Life with two adult children with diabetes!!

 How is it possible that I have arrived at this point in my journey of parenting two children with type 1 diabetes. It seems crazy to me how many years have past since I started this blog, and how we are now choosing a new hospital as my son moves over to adult care!

I haven’t posted anything for almost two years now I think, I always mean too but then never know what to write as I have less and less control over their lives and if you recall I struggle with that as I am a self-confessed control freak. It is so hard to sit back and allow both of them to make decisions that I might not agree with but can’t stop them. 

Let’s start with the oldest child, almost 20,  he absolutely does not like wearing a sensor and it is a fight to get him to put one on. In fact at his last hospital appointment his HbA1c was the highest it has been for a very long time. He then looked at me in disbelief and I kid you not these words came out of his mouth “whys that so high then?” My response “well what do you think?” He knows full well why. To be fair to him though his whole mindset changed when out of the blue his consultant was changed, all of us had such a good relationship with the Prof, and still we have no idea what happened. On a more positive note he  now has a full-time job as an accounts assistant, passed his driving test and has his own car. I couldn’t be more proud.

Now…. The almost 18 girl child! She has always caused me an immense amount of stress, I joke that on my death certificate under the section cause of death it will say her name! She decided last year that the pump was no longer what she wanted and she wanted to go back to injections. She felt that she never really gave it a go and she had no choice. To be fair to her that was somewhat true. She was 11 when she was diagnosed and I didn’t really give her an option. I moved her care to UCLH under the Prof and got her a pump. You also need to remember that during the COVID pandemic and lockdown she developed an eating disorder and is still very body conscious. She isn’t keen on how the pump looks. We spoke about it a lot, and came to a compromise that she could have a pump break for a few months. However, I said to her that if she decided that she wanted to go back on the pump that I wouldn’t say I told you so, as long as she didn’t not go back due to her stubbornness. It took about a year for her to admit that the injections weren’t working, her sugar levels were out of control and she admitted that she had been feeling awful, so she is now back on the pump. She is also working full time as a carer and as her driving test some point next week, she won’t give me the exact date. It goes without saying that I am equally proud of her.

It’s hard to sit back and watch any of my children make decisions that I may not agree with, but I do know I have to let them go, and just hope that I have done enough to ensure that they make good decisions. 

Life with older children

 As I write this I am sitting in the garden whilst the almost 18 year old child with diabetes is at a party and the almost 16 year old child with diabetes is not long back from the gym. I’ve logged onto my blog and realised that I’ve not posted for almost a year! That seems crazy to me as it’s not like nothing has happened this past year, in fact it’s probably been one of the most turbulent ones. 

It started back last year when we had a hospital admission with Victoria, she presented with high ketones and I had ran out of ketone strips so had no way of monitoring them. It left us no choice but to go to A&E locally, which in all fairness to them and point of entry they were extremely efficient and red flagged us straight through as they suspected DKA…it wasn’t, however, the experience was extremely frustrating. Around the same time the eldest child moved out, not she is 20 so it was always just around the corner, but the way it happened was quite traumatic for me. Thankfully it has all worked out and she now lives less than a mile away, so literally just around the corner.

Victoria had another hospital admission, this time with a stomach bug which resulted in high ketones and a two night stay in hospital, made all the more exciting by me picking up the same bug! Foolishly I allowed her to drink from my water bottle……schoolgirl error.

That’s a quick catch-up so now the reason for the post. By nature I am a bit of a control freak, I can’t help it, and what I am finding now that the children are that much older is that I have much less involvement in their diabetes care. They both have the Minimed 780 pump which is an amazing bit of technology, it does much of the work itself, and I am only really needed to insert the sensors, neither of them like doing that. Other than that I am not needed, so have become increasingly redundant. This is causing me much anxiety and stress, it’s hard for me to set back and allow them to make their own choices, especially as sometimes they are not the most sensible. Victoria has a much more reckless personality, and Samuel having had this condition for 13 years doesn’t want to be advised, especially by me as I don’t know how it feels to have diabetes. I get told by the pair of them that I don’t understand and never will, which is true. However, they don’t understand what it is like to be their mum and watching them do things that are not necessarily the most sensible. It’s such a tricky path to walk…..any advice I’d welcome! I suppose the only thing that I can really do is have the confidence that I have given the skills to make sensible decisions and always be their, in the background in case they need me.

Parenting big kids is much more challenging than little kids x

Parenting older children….

 I’m going to start this post with the realisation that it has been almost 9 months since I last wrote anything. I think that’s the longest gap between posts since I started this blog. Things have seemed to have gotten in the way, which isn’t surprising really after the last 18months. 

Lots has happened since the last post; Samuel had a pump upgrade to the Medtronic 780….complete game changer in our opinion. I will write another blog post about that. We all had COVID two weeks before Christmas! Yes…all of us! At the same time! That was fun…again I will save that for another day. Oh and Victoria was discharged from the Eating Disorder clinic and not for a good reason.

None of the above though is the subject of this post, this one is about how everything that has happened, and continues to happen impacts me, slightly self-indulgent I know, however it’s easy to forget about how having a chronic health condition impacts the wider family.

If you’ve read previous posts then you you will know that I live in a very busy household, my husband and I have four children 19, 16, 14 and 12 so all live at home as well as his mum. My husband has type 1 diabetes along with the 16 and 14 year old, you can imagine the fun we have when they all have high blood sugars, are completely irrational, argumentative, angry and each think that they are right! Over the years we have muddled through, all being slightly agitated by the others at times like in all big families but we’ve been ok, I’ve been ok…..until now.  

I am open to the suggestion that all of what I am about to say could be partly down to hormones ( I am a woman of a certain age after all ) but I’m not 100% sure. Over the last few months I have noticed that I have been increasingly more anxious, remember how you used to feel before a test at school? Out of nowhere I’ve been feeling sick and worried, taking more time to fall asleep as mind won’t settle. 

I wonder though if it’s because the children are getting older and I am losing some of the control over their health and diabetes. When Samuel was first diagnosed he was only 4, I had complete control. As the years have past I have had to release my grip bit by bit, and now at almost 17 I don’t have much to do with his day to day control. Thankfully he is still fairly sensible and his control is not too bad currently. The same can not be said for Victoria. We had clinic last week and her HbA1c is the worst it has ever been, even worse than at diagnosis!! Her behaviour and regards for her health is reckless, and she doesn’t seem to care. She battles me most days, and as her mum it is heartbreaking not to be able to do anything to help her as she won’t allow anyone to help.

All of this has resulted in the slight decline in my own mental health which I know is something I need to work on, even if it is making time for a run.

Parenting big kids is hard!! 

When type 1 diabetes and an eating disorder collide.

 If you are regular reader of my blog you will know that I will always try and make it light hearted, well as much as living with 3 people with type 1 diabetes can be!! This is not going to be one of those posts. That said this past year, like for everyone else in the world has  it been great. Thankfully we got through the first wave of COVID unscathed and I hope the same can be said as we enter the second wave. 

The original lockdown in March allowed us as a family to eat around our dinning room table together , something we had only managed to do at weekends. We spent more time together, we managed to not kill each other!!! Which, let me tell you when there are seven people all living together and spending that much time together is no easy feat!! I started to work on improving my fitness again as I had been given this great gift of time and my T1 daughter started to workout more. I encouraged this as we did it together and she seemed to be enjoying it. 

However, after a while there was a noticeable shift in what she was doing. Her workouts became more frequent, three times a day after every meal and increased in length. She decided that she was not going to eat after 7pm, which was not a concern to me as many people intermittent fast. What it did do however was shift dinner to 5pm, and she became quite insistent that we ate at that time. 

As lockdown continued throughout the summer her body was changing and she was becoming stronger. Her determination was fierce as she had a plan and knew what she wanted to do. From a mother’s point of view there was little concern over what she was doing as I could see that she was eating alongside her exercise. As September approach I begun to talk to her about going back to school and what that would mean for her routine. She wasn’t quite sure what she was going to do but didn’t seem that worried about it.

September arrived, I went back to work, and the children went back to school. At this point I’m not going to go into great detail as I’m not going to betray my daughters trust. She doesn’t necessarily volunteer information to me, but if I ask her an outright question she will tell me. 

She hasn’t been eating breakfast and lunch she only eats dinner. If dinner looks like it may go past 7pm she refuses it. She weighs herself when she gets up, home from school and again before bed. She will work out how many calories she has eaten in the day and then workout to get rid of them. From a diabetes point of view she has been turning her pump down as she doesn’t want to go as that would mean she needs juice or glucose tablets and she doesn’t want the additional calories. The problem with that is that by running her sugar levels high she risks complications.  The saving grace here is that due to her having diabetes we have access to the dietician, who my daughter has a fantastic relationship with and we have access to the psychologist. I am pleased to say we have had conversations with both and have started the ball rolling in getting her some help with an eating disorder team. With a condition which in order to control means you have no choice but to look at the back of the food packages of every single thing you eat is no wonder so many young people with diabetes also develop eating disorders. That’s without the continued bombardment of diet adverts and filtered pictures on social media. I also have to take some responsibility for this, I constantly complain that I’m too fat, I weigh too much and that I have nothing to wear. This is especially true as like many I have gained some COVID weight. However when we are being so critical of ourselves we need to remember who may be listening.

The road we are currently on is going to be long, and it’s going to be hard for everyone but we must take it so that I can hopefully get my happy daughter back.

Corona Virus - what it means for us...

Before I start I want to make it clear that this is what has been going on in MY house, I am not telling anyone what to do apart from the obvious STAY INSIDE.

I will admit like many when the news of this virus started I didn't think it was anymore serious than a bad case of the flu. I was fully aware that in my house of seven there are four who are more vulnerable. My mother in law is 76 and has COPD and ITP; my husband has type 1 diabetes and due to a case of pleurisy a few years ago shadows on his lungs; Samuel has type 1 diabetes as does Victoria. However, we still went about our business, that was until Sunday (15/03/20), there must be something about that date as it was 11 years ago on that date that Samuel was diagnosed. After dinner Samuel declared that he wasn't feel very well, he felt sick, that usually means that he has ketones (which can be extremely dangerous, can lead to DKA, which can be fatal)  so he checked and yes he did. So we did what we always do in this situation and they eventually came down. The following morning he still felt off and had developed what I can only describe as a barking cough, along with a side order of ketones. I went off to work and left him in bed, the husband had been up during the night being sick so he was also in bed. I called our diabetes team for some advice and when I mentioned the cough she told me to keep him isolated. I called his school to tell them that he was off, I mentioned the cough and was told that I should probably keep him off for the recommended 7 days.
Tuesday - Samuel was still coughing but minor ketones, husband was still being sick, and off I went to work, the girls went to school and college. 8:45 I am told that I shouldn't be in school as I and the rest of my household should be self isolating for 14 days. I phone the secondary school to tell them that Samuel is still not in. I am then advised to definitely collect Victoria, I ask about Elizabeth and am then told to come and collect them both which I do, then on to the college to collect Olivia. I then inform her that she can't leave the house for 14 days which means she can't go to work nor can she see her new boyfriend!! (I will leave up to you to imagine how that went down, it was not pretty)
Wednesday - Samuel still coughing but no ketones, husband still being sick and Olivia still furious! However, my kitchen cupboards are looking lovely and clean! Then..... I am informed that because I live in a vulnerable household I am not allowed back to work for 12 weeks!!
Fast forward to Friday evening when clubs, pubs, cafes etc are to close, schools for us are closed until further notice, and social distancing is a must!!!! But some people are not listening, yes I know you may feel ok, are young and healthy but you can still carry the virus and pass it on!

In a time when many only think of themselves please do the right thing! I have four vulnerable people living in my house!

STAY INSIDE!!!

What would happen if I was no longer around?

Before I start this post I want to make something very clear. I am not planning on not being around, as far as I know I am 100% healthy, I run several times a week and my diet is ok (ish). I'm not planning on 'checking out' anytime soon. That said with the best will in the world very few people know when their time is up and this got me thinking.....
I will often joke with people that if I was no longer around that my husband would not know what do with regard to his own diagnosis as he doesn't know how to even order his repeat prescription!!! I do it for him. As a mum I never want to think about not being around or any of my four children but what would happen to them if something happened to me? Especially the two with type 1 diabetes. I do all of the ordering of supplies from the pharmacy and the pump supplies from Medtronic. I do most of the set changes on both children (although Victoria can do her own, Samuel is too lazy), I sort out the hospital appointments with The Prof, and in fact go to all of the appointments with the children. I know how to set the pumps up, carb count the meals and work out the insulin doses if needed. Part of this is a control thing for me, I want, no need to feel needed. In reality though, surely I am setting them up to fail. If something were to happen to me tomorrow, what would they do? I know that my dad worries about this all of the time and has spoken to me about it in the past. Obviously he doesn't want anything to happen to me, but he worries constantly about the children ad their health.
How many of you parents have things in place? I keep all of  their hospital letters in individual folders, but I really should put all of their information, phone numbers, prescriptions etc together in a folder so that they know what to do.
Its a sobering thought really.

10 years on - Samuel's point of view.

March 15th 20019 marked Samuel's 10th year of living with type 1 diabetes. I asked him a few months back to write something for me to post about what having type 1 diabetes meant to him. He didn't want to do it then so I didn't push it.  I thought I would ask again  and  this is what he wrote:

" 10 Years with diabetes: My name is Samuel Warrington. I was diagnosed with diabetes at the age of 4 on March 15th 2009. It changed my life completely. I had to be driven to hospital in the back of an ambulance. However, the support that I had from my mum and dad made me feel a little bit better about having it, but it did mean that I wasn't allowed sleepovers or a lot of sweets or sugary stuff. When we moved to UCLH it made life easier for my mum, me and my family. Prof Hindmarsh is a really amazing consultant who knows everything about type 1 diabetes and who set up and manages my insulin pump. I also got to meet a cool diabetic person who is now my diabetic pump buddy. Her name is Kita and on August 7th 2012 we got our first pumps together. It was really nice that I didn't have to go through it alone. 4 years later we got a pump upgrade that we were super excited about. Then on January 13th 2018 my sister Victoria was diagnosed. The family was a bit confused as it had come out of nowhere. She is very lucky that she has me as a brother as I can fully understand how she feels when her sugar is high or low. I am now currently 14 years old and I am happy that I have such caring people around me. "

I am really proud of how well Samuels deals with his condition. He plays football, is excelling in school and doesn't let him stop him doing anything he wants to.

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.

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....

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.