Tag Archives: food allergies

Here’s to 2015

The First Hurdle

Our GOSH admission had three key stages, the first of which was to dis-impact M’s bowel and prepare him for a repeat pellet study. We knew that when the original transit study was done at our local hospital 18 months ago, he was chronically impacted and there was some debate over whether the results, that suggested his transit was relatively normal, were accurate or not. My honest opinion was that he was not struggling with a slow transit colon, but the gastro team at GOSH wanted to be certain and were more than happy to admit him for this test due to the issues we’ve experienced with our unsympathetic local hospital over the last 12 months. My instinct was that nearly 9 years of unrelenting diarrhoea meant that there had to be another root cause for his problems that was still waiting to be discovered and it would just take some persistent looking to find it.

Courtesy of ebsta.com

Unfortunately, the first hurdle – after the resolution of the whole missing bed saga – proved to be far tougher than any of us had anticipated. After his amazing courage in facing all the health and medical challenges of the past year, and despite knowing that he needed to have a NG-tube, M showed just how stubborn he can be and steadfastly refused to co-operate with the nurses who were trying to pass the tube. Wednesday evening saw 5 different nurses, 4 attempts, a flurry of unsuccessful negotiations and 1 small boy, who pulled the last 2 attempts out himself because, according to him, the nurses weren’t listening when he asked them to stop and then told them to go. Having kept the other occupants of the 4-bed bay awake until past midnight with his cries and screams, we all finally admitted defeat and decided to leave it to the next day’s nursing team to remedy the situation.

Thursday morning arrived far too quickly, with a disturbed night’s sleep for M and an uncomfortable one for me. We talked about the tube and the need to have it in place as soon as possible so that we could start on the first round of treatment, the dreaded Klean prep – a highly effective laxative that would start the process of clearing his system. M knew and accepted all the reasons for the tube, but at the heart of the matter was the fact I had a small, scared 8 year old, who had endured a great deal since his scopes last October and was evidently close to saturation point.

Courtesy of The Royal Ballet/ROH Johan Persson

Even the lure of tickets to go to see “Alice in Wonderland” performed by the Royal Ballet at the Royal Opera House, Covent Garden that very afternoon looked unlikely to be sufficient draw, but my boy’s love for all things theatrical combined with my own enthusiasm for going to see anything at the Royal Opera House eventually overcame his worst fears and won the day. He agreed to let one of the doctors pass the tube and with 4 of us holding his head, arms and legs, another distracting him whilst it happened and the doctor doing the deed itself, we finally got the tube in place. With that hurdle tackled, M and I rushed to get ourselves ready and a bag packed for our trip to the theatre. We went by taxi with another little girl from the ward and a nurse and arrived just in time to take our complimentary seats in a box before the ballet began. The performance was an amazing visual feast and proved to be a more than adequate distraction from all the tears and trauma of the morning. M loved the outlandish costumes of the Mad Hatter and we had a lot of fun trying to work out which of Alice’s family and friends were depicted by each of the fantastic characters we met throughout the rest of the ballet.

Courtesy of The Royal Ballet/ROH

Naturally, as I’ve come to expect when dealing with anything to do with M, nothing was as straight-forward as we might have hoped as we headed into that all important first full day of admission. The stress of the tube placement led to him being violently sick within 10 minutes and he spent the rest of the day retching and bringing up bile, meaning the Klean prep couldn’t be started until much later in the day. He reacted to the Duoderm, a dressing usually used to protect the fragile skin of the face by forming a barrier between the cheek and the tube and tape, which meant there was no alternative but to tape the NG-tube directly to his face. The final straw came in the middle of the night, when after I’d finally got my tired chap to sleep, the quantity of the Klean prep being pumped in at the speed it was upset his system and he woke to be sick for the second time in less than 24 hours.

By the time Friday morning came around, we were both feeling emotionally fragile and physically exhausted and M refused point-blank to move from his bed. We sat quietly on ward, with M plugged into the television via his headphones and I immersed myself in the escapism of a good book. It had been a bumpy start, but finally we were on our way.

Merry Christmas!

Christmas decorations with a M twist

Stir-up Sunday

4 Replies

Courtesy of telegraph.co.uk

Did you know that the last Sunday before Advent is known as “Stir-up Sunday”? That it’s thought that this tradition was introduced to Victorian Britain by Prince Albert? Did you realise that the Common Book of Prayer is the source for the nickname as the Collect for the Day starts “Stir up, we beseech thee, O Lord“? And I love the idea that hearing those words whilst in church on that Sunday, meant that cooks, wives and servants would be reminded that it was time to get started on preparing the Christmas pudding.

The reason I know all this is that this year Stir-up Sunday fell on November 23rd and I went on-line to track down its origins, whilst G and M helped my Mum create a culinary masterpiece worthy of a M-friendly Christmas. My Mum was given this recipe a couple of years ago and it proved relatively easy to convert to suit our allergy requirements. The children have enjoyed making it and this year was no exception, even though we know there’s a good chance that M won’t be able to eat it by the time Christmas arrives. The recipe was also a great opportunity for M to practice his reading skills and he did a sterling job in making sure that all the ingredients were present and correct.

With all the ingredients in the bowl, the whole family took their turn to stir the mixture and make a wish. M took a little convincing not to share his wish with the world, but the pudding was made and is now waiting for Christmas day. I’m assured by those in the family who enjoy Christmas pudding, of which I am most definitely not one, that this is a great recipe and that the pudding is delicious as well as being allergy-friendly. Definitely one for the cook-book!

Beating the Bullies – Anti-bullying Week 2014

1 Reply

Courtesy of www.anti-bullyingalliance.org.uk

Courtesy of http://www.anti-bullyingalliance.org.uk

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

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

Courtesy of http://www.theguardian.com

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

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

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

Courtesy of http://www.sciennes.ik.org

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

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

Busy days

3 Replies

Now that Halloween and Bonfire night are behind us and Christmas is fast approaching, there’s finally a little time to look back and reflect on the start of the new academic year. September seems like a lifetime ago and yet was a busy month with appointments right, left and centre that have had a lasting impact on decisions about M’s long-term care. We had appointments with GOSH, a new community paediatrician, M’s OT and with CAMHS; and I needed to be the thread that linked them all to ensure that M remained at the centre of their focus and that all agencies were working together to provide the best support they could.

Courtesy of travaasa.com

The OT’s review was everything we needed it to be and she has already started going into school once a week to work with M on his handwriting skills. The clinical psychologist he meets with fortnightly through CAMHS is slowly building a relationship with him and gently pushing him to talk about how he feels about life with EGID and the frustrations he experiences. As for the new community paediatrician, who was recommended by our local hospital, well, lets just say we won’t be rushing to meet with her again. Her complete lack of understanding of his condition was glaringly evident as she suggested that regular toileting and a sticker chart were the answers to all our problems. How I refrained from saying something very rude is nothing short of a miracle!

The most important of all these, for us, was our regular appointment at GOSH with the gastro team charged with M’s care. The restricted diet and increased medications over the last 3 years have not brought about the results we’ve been aiming for and M continues to be symptomatic a lot of the time. We have become increasingly concerned about his emotional well-being as he struggles with the impact of EGID and multiple food allergies on his daily routines and I was determined to come away from that appointment with a tangible plan in place. Despite our best efforts with the challenging treatment suggested by the local consultant leading into the summer, our worst fears were realised when the registrar told us that M appeared to be impacted again and we would need another course of fairly heavy-duty laxatives to empty his bowel.

That led into a lengthy discussion about where we’re headed and what the most sensible next steps for M’s care are. Short-term plans are all well and good, but we now need a long-term care plan put in place. He agreed that we can’t keep limping from one appointment to the next and promised to discuss M’s current situation with our consultant. Medical terms such as “pellet study“, “elemental diet” and “manometry” were bandied around and I am glad that, thanks to the support from other FABED families, I have a reasonable layman’s understanding of what all these terms actually mean.

We left the hospital feeling that we were beginning to making some progress in dealing with the problems that continue to dog M’s every step and a short-term plan that would start to deal with the current impaction issue. The longer term decisions would be discussed both internally and with us before anything was settled on for definite. A follow-up appointment with the consultant herself was made and our step was just a teeny bit lighter as we felt our concerns were being heard and addressed.

Courtesy of abercrombierealestate.com

However, since that day, over 7 weeks ago, I have spoken to GOSH at least once a week and almost daily over the past 10 days. The improvements expected haven’t happened and so the decision has been made to admit M into the hospital for further testing. We need to understand whether his bowel is working as it should or not as that will give us a clue as to the direction we need to head. We have also agreed with his consultant that the diet and medicines just aren’t helping his hugely allergic colon and so have made the decision to remove all food from his diet and follow the elemental diet via NG-tube for a while. This should give his bowel and body some much-needed time to rest and recuperate, something I believe it so desperately needs.

Just when you thought it was going to be easy…

5 Replies

…something happens that shows you that it really doesn’t pay to be complacent, especially when it comes to children with complex medical needs. The reason for my most recent angst? The whole ‘flu vaccination thing! Yes, you probably read my blog post over a month ago, where I discussed the decision process we were going through regarding M and the ‘flu jab, and almost definitely concluded by the end that everything was set firmly in place. Having visited our new GP, I certainly felt that we had agreed what was best suited to M’s needs and was now just waiting for the confirmation phone-call and a date for my diary.

You’ll have guessed by now that it hasn’t been that easy and whilst that doesn’t come as any surprise to me when it concerns my youngest, the complexities of getting the situation sorted came at a time when, to be perfectly honest, I really didn’t need the added aggravation. It all started when I phoned the surgery to book the appointment. The receptionist needed to discuss which clinic to book M into because he was having the injection and not the nasal spray and so referred him on to the practice nurse, with a promise she’d call me back. 10 days and 3 phone-calls later, I was still waiting for the practice nurse to confirm which clinic M needed to attend. Oh, and there was the added problem – or so I was told – that there wasn’t enough child vaccines in our health centre, so we would have to wait for those to arrive before I could make a definite appointment.

This is definitely a t-shirt us #EGID parents need!

The string of events that followed are like the plot of a bad 1980s sitcom as we got bounced from one local medical establishment to the next. The first problem was that the no egg vaccine is not licensed for use in under-18s and so the nurse wasn’t happy to give it to M, especially as he’s never had the vaccination before. She was keen to discuss the situation further with one of our local hospitals and so I agreed to wait. Next, I had a message telling me that the hospital would give M the injection, so that he could be monitored and could I confirm that I was happy for my contact details to be passed onto the appropriate administrator to arrange that appointment. Needless to say, I confirmed as soon as I could and then sat waiting for the next installment in this latest saga.

Three days later, a copy letter arrived in the post from the community paediatrician, who has met M once, knows very little about him and just confirmed that he could have the ‘flu vaccination unless Mike and I knew of any reasons why he shouldn’t have it. Er, no – after all, we’re the ones requesting he be given the damned thing. A week after that, another phone-call from our local health centre, advising me that the local hospital won’t give M the injection because his 2009 blood tests didn’t show any sign of an egg allergy. WHAT?!

Now, don’t get me wrong, M does not suffer an anaphylactic reaction to egg, rather a delayed non-IGE one, so I can understand that they don’t think it necessary to be monitoring him on the ward; but blood tests from 5 years ago are hardly a good basis for any medical decisions made in my opinion. In the 5 years since those blood tests were carried out, he has been treated by GOSH, had a diagnosis of EGID and we have established that he struggles with several food allergies that, because of the very nature of his reactions, will never show up in the standard blood tests.

The next part of the conversation however, really took the biscuit for me, though I don’t blame the poor receptionist tasked with phoning me to make the relevant arrangements:

“As his blood tests were negative, the hospital have said he can have the ‘flu vaccine here, so I can book him into this Saturday’s clinic for the nasal spray.”

“Um, no he can’t have the nasal spray because of his egg allergy and the nature of his underlying chronic illness.”

“Oh, well the hospital said he could have it as he doesn’t suffer an anaphylactic reaction, so they want him to have the nasal spray here.”

“Well,” – (a somewhat hysterical tone starts to creep into my voice) – “Great Ormond Street have said he needs to have the injection, so I think we’ll follow their advice as they understand his medical needs.”

“Right, so you want him to have the injection?” – (she’s now slightly perplexed) – “Well, I’ll have to check which clinic I need to book him into. I’ll call you back.”

womenonthebusinessstage.co.uk

Have you ever felt like you’re going in circles? Five weeks on from my original GP appointment and I was right back where I started and M still hadn’t had the ‘flu vaccine. I was even beginning to question just how important it is for him to have it, given he hasn’t had it before, but GOSH had recommended it as a good idea for him and I wasn’t prepared to give up at the first hurdle. Fortunately, the receptionist was as good as her word, has booked him in for appointment after school one day next week and has left a note on the system for the nurse at that clinic to review his medical history before he has the injection. Of course, I’m trying not to panic that she might take one look at his notes and refuse to give it to him, but at least we’re making steps in the right direction at long last.

Mission Impossible: More Secret Veg

1 Reply

Courtesy of twirlit.com

SECRET MISSION (should I choose to accept it!):

To find new ways to sneak extra vegetables into the diet of my somewhat veg-averse children without them noticing
Avoid the obvious appeal of a delicious chocolate beetroot cake and instead find a savoury dish that achieves similar success

RECIPE 1: Vegetable Fritters

Method: I took one of the firm favourites in our household, Corn fritters and decided to give it the sneaky veg treatment. I whipped up a batch of my Canadian pancakes batter, threw in a generous handful of frozen corn and then grated a large carrot and a large courgette into the mix too. I added a little ground nutmeg and black pepper before cooking and serving with sausages and some sliced cucumber and apple on the side.

Result: Silence as the food was wolfed down, clean plates appeared and the requests for “just one more pancake please Mummy” came flooding in. The observant pair had noticed the addition of extra veg, but as M likes his carrots cooked and both thought the courgette was cucumber, there was no complaint about my tinkering with this popular dish.

Mission status: Success

RECIPE 2: Pasta Sauce

Method: I took an array of vegetables I knew that neither child would usually eat, blitzed them together in my handy food blender and heated the concoction through in a pan before adding to some M-friendly pasta. My very home-made and rustic pasta sauce was made from tomatoes, red and yellow peppers, courgette, mushrooms, onion, garlic and the remains of an over-ripe avocado. This time I added a sprinkle of chilli flakes and a dash of rosemary to deepen the flavour. Once the pasta was well coated in the sauce, I added some diced chicken and grated a little cheese on top before serving to my suspicious duo.

Result: G and M again munched their way through a generous serving of the pasta dish and were keen to know when I would cook it again. I poured the leftover sauce into a Tupperware container and now have it stored in my freezer for the next time this pasta dish needs an outing.

Mission status: Success

EXTRA MISSION: Pizza

Method: I bravely took a portion of my pasta sauce, added some safe BBQ sauce as well as some pesto before spreading across our home-made pizza bases. I then topped this with a variety of foods including ham, prawns, pineapple, olives and cheese.

Result: Another resounding success. The pizza disappeared within minutes and with no comment about the sneaky veg pizza sauce I’d added.

Mission status: Success

FINAL MISSION STATUS: COMPLETE

Three brand new savoury dishes, containing enough sneaky veg to keep any mother happy, were successfully created and enjoyed by G and M.

A Birthday Treat – Lemon Meringue cupcakes

2 Replies

This time last year, M was admitted into GOSH for scopes and he and I spent Mike’s birthday away from the birthday boy himself, leaving him to celebrate at home with the rest of the family. There was a point this year when I thought history was about to repeat itself as we’re once again waiting for an admission date for M, who needs further testing to try to sort out the games his body is currently playing. However, Mike’s birthday came, and went, with no sign of a phone-call from GOSH and I finally had a chance to make a long-awaited attempt at the Lemon Meringue cake I’d been dreaming of making last year.

Lemon Meringue pie is Mike’s favourite dessert and there was a time, many eons ago, when I’d actually make him one from scratch for his birthday treat. With the arrival of G and M, the general busyness of work and juggling the school-run alongside business meetings and the general day-to-day running of the household, I don’t think I’ve turned my hand to such a dish for at least a decade. Add into the mix, the newer challenges of egg-free meringues and MEWS-free pastry and it’s not been the easiest pudding to make. I attempted a cheesecake version for Fathers’ Day this year, but that didn’t quite go as planned, so I put my thinking cap on to see if I could figure out an alternative format for this popular dessert.

I settled on lemon drizzle cupcakes topped with vanilla butter-cream icing and small meringues. I’ve made Lemon drizzle cake before, but found that the rice flour made the sponge taste very granular and I was keen to see if I could improve the texture. I found a lovely recipe for vegan lemon drizzle cake and read around the options for replacing the flour to make the cake both gluten- and potato-flour-free. My final recipe included gram flour – an ingredient that’s been lurking in my cupboard for a while, but which I had yet to brave using – rice flour and tapioca flour and the end result was infinitely better than the last time, though some further tweaking to create the perfect lemon drizzle cupcake is needed.

I whipped up a small batch of my vanilla butter-cream icing and used it to secure the mini egg-free meringues to the top of each cupcake. I was delighted with how these cakes looked and M spent most of the day, and evening, before Mike got home from work, begging to try one to “just check it’s okay for Daddy!” I am assured by the family that the cupcakes were a huge success and so that’s another recipe added to my ever-increasing repertoire.

7 years to diagnosis

Searching for an answer

Tag Archives: food allergies

Here’s to 2015

The First Hurdle

Merry Christmas!

Christmas decorations with a M twist

Stir-up Sunday

Beating the Bullies – Anti-bullying Week 2014

Busy days

Just when you thought it was going to be easy…

Mission Impossible: More Secret Veg

A Birthday Treat – Lemon Meringue cupcakes