Coeliac / Gluten Free

Fin’s Coeliac Diagnosis

It was a normal day in May 2014 and for some reason, I had grabbed the mail as I had left for work that morning, stuffed it into my bag and forgotten about it until lunchtime.

Lunchtime came and the first letter was “To the parent / guardian of Finley Rhys Gough”. I assumed that it was his next routine diabetes appointment as we had been to the last clinic a week previously for him to have his annual bloods.

I opened the letter and read “Some of Finley’s bloods have tested positive for Coeliac Disease….”. I didn’t get any further than that. I felt sick and without saying a word, picked up my phone and went to outside to ring Andrew.

I don’t remember what I said, I just remember feeling absolutely devastated that he would have to learn to live with ANOTHER life long condition. Andrew, as usual, calmed me down and told me to read the letter properly and to ring the hospital to see what they had to say.

Upon reading the letter fully, I read that they wanted to repeat the tTG blood test in case of a spurious result in the lab. I contacted his team and they told me that his levels had come back over 200 (20 times the normal range) but that I was to do nothing at this point until the second tests came back and they booked him in for the following week.

I was in a daze all afternoon and when I arrived at the school gates and saw his gorgeous little face beaming as he ran towards me, I really struggled to keep it together.

He absolutely hated having the blood tests at the hospital and so when I told him that he needed to go back, he immediately started crying and asking me why? So, I told him that there was a nasty monster called “Gary Gluten” (first name that came into my head) who lived in some foods and if he got into people’s stomachs he could cause them to be ill. The test would tell us whether “Gary” had got into his stomach and if he had, we would have to buy special foods that he couldn’t get into. He seemed to accept this and didn’t mention it for the rest of the day.

In the meantime, I was googling all sorts. The likelihood of a spurious lab test, what a tTG over 200 meant and all the signs and symptoms of Coeliac Disease. The good thing was, he didn’t have any of the most obvious signs outlined on the Coeliac UK website.
Symptoms include diarrhoea and other gut symptoms, faltering growth or a change in growth pattern, irritability and a bloated tummy.

This picture was taken just after the blood tests, where he looks a total picture of health. The only thing I could put my finger on that was different over the preceding months was that his stools had been a pale yellow colour and that he had complained of “achey legs” once or twice which was out of character.

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The following week came and the bloods tests were, as usual, an absolute nightmare. I had to sit him on my lap and cuddle him while they had this singing donkey blasting to distract him which Andrew was waving around in his face. Looking back, it must have looked ridiculous but it was the only way to get him to comply.

A week later, the results, again, came back with a tTG over 200. They had also sent a sample to the University of Wales hospital for an IgA EMA test which had come back as “strongly positive” for Coeliac Disease and I was told that his consultant would be in touch.

Although I was gutted that this meant that he did have the condition, I was far more positive due to having a few weeks to come to terms with the possibility. I had ordered personalised stickers from Ebay, some with a thumbs up and some with a monster’s face on. When I got home from work, I told Fin that we had found out that Gary Gluten had found his way into his stomach and that we would need to check all the foods in the cupboard and stick the monster faces on everything that he was hiding in and put thumbs up on all the foods where he wasn’t.

This formed part of a game for him which he enjoyed and we spent a good few hours going through all the cupboards. I then took him to Asda to pick some treats from the Free From aisle and I remember there was nothing like the variation you see today. The only things remotely “treat like” was some dairy free fudge (being rather naive at this point, I didn’t realise normal fudge was gluten free) and some crumpets. We bought these and headed home, with a view to being gluten free from that day on.

The next day, I was contacted by his consultant who told me that whilst his results were enough to be fairly certain of a Coeliac diagnosis, they wanted to be extra sure and were referring him to a Dr Ieuan Davies at the UWH Cardiff to have a duodenal biopsy taken. This procedure would require a general anaesthetic. I lost it at this point and demanded to know why the 3 positive results weren’t enough. I was told that this was the standard practice for our health board and to ring the consultant’s secretary in a few days to find out how long the waiting list was. In the meantime, I was to carry on feeding him gluten as normal.

I felt sick. They expected me to deliberately feed my child something that I knew was harming him. Something that was harming his intestines so badly that the level of anti-bodies in his system were more than twenty times what they should be.

I had two choices.

  1. Do what they said and wait for the appointment or
  2. Remove gluten from his diet and risk never having a formal diagnosis.

As much as I wanted to go with option 2, I knew that Coeliac disease could cause other long term issues and that children were supposed to be monitored annually after diagnosis, to ensure the levels of antibodies had dropped. If Fin didn’t receive a formal diagnosis by a clinician, he would never receive the follow up care he needed and so that was no longer an option.

So, I decided to go with Option 3. Feed him 2 pieces of normal bread per day, make the rest of his diet gluten free and do everything in my power to get him diagnosed without a biopsy.

I spent hours googling the various methods of diagnosis across different health boards and came across the BSPGHAN guidelines and in particular, the following guidance.

If tTG raisedโ€”and greater than 10ร—upper limit of normal for assay:
Take further blood sample to check IgA-EMA and determine HLA-DQ2/HLA-DQ8 typing. If EMA+ and patient either DQ2 or DQ8, the diagnosis is con๏ฌrmed without the need for a duodenal biopsy. If EMA antibody testing is not locally available, a second strongly positive tTG antibody may be substituted and serum saved for later EMA testing.

Knowing that Fin had two tTG tests which were 20 times the upper limit and a positive IgA EMA test, this was all I needed to know and I decided then and there that there was NO WAY I was allowing the biopsy.

All I had to do now, was to get a health professional to agree with me.

I left it three days and rang Ieaun Davies’ secretary. Her phone rang and rang and so I managed to obtain another number for a pool of secretaries who informed me she was on sick leave. She promised to try and find out whether they had received the letter and get back to me. She didn’t.

So I rang her over and over again, until there came a time where I feared she may take out an injunction against me! Eventually, I managed to speak to the secretary who had returned from sick and she promised to review the letter, speak to the consultant and get back to me. It took another few phone calls but eventually she called me back and said they had reviewed the results and whilst they were strongly indicative of Coeliac Disease, it was still hospital policy to perform the biopsy and so they had put him on the waiting list which was approximately six months.

Six months!! Six months of deliberately poisoning my child with something I knew was harming him. There was just no way I was prepared to do it.

I joined a support group and found lots of families who had received a diagnosis without a biopsy which just fuelled my belief that it was totally unnecessary.

I then looked into seeking the advice of a private consultant and contacted the Spire Hospital in Cardiff who made me an appointment with Dr Huw Jenkins, Child Health Consultant for a week later.

The day came, the 17th of June 2014, and I turned up to the appointment with Fin armed with all his test results and the research that I had done, ready for a fight.

He asked me all about his medical history and explained that Coeliac and Type 1 Diabetes went hand in hand. He also told me that he had assisted in drawing up the BSPGHAN guidelines and was very familiar with the recommendations.

He then took one look at both sets of tTG results and the positive EMA and said “There is absolutely no doubt in my mind that this child has Coeliac Disease. He has had all the tests that he needs to confirm it and there is absolutely no need for a biopsy. I will write to his consultant today to confirm my diagnosis and he can go gluten free immediately.”

And I wanted to jump across the desk and hug him!

It was a strange feeling to have my fears confirmed and feel grateful, but this boy of mine had been through enough. He was already getting poked and prodded with needles 8 times a day due to his Type 1 Diabetes and so there was no way that I was putting him through a totally unnecessary procedure, especially one that came with risks of it’s own.

I must have thanked Dr Jenkins at least 20 times and as we walked out of the room and I explained to Fin that the doctor had confirmed that he wouldn’t be able to have any foods with “good ole Gary” in, he looked at me and said “OK Mammy, let’s go shopping!”

And shop we did. There was a Waitrose directly across the road where I let him loose with a basket and his own scanner and he chose anything and everything that he wanted.

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And we haven’t really looked back since. Coeliac has become part of our lives as much as Diabetes has. It’s just part of who Fin is and he totally accepts that. He never complains and is convinced that he is a better rugby player because of his gluten free lifestyle!

He has had his bloods done every year since and each of the 4 annual tTG results have been between 3.3 and 3.8 which are classed as negative so we know there is no gluten at all making it’s way into his diet, through cross contamination or otherwise.

Here he is, each year since his diagnosis. Looking healthy and always smiling!

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If your child is being investigated for Coeliac and has two tTG results of over 100 (ten times above normal), please know your rights and request the genetic type test for HLA-DQ2/HLA-DQ8 along with an IgA EMA screening. If all of those are positive, then a duodenal biopsy should not be necessary.

Beth

xx

Coeliac / Gluten Free, Type 1 Diabetes

Why you have to be good at Maths to count carbohydrates!

When Cian joined the Comprehensive last year, he was really looking forward to Home Economics and making gluten free treats for Fin.

It turns out that in Year 7, you are not able to take in your own ingredients and you are simply expected to take in 50p per lesson in order for the teacher to provide you with the necessary ingredients.

After bringing home Tupperware containers of what can only be described as “gluten filled slop” all year, last year, Cian was excited to announce that in Year 8, he could take in gluten free alternatives to the ingredients list they were provided with in the lesson.

This week they were making flapjacks and the ingredients were quite straight forward.

150g Porridge Oats

75g Caster Sugar

75g butter

A tablespoon of honey

Prior to sending in the sponge cake tin that was requested, I weighed it and recorded the weight as 208g. The reason for this will become clear later on.

This afternoon, Cian came home with his flapjack and before we could tuck in, we had to calculate the carbohydrates to be able to decide how much insulin Fin would need for his portion.

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Fin wanted to help and so armed with a pen, paper and calculator he was ready!

The ingredients and their nutritional information were as follows:

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There are 59g of carbohydrates in 100g of porridge oats. There was 150g of porridge oats in the recipe and so the carbohydrates are worked out as follows:

59g carbs / 100g x 150g = 88.5g of carbs rounded to 89g

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There are 100g of carbohydrates in 100g of caster sugar.

There was 75g of sugar in the recipe and so the carbohydrates value is also 75g.

(100g carbs / 100g x 75g = 75g of carbs)

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There are 84g of carbohydrates in 100g of honey.

There was 15g of honey in the recipe and so the carbohydrates are worked out as follows:

87g carbs / 100g x 15g = 13.05g of carbs rounded down to 13g

The carbohydrates in the butter were 0.6g per 100g so did not need to be included.

We then totalled all elements to obtain the total value of carbohydrates for the whole flapjack.

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Honey – 13g

Oats – 89g

Sugar – 75g

Total amount of carbohydrates for the whole flapjack totalled 177g.

We then needed to find out the weight of the flapjack.

We weighed it in the tin and found it to be 400g in weight.

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We then took off the weight of the empty tin (208g) which I had weighed the day before.

This made the weight of the total flapjack, excluding the tin, 192g.

We then weighed a slice out for Fin…โ€ฆ

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….. and worked out the carbohydrates for his portion.

177g of carbohydrates in the total flapjack divided by the total weight of the flapjack (192g) x portion size of 21g.

177g / 192g x 21g = 19.35g of carbohydrates (rounded down to 19g)

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So that’s it, easy!!

It would be much easier to have gone to the shop and bought ready made flapjacks with the carbohydrates on the back but where’s the fun in that!

And in any case, now I have one kid who thinks he is the next Gordon Ramsey and one who thinks he has a future career on Countdown!

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And as long as they are happy, I’m happy!

Beth xx

Coeliac / Gluten Free, Type 1 Diabetes

Back to school!

So tomorrow, Fin heads back to school and starts his journey in Year 5.
I’ve reverted all his basal rates and carbohydrate / correction ratios back to what they were before the summer holidays and made a record of these in his book.

No doubt, his insulin needs will have changed since the end of July but this will form our starting point and we can then tweak every couple of days based on his readings to get him in range for as much of the day as possible going forward.

His packed lunch is made and his carbohydrates entered into his book:

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His care plan and hypoglycaemia flowchart have been updated:

Individual Health Care Plan September 2018

Treatment of Hypoglycemia

His daily record sheets have been amended and set up ready for the school to print off and his Testing Timetable has been amended in line with the new school timetable.

Testing Timetable Sep 2018

Diabetes Record for school

His diabetes bag is packed with Lucozade (with 100ml portions marked out), a bag of Jelly Babies and a gluten free rice cake for break-time.

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In addition, his gluten free cereal, wet wipes and tissues (for testing) are packed safely in his rucksack.

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And I think that’s it, we’re good to go!

All we need now is some nice steady blood sugars!

Wish us luck!

Beth

xx

*All documents are my own work, please feel free to contact me for an amendable copy which I can provide via email*

Coeliac / Gluten Free, Holidays, Type 1 Diabetes

Taking Type 1 on Holidays!

If you’re anything like me, the thought of packing for holidays fills you with dread!

Toiletries, outfits, shoes, towels, holiday reads, so many things to remember whilst trying to remain within your luggage allowance!

Now, with Type 1 and Coeliac Disease thrown in to the mix, I long for the days that the worst that could happen is that I forget the sun cream!

This year, we headed to the 4* Holiday Village in Benalmadena in the Costa Del Sol. In addition to spending days searching for the best holiday at the right price, I also needed to read review after review to try and ascertain whether or not the eating options would be suitable for Fin. I came across a few that stated that gluten free options had been available but to be on the safe side, I also contacted the hotel via email to explain the situation and ask whether or not they would be able to cater for him.

They replied to say that they were used to dealing with dietary requirements and to contact the chef at each meal time and they would ensure that there was something available for him.

In addition to all of this research, and because I have serious OCD, I also packed a whole case of gluten free food so that we had all eventualities covered.

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We took cereal, crackers, bread, ciabatta rolls, pasta, pizza bases, bagels, biscuits, crumpets, pancakes, rice cakes and chocolate bars just to name a few!

And that was the easy part!

Next, I needed to consider all the medical paraphernalia that we had to take.

It’s no good just taking enough medical supplies that will last for the duration of the holiday.

Lots of things can happen to change the frequency of cannula and insulin changes such as high temperatures and being submerged in water for the majority of the day. In addition, I always envisage that a national disaster may occur whilst we are abroad and so I also pack enough supplies so that if we are stranded abroad for a month, we can survive!

Therefore, as you can imagine, the list of items we needed to take was huge!

  • Cannulas
  • Cannulas with tubing
  • Insertors for cannulas
  • Alcohol wipes to prepare skin for insertions
  • Syringes to draw up insulin
  • Vials of Insulin
  • Spare Pump and Meter in case of pump failure
  • Spare blood testing meter in case of both pumps failing
  • Long lasting and fast acting insulin injections with needles in case of pump failure
  • Blood Testing strips
  • Spare lancets for finger pricker
  • Jelly Babies for low blood sugar
  • Emergency glucagon injection for extreme low blood sugar
  • Ketone testing machine and strips to check for ketones in the event of high blood sugars
  • Spare pump belts
  • Dexcom CGM receiver
  • Hypafix tape to help cannulas stay put for longer
  • Tegaderm waterproof tape to protect cannula and CGM sensor
  • Allergy cream to prevent reaction to Tegaderm
  • Frio pack to keep insulin cool during the journey on the plane and by the pool each day. You can read about their products here and I would highly recommend them to anyone taking a child with Type 1 abroad.

We also need to take a bundle of doctor’s letters with us to prevent the airport security personnel from forcing Fin and all his electronics to go through machinery which could be harmful to their operation.

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We need our travel insurance policy covering all of Fin’s illnesses and I also take a restaurant translation card advising that he has Coeliac disease which I downloaded from here in Spanish free of charge.

Once all that is packed, it’s time to start on the “normal” packing and then time for a very large glass of red!

On the day of departure, I re-check the medical case a thousand times and then once we leave, I carry it with me like a small child wherever I go and will not allow anyone else to be in charge of it. If that case was to go missing we would be in SERIOUS trouble. In fact, it makes me go cold to even consider that happening!

Airport Security is always a delightful experience. Anything with liquid has to be removed from the cool packs and put into plastic bags and all the electronic medical equipment needs to be bagged up to ensure it isn’t put through the X ray machine.

Then, despite having doctor’s letters advising that neither Fin nor the machinery can be put through the x ray scanners, we get treated like Colombian drug dealers with full body pat downs and a swab of every single electronic item through a specialist machine.

I understand that they have to be careful but that experience is always the most stressful of the whole holiday and it is only once it is over, that I can finally relax with an alcoholic beverage of some description and start looking forward to the week ahead!

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The rest of the journey normally passes by relatively stress free and on this occasion, it was then just a short 2 hour flight until we landed in Malaga.

The restaurant in the hotel had already closed by the time we arrived and so they had plated up some buffet food in the fridge within our room. I had already envisaged this would be the case and knowing it probably wouldn’t be suitable for Fin, I had cooked some Genius Gluten Free Sausage Rolls in the morning before we left which he was happy to snack on.

The following day was our first day by the pool. Before we left the room, I secured both his cannula and CGM with extra Hypafix tape and covered this over with Tegaderm which is a waterproof dressing. This would hopefully mean that they would last the full day as Fin lives in the water on holidays! I soaked the Frio pack in cold water in preparation for keeping the pump cool whilst Fin was in the pool.

We headed down to breakfast and although I took some supplies such as cereal and pancakes, I decided to ask the chef if they could advise me what Fin could have that was gluten free.

He came back from the kitchen with a plate of goodies for him which was far more than I was expecting. Whilst I can always take food with me, it is nice for Fin to feel the same as everybody else and I really appreciated the effort made by the hotel.

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Cereal, bread for toast, a muffin, some rich tea biscuits and a Schar chocolate sponge with cream. Obviously he didn’t eat all this which meant that we could take some with us for the rest of the day.

There was also cooked breakfast available and Fin could eat the hash browns, beans and the delicious British bacon that they had on offer as well as freshly made omelettes so he didn’t feel left out at all.

The only downside to an all you can eat buffet is that everything Fin eats needs to be programmed into his machine to calculate the insulin he needs to cover the carbohydrates consumed. This is always a battle on holidays as it is complete guesswork to try and estimate the amount of carbohydrates in every meal as we don’t have packets or nutritional information to help us.

Over estimating the carbohydrates will result in too much insulin causing a hypo and under estimating will cause too little insulin which will result in high blood sugars.

Somehow, maybe more by luck than judgement, we managed to keep his levels pretty stable for the majority of the week through pure guesswork.

After breakfast, once we headed to the pool, he needed to take his pump off to go into the water. This involves unclipping it from the cannula and wearing a special clip to seal the cannula off to prevent any infection entering his body from the water. The insulin pump then needs to be kept in the Frio Wallet in the shade to keep the insulin cool.

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Fin absolutely loves the water and spends most of the day from 10am to 6pm in the pool, only breaking for lunch.

As his pump normally infuses insulin every 3 minutes, 24 hours a day, this means that he is missing out on almost 7 hours of background insulin during the time he is in the pool. Luckily, the entertainment team put on water games and coupled with the swimming and general diving around, the exercise he was doing mostly made up for the loss of insulin.

At lunchtime, he would reconnect the pump to cover the carbohydrates for his lunch and if he was slightly high, we would give a correction dose at the same time.

We found the buffet lunch restaurant excellent with a choice of meats cooked fresh on the show cooking griddle and a choice of jacket potatoes or chips. The chef even made Fin a ham and cheese gluten free pizza, which he loved!

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The evening restaurants had equally as much choice and cooked GF pizzas or pasta to order if needed. They had a “make your own ice cream sundae” and chocolate fountain night which totally made his day on those occasions.

He even had GF garlic bread and pepperoni pizza in the Italian restaurant!

All in all, we were extremely lucky with the food choices and although we used some of the items that we took with us such as pancakes and crumpets, we brought most of our supplies home.

The only real scare of the holidays was when Fin’s blood sugars were 30.5 mmol one day when I tested him (normal range is 4-7 mmol). I have no idea how this happened.

It may have been that the cannula had been bashed through the dive bombing into the pool, the heat may have become too much for the insulin, causing the effectiveness to be compromised or there may have been air bubbles in the tubing which we hadn’t noticed.

It is extremely rare for his bloods to ever be that high, in fact, I would go so far as to say that it is the highest reading he has ever had. In previous years, I would have completely freaked out and imagined him stuck in hospital in Spain within hours in DKA.

But, as time goes on, somehow, you get calmer in these situations and instead of losing my head, I took his pump up to the room, got fresh insulin and re-filled it. I then took a new cannula, insertor and tape down to the pool to avoid dragging him upstairs and did a full set change on a sun lounger.

I then gave him a massive correction of 2.2 units, and once this had gone through, dis-connected him again, put his clip on and sent him back into the pool as I was determined not to spoil his day!

Two hours later we were almost back in range and I could breathe again!

I have had people ask me whether or not it is worth the stress of going abroad and wouldn’t it just be easier to holiday in the UK?

And yes it would be easier.

I feel safe in the UK knowing that should I forget a medical item, I can get a script faxed to the local pharmacy.

If Fin is ill, I can always get an emergency GP appointment and in the worst case scenario there will always be a hospital close by where our amazing NHS will work their magic to get him back to full health.

I’m familiar with all the supermarkets, am never far from a gluten free selection of foods should I need it and there are no language barriers to deal with when eating out.

But it’s not about me.

It’s about my boys.

If we only ever holidayed in the UK, they wouldn’t get to spend their summer days on a lounger sipping slushes or having fun in the pool.

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They wouldn’t meet new friends from all over the UK playing bowls, water polo, football and archery.

They wouldn’t have got to watch their Uncle on stage trying (and failing) to form letters with a sausage balloon to win the Spelling Bee challenge.

They wouldn’t have spent a week with their baby cousin and laughed at her shouting ‘Holibobs’ every time she spotted a camera.

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They wouldn’t learn about different cultures and languages and try new foods.

They wouldn’t get to fly on a plane and they wouldn’t be as brown as berries despite wearing Factor 30 every day!20180809_155727

They wouldn’t get to have fun trying to teach their Nanna all the party dances or how to floss and laugh at her when she gets it wrong.

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And we wouldn’t have all the rest of the happy memories we have made over the last week or the 400+ photos to evidence them.

There is something about being abroad that is so different to being at home. You can forget work stress, bills to be paid, food shopping, chores and other every day anxieties.

Instead, you can relax in the sun with a cocktail while watching your children having the time of their lives and the hardest decision of the day is what book to read.

I’ll be honest, for some parts of the day, I even forgot about Diabetes for a while!

So if you are the parent of a child with Type 1 who is afraid of taking them abroad, my advice for you would be to take the plunge! It may be stressful in parts but the smiles on their faces, the experiences you give them and the memories you make will far outweigh the additional grey hairs on your head!

We are here for a good time, not a long time and I am determined not to let Type 1 get in the way of that!

Beth

Xx

“We take photographs as a return ticket to a moment otherwise gone.”

Coeliac / Gluten Free, Type 1 Diabetes

It’s not easy having a sibling with an illness!

In a family where one child has a long term illness, you quite often hear of the child’s bravery and tenacity or the parent’s devotion and dedication. People are quick to heap praise on the patient and their caregivers.

The forgotten “victim”, for want of a better word, is the sibling.

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Because the truth is, however much we try to limit the impact of Fin’s illness on the family, it is there every day and we can never really switch off.

It’s there when his CGM alarms that he is high or low and we have to stop what we are doing to treat him immediately.

It’s there at 3am when I have to wake him up to drink apple juice.

It’s there at every meal time, when the carbohydrates for every element of his meal have to be calculated and insulin administered.

It’s there when they have to cut short their time playing cricket and rugby as Fin feels shaky.

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It’s there when we go out for meals and have to try and guesstimate the carbohydrates in the meal as well as ensuring it’s gluten free.

It’s there when we go to the supermarket and have to check the packaging of anything that we need to buy.

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It’s there when we have to prick his finger 3 or 4 times a day.

It’s there when we have to change his cannula every 3 days and the sensor under his skin every 7 days.

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It’s there in every rugby match where we have to give “free carbs” before the game to ensure his bloods don’t dip too low and remove his insulin pump so it doesn’t get damaged.

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In a nutshell, as much as we try to stop his illnesses impacting on our lives, it is inevitable that they do.

I’ve lost count of the times Cian has asked for a chocolate bar in front of Fin and I have snapped at him because Fin’s bloods are stupidly high and he is unable to eat anything without them worsening.

Or the times where he has asked for something that isn’t gluten free and is made to eat it in the kitchen so Fin doesn’t see.

On occasions, when Fin’s bloods have been appalling for days and I am poring over his pump and CGM downloads trying to figure out what I need to do to fix things, Cian may come in and ask me to help him with his homework or try to talk to me about his day and I say “Give me a minute!” which inevitably turns out to be longer.

Or he will try and talk to me as I am drawing up insulin and whilst I am trying so hard to listen, the fact is that the job in hand is life or death and ultimately has to have my utmost attention.

I see the guilt in his face when he mentions that he really wants a dessert in a restaurant that isn’t gluten free and then seeing Fin’s face, will change his mind and have something else despite us both telling him it’s fine.

I see that some mornings he is tired after being woken up on numerous occasions through the night due to Fin’s CGM alarming that his bloods are low.

Or some days, when I am exhausted from nights of broken sleep, I realise I am simply not the mother that he needs me to be on occasions.

But most of all, I see that despite all this, instead of feeling resentful, he is simply sad that he has to watch his little brother go through all that he does.

I’ve no doubt that sometimes he feels left out or gets frustrated that I never seem to be giving him 100% of my attention but he never ever complains and is, quite frankly, the nicest child I have ever known.

He is kind, caring, loving and supportive and quite often when I am in tears because I simply can’t get Fin’s bloods in a decent range, he will put his arms around me and tell me I am doing a brilliant job and that none of this is my fault.

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When I accidentally put the wrong sandwiches in their packed lunches, meaning Fin had inadvertently eaten gluten, Cian was the one comforting me when I was crying that I had let them down, pointing out that Fin was absolutely fine despite eating them 4 hours earlier.

When I am ill or tired, he is always the one to ask me how I’m feeling and is the first one to welcome me as I walk through the door from work every day with a kiss and a hug.

Whenever, we take them for a day out or on holiday, he is always the one thanking us when we get back for giving them such a good life.

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If they are off playing and Fin feels low, it is Cian who runs back to the caravan to get me or pick up some Lucozade.

If Fin is upset about all that he has wrong with him, it’s Cian who will sit with him and cheer him up by telling him all the things that he is still able to do and reassure him that Type 1 doesn’t stop him doing anything.

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When Fin moved from injections to the pump and was scared of having his cannula inserted, Cian, at the age of 6, offered to have one first to reassure him.

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And at 3am, when I’m trying to make Fin drink apple juice, it’s Cian who will mumble from the top bunk to ask if he is ok.

Last week, we went to Cian’s first family assembly in Secondary School and he was chosen as the Pupil of the Year out of 265 children. He won the award not only for his academic and extra curricular achievements, but for his kind and caring nature and his willingness to help others with their work.

Cian Pupil of Year

And as I heard the Headteacher talking about my little boy and him being described as “the heartbeat of the school”, I sat there with tears rolling down my cheeks and thought to myself that whilst our lives are certainly not perfect, we must be doing something right!

Wiseman's Bridge Inn (23)

Beth

xx