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Archive for the ‘health’ Category

The True Value of Gluten Free Food

This time last year our home was filled with delicious, gluten-containing foods and ingredients. Fast forward to today and both Biscuit and my hubby, R, are confirmed Coeliacs. In order to prevent cross contamination (see more information from Coeliac UK here), our entire home is now completely, 100% gluten-free.

When Biscuit was first diagnosed with Coeliac Disease, we met with her gastro (tummy) doctor. Dr K. told me that Coeliac Disease is unique in the fact that no medication is required and that by simply changing her diet she will be free of her painful and potentially debilitating symptoms, and she will no longer be at increased risk of the complications that can be caused by her eating gluten (see Coeliac UK’s list here). In summary; through absolutely no fault of her own, she must eat a completely gluten-free diet in order to stay healthy. We were lucky, our GP prescribed Biscuit gluten-free food. The prescription doesn’t cover everything (someone of Biscuit’s age gets 11 units a month and someone of R’s age gets 18 units) but it helps. 1 unit does not equal 1 item, see Glutafin’s table indicating how many units for each individual item here
And then came yesterday morning’s news that the NHS Clinical Commissioners chief executive has said that the NHS must reduce spending on prescription items that offer “little or no clinical value” (see BBC News link here). Gluten-free food is being categorised as such and they are talking about potentially banning GPs from prescribing it. Nb: I am talking about gluten-free food for Coeliacs not for those who choose to eat a gluten-free diet (just a friendly reminder at this point that Coeliac is an auto-immune disease, not a lifestyle choice; please read more on my previous post).
I’m sure you can imagine what Biscuit and R’s diagnoses have done to our shopping lists and household expenditure… Well, imagine no longer! I have put together a ‘then and now’ shopping list, including prices. BTW we live in Central London. There are no large supermarkets near us. We rely on small shops and online shopping (but not Asda… they don’t deliver inside the congestion charge zone…).
ITEM
COST BEFORE
VOLUME
COST NOW
VOLUME
Bread
£0.50-0.90
lasts us 1 week
£2.30
lasts us 1-2 days
Pasta
£0.50
500g
£1.13
500g
Pizza
2 for £5
 ready made
£3.29
 ready made
Cereal
£1.50
1 box
£3.25
1 box
Porridge
£1
1kg
£2
450g
Breakfast Biscuits
£1.29
1 box
£1.70
1 box
Brioche Rolls
£1.29
8 rolls
£2
4 rolls
Self raising flour
£1.50
1.25kg
£1.70
1kg
R and I both work full-time. We are, therefore, in a more privileged position than many others who are having to scrimp and save to buy food that doesn’t make them ill, but that doesn’t mean that it hasn’t had a significant negative impact on us financially.  As happened in our family, you are more likely to have Coeliac Disease if you have a close relative with the condition already. This means people are having to buy gluten-free products for more than one person, even if they don’t do what we did and impose a gluten-free diet on everyone in the house.
I hope this post goes a little way to show true value and importance of gluten-free food on prescription. Gluten-free food may sound like an obvious choice to drop from a prescription list in order to save the NHS money (having worked for the NHS for the last 11 years I promise I do understand how important this is), but gluten-free food is medication to people with Coeliac Disease.  
 
 

Gluten-Free Biscuit

I love Christmas, I love food and I love baking and, although this blog is not primarily about me, these are things I have spent more than an ordinate amount of time thinking about in recent weeks.

The Christmas ads are out; cosy, happy ads showing us all the delicious family foods we could spend our holidays tucking in to. Normally I watch these salivating and planning which foods to buy and which foods I would want to try making. This year I am watching them with different eyes; eyes which are starting to understand the magnitude of someone not being able to eat what most other people can. 

As of October this year, Biscuit was diagnosed as having Coeliac Disease. This was after years of being convinced that she wasn’t absorbing her food properly, months of toileting troubles (leading to embarrassment and a dip in her confidence) and goodness knows how long of discomfort, cramps and tummy pain for my beautiful little red-haired girl. 


For those of you who are not ‘in the know’ about Coeliac, here is my little run-down; Coeliac disease is an auto-immune condition, meaning that the immune system mistakenly see substances inside of gluten (the protein in wheat, barley and rye) as a threat and attacks them. This leads to damage of the villi (finger like projections in the small intestine) which affects the body’s ability to absorb nutrients from food ingested. It is not an allergy or an intolerance. 
When Biscuit eats gluten she gets very constipated, with a bloated and uncomfortable tummy. She also feels very tired a lot. There are lots of symptoms (it’s worth checking out Coeliac U.K. for a list of symptoms) to watch out for, as some of them can seem quite non-specific. That’s why it can sometimes take a long time for a diagnosis to be made. It is important that a diagnosis is made as potential long-term complications of untreated Coeliac disease include osteoporosis, anaemia, vitamin deficiencies and it can lead to certain types of cancer.

The treatment of Coeliac disease is the following of a strict gluten-free diet. This is done with the supervision, support and advice of a dietician. 

So this is where we currently are. We have decontaminated the entire kitchen (cleaned it for top to bottom, sterilised the chopping boards and got a new toaster), got rid of all food containing gluten and refilled the cupboards after visiting all the free-from sections in our local shops. I have spent time with the school inclusion officer (and provided her the Coeliac U.K. school pack) to help the catering company support Biscuit to eat gluten-free school lunches). I have become militant at checking labels! 

It has been a tricky year for us, and I have neglected this blog but we are back and we will be showing you all the gluten-free goodness (and not-so-goodness) we have managed to find during our Coeliac journey. 

Thank you for listening 

The Inconvenience of Ill Health

2016 so far has not been kind to us. In the past 5 weeks we have visited 2 hospitals and 2 GP practices on 7 separate occasions; my mum has broken her femur (thigh bone), Cracker has had 2 anaphylactic reactions (to, as yet, an unknown cause) and is currently battling a 40oc fever (again of unknown origin) and Biscuit has been struggling with more viral-induced wheeze. 

The majority of these illnesses, and the subsequent doctor visits, have taken place in the evening or at the weekend. As parents we know that our children are more likely to need a medical assessment on a Friday evening, after a full 45 hour week at work, or on a Sunday of a Bank Holiday weekend. NB: if Jeremy Hunt doesn’t believe that doctors work at these unsocial times, let me tell you that they do. I have yet to walk in to an A&E department and been unable to see staff there. These unsocial visits have an impact on who looks after the other twinkle, work, family get-togethers, catching-up with uni friends (sorry girls) and, trust me on this one, family weddings. I know if you’re not living it, it is hard to believe how many things get cancelled or missed due to your little ones being unwell. I know where I’d rather be just as much as  I know where I’ve got to be.

Then there’s the stress of it. I have been nursing for 10 years now, but nothing prepares you for when it’s your baby sick and needing help. Rob always says that, in fact, it is worse for me as I have knowledge of the worst-case scenarios. I’m sure that the stress alone is enough to make parents sick, but you have to keep going for the child who is poorly (as well as the children who aren’t, but still need you). It doesn’t make you want to do anything bar relaxing at home (obviously whilst listening intently to the monitor for the slightest cough or sniffle)

I wish I could make Biscuit and Cracker 100% healthy, but until they get a bit bigger and hopefully a lot stronger we are going to have to deal with just how inconvenient ill health is. I only hope that our friends and family are patient enough to still be around when that happens….! 

  

Our Nightmare Weekend 

As you all start preparing for your weekends, please let me tell you our story. 
This time last Friday my beautiful little man suffered his first anaphylactic reaction of the weekend. He was first assessed and treated by amazing paramedics (including one who managed to get a cannula in to a 3 year old’s veins whilst in the back of an ambulance speeding down Tottenham Court Road), then taken straight through to resuscitation before going to paediatric A&E and then spending the night on the paediatric ward. The same thing happened to us again after discharge on the Saturday. 

Our nightmare weekend started on Friday evening and ended on Sunday lunchtime; trust me when I tell you how unsocial these hours felt to me, let alone to the people working their shifts. During this time we were treated (because, yes, they looked after me just as much as him) by paramedics, consultants, registrars, junior doctors, nurses and student nurses, not to mention the porters, domestics and countless other people involved in hospital care. We experienced expert care, amazing treatment, and outstanding compassion. 

I have worked for the NHS for the last ten years (as well as 3 years previous as a student) and I know how hard we work. I know what is it like to be there at someone’s first breath and to hold someone’s hand at their last. I know what it is like to miss Christmases and birthdays (and countless family dinners). I have done 12 1/2 hour shifts with no time to eat, drink or pee. 

So Jeremy Hunt, I dare you to look at the story of how the NHS saved my son’s life (at a weekend) and the story of my working life and say that the doctors are “greedy”, that the paramedics are “ambulance drivers” and the student nurses don’t deserve a bursary. In fact, I challenge you to look me in the eye and tell me that the NHS is not worth fighting for.

#JuniorContract #NotFair #NotSafe #BursaryOrBust 

  

The Picture That Affected Us All #RefugeesWelcome

On Thursday 03/09/2015 the world woke up to pictures on the front page of most newspapers which I know I will never forget (and which I’m not sure we ever should). 

I have read discussions on social media about whether we needed to see these pictures. They are horrific to see and have caused heartache across the globe. However, it is undeniable that the world seems to have stepped up and started caring since we have seen them. The Independent reports that it took the decision to publish the images of Aylan Al-Kurdi on its front page because

… it is all too easy to forget the reality of the desperate situation facing many refugees. 

The original article can be found here (warning: the images are very distressing) and led to the Indy’s Petition calling on David Cameron to accept more refugees in to Britain (I urge you to join the thousands of people who have already signed up). 

Today is the last Saturday I will have with my own three-year-olds (they are the same age as Aylan was when he stepped into the dingy with his parents and brother) before they start school. We have had a lazy morning  watching Postman Pat and having cuddles on the sofa. Sitting there as a mass of limbs and kisses reminded me (as if I would ever forget) how lucky we really are. Lucky to have a roof over our heads, lucky to have food in our cupboards, lucky to have freedom of speech and lucky to have each other.

I can’t imagine leaving behind our home, our friends and our family (those who are left after the near-total destruction of the town) and taking my two small children on a dangerous journey to an unknown land in the hope of safety and security. Yet this is the situation facing hundreds of thousands of people. Refugees don’t need to imagine doing this, they don’t have a choice. To me, the quote which Warsan Shire, the Somali-British poet, wrote in her book Long Journeys. African Migrants on the Road has really stayed with me;

“no one puts their children in a boat unless the water is safer than the land”

Please remember that there are many things we can do to help the refugees. Please search for them and see what is in your power to do. A great example is my school friend’s gorgeous son who was so touched by the pictures of Syrian children he saw on the news that he set up a Just Giving Page to purchase sleeping bags for them (and if a 5 year old can think like this, I know we all can).

As a human I know I have grieved for all the senseless loss of lives. As someone lucky enough to live in a free and safe country I know we could, and should, do more. And as a mother I know I have hugged Biscuit and Cracker that little bit harder and tighter since I saw poor Aylan lying on that beach.

Why We Were Missing!

I don’t know if anyone was wondering why we missed last week’s Trendy Tot Thursday, as we have been involved every week since it started back in July 2014.

I am normally a little delayed in posting our entry due to work commitments etc so they come out at the weekend.

Unfortunately last weekend was spent with little Biscuit being very poorly and getting admitted to hospital with pneumonia. And whilst she looked incredibly cute, I don’t think a cannula for antibiotics could be classed as “trendy”!

I have previously posted that Biscuit had been ill before, but even that coupled with years of experience on the other side of the uniform will never prepare me for the horrible feeling when one of my kiddies is poorly. Combine that with the worry you have leaving another at home with friends or family and you have a very stressful time.

Thankfully, after a weekend of strong antibiotics and regular pain relief, Biscuit was well enough to continue her recovery at home and she is much, much better. Cracker also needed lots of TLC after Biscuit was admitted as he was worried about her, and also had his schedule disrupted. Cuddles all round this week!

Anyway, thank you for baring with us. Hopefully normal service will be resumed this week, although we haven’t really been anyway so we’ve been trendy at home.

Toddler Health; Eczema

Being a mama of two-year-old twins and doing the course I am doing, there are many times that there are crossovers between my personal and professional lives. I learn something from a parent I have met, or a colleague I have worked with or some training I have done and know that I can take that information and it will have a positive impact on my home life. I can also experience something with Biscuit and/or Cracker and it makes me a better public health nurse.

I have been working my behind off at academic work for the past few weeks and one of the essays (yes I did say one of the essays, please feel for me!) was regarding a prescription for topical treatment for eczema. Biscuit and Cracker have always had super sensitive skin and both of them have since been diagnosed with eczema and prescribed triple emollient therapy.

Triple emollient therapy is when a child (I can only speak from experience with children) gets three products- a cream/gel, bath stuff and a soap-substitute (sometimes one product can be used for both the bath and for washing with, it depends on what is prescribed). There are lots of products available on the market, both over-the-counter from your pharmacist or on prescription. It can depend on what the prescriber is used to, what their trust recommends and what the patient (or parent/carer) knows and likes. If you are thinking that your little one needs eczema treatment- remember that the greasier the cream, the better it is. It just may feel a bit slippery on their skin. It took us a couple of different products before we found ones that worked well for us.

I am not writing this post to tell you whether your child needs creams prescribing, or what treatment your prescriber will recommend. If you have any worries or concerns, please see your GP/Health VIsitor/Pharmacist and talk through with them and allow them to assess your child’s skin.

I wanted to write this post to give you tips that I have found out through research, and that we have found useful to know.

1) If you use the bath additive, be aware of how slippery your child will be. Please take extra care. Little ones may slip out of your hand and bigger ones may slip over in the bath or on the bathroom floor.

2) This is one of my Top Tips! We found that, when using a bath additive, our bath was always incredibly greasy and was constantly getting blocked. I have since found out that squirting washing-up liquid round the bath and rinsing it off makes the bath squeaky clean, as well cutting through any grease in the pipes and saving us having to use the plunger to drain the water away!!

3) When drying a child, try and pat them dry rather than rubbing. This is gentler on their skin and won’t rub off any of that moisturising layer from the bath additive.

4) When applying cream to them, smooth it on, rather than rubbing it in, and go in the direction of their hair growth. If you put cream on your arms against the hair growth you can feel that it is not comfortable!

5) As soon as Biscuit and Cracker have had their cream applied at night we put them straight in their cotton pyjamas. We found that you can really smother them in it and the pjs keep it on their skin. PLUS it doesn’t go everywhere.

6) Try to use cotton clothes as much as possible.

7) Use non-biological washing powder and sensitive fabric conditioner. I am waiting for something to happen to my washing machine as we can’t use a well-known product that reduces limescale and helps it to “live longer”.

8) Apply the cream often, we put in on Cracker (whose skin is worse) in the morning, at lunchtime and before bed, plus whenever we see him scratching.

I hope that at least one of my tips may be useful to you if your child has eczema. Let me know if you have any others and I will update my list!

The views and tips listed here are all my own.