National Chocolate Week – Part 2

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.

chocshotI 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

20141007_182950However, 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

20141017_122336The 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

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?

20140916_170227Tonight’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:

G M
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

20140916_170326

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.

Who feels like chicken tonight?

Who remembers that advertising slogan from 20 years ago?  I couldn’t quite believe it when I googled to see just how long it’s been since the “Chicken tonight” adverts first started being played on TV – 20 years and that song is still reverberating around my head as if I’d heard it yesterday.  For those who never had the joy of seeing these the first time round, here’s a quick sample to show you what you missed:

The reason that jingle came to mind is that I decided to attempt a M-friendly version of that other classic, Chicken Kiev.  My reason?  G read something in one of her books where the main character was sitting down to a dinner of Chicken Kiev and she had to ask me what the dish was.  I realised that, as a result of the multiple allergies we deal with in our household, there are several meals I remember from my childhood that G and M have never had a chance to try.  Chicken in any form is a meal they will eat, so I thought it might just be one they could both enjoy and something new to add to their repertoire.

As always, I searched around for an easy recipe and then converted it for the family’s dietary needs.  I always keep any left-over bread crusts or pieces in a bag in the freezer as they are perfect for making into breadcrumbs.  20141003_201701I’ve also used frozen wraps, which work similarly well when making crumbs and add a slightly different texture.  Everything prepped, I coated the chicken breasts, popped them into the oven and kept my fingers crossed.

The finished dish looked delicious and both children commented on how wonderful dinner smelt as they washed their hands and came to the table.  I served it with rice and a mixture of steamed vegetables the first time and with mashed potato (or sweet potato) the second time at G’s request.  The chicken was beautifully succulent and the garlic butter oozed across the plates as the children cut into the Kievs.  Both plates were quickly emptied and G and M have asked me to prepare it again soon.

The Message from “My Man” at the BBC

Three weeks on from that episode of the BBC’s hospital drama, Holby City and I’m still reeling from the amazing response to my blog post and the unexpected bonus of two phone-calls with series producer, Simon Harper.  When I penned my heartfelt response to what Mike and I had watched on-screen, I expected to reach a few more than my usual readership and dared to hope that I might beat my previous “top score” of 186 readers in a 24-hour period with my letter to our local hospital.  I never dreamed that over 2,000 people across the world would read, comment on and share that plea for responsible portrayal of chronic illness in the mainstream media.  As well as sharing my thoughts through my blog, I made a formal complaint to the BBC and, through the wonder of Google, managed to track down Simon Harper and sent him an e-mail, expressing my concerns about the inaccuracies about EGID portrayed in that episode.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

I didn’t expect to hear anything back, so you can only imagine my surprise and absolute delight when Simon not only replied to my e-mail, but also offered to pick up the phone and discuss the matter with me.  We agreed a day and time to talk and I spent the week making notes and talking to fellow EGID parents through FABED and other on-line forums to get their points of view on what I needed to raise in my conversation.  That first phone-call lasted for around 30 minutes and at no point did I feel that Simon was keen to close down the conversation and finish the call,  He was genuinely interested in learning more about EGID and understanding why this episode had caused such distress in the on-line community. We spent a long time discussing the difference between “intention” – what the program was trying to portray – and “perception” – what the viewing public understood – when it comes to producing a drama for television viewing and here Simon explains it in his own words:

The intention: “the guest character’s general allergies were a dramatic smoke screen to the actual underlying cause of his pain, neuralgia – but that in no way were those allergies supposed to suggest a condition as specific and, as I now know from talking to you, severe as EGID.  In no way was the story supposed to say that EGID was in fact just neuralgia!“.

The perception:I think it comes down to one scene where Zosia (the doctor) mentions that Nigel’s eosinophils are up –  due to his general allergies – and she then goes on to mention “his eosinophilic gastro-enteritis”.  What I can see maybe wasn’t clear was that Zosia, excitedly bandying round theories and possible prognoses at this stage of the story, is in fact supposed only to be raising EGID at a possibility at that moment.  perceptionA possibility that, in fact, turns out not to be the case.  But I can see that the phrasing “his” – combined with the fact that dramatically speaking, we never see Zosia rule out EGID (a moment we assume happens off-screen) – could have given the wrong impression.  It’s a tough call with medical drama – you never play on-screen every single beat of medical treatment that would happen in real life, choosing the moments which best serve the story,  and sometimes rely on the audience’s imagination to assume and deduce. It’s a delicate balance, and there is definitely a lesson to be learned here, because evidently, missing out that moment has in this case given the wrong impression.

I also mentioned my concerns that a range of inflammatory bowel diseases had appeared to be ruled out through a simple ultrasound, whilst those of us living with this family of illnesses know, from our first-hand experiences, that endoscopies, colonoscopies and biopsies are the only reliable ways to confirm a final diagnosis.  The conversation ended with an agreement that Simon would spend time investigating what research was done, talking to the consultant concerned and checking out the ultrasound situation before phoning me back a week later to talk some more.  I was struck by his commitment to unpicking where and how things went so wrong and have to confess to being cheeky enough to send another e-mail, thanking him for his honest discussion with me and pointing him in the direction of various EGID websites, so that he could truly understand what our families deal with on a daily basis.

A week later and that second phone-call happened.  Another 30 minutes valuably spent clearing up those outstanding points, including his agreement that the discussion regarding the ultrasound came across as far more definitive than was their intention.  I have to say I’m impressed with the research into EGID he had done during that week and appreciate that he took the time to properly review the research done originally for the program.  Finally, and definitely most importantly, he has sent a huge apology to our EGID family and I truly believe it is a heartfelt one.

apology

Courtesy of psmag.com

I repeat,  I  am absolutely aware that despite all this, an upsetting impression was given due to the way EGID was referenced and never ruled out on-screen and there is absolutely a lesson to be learned there for the future.  I can’t undo any upset caused, I realise, but do so hope I have been able to reassure you that we take the medical research aspect of HOLBY with the utmost seriousness and that in this instance, it truly was not an instance of inaccuracy, but, I think, a point of clarity that had an unforeseen impact on how the story came across.

 I truly have enjoyed our conversations, as not only did I get an education on the condition that  your son,  you, your family and many others are so courageously living with, but, as a producer, it is always absolutely invaluable to get insights on how our story intentions actually translate to an audience member –  that gives us great help in the way we tell our stories for the better to make HOLBY an entertaining but hopefully also stress-free hour!  And I do hope that you will continue to watch and enjoy the show.

A big thank you to Simon Harper for his willingness to be open and honest about the research done for this storyline, the errors of judgement made in the production, to talk to me not just once, but twice and his apology for the upset unintentionally caused.  As one of my fellow EGID Mums asked (and I wholeheartedly agree):

Any chance they’ll get Mr Allergy (grrrrrr) back and do a proper episode on EGID?

Simon, I wait for your answer!

“Out of difficulties grow miracles” – Jean de La Breyere

stormyThese last few months have been, well, interesting; and yes, that’s one of those euphemisms you use when you really don’t know how else to explain what’s been going on.  In many ways life was reduced to a whole new level of hell in our household; one that I’ve hesitated to discuss because of the nature of our experience.  Sometimes I need to delay publishing my posts to give us all time to process what we were dealing with before revealing it to the outside world, to allow the storm to pass and to let those memories start to fade.  Now, I’m – we’re – finally ready.

The reason for it all has been M’s ongoing issues with his bowel.  When the pellet study was done a year ago at our local hospital, the x-rays indicated that he had developed what is termed “mega-rectum” and “mega-colon“, caused in all likelihood by ongoing and previously undiagnosed impaction.  The priority at the time was to clear out his system and keep it clear, but unfortunately, for reasons still unknown, M has limped from one bout of constipation to another over the last 15 months.  The constant flow of problems has taken its toll on the whole family, but most noticeably on M, who is finding it tough to be positive when he feels that nothing is making a difference.

Our first meeting with our local consultant led to a long discussion about what, if anything, we could do to try and ease this problem and how we could help M’s bowel to recover.  He suggested a course of treatment that sounded extreme, but which he felt would encourage this troublesome body part to start to repair and would therefore hopefully alleviate some of the issues.  He proposed starting M on yet another laxative, called Bisacodyl, which would be administered by a daily suppository each evening.  This would cause an immediate response, thus reducing the likelihood of ongoing impaction and hopefully M’s bowel muscles would eventually recover some of their elasticity.  This treatment was not to be a long-term one and we would start doing it daily for just 4-5 weeks before being assessed in clinic again.

willowtreeOf all the medicines that M has endured over the last 3 years, this is, by far and away, the worst one we’ve had to put him through.  Day 1 was tricky as he was incredibly nervous and had no idea what to expect.  The subsequent week was hell and the nightly battles as I gave my boy this medicine accompanied by his incessant crying and pleading took an almighty toll on the family.  Job being done, a nightly cuddle was needed to reassure and comfort us all.  Due to unexpected problems during that first week, M experienced a heavy bleed and we were advised to take a week’s rest before restarting and finishing the course of treatment.  Unsurprisingly that was even more difficult to do, in fact almost impossible, but we persevered and carried on until our next appointment.

Mike and M had their hopes pinned on the medicine stopping then, I was slightly more sceptical and sadly I was proved right.  There had not been sufficient progress in that 5 week period for our new consultant to be satisfied and he wanted us to keep going until the start of the school holidays.  At that point, he asked us to double the dosage, administering the medicine both morning and evening until we flew to Florida.  I think that everybody’s heart sank at that point, although M cheerfully focused on his idea of a silver lining – he got to stop taking the Senakot, which was his least favourite medicine and that it would all stop as soon as we got to Florida.  How we got through those 8 weeks, I really don’t know and I hate knowing that we might be told to restart the medicine again in the future.  Worst of all, we won’t know whether this treatment has been of any help for a while yet, which is discouraging, but we will continue to keep our fingers crossed and hope that out of that difficult time, we really will start to see small miracles grow.

hope

The Great ‘Flu Vaccination Debate

fluIt’s that time of year once again, when the NHS starts talking about ‘flu vaccinations and those of us with chronic illnesses – or who fall into one of the other qualifying categories – attempt to book our appointment before winter’s half over and we’ve already been laid low by the ‘flu.  Somewhat astonishingly this year, both my GP’s surgery and I were quick off the mark in being organised and by mid-September, not only had my appointment been booked, but I’d also had the injection itself.  They had checked my medical records and found that it didn’t appear that I’d ever had the pneumo-vac, which led to the unexpected double whammy of a needle in each arm during my 5-minute appointment.  The only years I’ve not had the ‘flu jab in the past 29 years of my T1D life were those when I was pregnant and that was down to personal choice.  My one experience of the ‘flu, caused by an inability to get an appointment before November, saw me laid low for the best part of 2 weeks by a bad bout of the ‘flu and Mike and my Mum were let to rally the troops on a daily basis.  For me, the ‘flu jab is not an option – its a necessity.

Since having M’s diagnosis with EGID and learning more about the long-term nature of his condition as well as knowing firsthand all about life with a chronic illness, I started to investigate whether he should also be having an annual ‘flu vaccination to help keep him healthy.  Our GP offered no opinion on whether he should have it or not, though he was more than happy to agree if we wanted to go ahead, and our GOSH consultant thought it a good idea, but something that needed to be actioned by our GP.  It quickly became evident that Mike and I would be the ones making the final decision and so the hard work began.  I started researching the pros and cons of the vaccination for M, but with one thing and another, including his admission to GOSH for more scopes, last year just passed us by and as we had survived the onslaught of winter colds and bugs reasonably well, I shelved the idea for another time.

Courtesy of blog.fromyouflowers.com

Courtesy of blog.fromyouflowers.com

This autumn has sneakily crept up on me and with its arrival has come the need to revisit that discussion and make our decision.  One of my main concerns was M’s egg allergy as the vaccines given are grown in hens eggs, which can cause an allergic reaction and that is something we need to avoid given M’s delicately balanced state of health right now.  However, reading more on the subject (and trust me there’s a lot of information out there), the fact that M does not suffer with anaphylaxis, but rather a delayed reaction to egg combined with the availability of ‘flu vaccines with low or no egg content, I was reassured that it would be safe to give it to him.

Next I needed to consider whether to insist he has the traditional injected vaccine or if we should try the new nasal spray vaccinations, which are currently being rolled out across the UK for all children under 4.  Whilst the nasal spray would certainly be easier to administer, the current NHS recommendations are that this is not given to children with a known egg allergy as there is simply not enough evidence to conclude whether it is safe or not.  Much as I feel M needs to be protected against the ‘flu, I am not yet prepared to take an unnecessary risk whilst there are still alternatives available.  We are struggling with his EGID at the moment anyway and adding an unknown to the mix could lead to repercussions that could affect us all for months.

dateSo, it would appear that the debate has been settled.  I have requested with our new GP that M is given the ‘flu vac and am waiting for the phone-call back to confirm that a low/no egg vaccine has been delivered to the surgery.  Fortunately, M is astonishingly stoic about having injections, so I’m confident that he will take it with the minimum of fuss – it would be a whole other story if the child in question was G, but luckily we don’t feel she needs to have it too for the time being.

A Chocolate-Lover’s Birthday

Recently someone posted a link to this easy cake recipe on one of the EGID support group forums I belong to on Facebook.  I was soon drawn to its simplicity, not least because it was already dairy-, soya- and egg-free, but also because the comments that followed suggested it could be easily converted to a gluten-free recipe too.  What was even better was that I had the perfect occasion to try the recipe out – my Mum’s birthday.  As you may recall, we had planned a special afternoon tea at the Grand Floridian whilst we were on holiday, but the actual date was now approaching and we had a family lunch booked for the day itself.

chocsI think it would be fair to say that my Mum is an avid chocolate-lover, one might almost say a chocoholic and there used to be a time when you’d be hard pressed to find her without an emergency chocolate bar stashed in her handbag, glove box or on the top shelf of the fridge.  Bearing that in mind, it was something of a no-brainer to decide on a cake that would satisfy her idea of chocolate heaven.  The bigger challenge was in making that creation both deliciously decadent and M-friendly.

20140912_225331I doubled up the quantities in the chocolate crazy cake recipe and chose to mix the ingredients in a bowl, rather than in the cake tins themselves as I wanted to make 3 individual layers to sandwich together.  I replaced the flour with a blend of rice and tapioca flour and added a pinch of xanthum gum to help it on its way.  The cakes that came out of the oven appeared to be beautifully moist and not too granular, although Mike’s first comment on tasting some of the trimmings was that they were a lot sweeter than my usual bakes.  I swirled vanilla butter-cream icing with spoonfuls of Grandma’s strawberry jam (all the way from Canada) and used this to sandwich the layers together.  Lashings of home-made chocolate butter-cream icing then covered the entire cake, before I finished it all off with a generous sprinkle of pearl drops, moo-free chocolate buttons and shavings of moo-free orange chocolate.

It looked like my idea of a chocolate-lover’s dream birthday cake and tasted good too.  My Mum thought adding raspberries would have added a little sharpness to cut through the sweetness of the chocolate, but there wasn’t much left after her meal, which is always a sign of a good bake!