This is just a quick post to say an absolutely huge thanks to those of you who very kindly sponsored us a couple of weeks ago when we completed the RBC Race for Kids. This 5k walk was looking to raise funds for some much needed improvements to Great Ormond Street Hospital and M was keen to participate to support “his” hospital.
Thanks to your generosity, we raised a massive £481.25 for GOSH – we all thank you very much.
I love making cakes.
Actually, to be more accurate, I love creating decorated cakes for my children’s birthdays, but I’ve never been keen, or really that good, at the baking part. Even when I was allowed to bake “normal” cakes, I could never get them to rise.
The last normal cake I made in our household for G’s 2nd
When I had to adapt to wheat and dairy-free cakes to allow for G’s allergies, I managed, but still failed to get the things to rise. Over the years, my cakes have more resembled flat pancakes than respectable sponges. I have been known to suffer “sponge-envy” when seeing the beautifully rounded Victoria sponges made by friends and colleagues.
My first wheat and dairy-free cake for G’s 3rd and very, very flat
G’s 5th cake and still not much sign of it rising!
Ironically, cupcakes have never been a problem. Whilst my sponge mixes have never made the perfect sponge, they have always made beautiful cupcakes and one year I even resorted to a cupcake tower for G’s birthday cake as something I could be proud to present to the world.
Wheat and dairy free for G, but still contained eggs…and still flat
M’s last almost-normal cake for his 5th
Then came along the ultimate challenge. Not only did my cakes need to be wheat- and dairy-free, but I also had to remove the soya and the eggs. I’ve tried out very many recipes* for cakes in the last 2 years and have met with varying success. I’ve attempted baking with baking powder, xanthan gum, bicarbonate of soda, oil and water and even a mix of cider vinegar, oil, baking powder and bicarbonate of soda…and still those cakes won’t rise.
I’ve tried Doves Farm Gluten free self-raising flour, which is a blend of rice, potato, tapioca, maize and buckwheat flours and comes with helpful recipes on the side of the packet and met reasonable success. I’ve tested Innovative Solutions pure brown rice flour, which works okay, but can taste a little granular as a sponge. Guess what? Still my cakes won’t rise.
This year’s first attempt, a Lego 7, but still a little flat!
A layered Mini-golf cake for G’s 9th
This year, for M’s 7th birthday, I came to my final conclusion. If my cakes won’t rise naturally, then I will just have to create the height I crave by stacking layers. The end result more than exceeded my expectations and what’s more, I had a lot of fun by creating a rainbow inside to wow the group of 6 and 7 year-olds who got to eat it.
This one needed to be higher, so my secret was…
…to stack the rainbow layers. Mission accomplished!
I will continue my search for the perfect M-friendly sponge cake recipe that not only tastes good, but would convince even the harshest critics that cakes can be made to meet any dietary requirements. I will continue to create masterpieces that look pretty good, even if they don’t quite make the taste grade. And I promise this: that if I find that right combination of ingredients and technique in my quest, I won’t hesitate to communicate it, especially if I finally manage to achieve that elusive thing – a sponge cake that rises!
*all cake recipes attempted are included on my Everything free Recipes page
We have once again enjoyed a busy weekend. Thanks to the wonderful organisational skills of the dedicated group of parents who set up FABED back in 2005 to support parents and families of children with EGID, we enjoyed an amazing weekend at Legoland Windsor.
What made this weekend so special was that it was organised with our EGID children in mind. A full day to meet other families who are carrying the same load as us and who know how it feels to be fighting a never-ending daily battle that most of our friends just can’t comprehend. An opportunity for M to meet children who are just like him, suffer from the same condition and have to live with multiple food-allergies to a greater or lesser extent. A chance for G to meet others whose siblings are constantly in hospital, or making hospital visits and who are often the focus of so much attention.
We met bright and early on Saturday morning and were delighted to see that there were in the region of 40 families there, all of whom had at least 1 child with EGID, though we got to know one family where all 4 children were affected to some degree. This was our first FABED event, but were instantly made to feel welcome and amongst friends. We recognised some familiar faces from the Allergy Show a couple of weeks ago and both M and G instantly made some new friends.
Unfortunately M suffered a bad day, but we had the advantage of being able to seek refuge in the suite at the amazing Legoland Hotel. There was a dedicated medical room to provide privacy for those who needed it for feeding or medical purposes. The Suite itself had tea and coffee-making facilities for the parents and a play area filled with Lego for the children to enjoy. We took an hour and a half out of the day to give M some much needed downtime and the children enjoyed attempting to build the biggest tower possible with some of their new friends.
The evening showed just how much hard work and thought had gone into making this an unparalleled get-together. A buffet dinner was provided for the FABED families, with full details of all ingredients used to prepare the dishes and options available to cater for even the most difficult of diets. Those children unable to eat were able to spend time in the play area, which was next door but out of sight of the food. M was delighted to be able to choose from such a wide selection of foods and we were reassured that we knew what each dish contained and what he could and couldn’t eat.
As soon as we heard about this day out, we knew we’d be going along. It would have taken something extreme to keep us away. M feels so alone in his allergy world that the opportunity to show that he really isn’t on his own and to allow him to chat and get to know other EGID sufferers was one that we couldn’t turn down. He made particular friends with young R, who is a year older, but feels the same emotions and frustrations as M. They were able to have an honest chat and M values this new friend who is “just like me Mummy, but he can eat even less, sometimes has to be tube fed and has accidents too.” R’s big sister, F, was a great source of comfort to G also as they share the same experiences of a younger brother with EGID as well as struggling with their own food allergies.
I also got to meet the delightful mumannie123, who writes the blog, Food for Thought: Boweled over by food allergies, recipes and advice. We have got to know each other a little over the last couple of weeks through our respective blogs, so it was wonderful to finally put a face to the name and spend some real time chatting. We have discovered that we live in the same part of the world, so I’m looking forward to perhaps being able to meet in person as time allows, as there is nothing quite like having a friend who understands what you’re going through from firsthand experience.
We made the decision to make a weekend of it and stayed the night at the Hotel in an Adventurers Room. The lego models and details in these rooms are astounding:
This weekend has been a truly fabulous weekend and my heartfelt thanks go out to FABED and Legoland Windsor for accommodating such a complex range of needs and ensuring that so many families were able to enjoy as normal a day out as possible when dealing with illness. To this family, at very least, it has made a huge difference and has given us a great resource for support for this journey that we now know we are not travelling on our own.
I don’t know why anything surprises me any more when it comes to dealing with our local authority or the NHS or those involved in M’s education or, indeed, any combination of the three, but yet again, I have been amazed and astounded to find that the best way to get support for him is for us to take the initiative and forge the way, showing the professionals the best and most efficient way to get the job done.
We first discovered the power we wielded as parents approximately 12 months ago, when we came to the conclusion that M needed some speech and therapy help. Actually, that’s not exactly true. We first discovered it when we insisted on following our instincts and getting the referral to GOSH, but it would be accurate to say we were reminded of this yet again a year ago. M was a late developer when it came to his speech and for a long time was extremely difficult to understand. The only people who could understand what M was trying to communicate was G and me, which led to frustration all round as I was continually having to interpret for him and he hated the fact that nobody understood what he was trying to say.
Two things happened last summer that made us decide that we finally needed to address the issue. First of all, M failed his phonics testing at school as his pronunciation suggested that he didn’t know his phonics. His teacher hadn’t wanted to raise his speech as an issue with us before because of all the other health worries we were dealing with, but when Mike expressed his concerns with her, she was quick to concur. Despite our requests, we were told that there was nothing that the school could do to refer us for speech and language therapy and so we needed to see what, if anything, we could do ourselves.
The second was during a visit to our local National Trust property for a fun day out. G and M befriended another little boy and started playing quoits with him and his father. When the father asked M to repeat for the third time how old he was, “six”, and then turned to G to seek confirmation of M’s age, I could see the frustration reflected on M’s face and determined then and there that we had no other choice.
At that time, I thought that the only way forward was for us to pay for private speech therapy for M and so set Mike the task of speaking to a couple of local speech therapists about starting the process and seeing if they could help M or not. Within minutes of his first conversation, Mike was told something startling. Not only could M’s speech problem be identified – he pronounced his sounds through his nose, known as “nasal fricative” pronunciation – but there was definitely something a therapist could do to help and, what was more, Mike and I could complete a parent referral on the NHS for treatment.
We filled the forms, returned them to our local health authority and waited for the assessment date, which was scheduled for about 6 weeks later. The assessment completed, the therapist agreed that he should receive therapy within the school setting and 3 months later, M started 12 weeks of SaLT (Speech and Language Therapy) 2-3 times a week at school, all courtesy of the NHS. If we had listened to the advice of M’s school, we would have paid for the privilege of the therapy that M was entitled to and that has changed his speech and his confidence beyond recognition.
Now, a year on, we are again in a position where we could have ended up paying privately or waiting an inordinate amount of time for something M is entitled to receive. One of the recommendations made following M’s diagnosis with dyslexia and dyspraxia is that he receives Occupational Therapy (OT) to help develop his motor skills and his muscle strength, which, in turn, will improve his handwriting. The Dyslexia Centre gave us details of local, private OTs who would be able to provide M with the therapy he needs to see him develop.
I was told by another Mum, who’s child receives OT support through our local authority, that the waiting list for NHS-provided OT is in the region of 8-9 months, which is a long time to wait for something that could make a significant difference to M right now. It was here that I hit the next wall of confusion. I was advised to ask our GP to refer him, but she informed me that the only way to refer M for local OT was through his school. Now, given that M’s school hadn’t identified there even being a problem academically and were surprised that we had taken the decision to have him assessed for dyslexia and dyspraxia, I had no confidence whatsoever that we would get a referral from them, particularly after the whole speech therapy debacle.
So, once again, Mike took to the phone and made some strategic phone-calls. His first point of call recommended calling our local cottage hospital as it provides physiotherapy and OT for the community. One quick phone-call to there and we had an answer. We needed to print out a copy of M’s report from the Dyslexia Centre which details the benefits of OT to him, write a quick covering letter and send it directly to the Physio department at the hospital, whereupon they would review it and let us know.
Today, this plan changed again. The Physio department called me to ask why we had sent them the report. I explained the advice given and she was stumped. They don’t work in OT with children at the hospital and so advised that I called Children’s services at the local authority or alternatively the nearby Children’s Hospital.
You can probably guess where I’m going with this, but no sooner had I called Children’s Services, than I was advised that OT was run out of a different location and I needed to contact them direct. I have just spoken to a wonderfully helpful lady from Community Children’s Services, who has told me I need to go to either the school or the GP to get the OT referral M needs! Back to square one.
Don’t get me wrong, I’m a big fan of the NHS and am impressed by the range of services and support they are able to provide, free of charge, to so many people, but once again, the link between NHS, the local authority and the school is an inefficient one. Over the course of the last week, I have gone full circle and am now back to where I started without making any discernible steps forward. However, I am now armed with the advice that I need to get the referral made and a name for the GP to send it to. When the lead-in time for much needed help is so long, every moment wasted is frustrating for us all. The support that M needs is going to have to start with us and I will be fighting his battles, and any that G faces in the future, before anyone else wants to get involved. Maybe re-training as an Occupational Therapist would be the quickest solution to our current need, or perhaps I shall return to the wise advice offered by Dr Google to see if I can pick up any tips from there to try whilst we wait for the referral to be made…
What else can I say? Parent power rules!
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.
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.
I couldn’t let today pass without a post to recognise all that Mike has been to us as a family. He’s certainly had to see us through some tough times, almost from the very beginning 15 years ago. He’s been a great Dad to G and M and I couldn’t have asked for more. Know that we all love you very much – even if they did spend part of the day squabbling!
Just a few of my favourite photos from the last 10 years.
Grandpa R with G & M
Also to my father-in-law, who has been a wonderful part of G and M’s lives even though he is a 7-hour flight away. The kids love spending time with you and have precious memories of our last trip out to Canada that will stay with them for a long time.
Dad with G
And not forgetting my Dad, who sadly left us nearly 9 years ago and never had the chance to meet M or even get to know G properly. I know he would have been proud of them both and would have loved them dearly.
You all have an integral part to play in the lives of G and M and are amazing sources of love and support when the allergy-life gets us all down.
Unsurprisingly, when you’re having to work with any number of food allergies, it becomes a minefield to negotiate when considering going out for a meal. As food allergies appear to become more prevalent in our society, more and more of the larger restaurant chains are becoming aware of the need to make provision and adapt their menus to suit a wider audience. Charities such as Coeliac UK provide their members with a list of “safe” restaurants to eat and offer advice as to what to do when going out for a meal.
For many families like ours, even this information is not enough to guarantee that we can eat out safely. M is our hyper-sensitive, multiple food allergy suffering stumbling block to overcome when we consider eating away from home. One piece of luck we do have on our side is that M is a complete and utter foodie. He loves food and is prepared to try almost anything at least once, unlike his big sister, who has become increasingly fussy the older she gets. He particularly enjoys eating seafood and fish, though he will readily admit that oysters are not a favourite! And yes, he has tried them, but found them a little too salty for his taste.
However, we have been lucky enough to find a small handful of restaurants that do cater to our needs and that don’t appear to cause a negative reaction in M. There is no guarantee that these would suit everyone with food allergies, but they may be worth a go. I would highly recommend contacting the restaurant before your visit to check whether they can confirm if they can accommodate your specific food allergies, taking a look on-line at their allergy-friendly menus and we have found the Dietetics team at GOSH to be extremely knowledgeable too.
There are very many local or specialist restaurants out there who will also accommodate the most complex of dietary needs, but these should be a good starting point for anyone with children with food allergies. A word of caution to add, these restaurants are not able to guarantee that no cross-contamination will occur within their kitchens, though they work hard to make sure the risk is a minimal as possible. We have found that by talking to the waiting staff and explaining our needs, we get the best service we could ask for and I would recommend asking them what they can do to make your eating out experience the best one possible.
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
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.
This weekend has been pencilled into my diary and the family calendar for several months. It’s looking to be a busy and important weekend for us and allows us to give a little something back to GOSH too.
On Saturday, we are heading bright and early to London to attend the Allergy and Free From Show at Olympia. I had been told about this show last year, but unfortunately the dates clashed with other plans and so I have been keeping my fingers crossed, waiting to hear about confirmed dates for 2013. As soon as I knew them, the weekend was booked and I applied for a set of free tickets for us all.
I will give you more of an update after the weekend, but I have to say the line-up looks fantastic. We are all excited about the potential to find and try some M-friendly foods and M is hoping that we might discover a product we haven’t already tried. I have been told that this show is a must-do for any family dealing with allergies of any description, so if you should find yourself near Olympia at the weekend with nothing else to do and some allergies to accommodate, I would highly recommend you pop along and find out more for yourself.
That counts as a treat for M, well you have to take your treats where you can find them in our family, so Saturday night we have a treat planned with G particularly in mind. Those of you who know us, will know that both G and M attend a Stagecoach Theatre School and that the whole family loves nothing more than a trip to the theatre, be it for pantomime, musical, ballet or play. G and M both learned some songs from the hit musical Matilda in the lead up to Christmas and G has been longing to see the musical ever since. We had attempted to book tickets back in January when we were visiting GOSH, but it was sold out and so we had no choice but postpone this show for another time. As soon as we knew the weekend for the Allergy show, I knew we had to try and get tickets for Matilda too and this time we were successful. The children both know we are going and I can’t wait to see their faces as we experience the magic of this well-known Roald Dahl story.
Finally, on Sunday we are taking part in the RBC Race for the Kids to raise funds for redevelopment work currently going on at GOSH. We were late entries for this one as we had planned to spend Sunday at the Allergy show again. However, during our visit to GOSH in May, M spotted a poster advertising the RBC Race at one of the Underground stations and instantly asked if we could take part. As we are already in London for the weekend and we know that we will benefit from this redevelopment work during future visits and we had both children on-board and happy to complete the 5K challenge, I instantly signed us up.
One of the challenges that could face us on the day, other than working out where to leave our luggage and how to manage 2 scooters plus bags on the train, is the severe joint aches that M can suffer as a result of the EGID. These can be close to crippling at times and even though I’m happy to be “mean Mummy” and insist that he works through his pain to continue whatever he’s doing, sometimes he’s just in too much discomfort to be happy. I’m hoping that the excitement about completing the race, scooting the 5K course and raising funds for “his” hospital will be enough to see him round. Again, you will need to check back next week to see how well we all did on the day.
Finally, we are raising money for GOSH and so I unashamedly plug the cause and ask that if you feel that you can give anything, however small, to support this much deserving hospital, then we would appreciate it. My heartfelt thanks go to those who have already so generously supported us. Remember that every little bit makes a huge difference for the children and families who have reason to go to GOSH.
I was reminded at the weekend that I had miserably failed to give a final update on our weight loss after the week on M’s diet. It might not seem a lot, but both Mike and I are pleased with the achievement!
And the weight loss figures are….
Me – 6lbs; Mike – 5lbs
Now the challenge of keeping it off!
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