Tag Archives: insulin

Sun, Sea & Sugars. 


There are three main events in the Peace calendar that we look forward to every year.  Camping with the nursery gang, Glastonbury  festival and our annual pilgrimage to Ibiza’s Camping Cala Nova which we have been coming to for the last three years, since Arlo was diagnosed. In fact it was right here in 2015 that Arlo started to become symptomatic. Not that we knew that at the time. It is right here in Camping Cala Nova our journey with type one diabetes began. 

I still cringe at the memories of my sister and I trying to get Arlo to eat Jam baguettes when he really didn’t want to, given him litres and litres of water to drink, and loving the afternoon nap times on the beach where we would all fall asleep under the umbrella or I got to read more than one chapter of my book. 

Holidaying Peace style is a family and friends affair. Holidays include Aunties/sister,nanny’s/ mum, cousins, old freinds and new friends. 


 It’s not just us that come back year after year.  In the three years we have been we have met people who have been coming here year after year for up to 10 years in some cases. We’ve made some new  friends in the years we’ve been coming 


Arlo loves it here as much as we do and has made friends along the way who, like Arlo have been coming here year after year. 

Arlo always makes reference to his diabetes starting here, he has spoken of feeling safe here. It’s the one place we can all relax and feel safe. 

Beach life with type one  is tricky for whoever is looking after Arlo and  for Arlo himself. 

It starts with the packing of the beach bag. Packing to spend the day at the beach with kids is always going to involve one big beach bag and 1 or 2 inflatables, now add the diabetic equipment that you need to take. Insulin pen for injection which needs to go in the Frio bag which no doubt you have forgotten to re submerge in the water to make it useable again. So whilst you are quickly making the frio bag reusable you then think about what else you need. Food for hypos, blood glucose monitoring kit and strips, two finger prickers (just in case one doesn’t work), needles and lots of them, a box to put the needles in, Spare cannulas, a box to put all the above in and  then finally another box to put the pump in. Once you have got everything sorted and your down the beach your next challenge is trying to avoid  getting sand in anything to do with type 1 which is no mean feat! 

When at home we use the freestyle libre and Medtronic continuous pump that involves a cannula, however here we have learnt over the years that for a 7 year old boy spending most of his beach life jumping waves and climbing onto inflatables cannulas and scanners will come off or become blocked with sand. Unless we tape them up or continually tell Arlo to stop doing what he is doing or be careful (which we have chosen not to do) there is very little that can be done about it. We have to smile through the annoyance and get the insulin pen and finger prick out. Attempting to use the blood glucose monitor is not as easy as you think in the glaring sunshine you’re trying to see if the blood has hit the scanner, trying to see what the number is on a boy with salty finger tips who just wants to get back in the water. This is the only time Arlo gets a bit pissed at his diabetes, when he has to sit out the waves to treat his hypo. Warm pinapple or sweaty sweets anyone?! 


As I have said in previous posts type one isn’t a  “one size fits all” management style. Every one is different. For Arlo we have learned over the years that beach life makes his numbers low so we throw away our “at home” care plan.  Remove the pump for day time only putting on for the bolus insulin. We don’t have any back ground insulin at all during the day.  The pump goes on at bedtime for the night.  We’ve had the best numbers here whilst on holiday. Which makes all the faffing about with pumps and finger pricks worthwhile.

Every year we are here we ask ourselves the question, can we move here? We tell ourselves let’s move here. We know that one year it may happen but until then we will continue to look forward to our annual pilgrimage to camping Cala Nova, a place that we will return to year after year. A place that holds a special place in all our hearts. 

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Hyper Ballad

Its been a week of hypers, hypos, new pumps and sick bugs in the Peace household. Its been a tough week for all of us. The sick bug hit us Thursday evening and terrified us all when Arlo’s levels dropped low and were dropping instead of going up. We didn’t know what to do, we had read the sick day rules had the plan but when it came to it we all just stared at each waiting for someone to shake us and tell us what to do. That happened in the shape of  our Diabetic Nurse. Over the phone she told us what we needed to do, what to do if it all went tits up and ended  with saying “I’m keeping my phone on all night call me or the hospital at any time, you can do this!”

We did we survived the first night, without a hospital admission. Arlo spoke first, “Mummy we didn’t go to hospital!” then Chris spoke ” Well we did it, at least we know what to expect now, that’s that first out of the way.”

We did do it we were not quite out of the woods and didn’t come out of it unscathed. Arlo’s poor finger tips were covered in small blood blisters,  he now screamed ouch when we did a finger prick test due to having so many tests carried out during the night with the sick bug. Our heads hurt trying to work out where we were at with the pump, the insulin and the sick day rules.

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Hopefully next time we would be more on it and less terrified. A text from Penny who had years of experience being a parent of a type 1  made me think that all is ok and that it does get easier.

When things get a bit tough I  find myself listening to a lot of Bjork and Tori Amos. This week a little sleep deprived, fed up and angry at diabetes for what  Arlo had to go through the last week. I found myself listening to one of my favourite songs  Bjork Hyper Ballard the Brodsky Quartet Version. I found myself sobbing whilst listening to the lyrics. They seemed to be quite fitting to how I was feeling now and for the past 6 months.

We had survived the first blip but sadness and anger filled me knowing that this wouldn’t be the last time Arlo had to endure an illness and that there were going to many other firsts to get over.

bjork pic

Hyper Ballad
Bjork 1995

we live on a mountain
right at the top
there’s a beautiful view
from the top of the mountain
every morning i walk towards the edge
and throw little things off
like:
car-parts, bottles and cutlery
or whatever i find lying around

it’s become a habit
a way
to start the day

i go through this
before you wake up
so i can feel happier
to be safe up here with you

it’s real early morning
no-one is awake
i’m back at my cliff
still throwing things off
i listen to the sounds they make
on their way down
i follow with my eyes ’til they crash
imagine what my body would sound like
slamming against those rocks

and when it lands
will my eyes
be closed or open?

i’ll go through all this
before you wake up
so i can feel happier  to be safe up here with you

Six Months ….

 

It’s now been six months since that awful day back in September 2015.

A lot has changed since then. It’s been a week of reflection, tears, anger and smiles as we look back on how things have changed for us in six months. We’ve learnt a lot since type 1 diabetes joined our family about ourselves, diabetes and life some good, some bad….

 

  1. It doesn’t get easier as time goes on:

Type 1 diabetes in children changes daily. You can never predict when it’s going to happen or what is going to happen. After a night of testing you wake up and analyse your data go over the carbs, food for the previous day, wonder if you did something wrong or if illness played a part. The truth is that’s just diabetes and it will never settle.

 

  1. Pumps are not the cure of diabetes:

You develop a love hate relationship with the insulin pump. Its function is to keep Arlo alive and drip insulin into his body twenty four hours a day. It stops the need for injections up to four to six times a day, and it stops Arlo legs getting infected injected sites. It doesn’t stop type one being there and it doesn’t let you forget. Watching your child play and catching a glimpse of the tubing or pump, catching the eye of a parent or child wondering what is wrong that child is heart-breaking.

 

  1. Arlo is a pretty amazing person:

I make no apologies for gushing about how truly amazing Arlo is on a daily basis. We like every other parent used to fret about his behaviour, his hatred of doing homework, was he behind at school?  None of that matters now. Arlo has had to battle and deal with “grown up shit!” On a daily basis with his diabetes. He takes cannula changes and finger prick testing in his stride, he hates doing it but knows he has to. He knows now that if his levels are too low or too high come bedtime that we will be doing night testing. Arlo says that hypos feel like “I’ve got no bones in my body” and hypers feel like “I’ve got loads of gasses trying to escape from by body and all I can is run around and be manic to get them out!!”   He hates being called brave. When he is having a really bad day he sobs “it’s so hard being brave all the time mummy!” He inspires us every day.

  1. You have to let go:

Every day I want to keep Arlo at home to protect him. Every day we want to stay in our Peace bubble. But instead every day we put on our smiles and let Arlo know that everything is ok.  Arlo is bought up to be social, and to know that there is a whole world out there that is filled with family, friends and adventures. We say to him every day you can do whatever you want yet sometimes in the past six months we’ve not neseccarry been true to our word. Type 1 wasn’t part of the plan, neither was bringing up our boy in an environment where we constantly kept saying you can’t do that or having one of us constantly there to watch him when he was at afterschool clubs or parties. So little by little we’ve learnt to let go and trust Arlo & the people he is with.

  1. What matters is your health, family & friends :

Nothing else matters in the grand scheme of things. Since type 1 diabetes we have both left our jobs in London for jobs 10 mins away from where we live. We are close by to the school, and to Arlo when he is on play dates and we now spend most evenings eating dinner at the kitchen table the three of us at a reasonable time. We may not be earning big bucks but we are here for Arlo. We are despite everything very happy and ironically have found a much healthier, happier work life balance since type 1 diabetes came into our lives.

  1. There is Never a high five moment :

if you are lucky you may get a whole three days where levels have been good, carbs have been kind and you’ve not had to night but just as your about to high five and give yourself a pat on the back, sigh a big breath of relief something will happen and levels will go sky high or too low that dinner from two days ago that gave you perfect levels before and after is now making the levels go sky high.  Half an hour of PE doesn’t affect the levels that much last week but this week you’re having hypos for 8 hours no matter how much insulin you’ve given. A cut to knee, a cold with a slight temp … yep you’ve guessed it back to square one. Growth hormones that list is endless. When you’ve racked your brains as to why this has happened, you’ve gone through the list in your heard, panicked called Mrs L the diabetic nurse and Penny you have to come to the conclusion that this is diabetes and without no rhyme or reason it can change just like that.

  1. You become experts at making it look easy:

Every single waking moment we are always five steps ahead of type 1 diabetes. I’ve predicted and planned for the occasions where there may be food, the treats come out on playdates. The stares from other as we do levels and pump. The comments that you learn not to get angry about because people are not unkind they are inquisitive.  It is now an activity of normal daily living for us and even though we make it look easy it’s not.

blog pic 2

Homecoming.

It felt strange heading home from hospital. We had ticked all the boxes that were required of us, we had become hypo aware in 24 hours, Arlo’s levels had come down, &  he no longer had ketones in his blood . He was no longer in the danger zone for type 1 diabetes. Home was the next stop. I didn’t want to leave the safe confines of the hospital. I was petrified to bring Arlo home, here we had nurses & Drs with us 24 hours a day I could live with crappy food and uncomfortable fold away bed just as long as Arlo was safe, how could we do that at home ?

I kept crying at the thought of being at home without any medical staff to help us. What stopped me from crying was Arlo who sat on the bed looked at Xrss and said “mummy is crying again daddy – she is always crying now!” I looked at Arlo saw this amazing boy who had just had his life turned upside down here he was  was dealing with it in the most amazing way and then there was me a crying wreck. He was still our boy. He had type 1 diabetes but he was still our boy and he needed us to be strong for him.

 

Despite my fears home felt good.  We had contact with the Diabetic Nurses every 2 hours on the phone and guided by them we got through the weekend. I wince when I look back at his levels for that time we hardly  managed to get it down below 20 in that first week. Having a hypo terrified us but that first week looking at his levels we were know where near reaching “4 is the floor!”

We were confused as to this, I being the nurse slightly panicked at the thought of the consistently high sugar levels. I had very little knowledge of Diabetes but what I did know was consistent high levels of sugar in the blood would start to damage nerve endings , could result in kidney failure, blindness and peripheral neuropathy. Armed with my knowledge I was a nervous wreck panicking that Arlo was going to have to deal with all the above. they say a little knowhow can be damaging this couldn’t have been more true for me for the little knowledge I had was indeed correct but for long term uncontrollable diabetes with consistently high sugar levels. What Arlo was experiencing was completely normal in the first couple of weeks of diagnosis. Arlo’s priority was getting his health and his body back to normal and that meant replacing the weight he had lost (about 1.5 stone) and his fat stores and nutrients. His body was screaming out for food and that’s what we had to do feed him resulting in a period of high levels. 

It wasn’t easy with high levels comes a rather manic, energetic sometimes uncontrollable Arlo. We’ve now learnt 3 months down the line that anything above 12 mmols and Arlo starts to loose concentration, can become quite obnoxious, cheeky, energetic and exhausting to be around! You can imagine what he was like with levels of 17-28mmols. Added to this Arlo was terrified to go to bed he wouldn’t go to sleep, wouldn’t leave our sides. For the first 2 weeks we would all just collapse in bed and fall asleep together. We couldn’t blame him, neither Xrss nor myself wanted to go to sleep we were all terrified at bedtime & relived when daylight hit and we had made it through another night.

Awful thoughts go through your mind at night. To let go to sleep is hard this meant you were not in control, it meant you couldn’t be one step ahead of diabetes it meant anything could happen. What if he had a hypo and we didn’t know, what if he was high every night how would this affect him in the future? We knew we couldn’t sustain this thought process forever it was unrealistic. We had to put our trust in the levels and the specialists that he would be ok.

Those first couple of weeks we didn’t really leave the house. Arlo was still at home he wasn’t stable enough to go to school just yet. To be honest we hadn’t thought beyond the next couple of weeks and how we would manage school and work. Whilst we were at home and unbeknown to us our DNS was working hard in the background in preparing the school for Arlo’s return. Before Arlo could return to school the staff would need to be trained in how to administer an insulin injection, check blood glucose levels with the finger prick test and know how to manage hypos and hypers if they were to occur. Arlo’s school is a lovely small village infant school with only 3 years and 3 class’s approx 75 children in total. The DNS had arranged some training sessions with all the staff with Mrs P taken on the role as Arlo’s go to person at school. I was petrified in the thought of Arlo going back to school thoughts went through my mind how would they cope, how would they know if he was having a hypo? Would they know what to do? It was such a tiny school I wondered if they had ever had to deal with medical conditions that could potentially be life threatening.  We were fortunate enough that both our employees allowed us time at home to concentrate on Arlo, that’s exactly what we did for two and half weeks. During this time and before Arlo went back to school we went along to one of the training sessions that the DNS had arranged with all the staff. I sat in front of all the staff and just sobbed it was all so overwhelming and terrifying for me. I wasn’t ready to let go and allow someone else to be responsible for Arlo’s diabetes whilst he was at school. I wasn’t ready to go back to my job which was a 2 hour commute away in London.  Deep down I knew Arlo had to go back to school, I knew we had to get on with our normal everyday life of work, school, socialising, after school clubs etc . So it began the mental preparation of getting back to our normal everyday activities just with type 1 diabetes thrown in the mix to shake it up a bit.

 

My sister had found us an amazing book for Arlo to read called Even Superhero’s get Diabetes by Sue Ganz-Schmitt . It was an excellent book, one that all of us referred to in the first couple of weeks of diagnosis. It helped Arlo understand what was happening now & also leading up to his diagnosis.

 

For us we used it much like a medical book referring to pages when we were not quite sure for example the honey moon phase (which I will come back to in a separate post) we kept thinking this was happening – it wasn’t and we did use this book to clarify what exactly the honeymoon phase was.

 

For those reading this who  like us are new to type 1 diabetes I would thoroughly recommend this book, it really helped us in first couple of weeks.

 

Your son has Type 1 Diabetes!

I could hear the familiar sounds of a ward waking up for the day. Arlo was asleep, I had not slept at all I spent the night holding Arlo’s hand staring at my beautiful boy whom today was Arlo Peace type 1 diabetic.  I was full of mixed emotions. I could see that the nurses had placed some leaflets on the table about diabetes next to the ketones and glucose monitor. I didn’t want to look at them. I didn’t want to do anything other than hold my baby’s hand.

The guilt hit me first, it hit hard. I was a nurse why didn’t I spot the signs. I had very nearly put my son into a coma by not spotting the signs. I had spent 2 days before the hospital admission telling him off for constantly wetting himself and taking drinks from the fridge. Two days later were in hospital.

Sensible me tried to brush off the guilt and concentrate on Arlo.

Arlo woke to say he was hungry as the nurse came to do his blood sugar level. The nurse mentioned he may be hungry for a while. She was not wrong! Five Weetabix later Arlo was asking for more food.

 

We were told that this was completely normal, he would be starving for the next couple of weeks whilst his body started replacing all the lost nutrients and weight he had lost.

The first thing that struck me was he had not gone for a wee all night and had not asked for a drink. The second thing that hit me was that we needed to give him another insulin injection.

The consultant who we had not met yet came over with the nurse to give the insulin. Arlo looked at us with a look of sadness mixed with fear. He didn’t want to have the insulin, I couldn’t blame him really but we had to persuade our sobbing boy that he had to have the injection. In the end he finally admitted defeat and let us do the injection.

The consultant then sat with us and talked. All I can recall from this conversation was the consultant saying,    ” your son has type 1 diabetes, there was nothing you or Arlo did or anything you could have done to prevent this.” The silence was painful nobody said anything. I’m normally the first to fill a silent room with mindless chat but I had no words. I’m sure looking back it wasn’t longer than 1 minute back then it  felt like forever. The consultant broke the silence and said to us, “Arlo can do anything he wants to do, there are only two things that Arlo won’t be able to do and that’s be a pilot and join the army.” Xrss squeezed my hand and smiled at me. I had always said that one of my fears was Arlo deciding he wanted to go and join the army. The irrational mummy in me didn’t want my boy to join the army and now the choice was taken away from him he would never be able to join the army.

The consultant left and the Diabetic Nurse Specialist (DNS) turned up. Introduced herself, left a bag of goodies for Arlo and apologised as she had to head off for teaching promising she would be back later to speak to us. I didn’t know at the time but the DNS was going to be a consistent solid rock to help us once we were at home and school.

It was only 9am and it felt like we had done a full day already. I still couldn’t face looking at the leaflet’s and books. Arlo was feeling better and had eaten two bowls of Weetabix (four Weetabix in each bowl!!)

We left the ward and went to costa. The nurses said “give him whatever he fancies he will be starving”

He wanted apple juice and flap jack so we gave him apple juice and flapjack. When we got to the ward they did his finger prick test (something that he has never had any problems with from the outset). His level had gone back to above 28mmol (normal levels are between 4-7mmol). It was because of the apple juice and flapjack they said. “Maybe don’t have apple juice anymore” the nurses said.

Yet again the guilt hit us hard.

The next 2 days in hospital felt like eternity. As Arlo started to feel better it was a bit of an adventure to him. He wasn’t really aware how serious and how close to life threatening his symptom’s had become. He also wasn’t aware of how big an impact having type 1 diabetes would be. He was only reminded when it came to having insulin injections and levels tested.

I remember chatting to the DNS the following day, still shell shocked I said ” I can’t believe that 2 days ago Arlo didn’t have type 1 diabetes and today he has, I dint know we are going to manage, we work, we go to Glastonbury festival every year, we go camping how are we going to manage”  The Dns put her hand on  my leg looked at me and said ” no, you did have a child with type 1 diabetes you just didn’t know it until now, you managed that ok and you will manage this ok and still do everything  you always did” I laughed, ignorance was definitely bliss.  We had had the most amazing holiday despite Arlo having undiagnosed diabetes. Would it have been the same had we known before going? I’m not sure.

We were allowed back him once we were “hypo aware” and Arlo’s glucose and ketones levels were within normal range.

“Hypo aware” meant us knowing what to do if Arlo blood glucose level went down to dangerously low level of below 4mmol. “Four is the floor!!” is what we had to remember. if this happened we had to act fast. Listening to the DNS talk to us about managing hypos terrified us both, we had to listen and we had to get on with it there really wasn’t any room for us to fear the hypos. If Arlo could be brave enough to have the injections then we could be strong enough to manage his hypos if they occurred.

So we got on with it, stayed strong and both secretly prayed we didn’t have to deal with any hypos.

Armed with a sharps bin, a great big bag of insulin and equipment, a ton of leaflet’s and emergency telephone numbers we were discharged from the hospital 3 days later. We were bringing our baby home to start our new normal.

 

What are ketones?

Ketones are an acid remaining when the body burns its own fat.

When the body has insufficient insulin, it cannot get glucose from the blood into the body’s cells to use as energy and will instead begin to burn fat.The liver converts fatty acids into ketones which are then released into the bloodstream for use as energy. It is normal to have a low level of ketones as ketones will be produced whenever body fat is burned.

In people that are insulin dependent, such as people with type 1 diabetes, however, high levels of ketones in the blood can result from taking too little insulin and this can lead to a particularly dangerous condition known as ketoacidosis.

What are blood glucose levels?

Blood sugar levels are literally the amount of glucose in the blood, sometimes called the serum glucose level. Usually, this amount is expressed as millimoles per litre (mmol/l) and stay stable amongst people without diabetes at around 4-8mmol/L.

(ref source: www.diabetes.co.uk)

 

The Beginning…

 

post 1

It’s difficult to know where to start the first post .

I guess at point of diagnosis would be a good place to start.  The thing is the problems (not that we thought they were problems at the time) came into our live’s way before September.

We now know that Arlo’s symptoms started whilst we were on holiday for most of August. We weren’t to know that there were any signs until much later. 

We were away for 3 weeks travelling through France, Switzerland & Spain to drive to Ibiza. Arlo was never a big water drinker.  In fact he wasn’t a massive drinker full stop so I remember saying to Arlo “now make sure you drink plenty of water to hydrate as it’s going to be really hot and we will be in the camper for long periods of times so you need to drink lots.” 

So he drank, he drank and he drank sometimes 2 litres a day. 

We were in hot countries stuck in the camper for long periods.  I was pleased he had listened to me and was drinking loads. 

He kept wetting himself/wanting to go the toilet all the time, “Well of course he was the amount he was drinking”  I said to myself. 

He was sleeping during the day but he had been in the sea all day snorkelling,  playing with his friends, going to bed late; of course he was going to be shattered. 

He didn’t eat much during the holiday but then none of us did “you don’t feel that hungry in the sun” is what we kept saying to each other. 

He was looking slender and lean  but we just assumed he was growing and turning into his  daddy who was 6ft tall and slender.  Writing this now I am filled with guilt and kick myself that I didn’t notice the signs when we were on holiday on even when we got back when the symptoms continued.

We got back around the August bank holiday Arlo continued to drink anything he could get hold of and wet himself during the day at night time, it was getting exhausting. 

We were two days from heading back to school after our amazing summer holidays. I was keen to get it sorted so booked a doctors appointment, it crossed my mind that he may have a urine infection.

We never made it to the doctors. The next day, Wednesday 2nd Sept 2015, Arlo started to fall asleep during the day, had no energy and was eating everything in his sight.  He was at a friends whilst I was at work.  My friend mentioned he wasn’t himself that day.  That evening when I got home I tested his wee with some urine strips I had bought earlier that day.  His sugar levels were off the scale, wondering if I should wait until morning to see the Gp or head to hospital, my mummy gut instinct kicked in and I scooped him up and took him down to our local A&E. 

 

post 2

My husband was working nights and I didn’t think it was anything to worry about I so told him to stay put. We got to the hospital, checked in and waited less than 5 Min’s before we were seen.  This point becomes a bit of a blur.  I remember Arlo being tested, being told his blood glucose level was 36mmol, his ketones were dangerously high.  I remember a nurse saying that he probably would not have made it to tomorrow and a coma would have been likely had I not bought him in.  I remember lots of doctors and someone mentioning type 1 diabetes.  In a daze I rang my husband and told him to get to the hopsital as soon as possible.  He had already left, I guess his daddy gut instinct had kicked in as well. 

A couple of blood tests later and a rather traumatic cannula insertion we were admitted up to the ward  at approx 1am.  He needed an insulin injection, later I would find out that he would need insulin injections 4 times a day for the rest of his life, I would be told that my son aged 5 3/4 had developed type 1 diabetes.

This was the night our life’s changed forever.