Monthly Archives: February 2016

Back to blogging.

I started this blog when Arlo was first diagnosed. At the time I needed somewhere to vent my anger, & talk about how his diagnosishad affected us all. For those that know me well I’m not one to hide in the corner and not talk about my feelings or what’s on my mind. I can’t pretend that all is ok when it is not and I can’t put a smiling face on when all I want to do is cry.

I didn’t realise how affected I would be writing this blog. It stirred up all kinds of anger and turmoil in me writing retrospectively about our new normal. So much so that I had to take a step back, block out what had happened and just take each day as it came to us.

It’s now been six months since Arlo was diagnosed and three months have passed since my last post. A lot of changes have happened since my last post,a whole heap of good and bad has come our way. I’m now ready to share our story again and fill you in on the last 3 months all the tears, the tantrums the highs and the lows.

New Normal= New Friends.

I am 41 years old , have been in my job for past 10 years. I have lived in Dorking for the past 8 years. I have a very close group of friends, a husband, sister and cousin  all of  whom I am  lucky enough to  consider my best mates. I guess you could say I am pretty settled, happy and content with what I have.  When Arlo was diagnosed it felt like my whole world had just ended and a new one popped up to replace the old one. Everything looked the same but it was different, My settled, happy content life had been taken away from us. Or at least that’s how I felt in those first couple of weeks following diagnosis. I felt very isolated, very alone. The day after Arlo was diagnosed two friends texted me saying they knew someone whose child also had type 1 diabetes and did I want their contact details.

I remember reading the texts and even though at the time I was still trying to get my head around everything. Just knowing there was other parents out there made me less lonely.

One of the mums – Penny lived in the next village to us. Like us Penny had a six year old girl with type 1 diabetes, unlike us she also had a twelve year old boy with type 1 diabetes!

Numbers and emails were exchanged and then three weeks later we arranged to meet.

I was slightly nervous to begin with. I had no idea what the outcome of our meeting would be. Weather it would make me feel better or worse about our situation.

We clocked each other and before even speaking Penny just grabbed me and said ” I just need to give you a hug and tell you it will get better.”

I spent most of the time switching between sobbing , ranting and staring in total bewilderment as Penny passed over to me a Smiggle case ( see end of post for information),  snippets of information, and a whole heap of paperwork  to help us when Arlo went back to school all of which Penny had compiled herself to help and support the school.  Arlo had just gone back to school for mornings only with 1/2 hourly telephone calls from us to check everything was ok.  I had not even contemplated how we were going to mange the school and work when Arlo needed to go back full time. Penny motivated me into looking at the future and to start thinking about a back to school plan.

That was six months ago and Penny and I still meet as often as we can. I didn’t know it back then but Penny much  like Mrs  L- Arlo’s Diabetic Nurse  are two people who have come into my life and have become friends as well as a huge support .  Being thrown a curve ball that changes your life path makes you think.  Had it not been for Type 1 Diabetes our lives would never have crossed. Had we met in different circumstances say at school / school clubs / though our kids I’m pretty sure that we would have connected and become friends.

Perks of diabetes #1 = New Friends smiley face

Smiggle Pencil Cases. 

Penny introduced me to the world of Smiggle. They are pencil cases that make excellent cases for kids and diabetes equipment. They are perfect size for kids to carry or to keep in there school bag, they are also perfect size to chuck in your bag when you are heading out.

You can easily  fit into your bag :

  • Blood Glucose machine
  • Finger pricker
  • Test Strips
  • Diabetic levels diary
  • NOK and Hospital information /medical alert information
  • Insulin pens x2 in our case it was novorapid & Lantus
  • Glucose sweets and glucogel
  • Carton apple juice

These are the soft cases which are £12.00

http://www.smiggle.co.uk/shop/en/smiggleuk/pencil-cases

 

The one about the toilet

All that talk about toileting and bodily functions reminded me of the Radar key.

 

For those that don’t know The National Key Scheme (NKS), previously known as the Royal Association for Disability Rights (RADAR) Scheme, was developed because some public toilets designed for disabled people had to be locked to prevent damage and misuse.

 

For those that don’t know The National Key Scheme (NKS), previously known as the Royal Association for Disability Rights (RADAR) Scheme, was developed because some public toilets designed for disabled people had to be locked to prevent damage and misuse.

It is a large, conspicuous, silver-coloured key that opens more than 9,000 accessible toilets in the UK like magic.

 

A couple of weeks back we had a rather exciting day out which involved party like food and party like excitement. Parents of Type 1 will know that anything “party like” brings on unimaginable panic and the feeling that you’ve lost control and your now ten steps behind instead of a few steps ahead!

 

So there we were in our party like environment and Arlo who is manic with high sugar levels needs to pee. We are in Selfridges at peak Christmas shopping time and the queues to the toilet are out the door on every level. We struggled to find somebody to open one of the disabled toilets which would have been ideal for us. Luckily Arlo didn’t have an accident and we managed to get to a toilet next to a cafe and stayed put until levels were corrected and the risk of toilet accidents was no longer an issue.

 

When I was relaying the story back to a friend she mentioned the RADAR key. I had never heard of these keys and upon doing some research kicked myself that had we had one of these keys the scenario that had happened a couple of weeks back would have been much more easier to manage.

 

 

Please click on link below for more information on the RADAR scheme.

https://crm.disabilityrightsuk.org/radar-nks-key

http://www.bbc.co.uk/news/blogs-ouch-22602836

 

 

 

The one about DLA!

In the first few weeks our diabetic nurse specialist – Miss L mentioned that we were now entitled to DLA. For those that don’t know DLA is Disability Living Allowance. Because of Arlo’s diagnosis we were eligible to apply. At the time miss L mentioned it I remember saying to xrss that I was confused, we have just had a week of experts telling us that Arlo will be able to carry on as normal and other than a whole heap of organisation he will be able to continue as he has always done. So why now have we been told we can apply for DLA he isn’t disabled!

Miss L said we didn’t have to worry about it now as we couldn’t apply until  three months after diagnosis so I put it to the back of my mind and didn’t think much more about it.

It was Miss L who kept asking me “How you getting on with your form? You won’t get it until three months post diagnosis but you will need to make a start”

I had yet to print off the form and knew Miss L was heading over for a home visit so thought better get it printed quickly complete our part and then hand it over to Miss L .

Eighty four pages later I had a book in my hand! Looking at it I thought WTF! I honestly thought it would be a case of sending a medical letter confirming diagnosis and job done. I totally under estimated the level of content that was required.

Miss L was doing a home visit and whilst completing her section kept saying you need to give dates, you need to give times, DWP like examples they like time lines otherwise they will decline Arlo’s application. I couldn’t believe what I was hearing so the government had said that all children (under twelve!) with type 1 are entitled to DLA but it’s up to the local authority and how you complete the form as to whether you will be awarded the DLA!

When I finally got round to looking at the form about two months after diagnosis l began to realise why one might need the DLA.  In the NHS all of Arlo diabetic equipment insulin pens / needles / blood glucose machine are all free on prescription and will be for the rest of his life. This is standard NICE recommended equipment that is used to manage type 1 diabetes. Anything above the standard such as injection ports, diabetic kit bags, hypo juice bottles (post to follow) we will have to pay for by ourselves. I get that, I don’t begrudge the NHS for not letting us have injection ports or sweets on prescription. Two months down the line it was getting quite expensive. Injection ports alone were £78 per month! I could now see the importance of the DLA. It took the best part of two evenings to complete the form ensuring I had placed every minute detail in and documented times of hypos – management of these and what level of care was needed as well as hyper detailing the worst case scenario in all scenarios. Feeling pleased that I had completed the form off it went.

Two weeks later Arlo had a bit of a cold, I say a bit of a cold because really that was all it was a dose of calpol and he would be pretty picture of health. Except he wasn’t that week he had three evenings dangerously high blood glucose levels. We had to do two blood tests for glucose and ketones through the night every 1-2 hours. At one point during the middle of the night we wondered if would need to go to hospital because they were so high. We were pretty broken that week.  It was an awful reminder that scenarios like this would be part and parcel of our life now, they were not going to go away. This was our new normal.

Speaking to Miss L about how week, mentioning that he had wet the bed she immediately said “He was high, that will happen if he has high sugar levels.” I hadn’t registered the bed wetting to high levels but of course how could I have forgotten the period before he was diagnosed where he had high levels and was constantly wetting the bed.

I was starting to understand the need for DLA. Arlo needed care, he needed constant supervision until he was old enough to manage his diabetes on his own. The form had already been submitted and even though every child with type 1 diabetes is entitled to DLA it is so dependent on your area, who is reading your form and more importantly the information that is submitted. In other words your child may be entitled to DLA but your child may not get awarded any DLA. I have had past liaisons with the DWP (Department of works and pensions) through my job as a nurse working with vulnerable people. Not all of it was positive, in fact most of it was negative. I wasn’t expecting much when I contacted them. I was pleasantly surprised when I finally got through to them they were helpful, supportive and reassured me the new information would be added to Arlo’s application.

Three months later the letter arrived we had been awarded the middle rate of DLA, we had been awarded the DLA because Arlo did not have control of his bodily functions at certain times. Seeing it there in black and white was really hard, it made me angry, upset and very protective of Arlo, Our lives really had changed and whilst we were dealing with it and adjusting to it time wasn’t making it any easier. Unless you have a child with type 1 diabetes you cannot understand the complexity of this condition how it affects you as a family, as a parent and of course for Arlo who has to live with this condition for the rest of his life.

Arlo has been awarded DLA until he is aged 12. This is the age that the Department of Works and Pension deem Arlo or any other child mature and old enough to manage his own type 1 diabetes. I don’t know where we will be in 6 years. I can’t tell you now what kind of 12 year old Arlo will be. If Arlo aged 6 is anything to go by on Arlo aged 12 is going to be a pretty amazing boy. I have no doubt that he will be mature enough but as with all 12 year olds his priority is going to be playing with his mates, making music and playing football & not type 1 diabetes.

Links :

 

https://www.diabetes.org.uk/How_we_help/Advocacy/Disability_Living_Allowance/

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.