Tag Archives: ill health

Medicines galore!

Lessons about the Press

My foray into the world of the local press over the last week has taught me some interesting life lessons. Last week was all about my appearance on our local BBC radio station to talk about EGID, National Eosinophilic Awareness Week and baking for a child with multiple food allergies. I had some great feedback from people who’d listened to what I had to say and thoroughly enjoyed the experience. The pros were all about getting that message out there and raising some much needed awareness about this rare condition. The cons were that I didn’t know what I was going to be asked beforehand as it was all completely unscripted and so missed giving some information that would, in my opinion, have made the interview even better.

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

Today an article featuring our family appeared in our local paper. The interview hadn’t been the easiest as I took the phone-call at work and could be spotted standing on one leg about 10 feet from the front of the office, with my left hand raised in the air in a vain attempt to get a decent enough signal to be heard at the other end – well maybe not really, but you get the picture! I don’t find explaining EGID the easiest thing in the world when sitting face to face with the person asking the question: there’s a tendency for the individual to begin to glaze over, right up until I mention that M struggles with multiple food allergies as part of his condition. At that point, their interest sparks up again as everybody inevitably knows somebody who can’t eat wheat/gluten/dairy* (*delete as appropriate). Now, imagine trying to discuss a rare and virtually unknown condition over the idiosyncrasies of the mobile phone network – nigh on impossible.

However, despite it all, I’m not disappointed with the article that was written. Okay, so the headline was misleading given our actual aim is to raise some much needed awareness about EGID rather than food allergies, but the reporter did include lots of important and accurate information. I was delighted that she included some words about FABED, without whom I doubt I’d have found the confidence to even approach the press to report about M, as this was the bit that was missing from my radio interview on Friday. To my delight, the paper has also agreed to run a small follow-up piece next week about our fundraising efforts this week and report how much money we have managed to raise for FABED. That will be my opportunity to include FABED’s website details and to encourage our community to consider supporting this worthy cause.

With all the excitement of 2 appearances in the local press within the space of a week, this media mogul decided she needed a break of the mundane task of family dinner and instead tonight’s menu was courtesy of Mike:

	M	Me	Mike
Breakfast	Home-made bread (1 slice) with free-from spread	Sliced pear	Bowl of: Free-from cornflakes Rice milk
Lunch	Sesame snaps Fruit buttons (blackcurrant) Chocolate cupcake (1/3) Home-made rice bread (1 slice)	Sakata rice crackers (6) Cucumber Celery Peanut butter	Brazil nut & sultana cereal bar (2) Mango fruit smoothie Apple
Dinner	2x home-made rice bread (toasted) Baked beans Pears (1/4)	Taco shells (4) Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes) Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)	Taco shells (4) Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes) Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)
Snacks	Sliced pear (1/4) Nakd cocoa orange date bar Dried apricots (3) Sakata rice crackers (2) Peanut butter

Quiet day

An early start to Awareness week

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National Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon. Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story. To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies. I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

The cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community. I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there. This time last year, I wrote about our decision to “eat like M” during the week: one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too. Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them. We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

	M	Me	Mike
Breakfast	Fruit buttons (apple)	Sliced pear	Bowl of: Free-from cornflakes Free=from rice pops Rice milk
Lunch	Roast chicken Sweet potato wedges Corn Peas Carrots Roast parsnips Really not dairy mayonnaise	Roast chicken Sweet potato wedges Corn Peas Carrots Really not dairy garlic mayonnaise	Roast chicken Sweet potato wedges Corn Peas Carrots Roast parsnips Really not dairy garlic mayonnaise
Dinner	Rice bread toast (2) Peanut butter Orgran tinned spaghetti Apple (1/2) Cucumber	Corn tortilla chips Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn) Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)	Corn tortilla chips Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn) Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)
Snacks	Nkd Rhubarb & Custard date bar Fruit string Chocolate cupcake Pear (1/4) Dried apricots		Dried apricots

Eosinophilic Awareness Week 18th-24th May 2014

Allergy UK Annual Conference

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To say that mornings and I do not get along is something of an understatement, and early mornings are the worst. I am, without a shadow of a doubt, a genuine, bona fide, card-carrying night owl and so anyone who saw me out and about at 6.30am last Saturday, was probably left checking their watches and convinced that something extraordinary was going on. The occasion was Allergy UK‘s first annual conference, being held at St Thomas’ Hospital in London. I first heard about the event at the start of this year and had been excited about the prospect of finding out more about allergies from the experts attending and presenting at the conference. The day had been designed to address the needs of individuals and families dealing with allergies on a daily basis and consisted of speeches and workshops as well as open Q&A sessions held during the afternoon.

Professor Peter Howarth of Southampton General Hospital was the keynote speaker for the day. He opened the conference with a fascinating insight into the on-going and future research that is currently being carried out in the area of allergies and allergic responses. He talked about the recently well-discussed research into peanut allergies, which is looking at whether it is possible to “switch off” the allergic response through regular exposure to peanuts in known sufferers, and whether this approach could be applied to other allergies too.

I was also fascinated to learn from Professor Howarth about the link that appears to exist between Vitamin D and the allergic response. Studies carried out suggest that Vitamin D can help to reduce the allergic response, particularly in individuals suffering from asthma or urticaria and it is evident that much more research into this area could be extremely beneficial, although there is no funding available for this at the moment. This is definitely an area I will be keeping an eye on to see if it could be of benefit to M in the future.

Mike and I then attended 2 afternoon sessions, the first of which was a child allergy workshop and proved invaluable, not least because Dr Jo Walsh, who ran the session, explained clearly and concisely the difference between intolerances, IgE allergies and non-IgE allergies. Her excellent explanation simplified what is a complex and much-misunderstood area and would be an amazingly useful tool when trying to explain M’s food allergies to anyone who comes into contact with him. She also touched briefly on how to manage the risks to an allergic child out of the home and brought to our attention the NICE guidelines drawn up in 2011, that cover the diagnosis of food allergies and intolerances in children.

The second workshop was run by Dr Helen Brough and was aimed at looking at dealing with allergies with teenagers. Although this workshop promised a lot, I felt that it didn’t really deliver on our expectations. The time allowed was just too limited to even begin to touch on what is a complex situation and certainly didn’t really offer any practical tips on how to deal with your teenager and their approach to life with their allergies. She focussed a lot on the Adolescent allergy clinics they are beginning to introduce, but the time was spent discussing what the parents and teens in the room would like from such clinics, rather than on what is actually provided.

All in all, we were impressed with the day and would be keen to attend another one should Allergy UK decide to hold it again. There was lots of information available on the day, but I would recommend that the workshop sessions be extended in length as 45 minutes was just not long enough to spend in discussion on such an involving subject. I will be keeping my ear to the ground to see if Allergy UK run another conference next year and will let you know the minute I hear anything about it.

And that’s a wrap

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

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

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

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

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

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

Another birthday celebration

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Guess what?

Today marks the first birthday of this blog.

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot. We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going. When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could. My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy. Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

Date of first post: March 13th 2013
Number of blog posts written: 95
Number of “followers”: 297
Most popular post: To whom it may concern
Total views of that post: 220
Highest number of hits: 165 in one day
Number of recipes shared: 27
Most popular recipe: The best chocolate cake ever
Total number of comments: 218
Total number of views: 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.

Our birthday boy

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Over the past few days, we’ve been celebrating young Master M’s 8th birthday. It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast. The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up. Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

M has become a little boy with a big personality. Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football. He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years. M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset. He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods. They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

Perhaps more unusual is his flair for all things theatrical. M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4. He loves to perform and is always looking for the next opportunity to do so. His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order. M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion. No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper. He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour. He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life. Yet he nearly always bounces back and keeps going with a positive attitude. The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”. It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

Local update

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You may remember that back in December, M was referred on an urgent referral to our local hospital based on the advice of GOSH. He was suffering from chronic constipation, was in considerable pain and was losing weight as his appetite decreased. Sadly, our local hospital felt it was unable to admit or treat M and instead our only option was to treat him at home, using a strong laxative and bucket-loads of patience as he struggled to recover his health. Our urgent referral resulted in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made. We thought long and hard about whether we wanted to take up this appointment or not, given our previous experience with our local hospital, but we knew that local input could make a big difference to all our lives and felt that this could be our way into the local system.

February’s appointment arrived quicker than we could have imagined and we went along with an attitude of “hoping for the best, but expecting the worst”. The symptoms that M was suffering back before Christmas have disappeared and we have had the challenge of changing his diet and his medicines again in an attempt to reach a status quo with the EGID. What we hoped for was a local doctor who would listen to our concerns and who would offer us the helping hand we so desperately need. We wanted a local doctor who could point us in the right direction at the hospital and would support our search for shared care between our local hospital and GOSH for M.

Instead we got a doctor who, through their less-than-professional manner, vocal criticisms of both our GP and GOSH and obvious impatience, left us feeling let down once again. They belittled our decision to seek a second opinion when the local hospital had let us down 3 years ago and were unimpressed that we had our own point of view concerning the care given to M. They reluctantly agreed to refer us on to the gastro team at the hospital, but made it clear that they believed it highly unlikely any of the gastro consultants would willingly take M on a shared care basis with GOSH. Mike and I weren’t surprised, but we were disappointed that this consultant chose to make their opinions known so clearly in front of our impressionable and sensitive 7 year old.

Needless to say, we are not letting things drop there. We have written a letter of complaint to our local hospital and are now waiting for their response to our concerns. I am writing to our MP to make him aware of how badly M is being let down health-wise locally, to see if he will get involved on our behalf. We will persist with the onward referral to one of the gastro consultants because we remain strong in our belief that shared care between our local hospital and GOSH is something M needs; AND we will continue to fight M’s corner to make sure that he is put first and gets the support he needs.

Medicine	Dose	When taken	Why?
Calcichew D3	1 tablet	Breakfast	A calcium supplement to ensure calcium intake is sufficient to protect bones due to malabsorption issues
Movicol	1 sachet mixed with 65mls milk	Breakfast	An osmotic laxative, which means that they relieve constipation by drawing water into the bowel to soften stools. Used to ensure M doesn’t get impacted again and we can adjust the dose as we need
Cetirizine	5mls	Breakfast Dinner	This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction. Typically used to help skin reactions and hayfever.
Ketotifen (Zaditen)	5mls	Breakfast Dinner	This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction. Typically used to help symptoms of allergic rhinitis.
Nalcrom (Sodium cromoglicate)	1 capsule	Breakfast Lunch Dinner Before bed	An anti-allergy medicine specifically used to prevent the symptoms of food allergy. It works to prevent the allergic reaction happening when food is eaten
Lansoprazole	1 capsule	Lunch	A Proton pump inhibitor (PPI) used to reduce the amount of acid produced by the lining of the stomach when digesting food and thereby reducing acid reflux
Senokot	5mls	Dinner	A stimulant laxative used to encourage the muscles of the bowel to move the stools through the body and prevent constipation. Again, we are able to adjust the dose as M needs
Neocate Active	1 sachet mixed with 300mls water	Evening	An elemental feed that contains amino acids, carbohydrate, fat, vitamins and minerals. Used to provide dietary supplementation for children with multiple food allergies. In M’s case, we believe that this is what helps him maintain his weight
VSL #3 Probiotic	1 sachet mixed into his Neocate	Evening	A probiotic supplement frequently used in patients with Inflammatory Bowel Disease (IBD). It works by forming a protective barrier on the walls of the GI tract

	M	Me	Mike
Breakfast	Milk (200mls)	Sliced pear	Bowl of: Free-from cornflakes Rice milk
Lunch	Sakata rice crackers (2) Fruit stars	Sakata rice crackers (6) Peanut butter Celery Orange	Sakata rice crackers (10) Peanut butter Orange Apple
Dinner	Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, coconut cream and egg-free mayonnaise)	Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, courgette, mushrooms, tomato, coconut cream and egg-free mayonnaise)	Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, courgette, mushroom, tomato, corn, coconut cream and egg-free mayonnaise)
Snacks	Sliced pear (1/4) Nakd cocoa orange date bar Dried apricots (3) Sakata rice crackers (2) Peanut butter Sweets		Carrot cake cupcake

7 years to diagnosis

Searching for an answer

Tag Archives: ill health

Medicines galore!

Lessons about the Press

Quiet day

An early start to Awareness week

Eosinophilic Awareness Week 18th-24th May 2014

Allergy UK Annual Conference

And that’s a wrap

Another birthday celebration

Our birthday boy

Local update

	M	Me	Mike
Breakfast	Banana (1/4)	Sliced pear	Bowl of: Free-from cornflakes Rice milk
Lunch	Nakd Berry Delight date bar	Sakata rice crackers (6) Cucumber Celery Peanut butter Orange	“Chicken on a stick” Eat Natural Brazil & Sultana bar (2) Apple Banana
Dinner	Orgran Mini Outback chocolate animals Smoothie (1/2 banana, 4 strawberries, 100mls rice milk)	Rice Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)	Rice Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)
Snacks	Fruit buttons (apple)		Blueberry smoothie