The effect of oral steroids on a Type 1 Child

This week, my Type 1 son was admitted to hospital because he had a kind of asthma attack after catching a cold. It has happened before – but luckily 4 years ago.

To cut a long story short – he’s fine now, and his insulin pump and CGM were amazing. The staff at his hospital were brilliant, and there was even a nurse who dared to get out of her comfort zone and use the pump so I could sleep for a bit.

As part of his treatment, A was given oral steroids. So, this post is about mine and my husbands observations on how oral Steroids affected our son’s blood sugar. Parents of T1’s and T1’s who’ve had Steroids before will know they shoot BG’s up up up to the sky!

DISCLAIMER: the following is NOT medical advice, it’s just our observations.

 

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Day 1 of treating breathing difficulties with Steroids.

 

 

  • “A” was given two lots of Prednisone over two days. Known as “Pred” to the medical staff, A’s Consultant described it as a “dirty steroid”. I’m guessing that means it works well but has a bad affect on BG.
  • Once taken Prednisone starts working within minutes and the peak effect is 2-3 hours after it is taken.
  • However, we found it affected blood sugar for about 8 hours.
  • First dose, we corrected the highs but they didn’t touch it, and consequently A had to have a LOT more insulin because his very high BG’s meant he was insulin resistant. Pen corrections were given instead of pump to make sure he got the insulin.
  • For the second dose the next day,  A’s consultant worked out that a large bolus taken with the Prednisone would combat the high BG. He was right and 1/3rd of A’s Total Daily Insulin (10 units Novorapid) was given with the Prednisone. This worked well, but about 6 hours later, BG started to creep up again and a further correction had to be given (4 units).
  • We found that with each dose of Prednisone, A need about DOUBLE his average daily insulin.

So, if it does happen again, we know what to do about the high BG’s!

 

 

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Top Ten tips for parents of newly diagnosed T1 child

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I’ve been doing this for five years now – being the main carer to a Type 1 child. Alex was diagnosed in June 2010 aged 11 months. He’s now 5, almost 6 and I’ve learnt so much I just have to pass some of it on. These are my top tips ten for parents of a newly diagnosed Type 1 child:

 

1. Educate yourself about Type 1. The more you know, the better you can care for your child. Don’t ever think you know it all, however long you’ve been doing it.

2. Don’t blame yourself for your child’s Type 1, or for that matter that infection, what you fed your child, vaccinations, or anything else you think may have caused it. Maybe what you think caused it, did cause it. Maybe it didn’t. We just don’t know at the moment. Type 1 happens and you can’t stop it. Blaming yourself won’t change a thing it will just make you feel worse.

3. Get support from the online diabetes community. Facebook, Twitter etc. You will find a combined hundreds of years of type 1 carer experience and shortcuts that only other parents can tell you. And there is a “pay it forward” mentality within the community – people want to help. Find out if there is a support group in your area.

 4. Don’t expect sympathy or understanding from friends or family. Unless your friend etc  has type 1 themselves, or a close family member, they will have no idea of just how devistating, time consuming and utterly crap type 1 is. So don’t expect them to understand at all and don’t blame them when they don’t.

5. Be open to diabetes technology. Insulin pumps, CGMs, smart meters etc, are all there to help make you and your child’s life easier and things are moving on quickly. I’ve lost count of the number of adults with T1 and parents of children with T1 who regret not swapping to a pump sooner.

6. Be practical. Remember to order repeat prescriptions, always take hypo treatment, insulin and meter when you go out. Have an emergency kit ready to take everywhere with you. If you end up having to go to hospital with your child, take all their medications with you as if you were going on holiday – don’t assume the hospital will have insulin etc readily available.Screen Shot 2015-05-30 at 12.32.28

7. Don’t let your child’s blood sugar reading affect your mood. If things go wrong, getting into a bad mood about it won’t help anyone. And as I learnt recently, there are no good or bad blood sugar readings, there are only blood sugar readings: some need dealing with more than others.

8. Keep calm and carry on. Stick to the treatment protocol your hospital has provided. This is especially true when you child is ill. Test BG when you know you should, correct and treat hypos and hypers. Don’t panic if your child has an extreme high or low BG – a carer in a panic is not a good carer.

9. Look after yourself. An ill carer doesn’t care as well. Get your prescriptions, groceries etc delivered if it makes things easier for you. Keep an eye on your own health because yours is as important as your child’s if they are to stay as healthy as possible.

10. Be optimistic. Type 1 is not nice, but your child can live a full life – they just need extra care. Cry and get emotional if you need to, but there is a time for everything. Wallowing in pity and pessimism won’t help you or your child at all.

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Sugar Surfing with Dr Stephen Ponder MD

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Yesterday I made a rare trip to London. The reason why I ventured back to the City of my birth, was a JDRF Discovery Day where the guest speaker was Dr Stephen Ponder. An American Diabetes doctor who also happens to have had Type 1 for nearly 50 years, diagnosed aged 9. He’s had a CGM for six years.

If you are wondering what is Sugar Surfing here is my definition (not Dr Ponder’s). It’s a lot more than this definition, but I wanted to put it into a sentence to help those who know nothing about it, get an idea of what it’s about:

It’s a proactive type of diabetes management that looks for certain instances in BG rises and falls and encourages the person to correct and manage those deviations now, to prevent hypos and hypers and get as steady BG as possible.

The Talk:

The talk started with the parent who kick started Dr Ponder coming to the UK. Elle Dormer had seen a friend on Facebook “like” his page (The Power Within) and looked at the page herself. She found it inspiring and helpful and decided to phone up JDRF and ask them to see if Dr Ponder could be brought over to the UK to give his talk. JDRF being the fabulous charity that they are, decided within 24 hours that they would like to go ahead and the rest is history. (Note, she did say that another well known diabetes charity in the UK (you know the one I mean!) took 7 months to do something after she contacted them.

The talk lasted a few hours, and had a lot of information so this is a looong post. I recommend you have a look at Dr Ponder’s website and if you have the money, buy the book. All the info on Sugar Surfing is on the website.

PLEASE NOTE: Sugar Surfing can be used for pumpers, non-pumpers and also those without CGMs. But it is easier with a CGM.

DISCLAIMER: These are my notes from the talk, and neither me or Dr Ponder are giving you diabetes care advice. It is a way to look at how you self-manage diabetes. I couldn’t get down everything that was discussed, but if you think it may be a method of D management for you or your child, please get the book, as there is SO much more to Sugar Surfing than what I have written here.

Dr Ponder (I’ll call him Dr P from now on) started posting his Sugar Surfing (SS) tips on his website and FB page. He was asked to compile them into a book. The book is now available but he never pushed it, and only mentioned it once I think. Dr P also put UK mmols on all his charts – very helpful as the US numbering of Blood Glucose (BG) confuses me totally.

Dr P pointed out early on that there are no good or bad BG numbers. There are just numbers, and it’s very important especially for parents to not burden our children by saying BGs are good or bad. It can have long term negative impacts on children.

What is Sugar Surfing?

Sugar surfing is a process not a recipe or formula. So if you are looking for one, you won’t get it. It’s about being proactive and living in the moment. If you see a dramatic change in a BG reading you act on it. Common sense really but not how  many deal with their diabetes.

  • It’s dynamic self management.

Dr P pointed out that most diabetes education is based on static care. i.e you change insulin doses based on past events. But SS is about management in the moment, it’s forward looking  not backwards looking. If you see a dramatic change in BG then you act on it.

Static vs Dynamic Diabetes Care

Static D Care : actions are predetermined, there is minimal flexibility, outcomes don’t immediately affect actions, it’s easy to teach/learn.

Dynamic D Care (of which Sugar Surfing is one): actions are dependent on the situation/circumstance, flexible and adaptable, outcomes constantly influence subsequent actions, training is needed as well as ongoing reinforcement.

  • SS is fuzzy logic. There is no formula. Every person is different. Be realistic – have low expectations to start. Sugar Surfing is a slow process.
  • In SS, insulin dosing and giving insulin time to start working and see it effecting this is very important.
  • In SS the correct basal rates are very important. So basal testing should be done to ensure correct basal rates.

(Note from me, I’ve never basal tested my son. He was 11 months old when diagnosed now 5 and it was impossible to basal test a baby. Even now, he is one of those children who cannot miss a meal. I know some do basal test, but I don’t think any parents should feel guilty or that they are doing the wrong thing by not basal testing. I have had the opportunity for impromptu basal testing where snacks and meals have been delayed due to various reasons, and I have to say most of the time the basal seemed correct).

 

Basic sugar surfing moves (things to look for) are: if you can’t read the text in the photo, click on the photo and it will give you a better quality picture.

  • Basic microbolus (sorry don’t have a photo of this)
  • Basic pivot:
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Basic Pivot

 

  • Basic drop – 2-3 hrs insulin to work then BG drops after you need to correct
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Basic Drop

 

  • Mini pivot – slow drift
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Mini pivot

 

  • Mini carb pivot:
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Mini Carb Pivot

 

  • Insulin food mismatch and recovery:
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Insulin mismatch and recovery

 

Remember, there is no formula in dealing with these occurrences, each individual person must learn how to deal with them themselves.

Sugar Surfing Mindset: 

Let go of judging, feeling defective or broken, shame, fearing the future, isolation, pity, guilt

Embrace – acceptance, a sense of normalty, openness, enjoying the moment, teamwork, empowering/supporting, self-confidence

  • Learn from your failures
  • You can’t stop the waves but you can learn to surf
  • Diabetes care is all about choices
  • Diabetes care  is best approached one day at a time.

SS requires the following: a working knowledge of principles/concepts, maintaining situational awareness, the ability to adjust to changing or shifting conditions

How to do it:

  • Make ranges easy to achieve
  • Aim high and wide at first
  • Develop personal confidence
  • Don’t hurry or rush it
  • Lower/tighten target ranges VERY gradually
  • As your skills improve, adjust your action thresholds
  • Turnaround time: try and act sooner rather than leaving it

Pivoting is the key – known when to apply glucose or insulin pivot  turn it around

So how do you do Sugar Surfing?

  • Set high/low action limits on BGs
  • Be mindful of rates of change it up or down arrows
  • Consider recent current trends

Look at the BG stats and don’t miss an opportunity to act if you see any of the above. For example if BG is rising rapidly, give a correction – don’t wait for it to get even higher. If you do the correction earlier, the peak won’t be as high.

 

 Traits of effective Sugar Surfers:

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Principles of Sugar Surfing:

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Calibrating CGMs tips:

  • First day sensor can be erratic, calibrate on steady trend & in target range.
  • Cal after large swings , after waking

Sugar Surfing Insulin timing and meal spikes:

  • Insulin timing – take insulin before the meal 15/20 mins as this can prevent meal spikes, if you can, wait to eat  until BG on graph starts to drop
  • Stopping sugar spikes – a1cs show BG swings
  • After meal control is very important to keep A1c below 7.5%

 

Micro dosing (Insulin and Glucose)

  • CGM is needed for this aspect of SS. It is not the same as a full correction dose.
  • Experiment with microbolusing
  • Preempting – step in and stop a rise in BG.
  • Dont look at the number look at the direction
  • Micro carbing – to stop hypos
  • Sometime you may need to correct your experiments – these are not failures
  • You don’t need to wait to see the doc to tell you stuff – check out differences yourself
  • Experiment with insulin and carbs
  • Aim small miss small

Other tips: 

  • Develop skills at night targets first
  • Practice practice practice
  • Prior skills must be masetered first

MDI iChains: (nothing to do with Apple!) Specially for people on injections, not pumping

This is where you inject multiple times for difficult foods etc. It’s the equivalent of a square/extended bolus on a pump

  • Learn your own insulin duration to forge ichains
  • Managing slow trends – correct at pivot  – be patient
  • Don’t miss an opportunity to correct an out of range BG
  • Preempt meal spikes

Engine Braking:(stopping a hypo)

Turn off basal to try to stop a hypo ( note from me, the Medtronic 640G does this) or zero temp basal.

 

Final note from me: I was quite pleased to see that I was already doing some Sugar Surfing to a small degree. I don’t ever claim to know it all, and there is much I can use from this. But I think it’s helped me the most  to see that it’s ok to make adjustments through the day, every day. I was constantly striving for that magic basal/bolus/correction factor and actually I can now stop stressing about that and go with the flow more – use the pump + CGM to it’s fullest and not feel I’m failing. Or at least not beat myself up about adjusting things. So that has been priceless. Thank you Dr P.

I used to think I was fire-fighting, I was actually Sugar Surfing.

JDRF – Research Update

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Yesterday (23rd May 2015), I attended a JDRF Discovery day with Dr Stephen Ponder talking about Sugar Surfing. I will be posting about what he said in the next few days, but before Dr Ponder spoke, JDRF gave an update on their research and I wanted to share that with you all. They didn’t talk about all aspects of research as time was short, but there was some interesting stuff they did say.

All of their research updates are available on their website – but it was handy to have it presented in an easily digestible format. I am an avid supporter of JDRF. They were there for me and my husband when Alex was diagnosed aged 11 months. They are the only charity dedicated solely to Type 1 Diabetes.

JDRF research update :

They have 546 projects in 17 countries and have spent 1.5 billion Euros in total so far (not sure if this is just JDRF UK or all JDRFs worldwide).

Artificial Pancreas (AP) update:

  • They have a portfolio of potential APs, they don’t put all their eggs in one basket and they make their different scientists talk to each other to make results quicker.
  • Overnight AP trials have been very successful
  • April last year 16 young people used the AP unsupervised for three weeks
  • Spent more time in target range 64% of the time percent vs 48% previously and with no additional risk of hypos
  • Three month trials is happening right now and appears to be going well

 Smart insulin Update

  • Large amount of insulin injected but does nothing until glucose comes along
  • First clinical trials have just started on this
  • There are several smart insulin trials that JDRF are funding using different methods
  • Also another 5 projects they are funding for Smart insulin

Encapsulation 

  • This is Implantable insulin producing cells that are kept  safe from the immune system
  • A more permanent alternative to islet transplants
  • Encapsulated beta cells are protected from the immune system because a Type 1’s immune system will attack the Islet cells again (eventually).
  • Some clinical trials on animals
  • Five people have also had implants at safety trials. Safety trials are first stage trials and are simply to see if it’s safe to continue.

Stem cells

  • A big step forward has been able to grow beta cells from stem cells in volume.
  • This will help with research so that they can be used in labs because there are  not many islets available and they usually go to people who need islet transplant.

 

CGM insertion – how I do it and deal with the skin irritation issue.

CGM’s Continuous Glucose Monitors (sensors) are a bit of a dark art at times. I’ve been using them since Alex was diagnosed aged 11 months when we had the Medtronic Sof-Sensors. There was nothing “Sof” about them. The needle was huge, they were problematic to say the least and I struggled to get them to work properly. I think some of this was due to him being a baby as I’ve seen this other with babies

I persevered however, and when a few years ago Medtronic released Enlite sensors, I was much more pleased with the accuracy and insertion.

After nearly 5 years, I have got insertion of sensors down to a fine art now and I have described what I do below. I’m not telling you how you should insert sensors, I’m just explaining what works for us. Maybe some of what I do well help.

Generally though, I have found the biggest problem with sensors is dealing with sensitive skin issues. And judging by the comments on different forums many people have the same issue.

This is all the kit I use to insert the Enlite:

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1. I use Emla skin numbing cream for at least an hour before insertion. This ensures a pain free experience for Alex. Put a blog of the cream onto a Tegaderm type sticky then place onto site where insertion will happen. After approx 1 hour, wipe off the cream, then wash the area with soap and water. I have used alcohol wipes in the past, but these irritate Alex’s skin.

2. I take a Tough Pad plaster (I import these from USA as Alex’s skin reacts very badly to the UK equivalent brands). I use a single hole punch to punch hole in the plaster.

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The location of the hole is important as the whole CGM and transmitter needs to sit on top of it.

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3. Place the Tough Pad onto the skin so that the hole is where the Emla cream has numbed the skin.

4. Manually insert the Enlite through the hole on the tough pad get this:

This is a video I did a few years ago about how you do it manually: https://www.youtube.com/watch?v=BjAXZXri5Lo

 

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The tough pad looks quite yellow in this photo.

4. Then attach the transmitter, put another Tegaderm-type sticky over the top and voila:

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This will usually stay put for at least 6 days. If you have any questions, please ask!

 

Things not to say to a parent of Type 1 diabetic child Part 1: There is a cure for diabetes

A few weeks ago a friend’s daughter was diagnosed with Type 1 Diabetes. She is 7. I knew what a crap time they would be going through and supported them as much as I could. They are coping brilliantly. It’s a tough time, a vulnerable time and a time when any parent strong or weak needs support.

So when I visited them last week, the little girl whispered in her mummy’s ear to ask me something….her mummy told me that they had been told by two separate people that there was a cure for her diabetes and what did I know about it. One had spoken to her, another emailed her links. The mother was going to check out the links even though I said no – there was no cure.

The little girl, who is struggling with the fact she faces a lifetime of injections and finger pricks that hurt, clearly saw a glimmer of hope…..but these well-meaning people have been incredibly cruel because I had to quosh her hopeful expectation and tell her they were wrong. As we all know, there is no cure for Type 1 diabetes.

So why would these people tell them there was a cure? Ignorance? Yes. Stupidity? Maybe. I know that these people were well-meaning. But it still hurts when you have to tell your child there is no cure. And one of the reasons why I really wish Type 1 diabetes was renamed.

Then the other night on Facebook a friend’s post about how her sons BG levels were playing up on holiday ended up with yet again a well-meaning but totally ignorant person posting that some Doctor had found a cure and it could help our children with diabetes. Why don’t we get off our arses and google it. What did we have to lose? This guy had researched specialist diets and natural care for years and the medical world was trying to suppress all sorts of cures for all sorts of diseases. If only we could check out the guy.

Needless to say, he was put in his place by more than one parent. But what worried me the most about his insistence we check out the cure was his total belief that there was a cure. How do you counter that? How do you tell people that just because you decide to follow conventional medicine – something scorned on by so many these days – that you are not denying your child a cure BECAUSE THERE IS NOT A CURE FOR TYPE 1 DIABETES whatever anyone says.

How do you deal with someone who doesn’t listen to you? And the problem is most people aren’t trying to be mean or nasty, they genuinely want to help.

If these people who tell us there is a cure could walk in our shoes for just 24 hours and see the amount of hard work it is, how our kids are total legends for putting up with finger pricks, with injections, with high and low BG’s, the annoyance, the lack of sleep, then they would realise why it makes us so angry when someone comes along and tells us there is a cure.

Because there is no cure for Type 1 Diabetes.

Yet.

So just in case you are reading this and you are not a parent of a Type 1 diabetic child please don’t ever ever ever tell them there is a cure. Trust me on this one, they will be the ones to tell you about the cure when it arrives because we are all avidly awaiting it.

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The proof is in the pudding: 640G CGM data

It’s been nearly a month since my 5 year old son swapped from a Medtronic VEO (540G) pump to the new 640G. Me and Fatherbetic decided to have a look at some of the CGM data from the last couple of weeks and compare it to the VEO/540G data from a few weeks before.  To say we were stunned is an understatement….a picture paints a 1000 words:

Note: My son’s HbA1c was 6.5% (48) a few weeks before, I did not change any insulin settings when swapping to the new pump – all basals, bolus ratios and correction factors are the same and lifestyle and diet is the same too.

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Data from 17th-23rd Jan 2015 using VEO/540G and Enlite Sensors

Data from 3rd-9th March 2015 using 640G + Enlite Sensors.

To say the 640G has improved things is an understatement! Control is much tighter, less wild and overall completely awesome. I thought I was doing a pretty good job with the VEO, and with a very good HbA1c for a 5 year old I didn’t think things could improve so much. I have other graphs from the VEO days that look even worse than the one above.

Why the tighter control? I think it’s two things:

1) Smartguard is stopping a lot of hypos and the rebound high that occurs when you treat it. It seems to be suspending the basal just enough to stop the hypo but not too much to cause a rebound high.

2) The new predict high alarm on the pump is letting me know if BG is getting too high and I can react quicker.

So it’s a combination of both but I would say mainly Smartguard.

Thank you thank you Medtronic and the team behind the 640G the pump is awesome because it’s life-changing.