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

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.



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!

Saturday, 12 September 2015

Preparing for change.

I don't like change! There, I've said it. I like order, I like schedules, I like routine. I don't like not being in control, some may even say I'm a control freak and I would have to agree.
The problem is Samuel is approaching 11 and is in year 6 at primary school....his last year. He has had type 1 throughout his whole time at Westwood Academy, he was diagnosed during the prep group. I have to say the school have been amazing, all the staff know him and he has been well supported.  When he leaves in the summer he will not only be leaving the school, he will be leaving all the support from them. Secondary school is a whole other ball game, the school he will hopefully be going to is huge! This is a big concern for me, it will be much more walking during the day from one class to the the next. What will he do if he feels unwell during lesson time? Who will be there to look out for him?
We went to look round to as it was their open day, my oldest daughter already attends this school so was on hand to show us round. Samuel loved it, and can't wait to go. He wanted to look at the science rooms and the maths rooms. The main person I wanted to see though was the school nurse. I was after some reassurance.
She was lovely!! As soon as I told her he was type 1 she said 'Thats  not a problem we have several diabetics in the school' great start. I then told her that Samuel pumps, her eyes lit up. 'Does he? I've seen one before'  Samuel got the pump out and was telling her all about it. They were chatting away and she said to him 'I can't wait for you to start, I love a new bit of kit.'
I then had a few questions....he gets a medical pass which means he can leave the class if he needs to, he can test whenever he needs to, if he is too low to make his way to the medical room the nurse goes to him. I got my reassurance.
So, in June, before the two day induction we will meet up, I need to tell her what I want and what I expect from them, and she will tell me if it's possible.

The next thing for me to do is release the reins slightly and hand over some of the control to Samuel.....that can wait a few more months though, I'm not ready for that just yet.

Monday, 13 July 2015

Weekend of Heartbreak

Nothing affects the online diabetes community more than the photos of blue candles. This is something that I have blogged about before, however if you are new to my blog or new to the online diabetes community you may not know. The blue candle symbolises the passing of someone due to the mis-diagnosis or the complications of type 1 diabetes.
This weekend saw the blue candle twice.
Firstly for 5 year old Kycie Jai. In January of this year Kycie started to complain of headache, her tummy hurt and she was sick. Her parents thought that she was coming down with the flu. By the end of the week she was worse, she was taken to the hospital with a blood glucose level of 1148 mg/dL, here in the UK that would read 63.8 mmol/L. The bg level should be between 4 and 6, yes you have read that right! On the way to hospital she suffered seizures. The Drs said that she had extensive damage to her brain and the family were told to prepare themselves for her to be severely handicapped if she survived. A fb page was created called Kisses for Kycie where we followed her progress. Kycie was a fighter, she fought hard. Kycie gained her angel wings on the morning of 11th July.

Just as I was hearing this sad news on fb another story flashed up. Another child who showed the same symptoms as Kycie.
David was 4 years old, he presented with the symptoms of stomach flu. His bg level was 775 mg/dL, or 43.1 mmol/L. He went into DKA within 48 hours, when he arrived at the hospital he was in a critical condition and his brain had swelled. David gained his angel wings on 12th July.

This should not be happening, the signs are there, you just need to be aware of them, so consider this a public service announcement.....

These are the signs of DKA and need to be acted on immediately:
Excessive thirst
Frequent urination / bed wetting
Nausea & vomiting
Stomach pain
Extreme tiredness / fatigue
Shortness of breath
Laboured breathing
Pear drop scented breath

There are other signs that may go unnoticed:
Extreme hunger
Unintended weight loss
Irritability / sudden mood changes
Blurred vision
Yeast infections.

When my husband was diagnosed in 1995 he had many of the above symptoms but we explained them away. It wasn't until his vision started to go that we took it seriously. The Dr said he couldn't understand how he was still standing, he was admitted to hospital for two weeks.

In 2009 our 4 year old son started to show symptoms, because we knew the signs we acted fast. He was not in DKA and there was no need for him to be admitted into hospital.

I am thankful every day that we knew what we were looking for, many are not so lucky. Please take a minute to learn the signs.

Fly high with the angels Kycie & David