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 battles...by 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


Wednesday, 28 December 2016

Pump upgrade......

Firstly, a quick apology.... life has been so busy the last few months I've not had a chance to pause for breath let alone write my blog....sorry.

Anyway, back in August Samuel got a pump upgrade. I know you are probably comparing this to a phone upgrade and you would be right. We looked at the pumps that were available to him and decided that we would stick with Medtronic and go for the 640G. We also had a few conversations with our pump buddy family and were pleased to find out that Kita was also opting for the 640G. We were equally happy that we could go for training on the same day as we hadn't managed to link up our appointments for ages.
The training day arrived and we went up to UCLH armed with a new sensor inserted, ready and slightly excited. There were four families upgrading so it was nice to meet two other families. After a few hours of training and the pump being set up to meet Samuels needs we were set free with our new bit of kit.

The 640G has a function on it which as far as I am concerned is a complete game changer, its called safeguard. This function when used with the sensor can prevent a hypo taking place. It sensing when the blood glucose levels are dropping and stops the pump from delivering insulin. Once the levels reach a 'safe' level the pump restarts. This in theory prevents the rebound high that can follow the hypo. This function is amazing, it also is reassuring during the night when Samuel is sleeping. It can be hard sometimes though to sit back and allow the pump to do its thing and not intervene.
Our plan now is to see if we can get full time funding for sensors so that we can take full advantage of all of the functions that the pump offers.
One step closer to the artificial pancreas.

Tuesday, 18 October 2016

Test strip rationing!!

Let me start by saying that this wasn't going to be what my next blog post was going to be about. I was going to write one about the pump upgrade and the starting of secondary school, but this got me rattled this afternoon, those posts will come but after I have got this off my chest.

I want to point out that this is not a post bashing the NHS, as many of you will know I have worked within the NHS for 20 years and we are lucky to have it. I also want to point out that I do not expect everyone in the medical profession to know everything about diabetes, both type 1 and type 2. There are so many medical conditions out there that it would be foolish to expect everyone to know. However, what I do expect, is for them to be able to carry out basic maths.

Both the boys in my life have type 1 diabetes, my husband is on injections (mdi) and has been for the last 23 years, my son has an insulin pump. The problem we have with test strips is that the surgery will only prescribe my husband 2 pots a month, 100 test strips. NICE guidance states that on mdi you should test a minimum of five times a day, six for those on pumps. I've  taken that to mean test on waking, before breakfast, lunch, dinner and before bed. So taking into account that they are the only times he tests, and that a month is classed as 30 days he would need 150 strips, 3 pots. They are under prescribing by a pot a month. This is without taking into consideration any hypos, or illnesses that may occur. Now, my son fairs slightly better with 4 pots a month, 200 test strips, double the amount that my husband gets. Like I've said previously NICE guidance states a  minimum of  six times a day. The problem is Samuel is 12 and has just started secondary school, he needs to additionally test when he gets to school, before PE, after PE, at the end of the day before he walks home and at any other time he feels unwell. Also, he needs a pot for the machine he carries on him at all times, the spare machine in school and the one at home. Now, I know that I failed my A level maths but I know that that comes to more than 200.

I realise that the NHS needs to save money, and that the test strips are quite expensive but the alternative would cost the NHS far more. Without adequate testing complications can occur, these include, blindness, kidney damage, nerve damage and more.
So, my message to the pharmacist today who told me that we test far too much is this....

We could do this my way and you give me strips which I ask for so I can keep my boys safe, or, we can do it your way. We will test for 10 days, then we will run out and be unable to test. We won't be able to give the correct doses of insulin, and the chances are my boys will end up in DKA. Then you can tell me whilst they are in hospital fighting for their lives, or worse over their dead bodies that we test too much!

Tuesday, 19 July 2016

A letter to school

We only have three more days left at primary school. I've been dreading this moment for the last year, it has caused me endless worry. We have been so protected within the Westwood Academy bubble that venturing outside is scary.
Below is a copy of the letter which I wrote and gave to the Head earlier today, I wanted to make sure that he had seen it before I broadcast it online.

Dear Mr Archer and staff,
   Sometimes the words Thank You are all that are needed, this is not one of those times. Thank You doesn't seem enough, it does not do justice to the way in which as a school you have cared for Samuel.
    He was diagnosed with Type 1 diabetes in 2009 just as he started Prep group. As a school you didn't bat an eyelid. He was Samuel and would be starting school in September just like everyone else within the group.
    When he started in Reception the rest of the class already knew about his diabetes, they all knew that if they thought he looked poorly that they should tell someone. That is still the case now, they still look out for him.
    When he moved from two injections a day to four you embraced the change. It meant that a member of staff would have to be trained to give it, you had at least six people trained, even those who were needle phobic put themselves forward. When in Year 1 he played tricks on you by saying he was low just to get a juice you kept him in school, even though we all aged during that time.
     When I made the decision to move his care so he could have an insulin pump again you embraced the change, even taking time out of the school holidays to go to London to be trained so that when he returned in September at least two of you were ready.
     You have gone above and beyond what many schools do, nothing I have asked for has ever been a problem. Samuel has never been prevented from doing anything at school, you have never made him feel different, it's always been just one part of him. I've always felt that if he wasn't at home with me then school was the safest place for him to be. In the seven years that he has spent with you I have never had to worry, I knew you were taking excellent care of him, for that I am eternally grateful. I could not have asked for more.

All I can say is "Thank You"

Thank You for keeping him safe.
Thank You for allowing him to not be defined by his condition.
Thank You for keeping me sane.


Emma.



   

Tuesday, 9 February 2016

Basal Testing.......

I'm going to say this upfront, basal testing is exhausting!!

In the three years that Samuel has been pumping we have never attempted the basal testing.  The reason we decided to do it was the results from the last clinic appointment. The boy had grown 4cm! 4cm!! He really needs to slow down. His  HbA1c  had also gone up. What this meant was that he insulin requirements had changed, his ratios were no longer meeting his needs.

I decided, and I realise that not everyone does it the same way, that we would go carb free for 24 hours. Others split it into meals and basal test over a few days but I had decided I wanted to get it over with in the shortest time possible. The whole procedure was exhausting both physically and mentally. Physically because I had to test Samuels blood every 2hrs, and yes that was throughout the night as well. It wasn't exhausting for Samuel though as he slept through every test, didn't even stir! Honestly I was tempted to poke him in the eye, if I was up then he should have been as well! Mentally it was exhausting as we didn't know what to feed him. He was happy with breakfast as it was scrambled eggs, he wasn't so happy with his lunch at school as there was no sandwich, no crisps, he was stuck with chicken, cheese and cucumber, and don't even mention dinner, he was not impressed at all with the fish!

However, it did have some interesting results.
When Samuel first went onto the pump we found that he would consistently hypo before lunch at school. The would happen almost every day. So, the Prof set the pump to deliver zero insulin, yes you read that correctly zero insulin between the hours of 9 and 12. What the basal testing showed was that actually he really needs some now, his glucose levels shot up during this time. We also had to make some adjustments to his overnight levels. So, what then followed was another 24hrs of carb free breakfast and lunch. Obviously this didn't go down very well, but he was a trouper and agreed, the promise of pizza for the next dinner really sold it.

The final results were that the adjustments really helped! Hopefully we will see a better result at the next clinic appointment.
Oh, did I mention that we will have to do this all over again at a weekend to test his other pattern!