alternative subject. The sense that I, as the parent, know more about the intricacies of my son’s chronic illness than any medical professional we meet along the way and the frightening realisation that my children know infinitely more than them too.

It’s about the heartbreak of holding my sobbing child at 3am, tears streaming down my own cheeks as I struggle to find the words to bring the comfort that nothing else can bring at that moment in time.

At our recent admission at GOSH, one of the gastro consultants told me that it is widely recognised that children with gastro conditions have the worst quality of life of any child living with a chronic illness. EGID is an invisible illness, one where the individual frequently learns to hide, disguise and survive their struggles and just carries on regardless, accepting this life as their norm. Families supporting a loved one with EGID often feel isolated – not just from their circle of friends, but from the medical community, who know little about it and may question the integrity of the very people who are fighting to get the best care they possibly can. It’s not a parental fad about food allergies or an over-anxious Mum fussing about the small things; and it’s definitely not a figment of anyone’s imagination. The effects of EGID can be cruel to experience and devastating to see. So a change in attitudes is not only important, but a necessity for all those living with this diagnosis.

Now you know a little more about EGID and just how it impacts, take some time to think about how you can support those you know living with this disease. Don’t think that there’s nothing you can do to help. An offer of a cup of tea once the school-run is over, a home-cooked meal for the parent not in hospital or checking to see if there’s anything they need from the shops is more than enough. No gesture is too small: a smile, a text message or even a FB like or comment on Twitter will let that family know that they’re in your thoughts and that there is hope for change in the future.

United we stand

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Yes, you guessed it, today is:

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.

When 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. So 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“.

NEAW 2015 – E is for Educate

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It’s difficult to believe that National Eosinophil Awareness Week (NEAW) is once again with us and we have been, believe it or not, even busier this year than last in spreading our message about life with EGID. I’m hoping to again post a blog a day to raise awareness and this year have decided to follow the theme of NEAW, which uses the word E-D-U-C-A-T-E to do it:

Today’s letter is E for Educate.

This year we have been focussing our energies on educating those around us and around M about EGID.

How? Well. in the last week I’ve been interviewed on our local BBC radio station, featured on the front page of our local newspaper and last night we had a display and raffle at a local choral concert. During the week ahead, M will be sharing his story at school via a PowerPoint presentation that he and G worked together to produce and later in the week, I’ll be sharing that video with you all.

Why? Because awareness is key. The more people who know about EGID and trust me, the number of medical professionals who have even a passing knowledge of this chronic illness is staggeringly low, let alone the general public, the greater awareness of it there will be, which in turn means better support for children and adults like M and families like ours. Not only is there little understanding, but there is also an astonishing lack of funding for research into gastrointestinal disorders in the UK. Without medical research, then it is highly unlikely that approaches to treatments will improve and nor, by default, will the quality of life for these individuals.

What can you do? Re-read my explanation of EGID and then spread the word by talking to someone about EGID and explaining what it is. You can share these blog posts this week and ask friends and family to share them on too. Keep an eye on my FB page and Twitter feed to see who else is sharing information for NEAW 2015. Find out more about those charities supporting families living with EGID: FABED in the UK, Apfed in the USA and AusEE in Australia. Change your FB or Twitter profile picture to one of those promoted by FABED or Apfed even for just one day. Be more aware and know that by knowing something about EGID, you are helping support M and others like him.

7 years to diagnosis

Searching for an answer