Tag Archives: Local hospital

September 2021: New Opportunities

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September: the month where everything seems to reset and start anew. As I have previously mentioned, G has made the move to a local college to study a BTEC in psychology instead of continuing with her A-levels. She catches the train to college 3 times a week at the moment and following an apprehensive start, has embraced that challenge as well as discovering the joys of travelling by public transport -delays anyone? – instead of simply being able to walk to school.

M has settled well into Year 11 and our delayed Year 10 parents’ evening revealed that he is doing extremely well and his teachers are expecting good things from him with his final GCSE results. He was unsurprisingly identified as being clinically vulnerable and was offered his first COVID vaccination as part of that first cohort, which he was keen to take up as soon as he could. Our GP has been very switched on this year and he has already has his ‘flu vaccination too as has G.  Unfortunately, September also saw M testing positive for COVID and having to self-isolate for 10 days, which was not ideal at the start of his new school year. He has been unwell with it and spent a lot of time either sleeping or coughing without much let up. We’re hoping that the vaccine, which fortunately he did have more than 2 weeks before he got ill, will do its thing and that recovery doesn’t take too long.

There has also been some great opportunities that have manifested thanks to G and M’s involvement with the young people’s forum at our local hospital. M was invited to join the judging panel for this year’s staff awards a few months ago and was later asked to be part of the presentations of some of the awards to the winners. Never one to miss the opportunity to dress up, M chose a brand new suit and wore it proudly into the hospital for both of the presentations he was able to attend. The first recognised the value and compassion shown by one of the receptionists, especially when speaking to bereaved families, and the second was to recognise the hard work and efforts of the vaccination team over the last 18 months. He particularly enjoyed meeting the vaccination team, even if his first question was about when he could have the COVID vaccine – little were we to know that his invitation for it would be waiting on our doormat when we got back home!

And finally, I was invited to become a member of the interview panel for a new clinical nurse specialist role within the gastro department at the hospital. I was super excited to receive this invitation and had a great afternoon turning my interview technique in a different direction to the usual finance-based questions I find myself having to ask. I even got to flex my acting skills as I helped run the role play element of the interview. It was a real privilege to be involved and fascinating to learn more first-hand about the process undertaken to select the right candidate for the job.

Virtual Appointments – 7Y2D COVID-19 Diaries Week 27

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Another significant change that has happened during the COVID-19 pandemic has been the way in which medical appointments are held. Appointments are a regular feature of life for both M and me and they have continued in a variety of ways since March, some of them decidedly better than others.

For M, his appointments with his gastro consultant at our local hospital have been held over the phone, although I would have preferred the video conference option that was originally offered. A key part of M’s hospital visits for me is the visual review of his health, and whilst I can see just how much he has grown and how healthy he is looking at the moment, I would have liked for his consultant to have been able to do the same. He also has his height, weight and blood pressure monitored to ensure that he is growing as is expected, something which is particularly important as he heads into puberty. Right now, things are looking relatively stable for M health-wise, though his return to school last week has seen both him and G picking up a heavy head cold and bringing it home to generously share with Mike and me.

In comparison, I’ve had a mixture of telephone and face-to-face appointments with various members of my healthcare team. My long-awaited referral to one of our local hospitals for consultant-led care of my Type 1 diabetes finally happened and, even though the initial appointment was done over the phone, I am now the proud owner of a prescription for the Freestyle Libre sensors, something I’ve been self-funding for the last 4 years. This technology has made a huge difference to my T1D management and so both the community care nurse and consultant were happy to support the funding of this equipment for me.

My podiatry appointment was face-to-face (or should that be face-to-foot) at the health centre in the next town over. I was required to wear a mask throughout and use hand sanitiser each time I went in and out of the surgery, which happened more often than you might think for 1 appointment. I was called in by the podiatrist, who accompanied me to and from the building, bearing his pack of anti-bac wipes to clean any surface I touched whilst I was inside. The appointment went well with an almost clean bill of health for my feet, the only problem being a rather painful case of plantar fasciitis in my right foot. A couple of new pairs of shoes with arch supports later, and already everything is beginning to improve.

We’ve both also had appointments for vaccinations, which obviously have to be done in person. M had his Year 9 booster jabs during the summer, whilst I had my annual flu vac last weekend. M is having his flu vac this coming weekend, with both G and Mike booked in for them in a couple of weeks time. I’ve also had an appointment with my GP, which required me to take and email photos to them ahead of my telephone consult. So far, all appointments have gone as well as we could have hoped and I can only hope that as the government guidance changes over the next few months with the increasing number of COVID-19 cases here in the UK, our medics continue to keep in touch and make sure we’re all keeping well.

Channelling Creativity – 7Y2D COVID-19 Diaries Week 13

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When writing my blog posts, I usually find that inspiration will hit for the next during the writing process, although I do occasionally find myself scrabbling around for ideas to develop and explore. This post is the result of one such experience. The truth about the last 13 weeks for most of us is that one week has very much been like another. In our household, weekdays have, and continue to involve, getting up and ready for the day, heading downstairs for work or homeschooling, some venturing out for water, lunch and copious amounts of coffee and eventually the end of the day, for me at least.

Evenings are time for family, daily exercise and bed. Weekends vary a little with no work and much longer walks with the children, but the truth is, there isn’t necessarily a lot of new and exciting things to share with anyone most of the time.

However, the one thing we have been doing is spending time developing some new skills and channelling the creativity hiding inside. With no choir rehearsals, sports or performing arts going on, it’s been really important to find other ways to spend our free time. As I’ve mentioned before, M has been honing his photography skills in preparation of starting his GCSE syllabus next year, whilst both he and G have been choosing to bake different treats every couple of weeks, which have been delicious to taste-test afterwards. G also decided that she wanted to share her joy of dancing with our community as a whole, so every lunchtime, 6 days a week, she goes out for an hour’s exercise and dances her way through our village.

I have also been feeding my inner creativity by learning to knit, a skill that both my Dad and my Gran first shared with me as a child and something I’ve long been tempted to revisit. Someone in our village offered some “How to Knit” kits near to the start of lockdown and whilst I don’t think I’ll be winning any awards for the end results, it’s been fun to relearn how to do it. And thanks to the discovery of a box of brand-new baby clothes and other paraphenalia from a few years ago hiding in the study, I’ve spent a few hours creating some baby bouquets and clothes bundles. With the help of one of the ward sisters, we’ve been able to donate these to

the NICU at our local hospital, somewhere that looked after both G and M at the very start of their lives. G helped out here as well, by making some beautiful hand-drawn congratulations postcards to accompany each bundle. It was fab to not only flex my creative muscles once again, but to also work with G to create something beautiful we could share with others in our community.

Reflections of an appointment

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I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.

There’s been lots going on over the last 6 months as many of my blog posts about our mini adventures have shown, but the one area I haven’t yet shared is the journey we’ve been exploring with our local consultant as I briefly mentioned last November. The decision to move almost all of M’s care from GOSH to our local hospital has not been an easy one to make, but for many reasons we have concluded that it is possibly the best one for now. Having a complete MDT (Multi-Disciplinary Team) close at hand to discuss all the challenges of M’s health has been invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the problems we’ve had with them in the past.

It sounds fantastic doesn’t it? An almost perfect solution to meeting the complex and on-going medical needs of M; and yet, I would be lying if I didn’t admit that we’ve had our ups and downs with some of their suggestions and have not yet found ourselves moving on and making progress from the starting point we had 12 months ago. The overall opinion held is that M’s ongoing problems are not really related to his EGID diagnosis or the numerous foods we have previously identified as being unsafe, but rather a physical problem that is massively affected by psychological influences that are still to be fully explored and identified. We don’t disagree that there absolutely has to be a psychological element to M’s health: how can any child live through the experiences of his first 12 years and not be impacted in that way? But it also feels as if they’re throwing the proverbial baby out with the bath water and ignoring all of M’s physical symptoms from birth to 5, a time when it was impossible for him to have developed any fears of new foods or associations that certain foods would cause certain health problems.

It’s been challenging for us to adjust our thinking and look to embrace their suggestions of how to move things forward for M. Experience is constantly nagging at the back of my consciousness, gently reminding me that so many times I have been proved to know my son far better than the doctors treating him; but Mike and I have both worked hard to be positive about their new ideas because ultimately we want what is best for M and what will improve his quality of life beyond his, and our, wildest expectations.

In August 2017, my thoughts stopped there. I wanted so desperately to believe that things were going to change, to improve for M and it was, I think, a conscious decision to not air my hesitations and doubts because I was afraid to unwittingly jinx the improvements we were hoping would come about. However, nearly a year on and things have not changed at all. I now have a child who has struggled his way through the first year of secondary school and has lost the spark that makes him him. M no longer sees a positive in being treated at our local hospital and just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.

At that appointment, the entire MDT acknowledged that M is not the child they knew 12 months ago and commented on his lost enthusiasm for choosing new foods to trial. I have tried so hard to explain to them that I am certain that M is not thinking his body into failing those challenges, but none of us really knows that for sure. The truth is that there are some foods that cause an unquestionable reaction and with others it’s difficult to judge if they’re causing an issue, or if it’s simply a case that we’re not really giving his body time to rest and recover between each trial. I’ll be honest, we’ve decided to relax the rules a lot at key times because it’s becoming increasingly evident that M needs the emotional boost that occasionally being able to eat more “normally” gives him. However, every decision to eat something we wouldn’t usually allow brings with it a set of consequences that are difficult for us all and not just for M to process.

I don’t know where we’re heading or what the next few months hold for M. The one thing we’re all agreed on is that we can’t keep living the current status quo because every day like this destroys another small part of the confidence we have in his medical team and buries his spark even deeper.

And I’m back!

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

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

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

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

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

Big Youth Forum Meet-up

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In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.

Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.

After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.

From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.

NEAW 2017 – Living with the unknown

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2017 marks our 5th National Eosinophil Awareness Week and yet, in many ways and for many reasons, this year may be one of our quietest yet. One of those reasons is that over the last 12 months, we have experienced a significant shift in the way that M’s doctors view his diagnosis and that change, along with the inevitable amount of growing up that is going on in our household at the moment, means that life has become about a lot more than just the label we’ve been handed to explain his medical condition. I’ll be honest, that transitioning medical opinion has been difficult to live with because it has challenged the very way we’ve coped with the last 11 years of our life and has demanded that we examine closely all of those decisions we’ve made believing them to be in the best interests of both our children and not just M. It has made us sit back and question whether we’ve been choosing and doing the right thing.

This seismic shift that we’ve been experiencing is not isolated to our experiences or even to our part of the world, but rather appears to be part of a nationwide change in the understanding, and even the diagnosis, of Eosinophilic disorders themselves. As a parent to a child with this diagnosis, the prospect of moving away from recognising Eosinophilic Disease as a genuine medical condition is a daunting one. Whatever title you want to attach to this little-recognised health issue, the hard facts are that those diagnosed with it are struggling and suffering on a daily basis and removing the validity of its name does not, and will not, remove the reality of the problem itself. The steps we have taken over the last 4 years since diagnosis have not always been easy ones, but without a shadow of a doubt, they have been ones that have seen much improved health for M at times when we have had to make what are unquestionably the toughest of choices.

Similarly, we are not the only family who has found itself moving away from the care provided by GOSH over the last couple of years – some have moved by choice, whilst others have had little or no say in the matter. In our case, our GOSH consultant and dietitian recommended we sought local input into his care because they had reached a point where they could find no explanation for why his body reacts as it does and felt that a fresh pair of eyes might be able to give us different insight into how to go on from here. The last 8 months have been extremely challenging for us all as our local consultant has made suggestions that we are not always 100% on board with and it has taken unbelievable courage on the part of all in our family to even agree to try new things that no-one really knows will succeed in the long run. The jury is still out on whether we are currently heading in the right direction with his care and truthfully only time will tell whether the decisions we are making this time round are the right ones or not.

Without any funded research into the complexities of gastrointestinal disorders, individuals like M will always be at the mercy of what can only be seen as an experimental approach, as diet, medicines and psychology are discussed and considered and tweaked to produce the best possible outcome on very much a “trial and error” basis. In our experience, we know that food plays a huge part in the way that M’s body behaves and the medicines he’s currently on appear to be doing their job of dampening down the body’s reactions to everything he eats. Likewise, we agree that there is a psychological element to it all and have had our concerns about the psychological impact of a chronic illness on his mental well-being. Sadly, where we have currently agreed to disagree with the medics is whether the psychology plays a bigger part than the physiology when it comes to M’s day-to-day health and responses. Yes, we know that stress can wreak havoc on the digestive system of just about everyone, but we will not be swayed in our belief that it is more than that for M. The hard facts of our 11 years with M show us that his health challenge is unquestionably a physical one and we will continue to fight for greater understanding of Eosinophilic disorders and how they affect everyday living for those diagnosed with them.

This week is about raising awareness of EGID and sharing our experiences – the good, the bad and the ugly – of living with it. For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

Indescribable fear

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b6e83c2b62a1e0ec0cd3fbc189efbc94When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.

In November I wrote a blog all about World Diabetes Day 2016 that contained these words:

“The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”

not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.

The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.

The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.

The fear that I might never be able to read or write without aids.

The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.

The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.

The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.

The fear that I might not be able to clearly see my beautiful children’s faces ever again.

Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.

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Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.

Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.

So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.

The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.

I am hoping beyond hope that those fears will never be realised, but only time will tell.

Breaking the curse

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Reaching today feels like something of a landmark moment. We’ve had our fingers crossed that we’d get to yesterday’s date without so much as a hiccup to stand in our way and we’ve not only reached it unscathed, but have surpassed it with no sign of looking back. Saturday was December 3rd and we were all feeling more than a little nervous about it. The date might not ring any bells with you, but in our household, hitting midnight on the 3rd at home felt like a huge achievement. For the last two years, that date has signalled the start of a hospital admission for M and we were desperate that history wouldn’t repeat itself for the 3rd year in a row. Of course, in both 2014 and 2015 we knew that the admissions were planned and it was just a case of waiting for a bed to be available for him, but nothing prepared us for the unlikely scene of déjà vu when the phone-call came summoning us to London once again, exactly one year to the day of the previous one.

There was no reason to think it would happen again, not least because there are no further admissions planned at GOSH and we had already told our local hospital that we wouldn’t even consider a December admission this year, but the fears of our “December 3rd curse” were there anyway. I’d like to say that the weekend passed without event, which is really what we would have preferred, but as ever in the 7Y2D household that isn’t quite the case. There have been unplanned hospital visits and unexpected procedures discussed for family members other than M over the last week, and the implications of those are still being mulled over as decisions have to be made and soon. However, most importantly, today is December 5th; M and G are at school, Mike and I are at work and that’s just the way it should be.

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Now we can start to enjoy Christmas!

From all angles

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The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

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The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.