Tag Archives: Awareness

Round Two: the Pellet study and other adventures

Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel. Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion. I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help. However, there were 2 problems we now had to overcome: M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child. The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt. For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time. It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm. Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started. GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started. The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas. By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

Despite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel. The final x-ray on Friday indicated that M’s bowel is working more or less as it should. It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job. We really couldn’t ask for anything more. So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

Here’s to 2015

The First Hurdle

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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!

Beating the Bullies – Anti-bullying Week 2014

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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.

World Prematurity Day 2014

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How time flies. A year ago I discovered – a day late – that November 17th marks World Prematurity Day; this year I’ve contributed to an event that will help bring awareness to this occasion. During the year I have joined a FB group that is dedicated to those babies who spent time in our local NICU and the stories of their survival against all odds are amazing to read. This morning, the support network run there for NICU parents, held a coffee morning for those currently living on the unit, which was accompanied by a board displaying photos of past NICU graduates, including G and M. The request was for “Then and Now” photos to share on the corridors of the unit to celebrate how far they have come and to give hope to those starting their journey.

The statistics are staggering. Around 15 million babies will be born prematurely around the world this year, 60,000 of those in the UK. In your average classroom of 30, there are likely to be 3 young people who arrived earlier than expected, some of whom will have slipped into a different year group and are now amongst the youngest in their year, rather than one of the oldest. In one way or another, these youngsters will have challenged the doctors and nursing staff who dedicate their lives to caring for preemies, continued to strive to grow and succeed and will go on to do much bigger and better things than was ever imagined at the start.

Mike and I will be forever grateful for the amazing care that was given to both G and M during their time on NICU and feel privileged to have met such wonderful, caring medical staff whilst we were there.

They’ve come so far since their NICU days

Just when you thought it was going to be easy…

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…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.

A Birthday Treat – Lemon Meringue cupcakes

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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.

National Chocolate Week – Part 2

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Despite arriving late to the delight that is National Chocolate Week, we have been lucky enough to receive another fantastically M-friendly chocolate product to try and then review. As I mentioned in my last post, Moo-free chocolate bars are a staple in the fridge at 7yearstodiagnosis HQ and this latest find might soon become another permanent fixture in our store cupboards.

I had never even heard of Sweet Freedom foods until I came across a stray comment on Twitter last month that pointed me in the direction of their allergy-friendly product, Choc Shot. This chocolate syrup is made in the UK from “Sweet Freedom® (natural fruit extracts; apples, grapes & carob), water, cocoa, rapeseed oil, natural chocolate flavour” and promises to deliver great taste for a low calorie and GI content. The website includes a wealth of recipe suggestions for using Choc Shot and I couldn’t wait to see whether it could do all that it promised. M tried it first, opting to have it spread sparingly on a piece of toast, a rare treat in our household. He liked the flavour, but didn’t love it, finding it quite rich and not overly sweet. I could quickly tell that it didn’t quite hit the mark here as he hasn’t asked for a second helping at all.

Mark: A tentative 7/10

However, I was keen to see whether we would fare any better if I used the Choc Shot to cook with and here is where this product really comes into its own. I decided to whip up a batch of my Canadian-style pancakes for pudding and chose to deploy the Choc Shot in 2 ways to see which worked best to satisfy my hungry hoards. The first lot was pancakes made with a generous helping of frozen forest fruits – think cherries, blackcurrants, grapes and blackberries, all the things G wouldn’t usually touch with a barge-pole – mixed into the batter and drizzled with Choc Shot to serve; the second round saw me incorporating both the fruit selection and the Choc Shot into the mixture to produce delicious-looking Chocolate and fruit pancakes. I dished them up and waited nervously for the reports of my discerning children. Two rapidly emptied bowls soon appeared on the table, accompanied by requests for more pancakes, even from G, who barely blinked when I told her what fruits were included in her dessert. I was delighted with this result, not least because the Choc Shot added a delightful chocolate flavour to the pancakes without making them overly sweet.

Mark: A resounding 10/10

The final test was to try the Choc Shot as suggested on the bottle itself – to make Hot Chocolate. I heated mugs of rice milk in the microwave, added a generous squirt of the Choc Shot and topped it off with some boiling water. The end result was fantastic – rich enough to feel indulgent, but not too sweet. It was quick to make and was, by far and away, the best M-friendly hot chocolate I’ve been able to make since diagnosis.

Mark: 10/10

I was impressed with Choc Shot and wouldn’t hesitate to recommend it to anyone looking for an allergy-friendly alternative for chocolate to use in cooking. It is readily available from most supermarket chains and is reasonably priced at around £3.50 a bottle.

*Disclaimer – We were sent bottles of Choc Shot and Sweet Freedom for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

National Chocolate Week – Part 1

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I’ve rather belatedly discovered that this week is National Chocolate Week and what better way to enjoy this amazing celebration, than to review 2 fantastic AND M-friendly chocolate products in my blog?

Tonight’s offering are the wonderful creations from Moo-free. I discovered this chocolate 2 or 3 Christmases ago, when I spotted it on the shelves of one of my local health food shops. The chocolate is vegan and soya free and is made using sunflower lecithin, instead of soya lecithin, which my hyper-sensitive boy reacts to, even in the tiniest of trace amounts.

The chocolate is rich and delicious and has become a staple of our fridge at home. They have developed their range over the last couple of years, which now includes the likes of Cheeky Orange, Minty Moo, Bunnycomb, Chocolate Drops and Cranberry and Hazelnuts bars to name but a few. Their seasonal offerings are equally impressive with Chocolate Santas, Chocolate Advent Calendars and a brand new Chocolate Selection box as well as Easter Eggs on offer at appropriate times in the year.

Moo-free were kind enough to send us the individual bars included in their Christmas Selection box and, needless to say, G and M were more than willing to taste-test each bar and give their marks out of 10:

Cheeky Orange

A lovely crunch and just the right amount of flavour

Mark: 10/10

Nice, but the orange flavour reminds me of medicine

Mark: 9/10

Minty Moo

Delicious, the right amount of crunch & an awesome flavour

Mark: 10/10

Not quite 10/10 as it tastes a little like toothpaste & I don’t like seeing the mint pieces

Mark: 9/10

Bunnycomb

Perfect crunch! I love it

Mark: 10/10

I loved it, great flavour and the perfect crunch

Mark: 10/10

Chocolate Santa

Nice, but I liked the flavoured ones more

Mark: 9.5/10

The flavour’s good and the shape is fantastic

Mark: 10/10

Overall family rating: 10/10

Both children enjoyed them all and are more than happy to nibble on whichever one is available. If they’re able to choose, then M would always go for the Bunnycomb as his favourite flavour, whilst G’s top pick is the Minty Moo. They are readily available in most of the big supermarket chains now, are reasonably priced and the choice is brilliant especially as it is all safe for M. I’m thrilled by the offer of a selection box this Christmas, the first time either of my children will have been able to enjoy this festive treat. You can buy these from some supermarkets or can find them on-line at Freefromforkids or other on-line stockists.

*Disclaimer – We were sent this selection of Moo-free chocolate bars for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

7 years to diagnosis

Searching for an answer

Tag Archives: Awareness

Round Two: the Pellet study and other adventures

Here’s to 2015

The First Hurdle

Merry Christmas!

Beating the Bullies – Anti-bullying Week 2014

World Prematurity Day 2014

Just when you thought it was going to be easy…

A Birthday Treat – Lemon Meringue cupcakes

National Chocolate Week – Part 2

National Chocolate Week – Part 1