Type 1 Diabetes & Sickness, Claudia's Stay In Hospital

A simple sickness bug can result in this!!

I have to say that in the 3 years that Claudia has been diagnosed she had never been admitted to hospital.

She has had colds, treated for swine flu, sickness, yet we have always managed her condition and illness at home until Monday !! She has never had anything more than 1+ of ketones, which have gone within a couple of hours.

Monday morning Claudia got up saying she didn't feel well. Her BG was 15 which can happen, so I gave a correction. The previous day her BG's were fab all day between 4-6 with 1 hypo later on. So I really didn't think it was anything serious.

Suddenly Claudia started being sick, she couldn't even keep water down. I looked at her and thought something isn't right. So I called Claudia fab Diabetes Nurse in Leeds. She said lets check for ketones even though her BG was now below 10. The Blood Ketone Meter showed 3.0 of ketones. Wendy said just pop her up to hospital to get her checked out.

So off to hospital we went. We checked in to A& E and waited we were seen by a lovely nurse, by this point Claudia had 3.5 ketones and had been sick again. Her heart rate was faster than it should have been.

Claudia was then seen by a Doctor, he put a cannula in and put her on fluids and we were taken up to the children's ward. I have to say that Claudia was amazing, she opted to have the cannula put straight in rather than waiting for the numbing cream to work. So very proud of her. They took bloods and sent them to the lab.

On the ward, a lovely registrar checked her over and had her blood results. Even though her BG had never gone above 16 at this point her ketones had crept up to 5.8 and her blood was acidic, basically she was in DKA (Diabetic Ketoacidosis)!!

Her pump was disconnected and she was given dextrose(etc) & insulin via IV infusion. She was put on hourly obs, which included, checking her pupils, reflexes, BG, temp & blood pressure. She was also hooked up to a heart monitor ,due to her being dehydrated & in DKA her heart rate was a little faster than it should have been. Bless her Claudia was woken every hour through the night!! I was awake all night(being such a control freak)!!

It brought back lots of memories of when she was first diagnosed.

My thoughts:
Why ?
What happened?
What did I do wrong?
Why did I not see this coming?
She is only 10, she shouldn't have to go through this?
Type 1 Diabetes is a right ..............................!!

In reality it has been a bit of a wake up call for a number of reasons:

First of all you can have "normal BG readings" and still be in DKA
Sickness can come on very quickly and there is nothing you can do to prevent it.
No matter how "well controlled" your diabetes is, it can happen to you/your child.
Sickness & dehydration are a dreadful combination for someone with Type 1.
How valuable Blood Ketone Meters are!!!!! (Glucomen BG/Ketone Meter)

Luckily we made the right call and took her to hospital.Most importantly, there was nothing we could have done to prevent the illness

We are now back at home, Claudia is not 100% but we have no ketones and BG are within normal range

I would like to thank Claudia's team at Leeds for giving great advice.
The lovely Doctor & nurse in A&E. Especially thank you to the fantastic nurses on Ward 8 at Royal Preston Hospital, for being kind, considerate and so understanding.


Most important of all:  if your gut instinct tells you something is not right, go with it. I rarely call our DSN, but I just knew something was not right.
A Mothers Instinct Is Always Right!

I have posted the pictures to help people understand how complex and serious Type 1 Diabetes is.

A 100 Runs In A 100 Days For JDRF By Thomas Robinson

One of the positive sides of having a child with Type 1 is: You come into contact with the most amazing people. Thomas Robinson I have to say is truly insppirational. Below is his dedication to supporting our children with Type 1 Diabetes.

http://100runsin100daysforjdrf.blogspot.com/


A blog to document the highs, lows, thrills and spills of running 100 10K runs in 100 days for the JDRF. The running started on June 11th and the final, 100th run will be the Bupa Great North Run on September 18th. I aim to raise both money and awareness of Type 1 Diabetes, in particular the great work the JDRF do as the leading charity in Type-1 Diabetes research funding. Sponsor me at www.justgiving.com\100runs4jdrf

Today's run is dedicated to Claudia Allison

It's time to say farewell to Liphook and head back north this morning, via Bedfordshire to pick up Carolyn.  We've had a good time away and it's been great catching up with my family, my sister, her partner and my niece, Grace.  Whilst I was down, I met up with some of my oldest mates in London on Saturday evening, they were full of encouragement and wanting to know all about the challenge.  I logged onto the Justgiving site yesterday to see that Nick and Tom have donated £120 which I'm most grateful for.  Along with Louise Bloxham's further donation (Finlay's Mum, run 40's dedication) this takes me to £930 so far - great stuff!
I'm dedicating today's run to Claudia Allison.  Claudia's Mum Allison emailed me last week:
"Claudia was diagnosed with T1 in May 2008, aged 7 years old.  Now 10, she has a pump and cgm.  Diabetes Power is the website I set up in order to raise awareness of Type 1, along with the "Know the Symptoms" Campaign."
Read Angela's JDRF 1 Campaign Scrapbook entry:

http://www.jdrf1campaign.org.uk/scrapbookgallery.asp?
section=79&sectionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s

Our Thoughts On Type 1 Diabetes!

The New Disney Character Who Has Type 1. Love Her & Type 1 Is A Bit Of A Monkey!!!

Thank you for filling in The Type 1 Online Survey. I handed the results to Anna Morton Director Of NHS Diabetes. On a weekly basis I will blog the last part of the survey. This was the opportunity to say how it felt living or caring for someone with Type 1 Diabetes.

What is written below often sums up how I feel or have felt. Whilst I find this sad, I know at least I am not alone and there are so many amazing people out there who truly understand life with Type 1 Diabetes.


Type 1 Diabetes is overlooked and preference for treatment, research etc seems to be given to type 2 diabetics I run high sugar levels as I\'m terrified of going Hypoglycaemic as I\'ve had 3 previous diabetic comas which is extremely unsettling and also means lost income whilst hospitalised (usually 2-3 days) Getting the right care in my opinion (an Insulin pump) just seems to be a lost cause pot luck dictates whether you get it not whether you actually need it or not.

Sad, angry, upset but very proud of ....... and how he deals with it.

diabetes lives with me i don\'t live with it

People do not understand how difficult it is living with diabetes. I have not known anything other than being diabetic and it runs in my family. I make it look dead easy as I have been dealing with it all my life but I still struggle. The worst part is knowing what is wrong and trying to fix it! Although my diabetes team are fantastic and only ever a phonecall away its the tiredness, emtional feelings that can get to me.

People also don\'t understand that EVERYTHING can affext your diabetes control - including the weather and heat. I work for an NHS in Scotland and I am not certain that my current boss understands much about diabetes.

It is very diffult to get the Hospital to move forward with technology. We could get better control if they were better staffed and willing to educate themselves. We have good results (last two HbA1Cs 7.1 and 6.7) but require 7 finger pricks a day and getting up during the night. It is very wearing but being involved with the local support group helps.

turned our whole family upside down.
no support from anywhere other than people on the internet.
no one understands what we go through each day, even DSN doesn\'t.

It can be frustrating at times. When everything is going well you are thrown a curve ball without any warning. I sometimes question what i have done or

my diabetes has never really been controlled in the 12.5 years that i have been diagnosed. i would really prefer to be on an insulin pump, but my hcp dont agree. i feel this would give me quicker access to lowering my blood sugar and prevent so many cases of dka a year, i have currently been admitted with dka 4 times this year. i try not to really plan anything big, as i never know how my diabetes is going to be, and i have had to cancel things at the last minute so many times. i suffer with mental health problems, and i think my diabetes being unstable causes some of my depression

Adjustment after diagnosis is extremely difficult. My daughter was 17 at diagnosis and does all her treatment herself. However, we still attend all her meetings and consultations because she wants us to.

Its a worry because in general, people do not understand the condition unless they live with it. Schools are reluctant to take responsibility for the condition and more than once, my son has been excluded from physical activities representing his school because he was too much of a \'risk\' for teachers who did not understand what to do if he had a \'funny turn\'. He\'s going to be restricted enough on his choice of employment in the future without this type of discrimimation too.

it took a part of my childs childhood and i hate it for that.....it makes me angry when my child is upset poorly and i cant make it better.
its emotonal and my heart breaks so many times a week.
one thing i will always do is to give him normal has much as i can.
life is a battle most days. it takes over your life

Hard

HEARTBREAKING VEIWING, 24/7, UNPREDICTABLE, EXHAUSTING, COMPLICATED, FOREVER !!!!!!!!
horrible rollercoaster that we will never get off

I try my best t manage it but if I \'m on a downer then a dunt give a toss....every days a challenge becuse of peoples preconcieved ideas about diabetes.

Type one rules our life. Its everywhere and we can not ever get a break from it. Its with us 24 hours a day 7 days a week but we dont let it win.

constant worry , every day is a challenge

We used to take meal times and sweets and trips out holidays etc without any thought then Diabetes came into our lives and it feels nothing will ever be the same again all those things we took for granted now have to be planned counted weighed and measured. We fear for our child at night time when she sleeps and dread the tell tale signs of hypos we long for the days long past when she was a happy go lucky litttle toddler and the only fear we had was the normal fears of every other mother.

support is hardly there, having diabetes 11years i was totally unawearment to have every year until this year, male consultants are more intrested in personal life then helping with diabetes. I also deveoped an eating disorder they labeled as \'diabulimia\' this went unrecgonised for around a year and a half even after been hospitalised several times. Every one says there\'s always some one worse off than you, that it shoukdnt stop you from doing anything... Not when you live with diabetes. Its ruined my body, my confidence, whats next...!

Making sure I eat and my blood sugar is above 5 when I am going to drive.

Its a very hard condition to controle all the time, hospitals and the government are not willing to provide the best possible options for the care of individuals diabeties needs, the process of being considdered for pump theripy is a joke, this type of care may cost a greater initial outlay of cash from the government/local funding options or who ever wants to pay for it it would save thousands in the long run and make the patient have a far better quality of life.

Have coped ok - have three children and worked all my life till 57 years of age. Lately I have become frustrated with the inability to control onset of hypos due - even with TBR adjustments on the pump so feel that I\'m losing control of my life.

Thank you for your input & honesty in the survey. ( I have not edited any comments)

Control Freak Me? Never! & Claudia Question's

Oh Yes !! With OCD Too!!

Being such a control freak and suffering from OCD Diabetes. I love the summer holidays for many reasons.

Having my 5 little lovelies at home is wild, fun, very loud and on many occasions completely insane!!
Oh yes I have complete control (Type 1, not the children) as I am able to watch Claudia like a hawk.

To some people that may seem unhealthy, but when you have a child with Type 1 Diabetes your goals in life change. As a parent you are told that the better control you have, the less potential impact Type 1 will have on your child in their later years. That's a huge responsibility & challenge.

My little goody two shoes (Claudia) has started to stray from the straight and narrow. She was busted stuffing her face with haribo!! Her reply "well I put the right amount of carbs in and they are gluten free" So we had a little chat about healthy eating and taking extra care.

Whilst having a 10 year old that is smart and very articulate can be an advantage on many occasions. Sometimes it's a right royal pain, as she always has an answer for everything. My eyes often roll up to Heaven.

When Claudia is at home during the holiday's the question about her Type 1 Diabetes seem to be more frequent. At  10, Claudia is wanting more independence and answers to more questions.This is an area I have no control over and can be sad on many occasions.

Today's Questions:

"Mum when I grow up and have children, will my children have Type 1 Diabetes & Coeliac Disease?"
My answer: I really don't know the answer to that Claudia.
"Yes but mum because I have them, surely my children are more likely to develop Diabetes & Coeliac"?
My answer: There is a strong possibility, yes.
"mmmmm" says Claudia.

Remember you can do anything you wants.Yes mum, I know but I am different and I don't like having Diabetes & Coeliac Disease.(tears follow)To be honest I don't blame her!! Personally I can't stand either condition, all I can say is:  as an adult you will be able to live as "normal life as possible"

I gave her a big hug, as there is really nothing else I can say or do.

Whilst I  love the fact she can be so open and honest. It hurts as a parent when you can't make things better. 

6 weeks of full control taking care of Claudia's Diabetes
6 weeks of lot's of questions about Type 1 & Coeliac
6 weeks of noise, laughter, fun & madness

So if you see a mum with a tribe of children behind her looking a little nutty, it will more than likely be me!!

Adds up to 1 tired, happy mummy come September !!! Then I have to learn to let go again as Claudia will be in year 6. This is her final year before high school and I will have to try really hard and try and allow her to be more independent, so that she will be prepared for high school.

Letter From Our GP's

Dear PCT I have 5 girls who have cakes & biscuits as part of a varied healthy diet!! They are the correct weight for their height  and are very active!!!!

I had heard rumours, so perhaps I shouldn't have been surprised.

Well what can I say I woke up to a lovely letter from our GP's.

It stated that in line with our Local PCT's recommendation, they will no longer provide gluten free cakes or biscuits on prescription. I never knew you could order cakes, which speaks volumes for informed choice!! We only ever ordered "Tea Biscuits" & short bread on an odd occasion,as they were very useful as "longer lasting carbs" if Claudia was experiencing frequent hypo's.

The reason: To help support people have a healthy diet!!  Why do they try to hide behind ridiculous statements ? We all know it is funding related. They then go on to recommend that you" purchase cakes and biscuits from the gluten free range stocked at your local supermarket".

Everything in moderation should be eaten as part of a Health Diet!

Anyone who requires a gluten free diet will already be aware that gluten free food is normally at least twice the price of "food containing gluten".

 2 out of my 5 girls have Coeliac Disease with a third, who has just been tested!! Currently gluten free food adds at least £40.00 pounds a week to our food bill.

My concern is what will they remove next ? Whilst we are able to manage, my concerns lie with families that are financially struggling, which are many in this climate!!

On top of caring for a child or loved one with all the worries that brings, it would appear that a financial burden is heading our way !!

What makes me cross  is that Type 1 Diabetes & Coeliac Disease are conditions that cannot be prevented or on many occasions predicted. It came as a massive shock to our family.

Yet the GP's & PCT's are happy to fund many items & services for people who perhaps could have prevented their condition. I am not judging anyone, we are all human. Sometimes I just get fed up with delivering dedicated care to my children only to have to fight for the best care & basics.

Caring for a child with a long term condition is challenging enough as it is, without the professional's making it even harder!! Have they consulted anyone in our area or asked their thought ? No !!!
Have they produced an audit to show how many cakes & biscuits are ordered? No !

The majority of people making these rules do not have the condition and often are in a good financial position.

In my humble opinion  people living the life need to be consulted before changes are made.

Type 1 Diabetes By Claudia Aged 8

As you do rummaging through drawers I found the booklet that Claudia wrote when she was 8.
12 months after diagnosis.

Claudia has given me permission to publish lol she is such a Diva!!
It makes me very proud as her mummy to see how much she understood about her condition at the age of 8.(sad too).

I love that she feels confident & open and is able to write down her thoughts.

I think the last page is very striking!!

Type 1 Diabetes Perfection/Expectation/Reality!!

Always Remember This When Dealing With Mr Diabetes I believe The Medical Teams Should Give You This Diagram At Diagnosis!!

Even 3 years on Type 1 Diabetes remains a complete mystery to me on occasions. Yes it is summer and you would expect to reduce the basal/background insulin & adjust the carb ratio's.

Having said that, there comes a point when Claudia diagnosed over 3 years, is only on 4.125 basal rate in 24 hours!! What's that all about?

Bless her she is still having hypo's, having said that they are greatly reduced thanks to the CGM as we have the ability to head them off using the predictive alert.(I can hear the alarms in my head)

People may question, but I have been letting Claudia run a little higher than normal. BG is currently between 7-12. It is a balance of quality of life and control. Claudia's last Hba1c was 6.1% or USA 43. I feel therefore we have plenty of room for flexibility. The heat (lol I know, when talking about the UK) plus hypo's have made her tired, ratty & on occasions Diva behaviour like you wouldn't believe. God help her future husband!

It is such a hard call as a parent: we know that good tight control, will hopefully lead to less long term health issues, however sometimes tight control can be at the cost of more frequent hypo's. I feel recently we have to think about the family as a whole and our quality of life.
Constantly caring and worrying about your child/children can be draining & the battle for good care can be soul destroying.
The most soul destroying part is when your child looks at you asking you to make her feel better.I am trying my best, yet sometimes that's not good enough.


Why is it I feel I am constantly having conversations with my self.(No I am not mad) In fact it often drains me. Trying to get the balance of good control eliminating hypo's & highs is impossible to do on a constant basis.


I wonder if the medical profession truly understand what they are asking of us. Trying to get the perfect balance is impossible, yet so many of us out there are trying to achieve it. No wonder we can have low days and feel we have let our children down.

My daily thoughts:

Will Claudia hypo today?

Will Claudia have any highs?

Have I got the basal rate/carb ratio right?

Will I need to adjust the basal rate?

Will school call today?

Is it cannula change?(check book)

Is it sensor Change?(check book)

What do I need to re-order from GP for Type 1 & Coeliac.

Do school need any further supplies?

Do I have enough Hypo Treatments?

Downloading data from pump & CGM ?

Combination of foods in evening meal in order to help support levels.

What else can I do to make life easier.

Is today the day they announce they have found the cure ?

As a parent, if you don't have Type 1 you have no idea how your child feels.
At this moment in time I am feeling ahhh, the summer holidays are rapidly approaching. It should be 6 weeks of care free fun for the whole family! Sadly that is not the case with Type 1 & Coeliac. Ahh yes the double whammy!! If I get the  insulin balance right you can bet your bottom dollar that the coeliac will throw a spanner in the works!!

I have heard people say to me take a step back and relax. In my opinion that isn't an option. As a parent we get 1 chance to keep our children on the right track before they hit teenage years & adult hood.

Sports Day Tomorrow!! (I will be the shameless parent screaming, when any of my children are running)! Yet my eye will never leave Claudia.

I truly miss our carefree days, yet I will never let Mr D beat me, however on some occasions I now take a big deep breath & chill for an hour or so.(like a 70 mile an hour gust of wind!!)

Meals & Bolus Types For Insulin Pumps

Please always consult your Diabetes Specialist Team before making any alterations to your Diabetes Care Regime.

Meals and Bolus Types

Different carbohydrate foods release their glucose at different rates - some are fast acting and some are slow acting. This is also known as high glycaemic index (GI) (fast) or low GI (slow). Sometimes the fast acting insulin given at a meal works too quickly for the food eaten, and glucose is still being released from the carbohydrate after the insulin has finished working. This may be seen as a rise in blood glucose 3-4 hours after a meal.

Protein and fat delay the digestion of carbohydrate, and so slow the release of glucose. Most main meals contain protein and fat with the carbohydrate.

Insulin pumps can be programmed to better match the meal bolus with the release of glucose from carbohydrate foods with or without protein and fat. It is recommended that these types of boluses are used at least with every main meal to prevent high blood glucose after a meal.

Carbohydrates that are naturally slow acting (low GI) are:

Oats, granary bread, pasta, most whole fruits, pulse vegetables and milk products. It is a good idea for everyone to include some of these healthy foods in the diet to stabilise blood glucose levels.

Some foods are very slow acting because of their fat and protein contents and may be less healthy, but would benefit from a different type of bolus. E.g fish and chips, pizza, curry

Normal bolus

This should be used with fast acting carbohydrates without protein or snacks

Examples:

Non oat breakfast cereals

Toast (white or wholemeal)

Other bread products - crumpets, bagels, bread muffins

Tinned soup

Snacks

Dual wave/multiwave/combo bolus

This should be used with a meal that contains different types of carbohydrate (some fast and some slow) and protein and fat

Examples:

Sausage, mashed potato, baked beans

Fish fingers, chips, baked beans

Spaghetti Bolognese

Jacket potato with beans or tuna or cheese

Roast dinners

Stir fry and rice or wraps

Meals with sweet puddings

Square wave/extended wave bolus

This should be used when most of the meal contains naturally slow acting carbohydrate, foods with a high fat or protein content, or foods eaten over a long time such as a buffet.

Examples:

Pasta with a cheese or cream sauce

Porridge made with milk

Vegetarian meals with pulses and cheese

Granary bread sandwich with crisps, fruit, yogurt

Curry (meat or dahl) and basmati rice

Fish and chips and mushy peas

Pizza

Pie and chips

‘All you can eat’ Chinese or Indian buffet

Party buffet

How you split the bolus or extend the bolus is a matter of trial and error. Main meals should all be extended for at least 1-2 hours, and may need as much as 8 hours if they have lots of fat or protein. If you are using the dual/multi/combo wave the usual combinations are:

30:70 - more slow acting carbohydrate than fast

50:50 - use if not sure about what type of carbohydrate or a mixture

70:30 - more fast acting carbohydrate than slow

Experiment with different bolus types and check blood glucose 2 hours after the meal (and every 2 hours after that) to see if it has worked. Extended boluses can be cancelled if your blood glucose goes too low.

You could also consider an enhanced temporary basal rate after a large meal containing fat and protein, as an alternative to a dual wave bolus

Please always consult your Diabetes Specialist Team before making any alterations to your Diabetes Care Regime.

Insulin "Sick Day Dose" Flowchart



Please always consult your specialist team.

Play Your Cards Right

Type 1 Odds Higher Or Lower?

Whilst on my nightly prowl due to Claudia's CGM alarming. It was predicting high, then low, then high, then low.

I have to say that on double checking with her conventional meter the CGM was accurate.

Lying in bed unable to get to sleep. Bruce Forsyth suddenly sprang to mind and the game show. Play Your Cards Right. Weird I know. Why can't my dreams be of Brad Pitt on exotic islands.
For the people who don't remember, the idea of the card game was Black Jack at the turn of every card you had to predict if the card would be higher or lower than the previous card.

So in essence it felt like I was playing Type 1 Black Jack last Night. Each time the CGM alarm went off, I had a little bet with myself. Will Claudia be high or low. Needless to say I would have been penniless after the first 3 alarms.

Type 1 Diabetes ahhhhhhhhh such a black art, no amount of analysing, preparing etc will ever give you the perfect control.

I think half the battle of accepting and coping with Type 1 is: No matter how hard you try or work at it Mr D has a habit of being unpredictable, so sometimes there are no answers to the strange numbers that our BG meters flash at us.

I have learnt after 3 years, sometimes there is just no explanation. Which can leave you feeling really frustrated & rather angry on occasions.

Love The CGM & Pump. Huge Dislike for Mr D.