Tag Archives: allergic reaction

And that’s a wrap

I don’t know about you, but I frequently find that mealtimes can get a bit repetitive, especially when we’ve had to cut yet another staple from M’s diet. Much as I love to cook and bake, sometimes I really, really hate having to decide what to prepare for dinner. Add into the mix the need for packed lunches on a daily basis, which are generally formed of the same key ingredients due to a restricted diet and I end up pulling my hair out in desperation. M’s recent longing for a prawn mayonnaise sandwich meant that I had to seek inspiration and work out whether it was possible to create something even vaguely similar or not.

The easy bit, believe it or not, was the prawn mayonnaise. Using a squirt of some Really Not Dairy original mayonnaise, a dash of Heinz tomato ketchup and a generous serving of prawns, I was able to whip up a reasonable prawn cocktail. I diced a chunk of cucumber, grated some carrot and threw a handful of sweetcorn in to add a couple of portions of vegetables to the filling too. This mayonnaise is egg-, dairy- and soya-free and tastes more like salad cream than traditional mayonnaise, but it does the job and has been a great find for M.

Next came the more challenging aspect, the bread. G is able to enjoy Genius bread, which is the best gluten- and wheat-free bread we’ve tried, but unfortunately it contains both egg white and potato starch which are now excluded from M’s diet. M’s sandwiches are usually made from Sakata rice crackers as his bread is really only edible when toasted, but these are small and don’t lend themselves to being a critical part of a prawn mayonnaise sandwich! Mike and I both enjoy eating wraps, either for lunch or filled and baked for a Mexican inspired dinner and at last year’s Allergy and Free From show we stumbled across the amazing Bfree gluten-free wraps. These taste delicious and both children enjoyed them whilst we had some. Unfortunately, they are incredibly difficult to source in the UK, though most larger Asda stores do stock them now and I headed to our nearest shop with my fingers tightly crossed to see if they were available.

Part of my regular shopping routine, even when buying foods that I’ve bought before, is to scan quickly through the ingredients list for anything that isn’t M-friendly. Recipes do change, even on tried and tested products, so it’s worth those few extra minutes to avoid days or even weeks of pain because of a missed offending food. To my dismay, I noted that the wraps contained potato starch, which is now a forbidden food for M and I thought my chances of buying a good alternative to satisfy M’s cravings were over. I went home and even attempted to make some M-friendly wraps, but the rice flour didn’t lend itself to the recipe and the kids understandably turned their noses up at the finished product that was presented to them.

It was a couple of weeks later when I was in our local Waitrose, that I spied a new-to-me package on their free-from shelves, Newburn Bakehouse gluten-free wraps. I picked it up to cast my eye over the ingredients, fully expecting to find either egg or potato flour or both lurking there, but to my delight, this new product contained nothing that wasn’t M-friendly and I quickly snapped up the remaining pack to take home and try.

I prepared M’s lunch using one of the Newburn Bakehouse wraps and a generous spoonful of my home-made prawn mayonnaise and called him to the table. He was overwhelmed to see his much longed-for sandwich waiting for him and made short work of devouring it all. He relished every bite and, what’s more, requested a second wrap, something that doesn’t happen all that often in our household. The wraps looked and tasted good and, with 3 to a pack, there was enough left for his school lunchbox on Monday. Both M and I award them with a much-deserved 10 out of 10 – a great product, delicious to eat and suitable for a MEWS-diet, what more could a Mum ask for?

Banana bread to rival the Godmother’s!

4 Replies

Courtesy of minionslovebananas.com

As part of our recent plan to given M a substantial bedtime snack, M and I sat down to discuss what sort of foods he could choose from before bed. I originally proposed a bowl of cereal or a couple of slices of toast, but quickly learned that this caused M no end of confusion. Sometimes M struggles with his understanding of the world, can take things a little too literally and is very much a creature of habit. Unexpected changes to his routine have been known to throw him for a loop and cereal at bedtime proved to be one such thing. M very much associates cereal with breakfast and just couldn’t grasp that it would be okay for him to have it again later as a snack. No amount of patient explanation would persuade my obstinate lad to change his point of view and so I gave in to the inevitable, abandoned that suggestion and hunted around for some “acceptable-to-both-of-us” alternatives.

We agreed on a few staples from the fridge and the store cupboard including Wot no Dairy! yoghurts, Frank* bars and Nakd bars, but I wanted to add something new to the equation too. Thinking hard, I remembered that M had been requesting banana bread for a while and I wondered if I could once again find and adapt a recipe to satisfy this craving. Around 4 and a half years ago, one of M’s godmothers, L, looked after him for an afternoon whilst I was at a check-up at our local eye hospital. I’m not sure she’ll even remember the occasion, but M certainly does, predominantly because that afternoon they baked banana bread together. This banana bread has gained a position in M’s memory as the best, most delicious banana bread in the whole wide world ever and nothing has ever compared, or even come close. He talks about the amazing smell and delicious taste, whilst the rest of us have, I have to confess, pretty much forgotten all about it,

My challenge, therefore, was set. To create a loaf of banana bread that not only met M’s current dietary requirements, but that also needed to equal the memory of L’s bake all those years ago and I was ready to give it a go. I found a relatively simple recipe, adapted it to suit and set about whipping up my masterpiece. The smell of baking banana bread tantalised both M and G, who were forced to wait patiently until bedtime to sample it.

Our kitchen was silent as they took their first, and then subsequent bites and Mike and I waited nervously for the verdict. G declared it instantly as the “best thing she’s eaten, ever” and was full of praise. M was a little more discerning in his comments. My banana bread was great, as the empty plates in front of my children attested to, BUT it comes a very close second, as L’s still tops the rankings in his opinion. So L, if you’re reading this and have even the vaguest recollection of that now infamous banana bread and the recipe you used, please give me a clue, so that I too can bake the “Best banana bread in the world”.

New year, New plan

3 Replies

The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team. Mike and I had our list of queries drawn up and were determined not to leave without some answers. Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer. It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner. My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds. We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all. I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy. This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it. We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months. He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet. Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation. We’ve now got 2 more to add to the daily regime: Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition. If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones. So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all. I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian. She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms. We agreed to tackle the 2 that he has complained about when suffering from reflux. His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed. So, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries. Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped. We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet. It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.

A Pizza Express birthday

6 Replies

The first day of December heralds the start of the busy season for most, but an especially hectic time in our household. As well as the much-awaited day itself with all the associated celebrations at school, work, choir and church, we also have to fit in a 10^th birthday and a wedding anniversary. This weekend we got the ball rolling in fine fashion with an early birthday celebration for G.

Whilst G is most definitely a December baby, this year other commitments near her birthday led to my decision to throw her party early and sneak it in at the end of November instead. The first discussion was about the format her party was going to take. G was keen to combine cooking or baking with a sleep-over. I was less keen. The prospect of organising a group of near 10 year-olds (and two 7 year-old boys) to prepare, cook and possibly decorate a selection of M-friendly foods lacked appeal. Add in M’s inability to settle and sleep at the moment and I could see that it was more likely that full-scale battle would break out, rather than the joyous birthday celebrations G had in mind.

Thanks to some wise words from Canadian friend F, I found the perfect solution – a pizza-making party at Pizza Express. Now I appreciate that throwing a pizza party for a child with wheat- and dairy-intolerances and her multiple food-allergy suffering younger brother sounds somewhat off the wall, but thanks to the gluten-free menu introduced by Pizza Express earlier this year, we knew it was a viable option. We discussed our requirements with our local restaurant and were reassured that both children could participate fully and work around their dietary restrictions.

The date was duly booked, invites sent, travel arrangements made and finally the day dawned. Following our prompt arrival at the restaurant, each child was given an apron and hat to don before their starters of garlic dough balls and a side salad were served. Thanks to the information provided by Pizza Express, I was fully equipped for all eventualities and the chef was able to lightly toast 4 slices of M-friendly bread, which was served with garlic butter that I had prepared at home.

Next the task of making the pizzas themselves. G, M and their friends were given a ball of pizza dough each and were then instructed in the art of rolling, pressing out and filling the pizza pans. The children had varying success with their pizza bases, but eventually, after a couple of false starts, everyone had a base to be proud of. They were then given a selection of toppings to add before their pizzas were baked in the ovens. G and M were able to take full part in this, preparing pizzas for Mike and me to enjoy.

Stretching and fitting the dough to the pan

Adding the GF tomato sauce to the base

Once these pizzas were ready to be cooked, G and M were then given the opportunity to make their own lunch. Our party host was fantastic and explained just how Pizza Express make sure that their GF options are kept safe from the risk of cross-contamination in their kitchens. The GF pizza bases are pre-made and kept in separate storage as is the GF tomato sauce for the base and they use different pizza pans to cook the GF pizzas, which are easily distinguished from the normal ones. I had brought our own supplies of grated goats’ cheese for G and chunks of Violife vegan cheese for M, which is both dairy- and soya-free.

G’s with goats’ cheese and ham and M’s with black olives and Violife cheese

We finished the meal with a small portion of ice-cream with various toppings they could add at their discretion. Once again I had been able to bring with me a tub of Booja-booja chocolate ice-cream for G and M to enjoy and was thrilled to discover that the Pizza Express toffee sauce was safe for them too as the party host had made the effort to check the detailed allergy listing for all their products and could reassure me that it was safe.

A game of “Pin the moustache on Paulo” entertained them whilst the pizzas were cooking

All the children had a wonderful time and we were hugely impressed by the attention to detail that PIzza Express makes to ensure that their allergy-friendly options remain safe, even down to serving G and M’s pizza on separate platters to once again ensure no cross-contamination occurred. It was a real treat to be able to offer a “normal” birthday experience to G and for them both to enjoy the birthday celebrations with their friends.

Our charity needs YOU!

A little act of thoughtfulness

Whirlwind week

1 Reply

Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made. Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky, assumed that instead we were looking at a date in the middle of November.

Courtesy of telegraph.co.uk

A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes. I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered. We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic. She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive. We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.

However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).

Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M. S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date. All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.

And then last week, the whirlwind hit. Hold on to your hats, this could be a bumpy ride.

Courtesy of m.flikie.com

Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned. No time to confirm what the position with our local hospital was, that will have to wait until Monday. Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!

Weekend – Confirm arrangements for G. Mum not away that week, so G can stay with her and stick to her normal routine as much as possible

Monday 10.45am – Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case. Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising. Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.

Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not). Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.

Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not. Someone will call tomorrow to let me know.

Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news.

Tuesday 12.45pm – Still waiting to hear

Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.

Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse. She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!

Tuesday 5.15pm – ARRRRGGGHHHH!!! Appointment cancelled as GOSH can’t find him a bed for the week. Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date. They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.

Tuesday 6.30pm – You really, really couldn’t make this stuff up! Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on. Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday. She will phone tomorrow to confirm all details.

Courtesy of telegraph.co.uk

Wednesday 11.45am – Hurrah! Get the champagne flowing, we have lift off. Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left. S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday. I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.

Now, I’m off to work out what we’ll need and how we’re getting to London next week.

The Allergy & Free From Show North, Liverpool

School’s out for summer!

2 Replies

I have that song by Alice Cooper bouncing around in my mind as I type. I wish I could have it playing in the background as you link to this blog post, but the best I can do is point you to this You Tube clip.

We’re in the final stretch of the school year and the end is tantalisingly close. G finishes school tomorrow and M has one last day on Monday. The promise of 6 weeks of summer (well I can but dream) to enjoy is wonderful. A time for us all to rest, recuperate, have some fun and hopefully see M return to better health for the start at his new school in September.

The last 2 weeks have been mixed.

Courtesy of telegraph.co.uk

Last weekend, Mike took the kids away on a “Dads and Kids” camping weekend, organised by other Dads in our church. The weather was amazing, they had a great weekend, got to build on some fantastic friendships and I got to have a weekend off! I wish I could say I spent the weekend doing nothing but relaxing and spoiling myself, but the reality is that I spent the weekend catching up on some long overdue household chores – ironing in this temperature is no mean feat – and trying to stay cool.

Courtesy of export-forum.com

Unfortunately, M’s hoarse throat on Friday afternoon turned into, well, I’m not 100% certain what it turned into, but it might have been croup or a heavy cold or a chest infection or any combination of the above. By Sunday evening, his temperature had shot up to over 39 °C and that started 3 days of a very poorly M. He had a sore throat, high temperature, complete loss of appetite, croup-like cough, no energy to do more than sit and watch TV and felt sick every time he took his new medicine.

The problem is for M that he just has no reserves to fall back on when he becomes ill. His body can’t cope with the illness and his EGID symptoms will typically flare too. He has, however, headed back to school today; the lure of the Year 2 leavers’ disco after school being too great for even my poorly boy to ignore. It is such a shame that he has missed 3 days off this week as he moves on from the school at the end of term and will miss his friends.

Courtesy of yola.com

Our plans for the summer holidays are simple. Mike and I will spend most of our weeks working, whilst G and M spend some time with my Mum. We are off to Portugal for a week once again and I’m already beginning to plan what foods I will need to take with us. The time I have at home will be spent playing in the garden, investigating our local area and trying out some new baking recipes that I’ve been given by friends. Most importantly, we will be trying to encourage M’s body to recover and hopefully see a return of his appetite. The hot weather at the moment isn’t helping, but I would love to see him eating as much as he was even a fortnight ago. We don’t have any return visits to GOSH planned until October, but I will be putting in another call to the gastro team this week to see if there’s anything else we should be doing or if they do want to see him ahead of the next appointment.

Most importantly, my plans include ice lollies…lots and lots of M-friendly ice lollies!

Courtesy of lovefood.com

The psychiatrist’s couch

7 Replies

The thing about blogging is that, as well as sharing our experiences with others and maybe helping those who are facing similar journeys, it has become a form of cheap therapy for me. I can pour my heart out into my words, delete those that needed to be said, but not shared and publish the rest for the world to see and comment on. For those of you who know me well, you will understand that I’m not very good at sharing when I’m struggling with life, even to my nearest and dearest, and yet I can express my emotions through a few deft strokes on the keyboard almost without pause.

My Mum, who I know will be reading this and rolling her eyes (and yes, the phone-call will come later), frequently says she doesn’t understand the need to share everything with the world at large which so many of us do these days, be it through blogging or social media such as Facebook or Twitter. Is there an easy or obvious answer to that why? I can’t comment on why others share the most intimate details of their mundane lives, but I know why I do it. I have a story to tell and life experiences to share. When I started my blog I couldn’t anticipate how many people would read and follow my musings, but as I approach the 2,000th view of my blog, I am flattered that people have read something that has resonated with them. I know that some posts will be far more therapeutic for me than interesting for you, my reader, and I thank you that you’re prepared to bear with me and keep on reading.

The rest of today’s post is very much in that vein as life with M is proving difficult right now and I need to lie down and share from the psychiatrist’s couch.

Since M’s relapse back in April, we have been waiting for his system to settle and for things to improve and return us to where we had been at the start of the year. Our GOSH appointment in May had reassured us that his gut would repair and they spoke positively about the possibility of trialling one of his forbidden foods and even reducing his medication over the next 6 months.

Unfortunately, life hasn’t turned out that way and instead we are caught in a downward spiral and seem to be sinking fast. Our weekend at Legoland was a real step back to where we had been and much nearer the beginning of our journey then we were happy to be. As well as the return of multiple soiling accidents with chronic diarrhoea, M has suffered from stomach cramps, overwhelming tiredness, fluctuating appetite and blood in his stools. He is obviously struggling with his emotions and frustrations and is just generally out-of-sorts.

My conversation with our ever-wonderful dietician last week confirmed my inclination to speak to M’s gastro team as we really need to get him back on track. I was worried that we would be asked to remove something further from his already restricted diet, but the registrar told me that that wasn’t the way forward right now. Instead, we are introducing another medicine into the mix to try and suppress the reactions he’s experiencing and are being sent to our local hospital for an abdominal x-ray.

There are no easy answers to this problem for the time being. We don’t know why his small body has gone back into hyper-drive in response to the food allergies and we are feeling helpless in our inability to regain some semblance of control. If the x-ray is clear, which we’re expecting it to be, then the next logical step is another set of scopes, but that isn’t an easy decision to make because of M’s problems with anaesthetic. We also know that we still haven’t removed the possibility of moving M to the elemental diet from the table either and that seems like a daunting prospect.

The one thing I have learned from the wonderful families we met through FABED is that we’re not on our own and that however hard the next step might seem to us, there will be somebody else out there who has walked that path before us and will hold our hands along the way.

What’s more, a cup of tea or coffee and a chance to escape the EGID world, even for half an hour, is great therapy too.

7 years to diagnosis

Searching for an answer

Tag Archives: allergic reaction

And that’s a wrap

Banana bread to rival the Godmother’s!

New year, New plan

A Pizza Express birthday

Our charity needs YOU!

A little act of thoughtfulness

Whirlwind week

The Allergy & Free From Show North, Liverpool

School’s out for summer!