Tuesday, 10 April 2018

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.

Sunday, 8 April 2018

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

Saturday, 27 January 2018

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.

Wednesday, 17 January 2018

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...

Sunday, 14 January 2018

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.

Sunday, 30 July 2017

Heat, hormones and highs

If you're a regular reader of my blog you will know that I don't usually complain about Samuels diabetes. It usually just stays there in the background. Don't get me wrong, we know its there, and every once in a while it will remind us just how annoying it can be. We have an understanding, and we live side by side in harmony, OK that may be romanticising the truth slightly, but you get the picture.
Anyway, back to the point of the post, over the last six weeks or so, diabetes has made itself present. We have been battling random highs, both blood glucose levels and ketones. This has resulted in quite a few days off school, a very grumpy boy who has felt rotten, and an extremely frustrated mum who was beginning to run out of ideas. Nothing was shifting these highs...I tried set changes every day, I changed batteries, and iu changed insulin vials. At one point I did think that I had had a breakthrough when I opened a new vial and used the insulin straight from the fridge. Samuels levels started to fall, I concluded that the mistake I had made was leaving the insulin out of the fridge once I'd opened it. I feel that I should point out at this stage that I always  leave it on the side in my kitchen. However, what I hadn't accounted for was the sudden 'heat wave' that had occurred, and it had got me thinking. Maybe, the insulin in the punpo was getting to hot, after all it is attached to Samuels body which was getting all hot and sweaty, and could possibly be 'going off'. Maybe, the insulin vial sitting on my kitchen worktop was getting too warm as well. So, I decided to put the open vial back into the fridge. This seemed to work.....I had found the problem!!! No.....I hadn't! It worked for a few days, then it didn't!
Out of ideas I decided to ask on the CWD group on FB. It turned out that many had already walked before me on this path. The problem it seems are hormones!! Welcome to puberty! Between the ages of 12 and 15 there is a major hormone shift and what appears to be common in the boys is that their insulin requirements almost double! They were telling ng me that they had to turn the pump up 200%. Its crazy!!!
So, we are currently walking a tightrope, its a fine line between giving enough insulin to combat the highs and giving too much and overdosing him. Thankfully we have clinic next week where I am counting on the wonderful man we lovingly call The Prof to fix it for me. At least for a little while....

Thursday, 25 May 2017

When Type 1 diabetes and Anxiety Collide!!!

Before I start this post and really get into it I want to begin by saying Samuel has never been late to school! He has never been late to secondary school, and in all the time he was at primary school there was only one time and that was because there had been a fatal accident in a nearby road to the school and the surrounding area was gridlocked. No one got to school on time that day so it doesn't count.

Samuel has always been a worrier, he over thinks things he has done since he was tiny. To begin with his main concern was the weather and flooding. If it had been raining a lot he would worry about his grandma, would her house flood (she lives on Canvey, it flooded once in the 60's I think), would our house flood (not likely, we live on a hill). He isn't keen on flying, although he has only flown twice and the first time he was seven months old. I have endless repeats of 'Air crash investigator' to thank for that one, he watches it with his nan.
When he started his final year at primary school he stepped up his concerns a little bit. It started when he asked me what 'personification' meant. When I told him that I had no idea (I still don't and I got a B in my English GCSE), I was met with 'Why don't you know? Did you go to school?? ' I mentioned it to his teacher who couldn't understand what he was worried about as he knew what it was and was using it all the time. Actually, throughout the whole of year 6 his nickname was 'flapper'.
This then turned into the worry of being late for school. He had a job to to in the mornings, putting out the chairs in the hall for assembly, and there was no way he could possibly be late for that, and he never was.

He then started secondary school and it turned into a completely different ball game, and one quite frankly I don't want to play. It started quite gradually, our next door neighbours managed to get their daughter into the same school, they were new to the area. We arranged between us that she would take the three of them to the secondary school, and I would bring them home. That way I only had to drive to the primary school in the mornings and they would meet me there at the end of the day and we would all come home together. This worked for a few weeks, then Samuel began to worry that his sister was making him late. We tried to get him to understand that if she was making him late, then she would be making herself late, and our neighbour late. Why would she do that? He was having none of it, every morning began with him getting cross if his sister wasn't up by 7:30, he would then give me a countdown from about 7:45 onwards. He would tell me what the time was, and how long we had until he wanted to leave. It got to the point where he would be almost in tears. We then decided that I would drive him to school and then to the primary school, the big girls would go together to the secondary school with my neighbour. This worked for a bit. However, what then started to happen was that he would begin to show signs of anxiety on Sundays about being late on the Monday. This happened just as we had put a sensor (CGM) in, which is something we always do the week before clinic. What this showed us really opened our eyes. Samuels bg levels were rising from the moment he got up, they steadied to a point at school but were higher that we would have liked, once he got home they would come all the way down. We also noticed that if he was having any sort of assessment during the day at school the hour leading up to it his levels would rocket!!!! We hadn't realised what the anxiety had been doing, he must have been feeling awful all the time. This also then explained the blowouts that he would have when he got home from school. He had been working so hard all day at school to keep it all inside that when he got home it would be like a volcano erupting!
School have been very supportive, they put things in place so that for a few weeks even if he was late they would mark him as on time to try and take some of the anxiety away, and he also went to a group that we lovingly called 'stress club' which was to help him manage his anxiety. It helped slightly. At our clinic appointment I mentioned it to The Prof and we are waiting for an appointment with the psychology team.

However, what happened next was quite an eye opener. Our car broke down, I know that you are now wondering what that has to do with anything diabetes. What this meant was that instead of driving to school we have had to walk. Samuel decided what time he wanted to leave to get to school and off he went. What this has resulted in is much better blood glucose levels. He is in control of what time he leaves, he doesn't have to wait for me or his sisters. This has reduced his stress levels immensely, which in turn has lowered his morning levels. This means that he begins his school day on a better number and more often than not these good levels have carried on throughout the day. As he spends the day mostly within range this means that when he gets home from school he is in a much better mood.
Don't get me wrong we still have the anxiety issues, and we still have work to do with regard to exam stress but we are in a much better place than six months ago.