Tag Archives: Awareness

Perfecting Christmas stuffing

With Christmas now less than a mere 3 weeks away – and counting – our preparations are in full swing. Christmas lists have been created; letters to Father Christmas written; Christmas cards written and very nearly sent; presents bought, wrapped and squirreled away until the tree is up; and my attention has now turned to the small matter of the food.

Courtesy of mirror.co.uk

A couple of weeks ago, I was given the job of cooking a Sunday roast for my Aunt whilst she was staying with Mum. As I prepared the chicken and veg, I felt a sudden desire for stuffing to accompany the meal. I have fond memories of delicious home-made stuffing on Sunday lunch-times as a child and realised, with a pang, that G and M would have no such recollection due to their food allergies. As a family, stuffing disappeared from our table two and a half years ago when M first started on his MEWS-diet. It has made the occasional reappearance at Christmas for us adults, but never in a M-friendly format.

Inspired by the pleasing aroma of chicken seasoned with sage that was drifting from the oven, I decided then and there to find a recipe for stuffing that I could tweak to meet G and M’s food requirements. I sourced a vegan recipe for Sage and Onion stuffing and set about pulling the necessary ingredients from my Mum’s cupboards to start the mixing process.

M helped create the perfect breadcrumb

Despite my fears that this would turn out to be an unmitigated disaster, the final outcome was delicious. Sadly, I was unable to convince G to even try a tiny morsel, but M set to with gusto. He enjoyed the flavours, though he complained it contained too much onion for his tastebuds. My final recipe can be found here and I am hoping to add recipes for other varieties for Christmas as I try them at home. It was a great result for a Sunday morning’s work and I’m looking forward to tweaking more recipes to accompany the Christmas turkey. The only question now is which one to adapt first – Chestnut, Sausagemeat, Cranberry or maybe all 3?

Unfortunately, I forgot to photo the final product and we ate the lot, so you’ll have to be satisfied with a photo of the pre-cooked version!

A Pizza Express birthday

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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.

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Play-date anyone?

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It is amazing how something so simple can make such a big difference to a small child.

As M started a new school this September and is still getting to know the children in his class, we decided to invite a new friend home for tea after school. M chose C, another child who’s new to the school. I ambushed his Mum a couple of weeks ago to broach the subject of whether he’d like to come home for a play, eventually got round to passing on my contact details and finally settled on a day.

Courtesy of gsapublishing.com

This Tuesday I left work promptly to make sure I was in the right place at the right time to pick up M, C and G. The weather held so they could all burn off their energy and excitement by bouncing on the trampoline and tearing around the paddock like wild things. I chuckled quietly to myself as I heard the 3 of them discussing the ghosts in our house and heard C promising that he would bring back his ghost-detector from home once he’d fixed it – a child with an imagination to match M’s, I thought. I fed them everything-free fish fingers, potato wedges and a variety of veggies determined by the preferences of each individual child. We even survived M having a soiling accident and successfully changed him without C being aware it had even happened.

Nothing particularly out-of-the-ordinary or revolutionary, you might be thinking and you’d be right. The bit that made all the difference came when C’s Mum came to pick him up.

“Thank you so much for having C home for tea,” she said, “he’s the happiest I’ve seen him since we made the move.” And then she uttered the magical words, “Would M like to come home to ours for a play-date next Tuesday after school?”

Before I’d even had a chance to reply, she continued “I can cook just plain chicken drumsticks with vegetables for them for tea, or you can pick him before tea if you’d prefer.”

This woman, who has swiftly become a new friend, had unwittingly just rocked my world. In the last 2 years, since we embarked on our free-from journey with M, he has been home to friends’ houses just twice. The prospect of feeding my food-intolerant child was too daunting to so many of the Mums I’d got to know during M’s first year of school that they just stopped inviting him back after school. One Mum had even told M three separate times that she’d talk to me about arranging a day and what he could eat, and then never bothered to make that effort. Needless to say, that was a friendship that quickly fizzled out as M couldn’t understand why the promised invite never came.

So, for someone who’d known us approximately 5 minutes to take M’s situation and tricky diet completely in her stride and willingly offer to have him home from school, has felt like a real blessing. We’ve got to iron out a couple of wrinkles that are playing on M’s mind – chiefly his medicines and the whole “what if I have an accident whilst I’m at C’s house Mummy” concern – but I’ve got those sussed and I think M is reassured that every eventuality is covered.

Which leaves my 7-year old eagerly anticipating the opportunity to fix the broken ghost-detector – “though I’m not entirely convinced he’s not just making the whole thing up Mummy” – and me as one happy Mummy.

*I’ve just found this article “I’m not neurotic, my kid has food allergy” which helps you understand even more about how important this sort of compassion can be to a family supporting a child with food allergies

Viva Portugal – and our answer on a postcard!

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Courtesy of mapsof.net

Preparing for this summer’s holiday to Portugal went well as we completed the Pellet study with M and I finally answered the question of how to carry all of M’s medicines and foods without paying for an extra bag. So, all I needed to do in the last two days was pick up our holiday money, pack the suitcases and speak to GOSH about the test results from the abdominal x-ray.

Needless to say, the first two list items were quickly ticked off and I even managed to fill the extra suitcase for M without forgetting anything essential. Tracking GOSH down and speaking to them sensibly took a little longer. I was anxious to discuss the results of the Pellet Study and what the next step was before we went on holiday, especially given that M’s move up to his new school was imminent soon after our return. The registrar I finally spoke to on the Friday morning had a real mix of news for me.

The good news was that the x-ray showed that M had passed most of the radiopaque markers – his x-ray was a mix of images 1 and 2 – which suggested that there was no real issue with his gut motility. The bad news was, that despite 12 days on an increased level of Movicol, M was still heavily impacted. What wasn’t clear was whether we had ever successfully emptied his bowel or if he had become re-constipated during the 5 days he was not taking the Movicol during the study.

The next decision was not an easy one to make, especially with a week abroad on the horizon. We had to continue with the Movicol, taking 4 sachets daily for the week we were away, which would hopefully keep things moving and empty his bowel out as was so desperately needed. Both the registrar and I felt it was likely that the 4 sachets would be too much for M’s system, but we really had no other choice and reluctantly I agreed, with a follow up phone-call planned for the first Monday back home. Into the suitcase went the required sachets and extra packs of pull-ups to see us through the week.

Despite the challenges we knew this would bring, we were determined to enjoy the much needed break and the sun. We set off with plenty of time to spare “just in case”, breezed through check-in and customs, survived the 2 hour wait to our flight and eventually landed safely in Faro. An hour’s taxi ride to the resort, a quick late night tuna pasta dinner (courtesy of the supply suitcase) and we were into bed for a good night’s sleep before our holiday started properly.

The week was amazing. The kids loved every moment of both the beach and the pool and we were all amazed at how much their confidence had grown in the last year. M revelled in splashing about and jumping waves, which was something he wouldn’t do the first time we went just 2 years ago. He was also brilliant at wearing a pull-up under his swimming trunks to avoid any unwanted problems in the water. It was far more challenging to change him because of the combination of damp bodies, tight-fitting pull-ups and wet trunks, but we survived it.

He had his moments and we had a couple of major melt-downs as he let out his frustrations about his condition and all that was going on. Unfortunately, Mike suffered the brunt of this as he’s not usually the one on-hand all day, but he survived it too. The upside is that it gives more ammunition and examples to pass on to the CAMHS team when we see them later this month to argue the case for M needing more support to cope with his emotional and psychological well-being.

M’s trusty friend “Cat”, came on holiday with us and the maids made M smile by dressing him in M’s pjs

We even managed our meals. This year we chose to eat breakfast and lunch in our apartment every day, rather than venture to the breakfast buffet provided at the hotel. It was a difficult decision because both children love the opportunity to chose from the vast array of food available, but we knew that it would be a far too limited choice for M. Instead we ate out every evening at a number of local restaurants along from the hotel. One of the best things about eating out in Portugal is that it was surprisingly easy to accommodate M’s food restrictions. His love for most things fish and seafood meant that we were able to order fresh fish that was cooked in olive oil with a side order of chips and he was satisfied. We found that most of the restaurants were helpful in preparing prawns or fish without any sauces and we skipped dessert as none of us needed it.

As expected, the movicol made the week difficult, but it made a big difference to be dealing with all the stresses and strains in a sunnier climate. We all needed the break from the daily grind at home and I came back feeling refreshed and ready to tackle the challenges of the new term.

One of the many sandcastle creations M built during the week

Apples

Feeling normal

Where there’s hope

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“Where there’s hope, there’s life. It fills us with fresh courage and makes us strong again”

– Anne Frank, The Diary of a Young Girl

This has been a quote that has resonated with me over the last week. As I wrote in my last blog, we have been struggling with a relapse that has left us all feeling despair and wondering what our next steps were destined to be. Dealing with IT changes and financial year-ends at work, as well as M’s challenging behaviour at home, has left me feeling battered, bruised and emotionally fragile.

In the midst of the week, I desperately needed a little hope to remind me that there is more to life than the rubbish I’ve been dealing with recently and it came on Thursday, from what was, to me, a surprising source.

M is fast-approaching the end of his final year in Infants and will be moving up to our local Junior school in September. G has been there since Christmas and has really flourished and we felt that it was the right place for M to continue his education. We haven’t had the support we had hoped for or that we are entitled to from M’s current school and I have been concerned as to whether things would improve when he made the move.

On Thursday, I arranged a meeting with the Head teacher, SENCo (Special Educational Needs Co-ordinator) and class teacher to discuss all of M’s needs from the EGID to the newly diagnosed dyslexia and dyspraxia. I spent considerable time reading around what we were entitled to in terms of support for all of these issues, spoke to our local authority about whether we could hope for any help from them and what exact questions I needed to be asking to make sure my boy gets the help he so desperately needs in the classroom setting.

I went to the meeting with the lowest of expectations as I know how hard the world of SEN can be from following the experiences of others and talking to those in the know, but I was quickly proved wrong. The staff members were interested in M, asked questions along the way and made suggestions of how best to help him within the classroom. They made copious notes about what small things we have already found help him and where we need to make improvements to support him more.

The SENCo had already put a phone-call in to his current school to ask for information from them about what procedures, if any, they’ve put in place for him and had read through the report from the Dyslexia Centre which contained the Educational Psychologist’s recommendations for help. She checked whether we had made the referral to Occupational Therapy, which our GP did during the week, as she was happy to do that for us, but felt it would be quicker coming from the GP than from school.

Even before the OT referral eventually happens, the school are happy to support his dyslexia and dyspraxia by:

the use of a writing slope (provided by us!) in the classroom
the use of triangular pencils and pencil grips (again from us) in the classroom
photocopying or printing worksheets onto yellow paper as this helps M to see writing clearer
the use of lined, yellow paper when he’s writing or doing spelling tests, where practical
the use of a stress ball to warm his right hand before he starts writing
encouraging him to use a yellow overlay when he’s reading as this helps him track the words

Then we got to the biggie, the matter of M’s EGID, multiple food allergies and his current frustrations and emotional issues surrounding it. I printed out a letter for the school, which I sourced from FABED and which I could personalise to highlight M’s exact condition, allergies, medicines and reactions. Both his class teacher and the SENCo gave the document a quick scan and then listened intently as I explained the finer details of what this condition entails.

One of my biggest concerns was how they would handle it if M experienced a soiling accident at school. We have been fortunate that over the last 3 years of his education, this has happened only a handful of times, but given his current relapse and all the anxieties of moving up to a new school, I wanted to pre-warn them that this could be an issue. They instantly agreed that there would be a need for additional support for M in case this happened and wanted to discuss it further with the Head, particularly as they don’t currently have a shower or suitable facilities to make changing him easy. At no point did I feel that this was an inconvenience and whilst I don’t expect miracles, or funding, to happen overnight, I am confident that they will find a way to make sure his needs are met.

I had discussed the meeting with M the night before as I felt it important that he understood that the school wanted to help him and also to gain an insight into whether there was anything he was particularly worried about regarding the move. M has had some issues in building friendships and he was worried that the other children in his class would ask him a lot of questions and then be mean to him because of the food allergies. He is overly sensitive and as emotionally fragile as me at the moment and this was obviously playing on his mind a lot.

I raised M’s concerns and was thrilled to hear his class teacher instantly suggest that they discuss his food allergies as part of the circle time during the first week of term. They will be talking about all the children and asking them to share something about themselves, so will be a perfect opportunity for M’s allergies to become known in a non-confrontational way. M can choose to have as much involvement in that discussion as he wants and will help him understand what the other children are told about him.

The staff were concerned and interested enough to reassure me that they would do everything they could to support M in school. They will be working on a health care plan as well as some short-term targets that will cover all of his health issues and educational needs. They will ensure that all adults who come into the school, and not just those dealing directly with M, are made aware of his multiple allergies and that his photo, name and list of those allergies will be displayed in the staff-room. Most importantly, they will maintain a strong communication link between us and them, to make sure that any problems that arise either from their point of view, or from home, are dealt with quickly and not left to develop into something worse.

My difficult week has ended with some hope that, whilst I can’t control M’s health, we will be able to influence his education and that hope really has given me some courage and has renewed my belief that we are strong enough to walk this path.

The Secret of the Swap Box

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Well, I couldn’t resist just one more memory to celebrate Fathers’ Day!

This weekend has been a lot less manic than the last. Other than the obligatory Fathers’ Day celebrations on Sunday, we also had 2 very important appointments to keep on Sunday afternoon. G and M took their very first individual Speech and Drama LAMDA exams. It’ll be a wait of another 6-8 weeks until we hear the results, but I’m proud of them both for having a go at this new challenge.

So, we’ve spent time playing games, watching TV, doing some homework and enjoying some quiet family time. We’ve also worked on a project that has become very important to G over the last couple of weeks – her swap box.

This is an idea that was recommended to me about a year ago by a parent at M’s school. She had overheard a conversation I was having with a fellow Mum about having to anticipate when treats might be given out in class to avoid having to deal with M’s frustration when he couldn’t have one. She asked if we’d ever thought of providing a Swap box to be kept in the classroom.

I looked at her blankly, listened intently and then wondered why I had never thought of such a simple solution to this problem. The idea really is an easy one. We provided a box, decorated by M, that was filled with a selection of sweets, biscuits and other treats that were M-friendly. Whenever M is given a treat for any reason in the classroom – birthday celebrations, leaving gifts, rewards for good behaviour, Advent chocolates or Easter eggs – he is allowed to take what he’s been given and swap it for a safe alternative from his box. This means that he never feels excluded from all that is going on and we can be assured that he isn’t being given any food that could cause an allergic reaction.

I had never considered the need for G to have same, but in the last couple of weeks she has been unable to have caramels or chocolates that have been brought into school to share. I was hoping to maybe make it to the end of term (well there are only 5 weeks left) and sort G’s swap box over the summer holidays, but alas, that wasn’t to be. G was adamant that she needed one now and so we found a box and allowed her to decorate it this weekend. I’ve filled it with a small supply of Haribo sweets, fruit snacks and some M-friendly packets of biscuits and she’s taken it into school this morning to stash with her teacher.

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It really is one of the simplest suggestions I’ve come across in dealing with M’s condition and has proven to be invaluable as he has found no need to strop or complain about being different to his friends. After all, when you’re struggling with quite so many challenges, being able to take part with everyone else is really worth it’s weight in gold.

Exhausted!

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It’s been a long, exhausting, but fantastic weekend. We’ve got so much more from this weekend than we had expected or even hoped we might.

Saturday was a busy day at the Allergy and Free from Show and I really wish we’d had the 2 day visit we’d originally planned. Just to give you an idea, the photo below is a small part of the hoard of M-friendly goodies we came back with:

We managed to pick up some of our family favourites at “show” prices, which meant that lots of the products were at half price or less, but also found some new things too, which were either new to the market by some familiar names or simply new products to us. Amongst the new treats we discovered were

Bfree Gluten and wheat free tortilla wraps – perfect for M and G’s lunchboxes
Gluten, wheat and egg free spaghetti – the manufacturer assures me it won’t go sticky during cooking like so many other brands do. This is one that we’ll have to try and see
MozzaRisella – a mozzarella-type cheese made from rice and containing no dairy or soya
KoKo Strawberry flavoured coconut milk – not just a new flavour, but now also available as a pack of 3 250ml cartons, perfect for a treat on a day trip

We found that all the stall holders were knowledgeable, informed and friendly. Nothing was too much trouble for them and they all took their time to talk with not only Mike and me, but M and G also. We were also lucky enough to meet the wonderful folks of both Fabed and Parentsown and discovered them to be even more delightful and helpful than they are on their respective web forums. Finally, the children were collared by well-known TV weather girl, Sian Lloyd who had her very own weather map on hand to show the pollen count and problems experienced by hayfever sufferers in the UK. She spent a long time teaching both G and M how to present the weather, had photos taken with them and chatted to us about M’s condition and why we were visiting the show.

My round-up of the show has to be M’s quote on whether he enjoyed our visit:

“It’s the best show we’ve ever been to, Mummy. Can we come again?”

Sunday was another great day, although the sunshine we had been hoping for didn’t materialise and the morning was overcast and grey. We made our way across London and eventually reached Battersea Park to join around 3,996 other people in the 5K RBC Race for the Kids raising money for Great Ormond Street Hospital. It may have been a less than sun-filled day, but the number of people taking part was amazing to see and I can’t wait to hear the final figure for the amount of money raised. We didn’t rush to get to the start early after a late night at Matilda on Saturday – and before I forget, I highly recommend a visit to the Cambridge Theatre to see this awesome show – but we felt the camaraderie and excitement of the walk nevertheless. As requested by M and G, we had taken along the scooters and they happily led our way as Mike and I followed, alternating between a walk and a gentle jog.

We had some highs and lows along the way with M as expected as he took the occasional tumble from his scooter (we’re still working on the balance issue as he struggles because of the dyspraxia) and minor tantrums as it appeared that G might beat him across the finish line. However, finish it we did and we collected our medals and goodie bags, completed a quick tour of the entertainment provided for those who took part and even fitted in a play at the fantastic park in Battersea, before heading back across London for lunch and our train back home.

I’m still waiting for a final couple of donations to be made before I can update you on our personal family fundraising total, but, for the interim, here’s a photo of M in his race t-shirt, RBC lion and medal.

7 years to diagnosis

Searching for an answer