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.

Wednesday, 12 April 2017

Some advice....8 years on.

I'm part of quite a few 'diabetes' groups on social media, mainly Facebook. In my opinion they can be the most wonderful places for support and understanding. However, they can also be completely overwhelming. Everyone on them will be at different places on their journey, deal with things in their own way which can sometimes be contradictory. This morning I decided to write this on one of the groups.

For those of you starting out on this journey.... I know that you are scared, and worried. Possibly thinking it's not fair, what did I/we do? Why us?
We understand. It's not the path that any of us would have taken, but it will be ok. You will be ok.
Every single one of us has been in your shoes, some recently and some a long time ago. We all have our stories, some good, some bad. We have shouted, we have cried, we have been angered and we have been (still are) tired. We educate other, we do silly things for charity (tuning 26.2 miles in hot temperatures at Brighton was mine 😬), and we support.
My advice, and you really don't need to take it...
Look forward, not back. You can't change it.
Remember there was NOTHING you could have done to prevent it!!!! NOTHING!!!!
Your child child can do ANYTHING!!! Sure things need additional planning but they can still eat chocolate, go on sleepovers etc.
Choose your this I mean try not to get upset/angry when members of your 'inner' circle say silly things. It's hard for people that don't deal with this condition to understand. They may say 'it could be worse' (this is one I actually believe, but that's me), they won't mean it to sound insensitive. Let's face it did you know much about type 1 before it landed at your door?
Understand that the media get it wrong most of the time, it's frustrating, but they do.
Remember, by being here you have found people that do understand, but it can still be extremely overwhelming, this is a big group.
Lastly, what I would say is that this is only one part of your child. It doesn't have to define them.
Samuel was diagnosed at 4, he is now 12. Our consultant 'The Prof' is an extremely wise man reminds him that type 1 fits in around his life, not the other way round. He is Samuel first, and always will be xx