Tag Archives: EGID

Apples

Due to a slight miscalculation with my weekly local food delivery and the school holiday arrangements, we ended up with a massive glut of apples in the fridge. It seemed unlikely that we’d ever reach the end of the bags before the end of the summer holidays and so it presented the perfect opportunity to seek out and try my hand at yet another baking experiment.

Courtesy of telegraph.co.uk

I looked for some apple cake recipes and found that most of them were of the spiced variety. Much as this appealed to my taste, I knew that G would baulk at even the hint of a spice in the cake and I was keen to make something she would enjoy too. When I first suggested apple cake, I had had to break it down into its component parts of apples and cake, to convince G that it might be something she’d like, so my final recipe had to be simple. I found one for Dorset Apple Cake, a simple recipe containing nothing more adventurous than some ground almonds, which I thought both G and M would enjoy. The only downside was that it had not already been adapted for any type of special diet. However, the confidence I had found from baking my chocolate cake meant that I had every belief that I could take my new found knowledge and apply it to this recipe and make a success of it.

I found how to turn my plain rice flour into self-raising flour, how to use flaxseed meal and water instead of eggs and the quantity of xanthum gum to add to help make the cake rise. I painstakingly calculated the new quantities needed of each individual ingredient, carefully weighed and measured them out and started on the baking process. My final adjusted recipe can be found here.

This was the first time I’d used flaxseed meal in my baking and I was a little nervous of how it would work. I had never even heard of it before reading this blog-post by fellow EGID Mum, mumannie123. She had recommended the Bob’s Red Mill brand and I was delighted to find them at the Allergy show when we attended it in June. I spoke at length to the lady who served me and gained a little more understanding about using it as an alternative to eggs. I duly followed the instructions on the pack and kept my fingers crossed that it would work.

I ended up with slightly more cake mix than I had anticipated, so split it between 2 tins as it was just too much for 1. Given my past experience with cakes that don’t rise, I assumed that I would use my trusty container of Betty Crocker’s Vanilla Buttercream icing, which is MEWS (milk, egg, wheat, soya) free, to sandwich the 2 cakes together to create a perfect teatime treat.

I needn’t have worried. Much to my surprise and huge delight, my calculations had not been in vain and I ended up with 2 beautifully risen cakes that needed no assistance from me to give them height. The cakes were moist, sweet and didn’t last long in the house, which is a sure sign of having got something right. M and G even struggled to decide whether they preferred the Dorset Apple Cake or the Best Chocolate cake in the world, though I didn’t fall for M’s less than subtle hint that perhaps I should bake both at the same time so he could do a taste comparison!

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…

The Allergy & Free From Show North, Liverpool

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As you may remember, we attended the amazing Allergy & Free From show in London back at the beginning of June. I wrote about the varied M-friendly products that we discovered – old favourites as well as some that were new, not just to us, but also to the market. We spent a long day there and could have easily managed a second day investigating everything available as well as allowing the children to nibble and taste foods along the way.

The stall holders at the event were well-informed and friendly, understanding the need to answer our questions without losing our interest. We discovered the amazing Frank* bars, new flavours of Koko Coconut milk and B-free wraps to name but a few.

Just a few of the amazing products we picked up from the London show

So, I was delighted to learn that there will be a similar show this October for those living further North in the UK for the second year running. The trek to London is not easy, although 21,000 visitors made the effort to visit in June, especially when you live hours away, so it may be that the Liverpool show is a better location for you.

What is even better news, is that if you decide to make this a day out, you are able to access unlimited free tickets for either day, saving £10.00 per person, just by visiting www.allergyshow.co.uk/go/7yearstodiagnosis.

Have a great time there – I can promise that you won’t be disappointed!

This summer

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This summer has not been the sunny, fun-filled and relaxing one we were hoping for. This summer has thrown up a few unexpected bumps in the road which we’ve had to negotiate whilst trying to hang on to our sanity. This summer has had its highs and its lows, but we’ve got there in the end and have lived to tell the tale, just.

Courtesy of i360life.com

I haven’t been able to share the truth about this summer before now because this summer has been incredibly hard on M. It is only now that we are through the worst and have a plan of action, that I feel able to talk about it. I have made numerous phone-calls to GOSH to try and reach a place that has left us all feeling reassured and relatively happy.

At the beginning of July, M had an abdominal x-ray as well as starting on his new medicine, Nalcrom, but we had seen no improvement for him. To my complete surprise, the x-ray showed that M was chronically constipated and impacted all the way from his colon to his rectum. The first thing to tackle was clearing his system out, thereby giving him a fighting chance to recover the toileting improvements that he’d experienced at the start of the year.

This meant the return of our old friend, Movicol, a softening laxative that enables the body to better pass the stools without too much pain. We had used it when G was struggling with her own gastro difficulties, but the intervening 3 or 4 years had rendered my memory somewhat hazy as to how to manage this medicine. However, for once I felt confident that I knew what I was dealing with.

The plan was to embark on a routine that would see M taking an increasing dose of Movicol to enable the fecal impaction to be cleared from his body. Once this happened, he would need to continue on a maintenance level to keep his system moving until our next appointment at GOSH in October. Whilst this may sound easy enough, at the maximum level we were asking M to drink an extra 500mls of medicine a day and one that he hated taking and it was a struggle every step of the way.

Courtesy of myblogz.us

The downside was that, whilst on the increased dosage, M would suffer from even more chronic diarrhoea until the blockage was out and I knew that he would really struggle with this proposal. Just imagine the horror of being an active 7 year-old boy with minimal control of your bowels and a fear that someone might find out and make fun of you.

On the flipside, the advantage of being in the summer holidays was that we could tackle the problem thoroughly and hopefully resolve it fully before M starts at his new school in September. I suggested to M that for the relatively short time he was on the medicine he returned to wearing a pull-up. This would solve any embarrassing incidents whilst we were out and about during the summer and would give him the reassurance that other people wouldn’t know when he soiled himself. He reluctantly agreed, being obviously torn between the nightmare of wearing pull-ups as a 7 year old and that of being unable to control his bowel when in public.

Courtesy of http://www.gonannies.com

The first 14 days were hell, but the medicine did its thing and progress seemed to have been made. He struggled to cope and his fears of discovery and frustrations about his toileting spilled over into his day-to-day behaviour and those of us closest, Mike, G and me, suffered the consequences. He and I spent time together, seeing who could shout out louder and rant and rave more about how unfair the situation was. M needed to scream out the tension because it was unfair. Unfair that my beautiful, bright 7 year old was once again subject to the fraility of his body and couldn’t be like all of his friends. Unfair that I had to hold him sobbing once more because he just couldn’t understand why all this was happening to him and didn’t know how to cope. Unfair that the one person in the world who should be able to make it all better (me), couldn’t guarantee that there was an end in sight. His one over-riding fear was that he would need to continue to wear the pull-ups when he went back to school. The hardest thing for me was not being able to reassure him 100% that that wouldn’t be the case. We hope it won’t be for his sake, but as I’ve quickly learned, there are no guarantees especially when it comes to this condition.

Unfortunately, despite the promising start, we discovered blood in a number of his stools as well as mucous, both of which are an indicator of intestinal damage. Having a plan in place, even if contains new tests and possibly more medicines, means that I know we will get to the point of some answers, although they might not be as conclusive as we would want.

Feeling normal

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Courtesy of evotivemarketing.com

One of the hardest parts of M’s EGID journey is that he no longer feels like a normal child and is massively aware that he stands out from the crowd. Every day is filled with numerous medicines to be taken, carefully planned meals, aches, pains and a constant awareness of needing to make sure he gets to the toilet on time. As I’ve alluded to before, M is incredibly self-conscious about his condition and spends a great deal of time worrying that he will be picked on or bullied because of his illness and restricted diet. He has a tendency to isolate himself in group situations with his peers, though he will spend hours chatting to any available adult who’s prepared to listen.

We refuse to let his chronic illness get in the way of his life any more than is necessary, so he goes to school, takes part in after-school clubs and has friends home for tea just like all his friends. However, every new thing he participates in has to be carefully assessed and I spend a lot of time talking to teachers and organisers about M, his condition and the consequences they might have to deal with. We have been lucky that we have never come across anyone who isn’t prepared to work with M’s needs and accommodate them so that he can take part.

A recent week has been a perfect example of how wonderful it can be when M can feel like part of the crowd and not stand out for being so different.

Both G and M have been attending our local Stagecoach theatre school for a number of years and enjoy performing. They were lucky enough to be part of the 25^th Anniversary celebrations for Stagecoach back in March and took part in a massive performance of CATS at the Birmingham Indoor Arena. We are also avid theatre-goers and love nothing more than seeing a musical on stage. When I heard that the Youth Music Theatre Academy (YMTA) were running a drama workshop for a week this summer and that they were going to be learning and performing routines from a hit West-end musical, I knew I had to sign the 2 of them up.

G and M have been excited about this opportunity for weeks and, since the start of the summer holidays, have been counting down the days until the course began. By some strange quirk of fate, Mike and I had booked tickets to take them to see this show on tour the weekend before the workshop began, long before we even knew about the course and it was the perfect introduction to the week. What made the performance even more special was that some of the cast members were coming out to teach on the course during the week and we spent the interval musing over who the kids might get to meet.

The only grey cloud on the horizon was the difficult time M was going through with his health in the lead up to the course. By the Thursday of the week before, it was evident that he wasn’t going to find the week easy and I needed to be on site with him for those “just in case” moments that might happen. Fortunately, Jo (the course organiser) had no issue with my presence and welcomed me and M on board with an excitement that meant a lot. When you have a child who’s chronically ill, then it’s these little acts of inclusion that make all the difference.

I spent the week sitting quietly with my trusty laptop, tablet, mobile phone and books in a corner tucked away from view, armed with snacks, coffee and anything and everything M might need. The children knew I was there as a security blanket for them both, but I wasn’t an ever-present reminder that there was anything wrong, especially to those who were meeting M for the first time. He sang, danced and acted his heart out, learning new routines, perfecting familiar songs and most of all, having an amazing and fun time. We managed his medicine and his toileting with the minimum of fuss and I doubt that any of the other children really realised that there was anything different about him.

YMTA – this Oscar’s for you!

The Friday performance to the parents was fantastic and a real testament to the talents of those who had happily given of their time that week to teach the youngsters some new skills. We were amazed by how much had been achieved in such a short amount of time. My thanks have to go to Jo, Rosie, Joe, Holly and Zach, who didn’t let M’s EGID phase them, but supported and encouraged him every step of the way. He had an amazing time and can’t wait for the next workshop to be arranged! Best of all, M had a week where his health didn’t stop him from taking part and he was able to feel and be as normal as any other child who was there.

My child with Super powers

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As a parent, we all go through that experience of self-doubt and belief that we’re doing it all wrong. As a parent of an unique child, a child with unexpected needs, that self-doubt is part of your every waking moment. You begin to wonder if it’s something that you did, right or wrong, that has led to the position you find yourself in.

A good friend recently sent Mike and me a link to this wonderful blog post that really spoke to her, and our, hearts. Through it I discovered the truth that I have children with super powers, rather than with special needs.

Courtesy of kotaku.com

We all know that it’s not easy being a parent and when you add into that mix an illness or condition or special need for your child, you rapidly begin to wonder why. Almost every day I question why M has this condition. Is it something I did, or didn’t do during my pregnancy? Is it faulty genetics on my side, or on MIke’s, that have led to these problems? Could I have done anything to change the outcome that my boy has to live with? Of course, the answer is no. He is who he is and who God made him. I don’t have the answers as to why his life has been so medically complicated and why he continues to have to fight a daily battle for good health, but I also can’t live my life playing the blame game.

I struggle when talking to expectant Mums who are holding forth that they don’t mind whether they have a boy or a girl as long as the baby is healthy. I remember saying the same thing myself, so why is it that that wasn’t the card we got dealt? I smile and nod and bite my tongue, because I can’t promise that for them that’ll be their experience. I hope it is, I really do, but I know that there are no guarantees in life. We are the exception to that rule.

Courtesy of http://www.evolllution.com

During a recent conversation, I was asked whether I wished I could turn the clocks back and make different decisions to those I made 10 years ago. I didn’t have to stop and think because I know the answer. No. The mountains may be high and treacherous, but the view from the top is amazing and my answer is no. The valleys can be dark and bleak, but the sunshine reaches down and touches those darkest of places and the answer is no. I may get knocked down far more times that I thought possible and struggle to get back up and keep on with the fight, but my answer is still no. I would love for life to be easier for both M and G, I wish for their medical problems to disappear in a heartbeat, but I love them and I love being a parent to children with super powers, even if the going is sometimes really, really tough.

Lake Huron, Canada

Proud Mummy moments

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A little while ago, I wrote a post about everyone needing a hero and pondered on who M and G would adopt as their heroes as they got older. This week I’m adding to my choice of heroes and am including my children at the top of my list.

In their own ways, they have been brilliant over the last few weeks and I am so proud of them both. This post is a tribute to them and their awesomeness and will act as a good reminder to me on those occasions when they’re pushing my patience to its very limits.

Marvellous M

This week I’ve had M’s school report and Stagecoach report to enjoy. I was equally thrilled with both. I expected the Stagecoach report to be glowing, after all, as his drama teacher stated, “M was born to perform on the stage”, but I was a little more apprehensive about his school report. I know his behaviour is impeccable there, but academically this has been a tough year. The last 5 weeks, since we got the dyspraxia/dyslexia diagnosis, have seen a real turn-around in his attitude to his school-work. All the aids we’ve put into place have seen him make huge strides forward and he’s much more confident in how well he can do.

To my delight, we also finally got to see the short charity film that M took part in about 6 weeks ago. It focussed on Domestic violence and is hard-hitting though not overly graphic. He performed well and enjoyed every moment of the filming.

He’s also understood that G has had to focus on her own school-work (see more details below) and has given her space to just sit down and get on with it. I was immensely proud of his attitude on the last night of working on it, when he had to entertain himself for the best part of 2 hours as G and I reviewed, finalised and polished her final effort. I heard not a word of complaint from him and he regularly checked in with me to make sure I knew where he was and what he was up to.

However, it’s not just his reports that have made him my hero this week. It has been his approach and stoicism to taking his medicine. As I’ve mentioned several times, his recent flare-up has been hard and has really knocked his faith that things would improve. The revolution of Grandma’s jam, as mentioned in a previous post, has helped enormously when it comes to his new medicine.

To put it simply, he’s taking it. Despite feeling poorly, hating the taste and with a depleted appetite, M is taking all his medicines every day without argument, or at least with the minimum of fuss, because he knows he needs to and there is still a small spark of hope that this will help hiding somewhere inside.

Gorgeous G

I’ve also had the pleasure of G’s music, school and Stagecoach reports to read. Each report commented on her hard work, positive attitude and determination to give 100% to every new task set. Despite her nerves, she has performed solos on her clarinet at school and in the end of term performance for Stagecoach and really gave her all. She listens well, takes instructions and applies them to the task in hand. She doesn’t have M’s academic struggles to cope with, but she does have to deal with me having to give attention to M at home when they’re doing their homework and she’s worked hard to complete as much of hers on her own as she can.

Mr.G, G’s teacher this year, praised her for being “always cheerful, courteous, co-operative and helpful…very reliable and always willing to help with a smile”; whilst her Head teacher commented that it was an “impressive report” and her continued efforts would see her having a “very successful Year 5.”

G has been working incredibly hard over the last 5 weeks on a project for school, where she had to choose her own topic and complete independent study and research for it. She decided to write about Canada and has spent her time reading reference books, researching on the internet and talking not only to Mike, but her cousins and grandparents too. The piece of work she has produced is amazing and she is rightly proud of it. She finished it by preparing a powerpoint presentation and photo montage to show in class, which was a learning experience for us both as it’s not a piece of software I’ve particularly used before.

Most importantly, despite her disagreements with M and the frequent sibling wars we have in the house, G has also been aware of M’s struggles with his new medicine and has encouraged and cheered him on every step of the way. She has given him massive support and has managed to coax him to take “just one more mouthful” when he’s found it especially difficult and my powers of persuasion are failing. M is very lucky to have a big sister who will hold his hand and let him cuddle her teddy bear when times are rough.

Sometimes my children are a challenge and I find myself rolling my eyes as I pull them apart for what feels like the twentieth time that day. Sometimes I want to disappear from their world and just go back to being “me” – not head chef, not referee, not problem-solver extraordinaire. Today, I’m happy and proud to be Mummy and to shout out loud about all their achievements.

There’s nothing like team-work!

School’s out for summer!

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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

Grandma’s Jam

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A couple of weeks ago, as we were talking about him starting his new medicine soon, the impact of this current flare up on M became evident as he sobbed in my arms “What’s the point Mummy? The medicine won’t work because none of them are making me better”.

To hear that your 7 year old is feeling that low and despondent simply breaks your heart. I struggled with knowing how to encourage him to try yet another medicine, knowing that so far our 2 year journey hasn’t waved the magic wand we’d all been hoping for and, whilst things are so much better than they were back then, there’s still an uphill struggle to face.

The biggest battle was finding a way for M to take it. He has to take this one 4 times a day, which means I have to send it into school and can’t send it in its capsule form because he finds that too difficult to swallow, though he continues to persevere to take it the “grown-up” way. The registrar at GOSH suggested we broke the capsule and mixed the powder into a drink or his meal. The taste is vile and tainted everything we tried. He didn’t like it mixed into his food or drink and I was left scratching my head about this one.

As I sat at the kitchen table wondering how to avoid pinning M to the ground and forcibly pouring it into his mouth – don’t laugh, I’ve been there before – I knew where to seek the advice I was after. Thanks once again to the amazing FABED community, I got a great suggestion which would not only make it more palatable for M, but also easy for the school to administer.

Jam.

A spoonful of jam into which you mix the contents of the capsule is an ideal M-sized mouthful and one that he’s willing to take. Grandma’s home-made jam, sent all the way from Canada, is the perfect vessel for his new medicine. He loves Grandma’s peach jam anyway, but his preference for his medicine is strawberry. Fortunately, a care parcel arrived at the beginning of July containing 3 new jars of the strawberry elixir and that will certainly help.

The only question now is, having discovered the secret to successful medicine-giving for M, just how long this little lot will last?!

7 jars and counting

7 years to diagnosis

Searching for an answer

Tag Archives: EGID

Apples

With a little help from Easyjet

The Pellet Study

The Allergy & Free From Show North, Liverpool

This summer

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My child with Super powers

Proud Mummy moments

School’s out for summer!

Grandma’s Jam