Monthly Archives: September 2013

The Battle for Breakfast (magnificent muffin recipes included!)

Courtesy of en.wikipedia.org/wiki/Go_to_work_on_an_egg

Who can forget this advice?

Over the past 12 months, there has been a lot in the national press about the numbers of children who are arriving at school without having eaten any breakfast. More schools have introduced breakfast clubs, in some cases financially supported by the teachers, to ensure that pupils get that all important start to their day. The benefits of a good breakfast to see us all through our day are well-documented and as a Mum, I’ve tried install those principles in my children.

G is a fantastic breakfast eater and always has been. I remember, at an early age, picking her up from nursery and being told by the astounded key-worker that she had eaten 3 whole weetabix for her breakfast that morning. What amazed me more, was that she had already eaten a full bowl of cereal (2 weetabix) at home before getting to nursery – where my tiny mite had put those 5 weetabix we will never know, She happily munches her way through an overflowing bowl of rice pops and cornflakes with raisins and milk and, if she has enough time, then another bowl will be consumed too.

Courtesy of controlengeurope.com

M is the complete polar opposite of his sister. He is much more like me and doesn’t like to eat as soon as he wakes up in the morning. The problem is that due to his sleep issues, I inevitably have to wake him for school and even showering and dressing before we attempt breakfast rarely achieves much success. It’s becoming increasingly difficult to get M to eat even a scrap of breakfast, which simply reflects his current health and declining appetite.

Which is why I’m constantly and desperately searching for a tasty morsel that will entice him to eat first thing, whilst being relatively healthy. We’ve tried toast, bacon sandwiches, cereal, porridge, fresh fruit and yoghurts, all with relatively limited success. One day he’ll eat something like it’s going out of fashion, the next day it’s like getting blood from a stone. I was stuck for ideas until last weekend, when inspiration hit. We were up in London for an extended celebration of my Mum’s birthday and at breakfast on the Sunday morning, G disappeared off to the buffet and came back bearing a mini chocolate chip muffin for me as a thank you for taking them to London for the weekend.

As I munched my way through this tiny treat, it struck me that it was just the thing that might tantalise M’s tastebuds first thing in the morning. All I needed to do was find a muffin recipe and do some of my free-from jiggery-pokery to turn it into the perfect M-friendly nibble. We had a huge amount of rapidly-browning bananas in the fridge, so a recipe for banana muffins seemed the obvious choice. I found one, played around with the ingredients and ended up with this wonderful looking batch:

By the time I got round to photographing the end result, 3 had already been devoured by G&M – success!

Excited by the instant success, and with some left-over bacon and soya- and dairy- free cheese (yes such a thing really does exist) lurking in the bottom of the fridge, I found, adapted and baked a recipe for bacon and cheese muffins. These turned out a little more anaemic-looking and seem to be a recipe I’m going to need to tweak a little more to perfect:

Less golden than the banana ones, but still delicious

So, from one evening’s work, I’ve found 2 new recipes – banana muffins and bacon & cheese muffins – and have a pair of happy children. The only problem? As much as M loves the muffins, it appears they weren’t the weapons I was searching for and the battle to get him to eat breakfast rages on!

Simple Pleasures

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When in the midst of dealing with the complicated life that is M, it’s really easy to get bogged down with the problems and overlook the simple pleasures in life. As the saying goes, sometimes you need to just stop and smell the roses. Despite the challenges of the last few months, there have been some wonderfully simple pleasures that are a precious reminder of just how good this summer was between the difficult bits:

Standing in the back garden with the children and watching the Red Arrows fly overhead
Courtesy of en.wikipedia.org
G & M using walkie-talkies made from nothing more than scrap cardboard and their imaginations

Drinking an ice-cold glass of home-made lemonade
Without the “pink”
Taking the train into the city and walking around on a local Art trail whilst investigating the area and sights

Watching G and M cheer as Andy Murray won Wimbledon
Courtesy of capitalfm.com
Watching G and M then recreate the Wimbledon moment using our washing line and their beach tennis set

Late night cuddles with M and early morning ones with G

Enjoying some classic Disney films before bed and finding some new favourites
Courtesy of hdwpapers.com
Home-made burgers cooked on the BBQ

Camping in the garden – well this was one for Mike and the kids, I am definitely never, ever going to consider camping to be a pleasure of any kind

G & M spending hours out in the garden: building dens, climbing trees and bouncing on the trampoline

Courtesy of dartmoor-npa.gov.uk

Long lazy summer days spent lying on the beach, building sandcastles and splashing in the sea

Perfecting a myraid of free-from, M-friendly recipes and enjoying tasting each and every one!
Rainforest flapjacks

Dyspraxia support

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Courtesy of shoreline-pt.com

As well as going back to school, we’ve also had M’s referral appointment for Occupational Therapy to support him with his dyslexia and dyspraxia. We had been warned that we might have to wait up to 9 months for the referral to be made, so you can imagine my delight to be offered an appointment just 3 months into the process. The therapist, D was fantastic and a lot of the health professionals we’ve seen along the way could learn a great deal from her approach to helping M.

Unsurprisingly, she had not come across EGID before, so had spent some time researching the condition and understanding how this might impact on M before we got to the appointment. She had read thoroughly the reports completed by the Dyslexia Centre, school and us, but then spent more time clarifying points with me, taking into consideration the change of schools and asking what we were hoping to achieve through OT. As we chatted, D observed M as he played with the various activities she had set out in the room, including a bat and ball, foam football and low-level balance beam. Her conclusion was that he most needs the support in improving his fine motor skills, which will directly impact his academic prowess and that working on those will then lead to an improvement in his gross motor skills and balance.

She then switched to assess his writing, cutting and cutlery-holding skills, all of which I had mentioned as areas that I felt needed some work. M showed his reluctance to write by insisting on discussing each task she set him, obviously in the hope that he could browbeat her into leaving them untouched, but he had met his match. D listened to his comments, acknowledged them and then prompted him to get on with what she had asked. He may have grumbled each and every step of the way, but he did them all and enabled D to assess as she needed.

Creating and then dismantling paper-clip chains

D suggested a number of games using everyday items – clothes pegs, marbles and paperclips – and explained how these would help build his finger strength. She set him challenges and played the games with him, so that he could understand what was required and she could check that he was doing them correctly. What impressed me the most was that D gauged accurately how many games to introduce and how long to play each one such that she didn’t overwhelm him with suggestions. Playing these games at home several times a week will bring about improvement and I foresee a number of family challenges to see who can perform the best.

A paper plate sun with peg rays to attach every morning

D also agreed that using a writing slope at school will make a massive difference to his writing ability. As it is highly unlikely the school will have one lying around, the OT department will arrange to lend one to the school for 3 weeks, which will allow the teachers to assess the difference it makes to his work. This will be followed up by a written recommendation and a school visit, where D will be able to observe M in the classroom setting and see what else might be done to support M and help him achieve, before meeting with the SENCo and suggesting how some funding from their SEN budget will help.

This school visit will then be followed up by a return appointment with M himself, whereby she can see if the daily activities she has suggested have helped and whether school have followed her recommendations and funded the special equipment he needs. I have already invested in a set of “caring cutlery” to help him at meal-times:

Courtesy of completecareshop.co.uk

Whilst we continue to struggle with his gastro health, it is a huge encouragement that there is something useful that we can actively do to improve M’s school-work and performance. He is a bright and articulate child and it will be both fascinating and exciting to see how things develop over the coming months.

A new term

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September marks the start of the new school year and an opportunity to look ahead and plan for the coming months. For our household, September has seen M starting at his new school as well as a number of appointments to make and keep regarding his health. There’s been so much to deal with that, for my own sanity as well as ease of reading, I’ve spread my thoughts over a couple of blog posts.

Courtesy of carevan.org

School-wise, the start of term has gone amazingly well for both M and G, who have enjoyed meeting their new teachers and are slowly settling down into their new school routines. G was a little nervous on the first couple of days meeting her new teachers (she has 2 who job-share), but her class is the same, so she’s with her friends. It’s hard to believe that my first-born is starting in Year 5 and makes me feel old to realise that I’ve been parenting for nearly a decade.

Sadly, the continued use of Movicol meant that M wasn’t able to start back without wearing a pull-up as we had hoped. The risk of an accident during school hours and the massive negative impact this would have on him left the school and us in agreement that the pull-up was a necessary evil, and M reluctantly agreed. It has been hard to judge his real feelings about this as he has been deliberately disengaged from the decision-making, which has been no surprise at all. He just doesn’t want to face this new reality at the moment and who can blame him? His biggest fear is that his classmates might find out, but the school and I have worked alongside each other to make sure this possibility is minimised. The pull-up is hidden by his underwear – a sensible pair of trunks long enough to cover it completely – and school suggested he uses the classroom toilet to change for PE, away from prying eyes.

His sensitivity to his “different” lunch-box has been handled well by his new teacher, Miss K, who suggested a special circle time at the end of the first week to introduce his diet and health issues to the class. By the Friday, M had decided he was open to answering any questions his new friends might have and, as we expected, most of them revolved around what he could or couldn’t eat. Following that Q&A session, Miss K has also suggested that perhaps we could arrange a “tasting” session for the class, so that they can see, taste and understand some of the foods M has to eat. M loves the idea of being able to share his diet with his new friends and is drawing up a list of what to take into school as we speak.

Which will make the final cut?

School have also made allowances regarding his use of the toilets and impressed me by thinking around the matter of which toilets he would need to access. They considered what could happen if the toilet was in use when he needed to go and have given him special permission to use the Year 6 boys toilet, which is just along the corridor. They’ve also agreed that as long as the adult in charge is aware he’s dashing off to the loo, then he can forego the need to ask permission before he leaves the classroom or playground. All important when time really is of the essence.

All of this is a refreshing change for us and a real affirmation that we made the right decision in choosing to move schools. Their positive approach to working with us and with M means that we all feel a great deal more relaxed about the school day. School are keen that the day is as stress-free for M as it can be and the effect of this on M is clear, as so far we’ve had no toileting issues at school and he is the happiest we’ve seen him in a long time. They really have restored my confidence that M will be supported as he needs and the lines of communication are very much open for us all.

Well, it might be a bit more high tech than this... Courtesy of www.lifeschocolates.com

Well, it might be a bit more high tech than this…
Courtesy of http://www.lifeschocolates.com

Pen-blwydd Hapus Mamgu!

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Or, for those of you not fluent in Welsh, “Happy Birthday Grandma!”.

This weekend we celebrated my Mum’s birthday with her and what better way to celebrate than to try out some new recipes, especially those for cake! All recipes have been adapted for a MEWS-diet and I have to say a special thanks to fellow blogger, lucysfriendlyfoods, for her egg-free meringue recipe and invaluable advice for an alternative to soya protein:

Pea protein – a new ingredient to me, but the key to a successful egg-free meringue

I made, and we all enjoyed, successful chocolate meringues and carrot cake. G and M gave both recipes a 10 in their taste tests and I finally feel as if I’m beginning to crack the M-friendly baking dilemma that’s been threatening to beat me for a couple of years. What better way to share than some photos from the day:

At this point, the mix tasted a little like that American delicacy, Marshmallow Fluff!

The final product – perfect and delicious egg-free chocolate meringues

And who’d have thought you could go from this…

…to this?

Happy birthday Mum!

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

With a little help from Easyjet

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Courtesy of bankingtech.com

This summer we travelled once again to Portugal for a week of sun, sand and sangria. On our 2 previous holidays, Mum and I filled our suitcases, not just with the necessary sun-cream, hats, swimwear and shorts, but also with a supply of M-friendly foods to get us through the week relatively unscathed. I’ve previously always taken a more relaxed stance to M’s diet whilst away from home as it’s a great deal harder to ensure that his diet is as strictly adhered to as it is at home and we have coped with the resulting consequences, accepting it as our decision.

However, we decided that this year had to be different. M’s struggles over the last few months with his health have been well-documented on my blog and the accompanying emotional frustrations and challenging behaviour meant that I felt we needed to endeavour to follow his diet as much as we humanly could. This, of course, meant that we needed to take a lot more M-friendly foods with us – free-from spread, rice milk, cereal, bread, rice cakes and snacks to name but a few.

Courtesy of http://www.guardian.co.uk

This increased amount of food, plus all the additional medicines M is now taking – he has increased to 7 medicines daily compared to last year’s 4 and the previous year’s 0 – meant that I needed to find an alternative means of carrying it all as otherwise I’d be leaving some essential clothes behind.

Fortunately, a tip from the “Special Diets” thread on the Dibb website suggested that it might be possible to carry all of M’s medical supplies including the food, as additional hand or hold luggage at no additional cost. I immediately contacted our airline, Easyjet, to see what advice they could give me.

Frustratingly, it wasn’t as simple as phoning a helpline, but rather I had to go through the rather convoluted route of e-mailing their customer services and waiting for a reply. However, the small amount of effort required was well worth it as I received the following confirmation from them:

“Easyjet would like to advise you that if you need to travel with any kind of medication or medical equipment you can do so, if you provide us with a doctor’s letter at the check-in desk, confirming the name of the passenger who needs them, the amount and names of each medication, doctor’s signature and stamp. You will be allowed to travel with the medication in a separate extra piece of hand or hold luggage without any extra charge. Please remember that in the extra piece of luggage you will be allowed to put only the medical stuff and nothing else.

Please also advise our Special Assistance Department about your need, so they will add this additional information to your booking to make the airport staff aware of your needs.
You can contact them by calling on a free of charge from landline number: 0800 998 1130.“

So, I did as I was told and contacted the Special Assistance department. They put a note onto M’s flight details to advise that we would be travelling with an additional bag free of charge and reiterated that I needed a signed medical note detailing all the medicine and foods we needed to carry with us and how much was needed each day. I then spoke to our GP, who agreed to list out everything we might possibly need during our holiday. The letter was duly written, signed and paid for and we were all set for the flight.

Courtesy of telegraph.co.uk

The ease of being able to take a dedicated bag just for M’s medicines and foods was a real godsend and I was impressed at how easy it was to successfully check-in with not a hassle in sight. There was no question about taking the additional piece of hold luggage through and even the return journey was simple, though I would recommend also having a copy of the actual prescription with you instead of just the medical letter if at all possible. Travelling with small children is difficult at the best of times and when you add medical needs into the mix, it becomes even more of a challenge, but Easyjet lived up to its name and made our life just that little bit easier.

The Pellet Study

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Courtesy of sfia.org

Sometimes having a child with a chronic illness is like becoming part of a secret society. You suddenly become well versed in a world of specialised language, medical tests and medicines that you never knew existed in your life pre-diagnosis. Having spent a long time researching EGID both before and after M’s diagnosis, I thought I had come across most things, even if I had no idea what half of them were and whether they’d ever be relevant to M, but the turmoil of the last couple of months and the subsequent plan of action put into place with GOSH was to show me just how wrong I was.

As I agreed with the registrar over the phone about the next steps we needed to take following M’s abdominal x-ray, the words “pellet study” and “slow transit colon” were thrown in my direction. The brief explanation given was probably not enough to satisfy my inner control freak, who needs to know everything and understand the whys and the wherefores, but I figured that I could boost my understanding by a quick further investigation with Dr Google. Sadly, I hadn’t anticipated just how difficult I would find it to get the details and comprehension that I needed from that source.

Courtesy of warriorfitness.org

This time round however, I knew where to turn. Within minutes of getting off the phone to GOSH and my failed attempts to uncover more useful information on the internet, I hopped across from Google to Facebook and posted a question on the FABED forum. I may have mentioned just once or twice before how wonderfully knowledgeable the wonderful FABED parents are and this time was to prove no exception. A couple of hours after my original posting, several Mums had offered their support and advice and one even offered to phone me and talk it through.

Michelle, if you’re reading this, you were an absolute life-saver with that offer and that phone-call. I really can’t thank you enough.

I now had a better understanding of what the pellet study was, what they were looking for and some key pointers to discuss with the doctors before we took the test any further. Most importantly, I had some affirmation that my belief that waiting until October to perform the study, as was originally proposed, was just too long, especially for my desperately unhappy lad and I felt confident that I could go back to GOSH and argue my case.

As it happens, this turned out to be unnecessary as my follow-up call after the Movicol introduction, saw me talking to a new registrar, who agreed that we needed to be testing M now to understand what was going on with him and to make sure we were doing all that we could to help him back to the road of recovery. However, I was able to ask my questions, understand not only what they were looking for, but what they would do with their findings and know where we were headed over the next few months.

The pellet study looks at how quickly food moves through the intestinal tract and whether there are any issues with a slow transit that could have led to M’s chronic constipation. Over 3 days, M needed to take a series of “pellets”, which are capsules containing mildly radioactive and different shaped markers. The pellets are taken at the same time on 3 consecutive days and then on the 4^th day, he had another abdominal x-ray. The images below show how the x-rays could turn out:

Courtesy of http://www.ucl.ac.uk

As you can see, image 1 shows a person with normal transit, who would have passed all or most of the markers out of their body by the time the x-ray is taken. Number 2 shows someone with a slow-transit intestine, which means that the body is failing to move food through the intestinal tract as it should, which can lead to constipation. The final image shows that whilst the transition through the intestines has worked as it should, a blockage at some point has prevented the markers being passed out as they should.

If M’s x-ray turns out to be like image number 1, then we are back to the drawing board to understand what’s going on in his insides, but a normal transition is great news. Number 2 means the introduction of medicine number 8, a stimulant laxative which would effectively irritate the intestines into reacting as they should and push the food eaten along the intestinal tract. Number 3 would be an indication that there is a blockage of some description at a point in the bowel and carries the likelihood for investigative surgery to find out what that blockage is. None of them is an ideal answer, but at least we feel that we’re being proactive in trying to find out exactly what’s going on.

So, the million dollar question has to be – Which x-ray image will M have? Answers on a postcard please…

7 years to diagnosis

Searching for an answer

Monthly Archives: September 2013

The Battle for Breakfast (magnificent muffin recipes included!)

Simple Pleasures

Dyspraxia support

A new term

Pen-blwydd Hapus Mamgu!

Viva Portugal – and our answer on a postcard!

Apples

With a little help from Easyjet

The Pellet Study