Saturday, 18 June 2016

Time Travel With T1 Diabetes & Fright of the life with our ever worst hypo

We are back now... and I can comment on the time travel with Type 1 Diabetes.

As we were planning to go from the UK to the USA, this travel was worrying me. I was still calm as I must have been for my children, family and my sanity. But I was prepared to check him even more frequently than usual. This will be must do for all parents unless on CGM.

Just before we left, I checked with Diabetic Team and Medtronic once more on what was the guidance regarding insulin pump. Their advise was to change pump's time to the local time, as I did.

First day, day of the flights went ok. My diabetic son actually had high sugars (above 10mmol) most of the time. It made me feel comfortable. He didn't sleep during the travel but his sugars were acceptable. (Talking about acceptable sugars is a whole long another story. Whilst any non-diabetic sugars would be average 5.5mmol all the time, being around 10mmol for diabetic during time of change and volatility is perfect in our eyes.) However the following day was the roller coaster.

It was very lazy day, this was the day when Toby was recuperating after we squeezed 30 hours in the previous day (due to time change).

He went low during the day and we easily boosted his blood sugars back up. As the evening approached, I was on the guard. I was awaiting for the active (meal) insulin to work its way through, before I do the night time check.

Suddenly I woke up just after 9pm. I felt urge to go and check Toby... His sugars were 2.0, that is severe hypo, possibly one of the lowest readings that we ever had. I  woke him up and he was responsive. Usually he is in a very deep sleep therefore by responsive I mean him responding & doing what I have told him to do. I asked him to eat the glucose.

He had 5 glucose tablets in total (20 carbohydrates).

I was on a standstill. Time was ticking.... 1 minute, 2 minutes... Surpassingly glucose tablets should work within 15 minutes.... 3 minutes, 4 minutes.... Then I can check him again.... 5minutes, 6 minutes...

9 minutes... I can hear Toby screaming out.... It feels like I am weightless... I am quicker than lightning to get in his room. Dad has woken up (next to him) and is trying to speak with Toby.... No response there... My hands are shaking... I put my hand on his body... COLD SWEAT... I know that this loud repetitive scream was not fear of the bad dream... This is a pre-stage of Diabetic Coma.

This is a delirious noise... involuntary... his brain is going into the black out due to lack of blood sugar.

Quickly I check him again.... 9 minutes.... My hands are shaking now... has his sugars dropped or risen since I checked him before? My husband asks me: "Do you know what you are doing?"

Yes, I know...I have checked his BG & his sugars now are 2.5. Now it is time for waiting... 10 minutes, 11 minutes... Time is dragging.... 12 minutes, 13 minutes...

                                                                   ###     ###    ###

Type 1 Diabetes... One moment seems so perfect that people could question whether there is something wrong with your child... Split second later... you go through the biggest fears of life and death in your life!

As regards to the time travel:

As I am unable to establish / test my sons day time basals, next time when travelling across the time zones and changing time on the pump to the local time, I would make sure that the basal rate would be about the same throughout the day.

Our basal rate for the particular time  of the day when the hypo happened was about 3 times of the hourly basal (at any other time of the day).

Friday, 27 June 2014

Preventing complications when T1 Diabetic

My son caught a splinter on a Thursday evening, and that has been very worrying experience since he was diagnosed with Type 1 diabetes 4 months ago.

When he was diagnosed with Diabetes, I learnt that we need to try to prevent injuries to avoid any immediate or future complications. Especially, we need to look after his feet.

Here we go, 4 month into it, and Toby manages to get splinter in his large toe. Straight away, I take him to Minor Injuries in Cannock Chase Hospital. It takes us 3 hours to be seen by the nurse. Toby is asleep by this time and nurse attempts to get the splinter out. This attempt is unsuccessful and we wake him up by picking his toe with a needle. We have a second unsuccesful attempt after the nurse had numbed his toe with some special 'magic' gel.

We return back to a hospital the next day. This time it is Stafford Hopital A&E. There are quite a few checks and arrangements to be done. Toby gets lots of stickers: for staying still for his x-rays, for having his toe ultra sound done and for showing his toe to the doctors and nurses.

Not being aware of requirements, Toby has a drink at 11am that turns out to jeopardise his chances of getting his splinter out on the day.

We went back to the hospital on Saturday and his splinter was finally removed.

Thanks to Shoughborough ward who looked after Toby extremely well, especially to Mandy for being there for us and making Toby's favourite toasties

Wednesday, 28 May 2014

Big questions for a little man who was diagnosed with Type 1 Diabetes

It is our second week on an insulin pump and results wise we are managing extremely good. What we are struggling with, it is an attachment of cannulas 'Mios' to my 5 year old son's tummy.

Routine change of cannula has triggered some Big BIG Questions.

As we were changing cannula 2 days ago, our son asked: "Why do I need it? Would I die with out it?"

"Yes, Toby, you would die without insulin but we won't let it happen. We will look after you to make sure that you are fine. We will do it because we love you too much."

Only two days apart and we have incident with cannula falling out... It falls of his tummy and it happens not only ones but twice. It is first ever occurrence since we have been connected and I am puzzled... How and why did it happen.

As I am attaching cannula for a second time, Toby says:

"Mum, Will I need this, Will I be diabetic when I am 18?"

"Yes, Toby, you will need it when you are 18 unless miracle happens or science progresses. You may pray God and he can heal you like he looked after his own son."

Insulin pens vs insulin pump

We have chosen to have an insulin pump for our son's diabetes treatment.

Before choosing an insulin pump, there were no two thoughts of which was the best option. It was clear that insulin pump will give a better control of diabetes (possible prevention of possible future complications) & our son will be able to have more snacks as and when we are out.

First insulin pump training session and me and my husband were connected to insulin pump in order for us to experience what our son will have to live with every day. First, it was a big surprise that we were connected, but it was a good thing, since I was able to rethink question of Pumps vs Pens.

As mentioned, the benefit of insulin pumps are more snacks and better control of blood glucose, however insulin pump was very very disturbing for me. Whether I was driving a car or sitting on a sofa, it was pricking my hip and/or my stomach. Sleep with a pump was not a problem for me.

Changing cannula every time is quite challenging too, especially now that my 5 year old son is connected to it.

Connecting cannula to your body is painful, whether you are a child or an adult. You need to change it every 3 days as a minimum. The pain is so strong that you don't forget it during 3 recommended days, and when you come to change it again, it is still on your mind and you are fearful.

It takes us about 30 minutes of encouragement  before we are able to change cannula for our 5 year old son.

If you would need to choose...

Would you go for 4 painless (or minimal pain) injections a day or 1 really painful needle every three days!?!?

My son has already asked whether he can go back to pens, however we encourage him to stay with insulin pump for a bit longer.

Pitfalls of insulin pens

Whilst we managed to gain reasonable control over diabetes when on insulin pens, I just had a feeling that there are too much insulin in my son's body since he constantly was going too low. This got confirmed when we moved to insulin pump, as everybody's insulin doses were reduced by 20%.  They might be brought back to previous levels after initial trial. Ours stayed at reduced rate also after pump introduction period.

Too much insulin in my son's body whilst on insulin pen meant that in order to prevent him from going low, I constantly needed to "feed him up". There were no little enough doses with insulin pens (less than 0.5units) that I could inject him if he had only small meal. He would go low after breakfast, before dinner, just having any activity with other children. If we would go to the play centre, I would need to limit his play because I knew that he would go low even after having a chocolate bar.

Insulin doses when first diagnosed with T1D

Our insulin doses for my 4 year old son when he was first diagnosed with Type 1 Diabetes were

4 units of Levemir (long lasting) insulin over first week
And up to 4 units of Novo Rapid (quick acting) with meals when we were dealing with extreme hunger of his

Once we got settled, his insulin demand dropped and he was on

2 units of long lasting insulin first thing in the morning,
No quick release (novo rapid) insulin with breakfast,
1.5 units of insulin at lunch time and
2 units of insulin with extra large evening meal (1.5 units for regular meal).

After being diagnosed with T1D 3 months ago, we have now moved on insulin pump & his insulin/carb ratio is 1unit of insulin for every 80 grams of carbs eaten.

Saturday, 22 February 2014

Odds of siblings getting T1D (Type 1 Diabetes)

When my eldest son was diagnosed with Diabetes Type 1, question of chances for my youngest son to develop Diabetes did not entertain my mind too often.

However today it is not leaving me alone. 

I was told that previous 2 diabetic children at my eldest son's school were brother and sister. I also went on website where I read about a family where all 3 children are diabetic.

This has made me to do some research on odds of developing Diabetes in siblings and they are some how worrying. According to Joslin Diabetes Centre and Joslin Clinic website chances of developing Diabetes, if one of the siblings has Diabetes, are 1 in 10 by the age of 50. Please follow the link to read Joslin website for more information on odds.

This has made me wonder about Beta Cell Encapsulation in healthy siblings to prevent autoimmune system attacking their own (currently healthy) Beta cells. As far as I know, there are no such a preventative measure at the moment available in the UK or elsewhere. We definitely would be interested if that would be an option.

If you would ask me 'why' would I like to encapsulate my sons' beta cells, the reasons being are:

1) Genes ascertain / contribute to development of Diabetes Type 1. We have had 3 family members who have / had Type 2 therefore this suggests that our family genes are more susseptible to develop Diabetes.

2) Environmental triggers. Since we are going to live in the same environment (climate, the same locality and attend the same nurseries / schools etc), we are providing the same environmental factors to our youngest son as ones that led our eldest son to develop T1D.

If you are interested to find out whether sibling has higher risk to develop T1D, you can apply to participate in the research to test islet cell antibodies. This will indicate whether autoimmune system has alredy started to attack pancreas.

You can find details of the study, including links to participant information, on Bristol University website at

Day out with T1D ( Type 1 Diabetes) and our new family member

Since my son has been diagnosed with T1D, we have acquired a new family member. His name is Insulin and he comes with us everywhere where we go.

(I remember time when my youngest son was born and we all would be visiting someone. When we would be leaving for home, my eldest son would say: " Mummy, are we leaving Oliver here?. I would say: "No, we won't leave him here, he is our family member. He comes with us where ever we go. It is absolutely the same with Insulin now.)

So today we had a big day attending Sid's (from Cbeebies) Show and we packed Toby's newly acquired lunch box with his:

Magic Pen for reading blood sugars,
Insulin supplies
And snacks for treating lows.

We also took with us 2 apples. 1 apple for each of our 2 boys. Since Toby is not allowed snacks due to his Diabetes, we have decided that we all are eating the same foods and snacks. That meant that our youngest son will need to eat fruit snacks between his meals e.g. during Sid's Show break time.

The show was great and both boys were enjoying it till the break time came. Youngest son did not wanted his apple and was reaching out for Toby's lunch box where all the hypo treatment goodies were. Toby in the meantime happily ate his apple. Only in the end of the break time Toby asked: "But why are they (pointing at all the  children) eating sweeties?" This question break my heart, and, once the show resumed, left me weeping silently and drying my tears for good 15-20 minutes.