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.

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