One year on.....Victoria’s words.

I was thinking about this the other day, I started this blog to share my opinions thoughts of living with a child with type 1 diabetes which as you know turned into two in January. I thought that you may find it interesting to know what the children themselves thought.
Victoria came forward first, I’m still waiting for Samuels....

“Hi, my name is Victoria but I now go by Tori. On January 13th 2018 I was diagnosed with type 1 diabetes. Before that date I had searched the signs up on the internet and figured it out, I didn’t tell anyone because I didn’t want it to be true. When we tested my sugar it was 33.3, not that great. I have to admit I did have a bit of a breakdown. We went to Southend Hospital but whilst we were driving there I had to tell my best friend Emily. We got to the hospital and I had to have blood taken from my veins. They tried 3 times in my right hand, and twice in my right, they also tried in my inner elbow but it took ages for them to get any blood. People say that hospital food is not nice but it was for me. A couple of days later I was transferred to UCLH which stands for University College London Hospital where The Prof is my Dr and I got a pump. It has really been a year. I have had setbacks but I got over them with everybody helping me. It’s been a real journey.
My name is Victoria Warrington, go by Tori and I’m Type 1 Diabetic.”

For those of you who know Victoria she is saying that she goes by Tori as I (mum) prefer that to Vicky.

So there you have it....that’s what she has to say on the matter.

CWD mum struggling: The bigest test, tears and tantrums.

If ever I needed proof that the age of diagnosis mattered then this last week was it; it was glaringly obvious in all its ugliness. For those of you who may have just stumbled upon my blog I have two children who have type 1 diabetes. Samuel aged 14, diagnosed when he was 4 years olds, and Victoria aged 12, diagnosed 10 months ago when she was 11.

Every October half term myself and the 4 children go with my friend and her 2 children to Great Yarmouth for a week. This is something we have done since 2009, it's a week filled with fun, laughter, swimming, rides and ice cream. The children charge around from the moment that they open their eyes until they close them again when they go to bed, this is especially true for Victoria and her best buddy Emily.
At the time of writing this we have been home 9 hours, this last week has been, for me, the most stressful, frustrating and heart breaking since we started on this journey almost 10 years ago. I've always told  both children that having diabetes wouldn't stop them doing anything that they wanted to do, that I would never stop them doing anything because of  their diabetes. What a liar I turned out to be!
For Samuel the week was ok, he is quite laid back, goes with the flow. He isn't a fan of swimming, he went to the park a few times but he goes at a slower pace. The other thing that goes in his favour is that he doesn't remember life before diabetes, for him, it has always been there and he generally goes with it, not all the time, we do have the occasional outburst but I expect that to happen.
Victoria on the other hand.....wow!!!!! Even before diagnosis she would fly of the handle, she would be stroppy, defiant and generally hard work. This week she took it to a whole new level of crazy!! I get it, (as well as anybody can who doesn't physically have it) she was annoyed that she had to get out of the pool because she was hypo, yes I had given her something to eat before she got in, and yes we were continually getting her out to test, but swimming really effects her. She was getting frustrated because she couldn't go straight from swimming to the park. I was ruining her life, I was mean, I didn't want her to have a good time, you name it, she said it, and this was all on the first day! This pretty much continued for the whole week, we had lots of tears, her, me and Karen. There was some shouting (not useful) and there was some door slamming, her, not me. It was a hard week, and the first real test since she was diagnosed, it was really the first time that type 1 slowed her down, got in her way, interrupted what she was doing.
For me, it was the first time I really felt helpless, I didn't have the words to make her feel better, because, for the first time it really did stop her (albeit not for long) in her tracks. It was also the first time that I really had had enough, I didn't know what to do. We did, however, muddle through the week and come out the other side.
Thankfully, next week we have clinic and I am hoping that she will have a conversation with The Prof and tell him how she really feels. I'm hoping that he will have some answers, and this mumma for probably the first time doesn't know what to say.

So excited ......

Before I start on this post I must apologise, there are other things that I was going to blog about, other things I need to share about the children. However, something happened today that I am so excited about that I must share.

I have a place in the London Marathon next year running for JDRF!!!!!

Some if not all of you are probably looking at this and thinking.......is that it?! Really!!!!

Let me explain.....
When Samuel was diagnosed in 2009 I entered the London Marathon for JDRF, which I promptly forgot about until the email landed in my inbox welcoming me onto the team. I couldn't even run for a bus at this point. This is where my running journey began. Since then I have completed

• 11 Marathons
• 11 Half marathons
• 1 Ultra marathon
• 1 Nulcear race
• 4  10 mile races
• 17  10k races
• 7   5 mile races
• 54 parkruns

There could be more, but I think thats it at time of writing.

So, what makes this news so exciting? 2019 marks Samuels 10th year of living with Type 1 diabetes, and what with Victorias sudden diagnosis in January I wanted to set myself a bigger challenge. I have run Brighton Marathon for the last 7 years and I am set to run it in 2019, I have applied through the ballot for a London place every year for the last 9 years with zero luck. As I walked most of London Marathon when I completed it the first time I've wanted to have another go at it now that I ca actually run. So, what I decided to do was apply for a charity place with JDRF, which is not a decision I took lightly as I have to raise £2000.
Today I got the phone call offering me a place! I've waited 8 years for this...hence my excitement. So there you have it.
Now, I don't like to ask, but if you have any spare pennies and feel the earge I have posted the link to my fundraising page.


https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=CureforSamuelandVictoria&pageUrl=4

School Attendance Meeting.....

Before I start my rant about this particular meeting I had at Samuel and Victoria’s school I want to make it clear that I am not one of those parents who get upset about their child not getting the 100% attendance award at the end of the school year. Nor do I feel aggrieved about the fact that they will never get it, to me it’s just not a battle that I personally choose to fight.

Let me tell you some things about Samuel and school. He is currently in year 8 and just picked his options, he has chosen French, History, Business and Philosophy & Ethics. Academically he is doing extremely well, in most of his core subjects he is above where he should be. He is never late for school, it’s a thing he gets quite anxious about. He has never had his expectation card signed and has never had a detention. A model student some may say.

A couple of months ago I received a letter regarding Samuels attendance, it was currently sitting at 91.3% and the school cut off is 92%. I know!! We are talking 0.7%!! The letter explained how important regular attendance is, and how poor attendance has shown to have a detrimental effect on GCSE results. Again let me remind you we are talking about 0.7%. The letter kindly invited me to attend an attendance meeting to discuss Samuels poor attendance.

So I went, armed with all my appointment letters and letters fromThe Prof.

Here are some highlights......

Me: I was a bit put out at the wording of the letter if I’m honest.
Him: Yes, we word it like that to get a reaction so you will come to the meeting.
Me: Oh. Ok, you know that he has type 1 diabetes don’t you? And he is treated up in London at UCLH as he has an insulin pump?
Him: Yes we know, but not everyone who has diabetes has this much time off. Why did you decide to get a pump?

At this point I was about to get cross as I was thinking 'how dare he question me on where and how I treat my child! However, in true Disney style I 'let it go'.

Him: Is Samuels diabetes well controlled?
Me: Well yes....unless.... He has a cold, is anxious about anything, has had a growth spurt, put on any weight, if he has walked to school, or had PE, or the weather is too hot, or too cold, or if he is tired, or hormonal. Apart from that though, yes he is well controlled.
The letter said about the attendance affecting Samuel academically, have you looked at his report / grades?
Him: Yes I have, imagine how good he could be if he was in school more.
Me; Mmmmm (inside voice said imagine how good he could be if he didn't have a life threatening illness) As you can see he is never late, has never had his card signed.
Him: Yes, a model student....so if we could just get his attendance up.
Me: You do realise that I bring him in much more that I really should do. If he has ketones he really should be at home, (out come the UCLH sick day rules) I can't do all of t his at home as he needs to me monitored as the ketones can make him sick. If he misses school he will always go round to his teachers the next day to pick up any work he has missed.
Him: You could bring him in once he starts to feel better. We would rather him late than not at all. He wouldn't have to go to lessons.

I'm now wondering if he doesn't have to go to lessons then what is the point of me bringing him in when he is feeling so rotten.
We then looked back over the previous year when he did have quite a bit of time off before the summer. For a minute I couldn't think why so I looked it up on my phone. Samuel has a couple of weeks where is was waking up extremely high and with ketones, it was like I had filled the pump with water not insulin! It turned out, once we went to clinic that the boy had grown 3cm and had put on half stone, which in return had knocked out all of his pump settings. All of this was written in a letter from The Prof which I just happened to have in my bag!
We went backward and forward a bit more which resulted in me having to sign a form to say what we had discussed. I did then ask him if I would be getting a phone call to discuss Victoria as she had had a fair amount of time off. He said possibly, so I suggested that we do it as I was there, as it would be pretty much the same as what I had said for Samuel. He declined as he didn't have any paperwork. I left the meeting in pretty much the same mood as when I went in! What a waste of my time. Don't get me wrong I understand that attendance is important, but I would lay money on the fact that there are children in that school with a far worse attendance than Samuel whose parents were not sitting in the same sort of meeting that I was!

Diabetes awareness week ‘18: The signs..

First off let me start by saying that the problem with diagnosing type 1 diabetes is that it’s symptoms are very general and can be easily explained away. When I think back to when my husband was diagnosed in 1996 we explained away every single symptom except the blurred vision. He was tired because he had been working so hard. He was up during the night going to the toilet because he used to drink quite a bit. That’s the danger with Type 1, you can explain it away, the symptoms are similar to lots of other conditions such as flu. However, if it’s left undiagnosed, so untreated the result can be fatal.
So, here they are, the four Ts

• TIRED
• THINNER
• TOILET 
• THIRSTY

If you only take away one thing away from reading my blog, make it this. If you notice any of these symptoms get it checked out. Don’t be put off, ask for a blood glucose test, don’t take no for an answer, it really could be the difference between life and death.

Diabetes awareness week ‘18: What is Type 1

What is Type 1 diabetes?

Type 1 diabetes is an autoimmune condition. For reasons we don’t yet fully understand, your immune system – which is meant to protect you from viruses and bacteria – attacks and destroys the insulin-producing cells in your pancreas, called beta cells.

Insulin is crucial to life. When you eat, insulin moves the energy from your food, called glucose, from your blood into the cells of your body. When the beta cells in your pancreas fail to produce insulin, glucose levels in your blood start to rise and your body can’t function properly. Over time this high level of glucose in the blood may damage nerves and blood vessels and the organs they supply.

This condition affects 400,000 people in the UK, with over 29,000 of them children. Incidence is increasing by about four per cent each year and particularly in children under five, with a five per cent increase each year in this age group over the last 20 years.

What causes it?

More than 50 genes have been identified that can increase a person’s risk of developing type 1 diabetes, but genes are only part of the cause. Scientists are also currently investigating what environmental factors play a role.

What is known is that:

• Destruction of insulin-producing beta cells is due to damage inflicted by your immune system
• Something triggered your immune system to attack your beta cells
• Certain genes put people at a greater risk of developing type 1 diabetes, but are not the only factors involved
• While there are no proven environmental triggers, researchers are looking for possible culprits, such as viral infections and particular molecules within our environment and foods.

Other facts...

• It is NOT caused by eating too many sweets.
• There is no ‘good’ or ‘bad’ type.
• Yes, it is for life, it won’t go away.
• There was nothing we could do to prevent it from happening.
• Insulin is not a ‘cure’ it is ‘life support’.
• Type 1 diabetes is a serious life threatening condition.
• Every item of food eaten has to be carb counted.
• Type 1 diabetes never sleeps.

The most amazing clinic appointment....

Today both Victoria and Samuel had their diabetes clinic appointments at UCLH with The Prof. This was Victoria’s first appointment so I was slightly nervous for her.

Before I talk about the appointment I want to go back to 13 weeks ago when she was first diagnosed. I’d decided that because I was quite laid back with Samuels care, got slightly complacent with it that the ‘diabetes gods’ were teaching me a lesson by imposing this condition on another one of my children. Sort of ‘this will make her sit up and notice us’ type of thing. Which I know is completely ridiculous!!
Anyway, once Victoria’s care was taken over by the UCLH team and she was given her pump I came away with brand new updated guidelines which I decided to implement on Samuel as well as Victoria. I was met with some resistance from Samuel who said ‘everything was working completely fine before, I don’t know why you’ve had to change everything!’ He was being quite dramatic as this is what I changed...
We bolus 15 mins before eating, which gives the insulin a head start on the food.
Every dinner (not just pizza and pasta) we now put on a dual wave. Although we have since started to that for lunch as well.
Now that I’ve finally got Carelink to work I upload their data each week and spend time looking at trends.
I feel much more confident tweaking the pump if I need to.
I regularly night test again (I’d got lazy)
For the last couple of weeks Samuel has had in a sensor. (Victoria only got hers Friday)

So....clinic today and the dreaded HbA1c result, is parents always feel like we are being judged on this number. Since Samuel was diagnosed 9 years ago we have never seen a number below 8.2, even being under the care of The Prof...
Today Samuels was 7.6!!!!! Victoria 7.2!!!!!!
I couldn’t believe it, and the boy had grown another 2.5cm since the last appointment!

The hard work is paying off!

There was also talk of applying for sensors full time so we shall see how that goes and I find it so much easier when he has one.

Samuels 9th Diabetic Birthday

Dear diabetes,

9 years ago on the 15th March we officially met, you were a bit underhand though, you were around for a while without me noticing. That’s ok though, because I noticed you fairly quickly, you didn’t get a chance to get a firm hold on him and make him really poorly, or worse! He wasn’t yours to take! He was, and still is mine.

You arrived with baggage... low blood sugars, high blood sugars, ketones, blood testing, injections, insulin pumps and set changes. Let’s just take a moment to mention food... how many carbs? Are they slow release or fast? How much is on the plate? What if he decides not to eat it all? Don’t even get me started on pizza and pasta that requires a dual wave.

Then comes exercise, can he do it? Are his blood sugars too high? Too low? Does he need a snack first? What about after? It doesn’t stop.

Simple day to day life issues seem to really upset you. Growth spurts, hormones, too hot, too cold, exams, stress, anxiety, he can’t even go to sleep without me worrying that he won’t wake up, and don’t even talk to me about illness! That’s when you really don’t play fair!!

If all of that wasn’t enough what you then decided to do earlier this year was to inflict yourself into another one of my children! Samuel took this to heart but is extremely supportive of his sister.

So on the 15th March we celebrated his ‘diabetic birthday’ in 9 years we haven’t had a hospital admission. Samuel is excelling in school and does not let his diabetes get in the way. We celebrate that so far we are celebrating puberty and the chaos that it brings.

I am thankful for the online friendships that I have formed, passionate parents that fight for their children battling a condition that follows no rules. Let’s just keep going, and remember that ‘hope is in a cure’ x

- Emma

2 weeks in.....All about me.

Those of you who regularly read my blog will know that it's always been about Samuel, and now Victoria, or about Type 1 diabetes in general. This one is going to be different, this one is going to be about me, otherwise known as mum......or Emma, it depends who you are.
However, before we get to that bit let me update you on the progress of Victoria. On  Friday 19th January Victoria's care was taken over by the team at UCLH which is fantastic! I didn't think it would happen so fast. We had our first appointment with them on Wednesday 24th, and we are going again on Tuesday 30th for her pump! I could not be happier about this.

Ok, I don't usually write about me, in fact  I think I have only done it once since I started this blog in 2010.
If you don't know me in real life there are some things that you need to know.

• I don't really 'do' emotion. By that I mean I don't cry at films, or books, or TV programmes. I don't cry at Children in Need or Comic Relief etc.
• My mantra is generally 'it is what it is, and it's ok' 
• Mostly, if something is out of my control, and I can't change it, then I tend not to worry about it. Please note that I said 'mostly'
• I was on anti depressants for 7 years. I stopped taking them in February last year (2017)

These last two weeks in one way have gone so fast, but in another it seems like a life time. The first week I was a mum on a mission. I wanted her transferred out of the care of our local hospital to UCLH as soon as humanly possible, although we had to go through the motions of dealing with the local team. Once that had happened the second week involved me re visiting maths. UCLH gave us a carb ratio to work with, so I had to get back to working out insulin doses, something that I haven't had to do since Samuel started on his pump as it does it for you.

The appointment at UCLH reignited some emotion from me. There is a consultant nurse there who is amazing, and lovely and has the ability to reduce me to tears just by looking at me. Her name is Becky, we had lots of dealings with her when Samuel first went on his pump, and she was the first person that I saw at our appointment. All she has to do is ask me if I'm ok and that's enough to set me off, although I did manage to hold it together, this time. I don't know what will happen next week!

Monday I went back to work, I was off for the first week, and all it took was one of the teachers, who taught Victoria and Samuel, Geraldine, to ask me how I was... yep you've guessed, I was crying on her shoulder. Then Friday, one of the school mums saw me in the car, crying again! Then had to listen to me go on, sorry Julie.

Like I said I'm usually 'its ok', but in all honesty, it's NOT ok. Nothing about this situation is ok, and it won't be.

It's not ok that this has happened again, it wasn't ok the first time. It's not ok that every night that I go to bed I have the worry that one of them won't wake up. It's not ok that children are dying because of this condition. It's not ok.

If you see me, I will probably smile and say that I'm fine, what you won't see so much, is when I'm on my own, driving the car, or running, the smile may be gone, and the tears may be flowing.

I'm one big contradiction.....

Today is Wednesday, so we are five days in with Victoria's' diagnosis, and things are feel slightly weird in the Warrington house. At the moment Victoria is doing really well, she seems confident in what she is doing, and plodding on with it, the only thing she is complaining about is that she is constantly hungry. The other three children I'm not so sure about. Samuel has gone very quiet, in previous blog posts I've spoken about how much of a worrier he is and this seems to be the case now. I asked him this morning "what are you thinking?"... he is not happy about her diagnosis and feels sad. Elizabeth is really upset and is worrying that she will be next, and Olivia, I have no idea, I can't reach her right now, she is being a moody 16 year old.
Me? I'm just one big contradiction! I'm impatient and annoyed right now, the team at Southend say to me that they know I have experience with type 1 and in the next breath talk to me like I'm stupid. Then tell me that don't want to sound patronising, as they are doing that exact same thing. The wheels are in motion for the transfer to UCLH, I phoned them first thing on Monday morning, the referral letter from the GP has been written and she has already been discussed in a meeting with The Prof. So its hard to go through the motions knowing that we aren't staying. The other thing is that one part of me thinks 'what's one more child with it when I already have one, and a husband', then the other side of me, when I sit and think about it by myself isn't 'why us?', because why not? but really?! Did I really need more stress in my life? Then I start overthinking.... Samuel was only 4 when he was diagnosed so doesn't remember not having diabetes, but Victoria is 11. I know that eating disorders happen with boys, but its never been a concern of mine with Samuel. Victoria has already noticed that her stomach is slightly flatter as she had lost a few lbs and has already mentioned that it might come back as she is eating more.

Anyway, that's where we are all at right now...

Now I have two!!!!!

I haven't written a post for a while and in all honesty was going to write one about Samuels growth spurt which made all of his levels go up....AGAIN! Puberty.... you have to love it.

However, that's all changed, yesterday Samuels 11 year old sister Victoria was diagnosed with type 1 diabetes. In the back of mind I have always wondered if another one out of the four would ever be diagnosed. When the girls did the D-GAP trial it was Olivia that tested positive for the antibodies so I always expected it to be her, so the fact that it was Victoria, who tested negative was a bit of a surprise.
We had been to parkrun, Samuel and Victoria were marshals, we went to get a drink after and she knocked back her whole bottle and declared that she was so thirsty! cue alarm bells. I suggested that once we got home that I would test her sugar level. The meter gave us the HI message! Thinking that it may be an error I got her to wash her hands again and we tested twice more with the same response.. the blood machines are so friendly! Out came the ketone machine and we were met with a 5.5...not great.

So, here we are sitting in the hospital waiting to go home, which we think will be after dinner. I don't need the carb count training, and we already know what we are doing. The big thing for me know is to try and get the pair of them treated at the same hospital, so I will be on the phone to UCLH tomorrow.

Once again I am thankful that we knew the signs and she is not 'ill', and its a relaxed diagnoses. looking back there were a couple of other signs, my mum had noticed a slight weight loss, and the mood swings, but we explained them away.
Anyhow, it is what it is, we couldn't prevent it, we can't change it, so now we will look forward to playing blood sugar bingo at meal times, and getting on with it.