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
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.
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:
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
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)
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.
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.
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……
….. 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)
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!
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:
His care plan and hypoglycaemia flowchart have been updated:
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.
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 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.
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!
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.
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.
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!
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.
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.
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!
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.
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!
“We take photographs as a return ticket to a moment otherwise gone.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!