Category Archives: General

“Nothing can hold us back”

This week is “Feeding Tube Awareness Week” and a great opportunity to raise awareness and garner support for those brave children and young people who are currently living with a tube to provide essential nutrition. Their motto for the week is “Nothing can hold us back” and for many a feeding tube allows them to take precious steps forward. There are a number of different feeding tubes that can be used: NG-tubes, NJ-tubes and TPN to name just a few, and you can find out more information about all of these from The Feeding Tube Awareness Foundation here. The reasons for a feeding tube are even more varied then the number of tubes available and can include premature birth, EGID, Cerebral Palsy and over 200 other conditions and diseases.

As well as the initial trauma of facing the decision to start your child on tube-feeding and the challenge of placing the tube, families then have to learn all about giving feeds, looking after the tubes, replacing them when necessary and how to deal with the little complications that can make a big difference. The prospect of tube-feeding can be a frightening one, but these children are able to go to school, play and participate in after-school activities alongside their peers with the right support given by trained medical staff, friends and family members.

Ms first tube

Whilst our journey so far with M has been tough and continues to throw new challenges at us from time to time, this is one thing that so far we have not had to face. M has had feeding tubes twice – once when he was first born so prematurely at 33 weeks and secondly, for just a week back in October, when he was admitted to GOSH. As I recounted then, it took a while for my brave boy to become accustomed to it and to stop worrying that it might fall out at any moment, but he did. We know that we are extremely lucky as there are a number of EGID children out there who are dependent on a feeding tube to give them the daily nutrition they need.

October 2013 and another tube

The decision to start your child on such a path is a difficult one for any parent to make and there are no guarantees as to just how long that tube might be in place. At the moment some of our wonderful FABED friends are surviving life with a feeding tube, some have finally managed to say goodbye to that tube and others are contemplating whether a tube may be the next step for their child. To all those families, this week is for you and about you and the support and understanding you all deserve.

You can read more first-hand experiences here:

musingssahm.blogspot.co.uk – Feeding Tube Awareness week 2013
musingssahm.blogspot.co.uk – “Wiggling the Wires“
afeedersdigest.wordpress.com – “Why is that pipe up your nose?“
afeedersdigest.wordpress.com – “What the hell is an NG tube and elemental feed?“

Ginger creams

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Since our appointment at GOSH at the beginning of January, I have had to flex my baking muscles in an attempt to create some tasty treats for M. Some of our old favourites have had to be shelved due to the additional exclusion of potatoes and raisins from his diet and choices have become limited. I’ve chosen to work within the constraints of rice flour, despite how granular it can taste, as we are fortunate to receive this on prescription for M. This means that every new recipe has to not only be delicious, but also moist enough to incorporate the rice flour and disguise its texture. I can’t imagine that my baking and cooking adventures will continue at the current rate, but this week’s offering is a definite winner and one I’m delighted to be able to share.

Courtesy of thedailybalance.com

One of my all-time favourite treats has to be Fox’s Ginger Crunch Creams, which combine a deliciously crunchy ginger biscuit with a cream filling that has a hint of ginger too. I’m a big fan of ginger of any kind, always have been and, having been treated to one of those delicious biscuits recently, I decided it was about time I made a version M and G can eat. I have never made ginger biscuits before, so wanted a recipe that was relatively simple to adapt for M. I found. and rejected, a number of recipes that I felt had too many steps and ingredients to work in a M-friendly environment, before settling on this recipe by celebrity chef, Paul Hollywood, who is now perhaps best known for his role as a judge on the Great British Bake-off.

As this recipe for his Mum’s ginger biscuits contains just 5 ingredients, I felt up for the challenge and set about making my M-friendly adjustments. The whole process was quick and easy, and I was very impressed with the results. I decided to leave a handful of biscuits plain, but whipped up a delicious ginger “cream” filling to sandwich the remaining pairs together. I used a simple home-made buttercream icing that I flavoured with some ground ginger and created my home-made ginger creams.

Both G and M enjoyed the biscuits, although I may have added a little too much ginger to the filling for their taste, which was reflected in their scores of 7.5 out of 10. I have taken their comments on board and will try to remember to reduce the amount of ginger I use the next time I bake these treats. I am certain that it would be relatively easy to also adapt both the biscuit and cream filling recipes to mimic the others currently produced by Fox’s, or indeed any other flavour that might be enjoyed. The rest of the family loved them and I can highly recommend them dunked in a nice cup of tea!

Mr Sandman

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Sleepless nights are the bane of many new parents’ lives. You don’t realise just how dependent you are on 8 uninterrupted hours until you no longer have them. We were truly lucky with G. She was one of those very irritating babies who slept through from 6 weeks old and quickly developed a habit of 10-12 hours each night, meaning we never really suffered with early mornings either.

The first few weeks of M’s life lulled us into a false sense of security. He spent many of those early days sleeping, something that is typical of preemie babies I’ve learned. However, once we’d hit, and passed, the magical point of his due date, everything changed and not for the better. From the age of about 4 or 5 months to the present day, I can count the number of full nights’ sleep on the fingers of one hand. Actually, I don’t even need that hand to enumerate those memorable occasions because the only undisturbed nights that Mike and I have enjoyed in the last 8 years are those when M has been staying with my Mum.

Last year, we thought we had finally turned a bit of a corner with M’s sleep habits. We had persuaded him, through the lure of sticker charts and a much-desired Lego Millennium Falcon, to start going to sleep in his room. His bedroom was revamped for his birthday to match his passion for everything Lego Star Wars and became a place befitting of his 7 year-old status. I won’t pretend that it was all plain-sailing, but we gradually moved away from the constant shouts downstairs for food or stories until he was finally falling asleep in his own bed, albeit close to 11pm most nights. His 2am visits into us also slowly started to disappear and it really felt like the sleep issues were on their way out.

Unfortunately, we were once again counting our chickens too soon and, in the middle of 2013, everything reverted back to the old “norm” with a bump. I can only assume that a big part of this dramatic shift was the unexpected decline in M’s health that had started in the April. Since then, M has been almost completely unable to fall asleep by himself and spends almost every night pleading with us to “settle” him at bedtime. It doesn’t matter has much settling we do, within minutes of us leaving him tucked up in bed and heading downstairs for our own dinner or jobs to do, M is up on his feet, singing and dancing to whichever CD is that night’s pick. The rhythmic thuds that accompany our evening meals are a constant reminder of just how awake he is, but he seems unable to switch off and relax.

Around 9.30pm the questions start floating down the stairs: “Can I have a snack because I’m starving?”, “I need a drink – I’m dying of thirst” or, my personal favourite, “What time is Mummy coming to bed?” It is this last request that inevitably traps me between a rock and a hard place. If I go upstairs after about 10.15pm, M will climb into bed beside me and be fast asleep within 10 minutes; BUT any attempt made too early is a complete disaster. M will just lie next to me, hunting for Odlaw, Wenda and the rest of the Where’s Wally? gang, chattering away and almost without fail, I will be in dreamland before him.

Since Christmas, things have been getting progressively worse and Mike and I are both almost at wits’ end. This last weekend was spectacularly bad on the sleeping front and we’ve had to do some quick thinking to try and get things back on track. One of the biggest complaints we have from M is that he is hungry, regardless of how much he’s eaten throughout the day. To avoid a repeat of Saturday’s demand for a snack at 11.45pm, we have introduced a relatively substantial snack for M before he goes to bed. As soon as both G and M are washed, in their pjs and otherwise ready for bed, they can each select a snack or two to have, along with a mug of either hot chocolate or hot milk and honey. We tried this for the first time last night and appear to have scored an early success with no subsequent food necessary before he went to sleep.

Secondly, we’ve given M an incentive to improve his behaviour at bedtime and reduce his demands on us. We’re off on a big family holiday later this year and both children are keen to earn some spending money for whilst we’re abroad. M’s modest request for £5.90 for the 3 weeks has been judiciously upped a little and he can earn stickers (yes, we’re back to that damn reward system once again) for working hard to achieve this target. The stickers are awarded retrospectively, so last night’s bedtime routine and today’s behaviour will be assessed at snack-time tonight and stickers given accordingly.

Draining as all this is, I have been able to draw some comfort from discovering that we are not the only EGID family struggling with sleep issues at the moment. Another Mum recently posted about her anxiety over her child’s sleeping on the FABED forum and asked for help. Within a relatively short space of time, replies flooded in from across the country, from other parents who have been there and who are quite probably still dealing with it. I found it particularly interesting to read the perspective of a now adult EGID-sufferer, who was able to explain to us all exactly how the condition can impact on the body and therefore on sleep.

So, for all you parents out there who are longing for a good night’s sleep, believe me when I say that I feel your pain and will be hoping that the sandman visits your homes sooner rather than later tonight.

Time for elevenses – choc chip cookie anyone?

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Another peaceful Sunday afternoon could only mean one thing – another chance to try my hand at a new recipe. Since our last visit to GOSH, M’s diet has become even more restricted and I desperately needed a new treat to add to his lunch-box and hopefully bring a smile back to his face. Whilst the children were outside enjoying some long-awaited sunshine and Mike was working on our bathroom renovation plans, I sat at the kitchen table, pouring over my vast array of cookbooks. This may come as something of a surprise, but I only have one that is dedicated to allergy-friendly cooking, instead I prefer to take my inspiration from regular recipes, which are adapted to suit M’s food needs.

Courtesy of theguardian.com

I had already looked through my store cupboard to see what interesting ingredients might be waiting for me to use them and stumbled across a pack of Moo-free dairy-, and soya-free chocolate drops. For those who have yet to discover the delights of Moo-free chocolate, this amazing product has been a real revolution for our household. Not only do they produce chocolate buttons, but themed chocolate bars for Christmas and even Easter eggs that are suitable for both dairy- and soya-allergy sufferers. I added their Cranberry and Hazelnut chocolate to M’s Rainforest flapjacks recipe, which became an instant hit in our household last summer.

Chocolate drops could only mean one thing – chocolate chip cookies. I had a quick hunt through the books and found a recipe that seemed to be easy enough to convert for a M-friendly batch. It came from a fundraising cookbook called “Squeeze your Lemon”, which Father Christmas kindly left in my stocking a few years ago. I hadn’t before attempted a recipe from here, so was excited to see just how well the cookies would turn out.

The recipe itself was easy to follow, though the end result was a little sweet for my tastes. G and M sampled them warm from the oven and, after mere seconds of deliberation, awarded them – and me – a more than satisfactory 9 out of 10. The only complaints were that they were too crumbly, which is probably due to the rice flour used, and that they were too puffy! M insists that they would have been near-perfect if only I had made them a little smaller and flatter. Either way, the recipe worked well and a cookie has found its way into 2 small lunch-boxes every day this week. A definite bake to add to my ever-increasing repertoire, which makes it a success in my book.

New year, New plan

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The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team. Mike and I had our list of queries drawn up and were determined not to leave without some answers. Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer. It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner. My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds. We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all. I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy. This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it. We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months. He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet. Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation. We’ve now got 2 more to add to the daily regime: Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition. If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones. So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all. I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian. She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms. We agreed to tackle the 2 that he has complained about when suffering from reflux. His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed. So, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries. Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped. We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet. It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.

Sweet – and Savoury – Crumble

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I love cooking, I really do, though it has to be admitted that sometimes I get more than a little fed up of constantly re-hashing the same old recipes week in, week out, to feed my terrible two. We are not a family that eats a great deal of puddings, but I do like to occasionally whip up a special dessert for after Sunday lunch if inspiration should hit. Last week I decided to use up the blackberries that had been lurking in the bottom drawer of the freezer for a while and add them to that old family favourite, apple crumble.

I have to confess that I am so adept at making crumble these days that I no longer weigh and measure out the ingredients, but rather use my experienced eye to achieve the mixture I’m after. However, with a view to wanting to add this recipe to my blog, I took my time and painstakingly recorded each and every element of my recipe to share. A delicious apple and blackberry crumble served with lashings of custard, made using Bird’s Traditional Custard powder, which is amazingly gluten-, dairy-, egg- and soya-free when mixed with old faithful rice milk, was the perfect way to finish off our Sunday lunch.

During the week that followed, I took my standard crumble recipe and adapted it to create a delicious, if unusual savoury dish. Here and now I admit that I cooked this for just Mike and me, knowing full well that my chances of getting G and M to eat it were somewhat slim, BUT there is no reason why this couldn’t be served to food-allergy-suffering children as it was, for the most part, M-friendly.

This time I cooked mushrooms, onion, garlic, courgette, sweetcorn and tomatoes together and added a hefty sprinkle of madeira, thyme and creme fraiche* to make the base. I then mixed in some rice before covering the whole with my crumble mix. For this savoury dish, I made the crumble without any sugar and instead included chopped chestnuts and some more thyme to taste. As this meal didn’t need to be M-friendly, I also stirred in cubes of blue cheese, though this could easily be replaced with the wonderful Violife vegan cheese that I have recently discovered for M. I baked the final dish for around 25 minutes and served hot.

I was delighted with the end result, which could easily be adapted to include other veg or meats depending on your own tastes. My recipe was based on whatever was hiding in the corners of the salad bins at the bottom of the fridge and is a meal that I know I could convert for M and G’s tastes too. An easy dinner and one perfect for a cold winter’s night!

Courtesy of telegraph.co.uk

* you could easily replace the creme fraiche with coconut cream or any other grain-based cream if you need it to be dairy-free.

Eating my words

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For some time now, we’ve been seeking some emotional support for M as he struggles to come to terms with his condition and the impact of a restricted diet and the associated health issues on his day-to-day living. As the result of a GOSH recommendation, we sought a referral to our local CAMHS service to see if they could offer any counselling to M. We also hoped that we would have access to some family support as we all find it difficult at times, G especially, as she deals with her own reactions as well as M’s mood-swings.

Courtesy of connectsociety.org

Sadly, our experience of CAMHS has been less than favourable. The worker we saw had not read M’s notes, didn’t understand why we had gone to GOSH for treatment and had no idea that he had been diagnosed with a chronic bowel condition. She talked about using sticker charts to encourage him to use the toilet and failed to recognise that, in M’s case, it wasn’t that he wouldn’t use the toilet, but rather that he couldn’t. At our last meeting, Mike and I sat in disbelief for nearly an hour and a half whilst she repeated her theory that a reward system would be the answer to all our woes; and our jaws hit the ground when our repeated comments about his “diagnosed chronic bowel condition” finally sunk in and she pondered whether maybe she would benefit from taking a look at the letters written by his consultant from GOSH.

In the letter that followed, she discharged him from her care and suggested that we instead got a referral to our local NHS Bowel and Bladder clinic for their input. I was unsurprisingly sceptical, having spent some time at one when G was suffering from her own bowel problems a few years ago, and feared that the ubiquitous zticker chart would form the crux of their treatment plan. However, I have long since come to the conclusion that the only way to get the help that we need, is to agree to whatever steps the health professional concerned recommends and tick those boxes to prove that we really are taking the situation seriously.

And so this past week saw us attending the local Continence clinic, which runs once a month in our GP’s surgery. I was brutally honest with the nurse we met with, T, telling her within minutes of sitting down that I was not expecting much to come from our meeting. I apologised for my negative attitude, but admitted that I felt I needed to be honest, so that she understood the position we were starting from. At this point, my expectations were low – and about to be blown out of the water!

T was not phased by my comment, but instead admitted that she too was uncertain whether she could help M or not, but having read his notes thoroughly and all the letters from GOSH, she was keen to offer whatever help and support she could. I knew at this point, that this meeting was going to be a very different one from that I had been anticipating and the following 45 minutes proved this to be very much the case. We talked at length about M’s history, his diagnosis, the experiences over the last 9 months and the problems we have recently faced.

http://www.eric.org.uk

She expressed no surprise that M has been struggling emotionally to come to terms with his life as it now is and discussed with me about how isolated M must be feeling. She pointed me back in the direction of the wonderful charity, Eric, which offers support and advice about childhood continence issues. Not only do they have a telephone helpline manned by knowledgeable and sympathetic volunteers, but there is also an area specifically designed to enable children to discuss their toileting problems with others in the same situation should they want. We had made extensive use of their website when struggling with G’s problems, though we had never thought to look at the children’s area with either G or M.

Most importantly, she suggested a change to M’s prescribed laxatives, but was insistent that I discussed her proposals with our gastro team at GOSH, who fortunately we were seeing the following day. My biggest fear was that she would be as reluctant as our local hospital to get involved in M’s care and would not be willing to discuss him with GOSH – nothing could be further from the truth. T reassured me that she would work alongside GOSH, and us, to make sure that M is getting the very best care and would help us make those little adjustments to his medicines that feel so complicated when I’m discussing them over the phone to London.

Courtesy of http://www.flickr.com

We still have an initial assessment with our local paediatric team in place for February, and it would be fantastic to have them on board too, but I no longer feel so dependent on that relationship working out this time round. We have found instead, an even more local solution to our need for support and I have never been so glad to be left eating my words and being proved wrong.

National Spaghetti Day

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The accidental discovery through Twitter that January 4th is National Spaghetti Day was a welcome answer to that age-old dilemma in our household of what precisely to cook for dinner. I’ve never been that impressed with gluten-free spaghetti as it has inevitably turned into lumps of glutinous mess, rather than the delicate strands it starts out as, no matter how I’ve cooked it. This time I decided to try some of the Glutafin spaghetti we were given at the Allergy and Free-from Show back at the start of last summer to see if I could get a better result.

The biggest decision I had to make was what sauce to concoct for G and M. They’re not too keen on a traditional bolognese and I wasn’t sure I could adapt a carbonara recipe without a little work beforehand. There’s nothing I love more than just throwing together ingredients from the fridge and, as M had expressed a desire for prawns the night before, I decided to base my pasta sauce on those and the little smoked salmon I had left after Christmas.

Apologies for the poor quality of the photo, but the pasta was delicious!

Using my fail-safe base of onion and garlic, I added the prawns, some smoked salmon trimmings, corn, peas and some chopped chestnuts. One of the challenges that we’ve given G for 2014 is to choose a new vegetable or fruit to add to each meal. The variety of fruit and vegetables that she eats is relatively limited and we have struggled to successfully increase the amount she will eat. At every meal, I am now offering her a choice of 2 she dislikes or hasn’t tried before. She can choose which one she would prefer and then add it to the meal in some way or another. For this meal, G had the choice of adding tomato to the main course or orange to her pudding and quickly decided on the tomato. I added a chopped tomato to the pasta sauce and finished it with some coconut cream.

I cooked the spaghetti in strict adherence to the instructions on the pack – boiling water, a tablespoon of olive oil and stirring the pasta only once before allowing to cook for 10 minutes. I was pleasantly surprised by the results and the spaghetti was an immediate hit with both G and M.

This was a quick and easy pasta recipe that made use of some of the leftovers from Christmas and a selection of vegetables from the fridge and freezer, whilst being completely M-friendly. You could obviously add whatever vegetables you wanted – I added courgettes and mushrooms to the sauce for Mike and me to enjoy – and can always use cream or creme fraiche instead of the coconut cream if you don’t need to be dairy- and soya-free. Best of all, it got that all important extra vegetable into G with the minimum of fuss!