Time flies when you're having fun!

Well, I can't believe it's exactly a year today since I started writing this blog. My posts started very enthusiastically and expeditiously and have gradually dwindled and spread out a little as I've gotten on (and off and on again) my soapbox and vented my spleen about the various niggles and challenges I have had. However, I think that's the case with most blogs, unless the authors get into the commercial realms and although the frequency of posts has reduced, my enthusiasm for the topic and my love of writing about it has certainly not.

My initial aim in starting the blog was to share my experience as a mum with a child with Coeliac disease, in the hope that it might be of some use or interest to other parents in similar circumstances. What I have found is that, through writing, I have gained a way to clarify and get some resolve around the events and situations that we have been faced with. I regularly encourage my clients at work to journal about their experiences to gain catharsis, and can now honestly say that I have first hand experience of this benefit of putting pen to paper (well, finger to keyboard at least). I have also had the privilege of having other parents and people with Coeliacs (and other autoimmune illnesses, some of which I was completely ignorant about) share their stories with me and have learnt a multitude through their experience. Through wider exploration of the web and exposure gained from my blog I have developed a little more insight into 'the gluten-free community' and the support available, from both commercial food companies and charitable organisations who work tirelessly to raise awareness for those who have to lead a gluten-free existence.

The modern day methods of communication being as incredible as they are, there is a little button that you can press when you write a blog that tells you who is looking at your blog, how they find it etc. This has been a revelation and a real source of encouragement, in that I had expected my family and friends to have a little nosey at the blog out of politeness and support, but had not expected much interest beyond that. The little button tells me (although it may be lying to stroke my ego), that people from all over the world have looked at the blog, including Russia, Australia, Germany, Peru and the Ukraine among other countries. How exciting to think that the world, although huge, can be brought closer through writing.

If you enjoy my musings, don't worry, this is not an epitaph, but I do want to take the opportunity to say thank you to everyone who has supported and encouraged me in my first year of writing and to anyone who has taken the time to read through the ramblings and rants.
(Oh, and thank you of course to my gorgeous girl Alexandra, without whom I would probably roll my eyes when someone is being 'awkward' in a restaurant, think that 'gluten-free' was another fad diet, and without whom my life would not be so complete- if a little challenging at times!)

Safety or Singling Out? Managing a Coeliac in School.

So, Alex has started big school. She loves it, is making friends and enjoys learning. I am re-learning English using the phonics method and am quite shocked at how difficult a language it actually is. 'Because it just is' has sadly become my stock response to 'why is it pronounced that way mummy?'. 

On a gluten front things have been interesting to say the least. School is trying hard, but I suspect managing a child with Coeliac's, particularly in relation to school dinners, has been a steep learning curve for them. 

First off, on the first day, the usual chef was unfortunately off (not planned) so I had to rush home and pull together a packed lunch when the substitute chef was uncertain that she could pull off a GF meal. ('We could do salad but can't really guarantee anything else'- not quite the hot meal I had envisaged.)

When she was back I met with the school chef, who was very kind and accommodating. She had not catered for a Coeliac child before (there was apparently another child with Coeliac's in the school, but they were sticking to sandwiches until they saw how things panned out- sensible!) however, she had a relative with the condition, so had some understanding. She asked me to bring in some staples which I could get on prescription, which took me off the fence re the use of prescription food (see previous post). Having agreed what adjustments the chef could make, she told me we would also have to meet with a representative from the council (who subsidise school meals) who would go through everything we had discussed again. (Great use of time for a working mum, I love duplicate meetings). In any case, I was really encouraged by the school's response and the fact they were willing to cater for my child. And then the chef told me about the sash. I didn't really think about the implications of the sash until later when I was reflecting on the meeting and the positiveness of the school. 
'All of our allergy children have different colour sashes depending on what they need to avoid' -they what?-' yep, orange will be for coeliacs, purple for nuts, a different colour for dairy etc etc'.
On the surface, this makes sense- everyone who's serving the children food knows that they have to double check what they can/ can't have. In terms of social inclusion/ not singling children out/ highlighting difference- not so good! 

Does it work? Well, we're nearly at the end of term 1 and have had 2 gluten accidents so far. School aren't sure that they were they cause- there were stomach bugs going around. Given the time lines, symptoms and recovery rate, I'm pretty sure school had a (significant) role to play.( I also find it highly unlikely that all of their fish fingers are gluten free, as we were told, given the variation in price between GF and bog standard fish fingers, but if they say so! )

How and ever, it's always a learning curve when it comes to feeding a Coeliac, so I'm prepared to accept a few transgressions while they're learning the ropes (although poor Alexandra has paid the price). In the actual class room, the teachers have been very good at checking ingredients with me for food based activities, only giving appropriate treats and ensuring other children don't 'share' food. Hopefully things will continue to improve.

And with regards the sash- Alex thinks it's wonderful and makes her feel special, so who am I to argue for integration and social inclusion at this point- long may her pride in her difference continue!

Post Script: My husband read this post and wants me to point out the he stepped in and attended the meeting with the person from the council- he's very supportive!!

Starting school- as easy as ABC?

I guess for any parent your child starting school is going to be emotional. The disbelief that they have grown up so quickly, the worry about whether they'll make friends, the concern that they'll enjoy it and fit in (and secretly hoping they won't be thick as two planks and will keep up with the school work!). With Alexandra due to start school in September, I've had the added worry about how school is going to manage with her gluten-free diet.

When Alex was in a day nursery, we had quite a few accidents until we had the processes in place to protect her (see more here). We certainly got there in the end, but it took a while.

For the past year, Alex has been going to a pre-school for three hours a day. She wasn't eating meals there, and luckily, we had no gluten accidents. There were lots of examples of really good, inclusive practice when Alex was at pre-school, but also a few things that happened that made my heart sink.

For organised activities, the pre-school was fantastic. Alexandra's teacher was lovely and asked me where she could get gluten-free porridge when they were doing Goldilocks and the Three Bears (Asda do sachets if you need some for your little bear!) She also found a G-F recipe for the ginger bread men they made and double checked it with me. There were lots things like this where they were spot on.

Some of the less good issues were just a result of thoughtlessness or lack of understanding, for example the teaching assistants offering Alex chocolates on the way out of school on birthdays. At Christmas, they were making sandwiches for the kids and asked us to bring in some G-F bread so they could do some for Alex- a quick 101 in avoiding cross-contamination was required. My worst heart sink moment was at the summer party (when I came straight from work so had no spare treats in my bag). There was biscuit decorating (noooo), squash and biscuits (noooooo), and some ice pops, which would probably have been ok except the box had been thrown out so I couldn't check ingredients (nooooooo)! That said, Alex's teacher was very keen to learn about Coeliac's and I think will be a lot more confident if she has any kids with the condition in her class in the future.

Alexandra's new 'big school' is not connected to the preschool, so is another unknown. At the parent introduction evening we approached one of the teachers to ask whether it would be possible for the school to cater for Alex's condition. (Kids are in school until 3.30 in the UK, so have the option of having a hot school meal instead of bringing in a packed lunch). The teacher requested a letter from our GP to confirm that Alex had the condition, and agreed to meet to discuss how to manage it. When we went in for Alex's visit, she had obviously discussed the condition with the cooks, who told her they had catered for kids with Coeliac's before and it should be fine. She asked for any written info about what Alex could and couldn't eat so I directed her to the Coeliac UK website (they have a section for caterers on it http://www.coeliac.org.uk/food-industry/caterers-and-restaurateurs/caterers-and-restaurateurs-faqs). We also agreed that it would be useful for me to bring in a 'treat box' of things that Alex can have if other children bring in birthday cake or anything like that. In September we will be writing up a care plan highlighting any special measures that the school will put in place to manage the condition and this will be reviewed and updated if there are any issues. Watch this space.....!

When Alex was initially diagnosed, the consultant told us that the move to school, when she would be out of our sight more and wanting to assert her independence, was a time to be ultra-vigilant. At the time it seemed like forever away, and now it's looming. Overall, I'm feeling hopeful about the diet- now just need to worry about how to convince Alex that pink shoes aren't appropriate for a navy uniform and that writing looks better going across the page instead of down the side!

Jen

PS: this is the ginger bread recipe that the school used. I can't comment on taste as it was gone by the time I picked her up- probably a good sign!

340g plain G-F flour
4oz softened butter/ marg
100g soft brown sugar
190g golden syrup
2 teasp ground ginger
1 teasp bicarbonate of soda

• preheat over to 190 degrees C.
• Beat the sugar and marg together until light and creamy.
• Add the golden syrup and sift in flour, ginger and bicarbonate of soda.
• Mix until a rough crumb begins to form and then work the mixture into a smooth dough using your hands.
• Refrigerate dough for 10 mins or so until firm.
• Roll out dough between 2 sheets of cling film or baking parchment until 4mm thick.
• Cut out shapes using cookie cutter or roll out small balls and flatten slightly onto a non-stick baking sheet or tray lined with baking parchment.
• Bake for 8-10 mins until golden brown. Let cool on tray for a minute or two then transfer to wire rack.

A coeliac in childcare: she's been throwing her food on the ground!

When Alexandra was diagnosed with coeliac disease I was working four days a week and Alex was in a day nursery. She had three meals a day there, so they were going to have a huge role to play in maintaining her gluten free diet. The nursery had always been great for food- they had a dedicated cook and a very varied menu, prepared fresh every day.

Before Alexandra returned to nursery I sat down with her key worker and went through exactly what the dietician (the proper paediatric one, not the ditsy one) had told us. We had been given a list of what plants, grains and cereals have and haven't got gluten in them and nursery took a copy of this. We did have a shorter cheat sheet, but the more comprehensive guide can be found on the American Celiac Association website here : http://www.csaceliacs.info/grains_and_flours_glossary.jsp  (they spell 'coeliac' without the 'o' in the US!)

Initially, things were looking up and Alex was eating well, putting on weight and getting back to walking and playing with her little buddies. We did have the odd few 'blips' along the way though. I want to point out that our nursery was fantastic on the whole, and we were very happy with them. I am highlighting the mistakes that were made in the hope that others can pre-empt and avoid them completely.

Is it a fair substitution?
When the babies are young at this particular nursery, the parents always get a list of what the child has eaten that day. I don't know why I didn't ask, but for some reason I just assumed that Alex was eating pretty much the same as the other kids with one or two substitutions. It was only when I was told that she had thrown her pudding on the floor and it was not the first time that it had happened that I wondered. Very apologetic for her behaviour I asked what it was that she had thrown on the ground. 'Orange slices' I was told. Oh right- and what did the other children have for pudding I asked, my heart starting to sink. 'Chocolate chip cookies' I was told. Hmmm, that might be part of the cause of her 'irrational behaviour' I suggested, there's quite a difference between orange slices and chocolate chip cookies. I'm sure some saintly 2 year olds would choose the fruit, but not my sugar lover! 'Our cook bakes the puddings fresh and there isn't always an equivalent substitute' I was told. Well, I went to Asda and bought a box of mini gluten free muffins and a packet of gluten free biscuits and asked for them to be kept in the cupboard and given to Alexandra if the kids were having a sweet treat, and to be informed when they run out so I could replace them. I was never asked to bring in more food, and Alexandra was always given a similar meal/ pudding from then on. Sometimes the nursery bought treats in, but also their cook started baking batches of GF cakes and freezing them.

They were also really good in consulting with me regarding Alexandra's choice of cereal, and always had her favourite Doves Farm GF chocolate stars for breakfast.

Let's swap food:

There were more challenges when Alex was 2 ish and the kids started eating from each other's plates. After a few 'incidents', the nursery decided to assign a nursery worker to watch Alexandra at meal times to ensure there wasn't any 'swapping' going on. We then had some issues with staff/ supply workers who weren't familiar with Alex's situation giving her the wrong food, so the nursery implemented a system where 2 permanent members of staff had to check and sign each meal she was given to ensure it was ok for her. I know this probably sounds complicated, but it worked. As we became more confident with the GF diet, so did the nursery staff and the number of accidents reduced.

Inclusiveness is important:
The nursery also made other changes, such as making playdough out of gluten-free flour so it didn't matter if Alex put her hands in her mouth before washing them. (It doesn't matter if coeliacs handle gluten containing products, but young children have a habit of putting their hands in their mouths and commercial play dough contains gluten.) When I discovered that they were putting Alexandra in a group that was doing a different activity on 'baking days', I provided some easy GF recipes and the staff were happy to include her in the baking group.

Another area that could have been fraught with difficulty was other children's birthdays at nursery. Parents would often bring in cakes or sweets to celebrate their little one's big day. The nursery never gave these out during the day anyway, handing the treat to parents to dole out when they came to collect their child. As Alex got older and realised that other children were getting 'something nice' the nursery started giving me one of her 'special' treats, wrapped in tinfoil, the same as everyone else's, so she didn't feel excluded.

Communication is key:
When managing a child with coeliac disease in a nursery setting, I think the main thing is communication, discussing the fears, concerns or questions of all staff (not just managers and keyworkers) in an open way and setting out what your expectations and concerns as a parent are. I feel it's important not to jump to blame when an incident occurs, but to look at a solution. Myself and my husband have certainly made the odd mistake (pulling the wrong fish fingers from the freezer-oops!), and have had to find systems that work to protect Alexandra in the same way that the nursery did. I can't believe that any nursery worker or carer, having seen the effect that consuming gluten can have on a child, would not do everything in their power to prevent it happening again and would be open to any suggestions or ideas that a parent can offer.

Alexandra no longer attends day nursery, she has started at nursery school, which has been another eye opener, and has fantastic child minders who are fully comfortable and able to manage her condition.

Please feel free to share your experience of  how your nursery coped with a gluten-free kid or any tips on how to manage a gluten free diet in a childcare setting?

Jen

Getting the Coeliac diagnosis: I'm in A & E, they need to admit her...

....Not what you want to hear first thing on a Monday morning when you're in a meeting a hundred miles from home!

Initial symptoms:
My 16 month old daughter Alexandra had been becoming increasingly unwell over the past months, we just didn't realise how unwell. She had been cranky, fussy with her food, more tired than usual, however, we had a litany of excuses. She was teething, we'd been on holiday and she was out of her routine, she'd changed rooms at nursery and was getting used to new people. When nursery told me she was staying away from other children and was fussy about contact with adults, I was secretly praying I wasn't going to have an awkward, socially inept child. When I spent a whole night walking the floors trying to comfort her I told myself I was going to have to get stricter with the controlled crying technique- I was obviously not doing a good enough job. It was only when one of our lovely nursery workers pointed out that she had in fact stopped mobilising (she had been cruising) that I realised there was something wrong.

Apparently other children with coeliac's might experience diarrhoea, constipation or vomiting along with weight loss. Indigestion and abdominal pain might also be present. Unfortunately Alex was too young to tell us what was wrong. A full description of symptoms can be found on the NHS website here: http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Symptoms.aspx

At the doctor's:
I immediately booked a GP appointment only to be told (after a very cursory exam) that 'it's probably a virus'. ( I have since made a complaint about the trainee GP, who palpated my daughter's stomach while she was still in my arms rather than lying on a bed as she didn't want to disturb her, but that's another story).
I booked another GP appointment for a week following that as I wasn't happy with the response but in the mean time had to go to London for the weekend for a work function, leaving Alexandra in the very capable hands of my hubby. During the weekend I had a number of increasingly concerned calls telling me that Alex was very lethargic, had diarrhoea, wasn't drinking. I got my hubby to call NHS direct who said to bring Alex to her GP on Monday morning- important but not too urgent. The next call was on Monday morning from the QMC hospital in Nottingham- Alex was being admitted via A & E, they weren't sure what was wrong and needed to do tests.

A week in the hospital:
When I got to the hospital after the most horrendous train journey of my life I looked at Alexandra with fresh eyes. She was listless, gaunt, with hollowed eyes, had a massive bloated stomach and her ribs and shoulder blades were visible through her skin. She looked like one of the Ethiopian  babies I remembered in charity campaigns from my childhood. In effect, she was starving. Her stomach was no longer able to digest the food she was consuming and she was malnourished. How could we not have noticed that she was fading away?
From the beginning coeliac disease was the differential diagnosis of choice, however my mind was preparing for all of the worse alternatives (leukaemia or cancer being the one that my imagination was honing in on). With coeliac's, you need to remain on a diet that includes gluten in order for the tests to be accurate. The main test used for diagnosis is a simple blood test which checks for a certain type of antibody which is present in people with coeliac's when they have been ingesting gluten. However, we were told that the test can sometimes be negative, when the person does in fact have coeliac's, and additionally, it could be a few weeks until the results are returned, therefore the doctors wanted to perform a biopsy.  This is where a tissue sample is taken from the lining of  intestine to look for signs of the disease. For adults this is done by endoscopy under a local anaesthetic.  Because Alex was so little, they needed to give her a general anaesthetic. After a night of no food or drink (and therefore no sleep), we eventually brought her down to theatre. Although I knew it was a routine procedure, my heart was breaking seeing Alex's little body lying in my arms and feeling her go limp as the anaesthetic was administered. However, the results were back in about 24 hours, and ironically,the blood test results came back a day later, both were positive for coeliacs.

Well, relief was the main feeling (it could be so much worse, we can handle this), followed by, confusion (what the hell has got gluten in it and what hasn't?). A brief visit by a dietician at Alex's bedside didn't help much (there were no paediatric dieticians available, so this lady was sent as she had been diagnosed with the disease herself- she was nice but a bit ditsy and vague to say the least- our experience with dieticians since has been much more positive).  Finally, after a week in hospital, the end of the beginning was over and our journey of living with a gluten-free kid had begun.

Alexandra is now nearly 4. We've learnt, often through trial and error, how to manage her diagnosis in various situations. We're still learning, and still have 'gluten mistakes', but it is alot more manageable than I'd initially feared.

I know through  Coeliac UK (  http://www.coeliac.org.uk/) that there are alot more parents out there who are being introduced to life with a gluten-free kid, so I thought I would start a blog to share some of the experiences, trials and tribulations that we have had.

I am an expert-by-experience rather than a medical expert, so please refer to other websites, or a health professional for any medical information. Please feel free to comment, ask questions or share your own experiences with me though.

Jen