T1 Transparency

 

In attempt to remain transparent with my sons diabetes management and offer support to Type 1’s and parents of Type 1’s that it is possible to better control blood sugars and for them to live a long, healthy, complication free life. I regularly share my sons entire profile off his Dexcom. It is far from perfect, but we are in a place where he is consistently lowering his HbA1c (currently at 5), and in the non-diabetic range for his blood sugars, although he will always be Type 1 Diabetic – this is not a cure – it’s a management solution.

I’ve hit a bit of negativity online lately with friends and strangers (painful). I have seen some horrendous posts on T1 groups from parents whose kids are sat with a blood sugar of 24mmol eating cake and Chinese take-away, babies sleeping at 11mmol because ‘parents need sleep’.. I see people reach out for help and because the ones who have poor control with no education, knowledge to support their actions and who just can’t quit sugar, because those people who shout loudest or are faster and more aggressive than the ones with real, solid, credible knowledge to share, so people listen and it’s all kinds of wrong!

I know diabetes is hard BUT there are easier ways to manage it. So, instead of posting trying to help people individually anymore, AND because I haven’t got time or the aggression to battle with mums who believe their kids need Haribo and who need Cupcakes or who think it’s ok to run their kids high in the night just to get some shut eye.. I haven’t got time or patience, so I thought I’d share here and then anyone can read (or not) if and when they want.

I also have to say right here that I am very compassionate and empathetic. Probably too kind for my own good. BUT I am not fluffy and sweet when it comes to Diabetes! It is a KILLER disease, it shows no mercy and if it’s in your life – you need to take it by the balls and DO SOMETHING!!

I will tell you straight and if the truth hurts, Man UP, Buckle UP and look alive ‘cos you’re in this – for life!!! And I’m guessing that you want that life to be as long, safe, happy and as healthy as the next person?

So, WHY should diabetes change your life expectancy? WHY should you just roll over and accept massive, painful, fatal complications for you or your child?

What educated person would do that?

Buckle UP!!

Read…
As I always say, I will be fully transparent with my sons diabetes management. I have nothing to hide, I do nothing wrong and I will answer any and whoever’s questions. I will also not change based on someone’s heresay, outdated medical advice, damaging medical advise or the fact that someone behind a desk believes I will emotionally damage my son by not letting him eat chocolate and donuts with his school friends. No child needs that anyway…

I will also share his data here freely, not to show off or compete with people or to intimidate people which I know it can be viewed that way, but to inspire people and show them real life experiences and that better times can be found (I didn’t know they existed 10 months ago). My son has NO competition:  HE has no competition WHATSOEVER. It is NOT a competition!!

His aim is not to have better blood sugars than you or your child. And the people who see it that way infuriate me. Why be so defensive about a child? To someone who is trying to help you? Do the decent thing: Read, make an informed decision based on evidence, literature and what works best for you family, and maintain your dignity and integrity whilst doing it…

So, we share Carter’s data to help people, to support people, guide them and so hopefully someone, somewhere may learn something (if they so wish). It isn’t to show off or get high fives and pats on the back. It’s to be healthy and share our knowledge with whoever needs it – because that’s the whole point?.

When Carter was diagnosed I didn’t know we didn’t have to not eat carbs, I thought we needed them – to survive! I found out there was another way on social media. I simply googled how to prevent diabetic complications and to lower my sons A1c (I lost my mum to diabetes, I was shitting myself that I would loose my son too. The hospital said his A1c was good at 6, I feared it wasn’t – I was right). I found Dr Bernstein and I located TypeoneGrit community group and was opened up to a whole new world that NOONE, not 1 medical professional had even hinted at it’s existence.. I was bloody glad I found it and so is my son!

I bought Dr Bernsteins book and learnt everything I could, which led me to some other youtube video’s that were shared in an online community of T1’s who follow Dr Bernsteins methods also

Out of interest, here’s the video I found that fully helped me get my husband on board with Low Carb. After watching it we were both moved to tears – it is powerful: https://www.youtube.com/watch?feature=youtu.be&v=iLg4vBGpLM0&app=desktop

Did you watch it? Justin and Julie’s analogy about the little orange dots really got to me. I wanted MY boy to be a little orange dot – and now he is!!

Also there’s my friend Lisa’s video too: https://www.youtube.com/watch?v=RtiduHZdbUg

And Dr Troy Stapleton is Legendary in our LC T1 World: https://www.youtube.com/watch?v=hxs63lOOH0U

FINALLY but not LEAST! Here is Dr Ian Lake a fellow Type 1 Diabetic and UK GP Dr who talks about Low Carb and advocates HIGHLY for our way of life, I have made contact with him and he is very inspiring and knowledgeable, I really hope he can help this gain momentum in the UK with our support: https://www.youtube.com/watch?v=vWmxxbs_mns

I hope these video’s are useful and people take time to watch them, they are HIGHLY inspirational and completely changed our lives. I will leave them here so please share / come back whenever you need to refresh..

So, back to it.. Carters aim and his only competition is his own body and his own health – a long healthy life, free from diabetic complications! AND (good news) It is Possible!
I share these things because I want people to understand that whilst we appear to be winning, that Diabetes is ALWAYS there, it’s very hard, dangerous and always lurking to teach you who’s boss. It’s a 24/7 demanding, draining job.. And, we all have our ups and downs. I won’t hide from them or float over them like they don’t happen and my son always has perfect blood sugars. That would be untruthful, unethical and just bloody stupid!! It would also be cruel. I see people do it all the time, they only ever share perfection and boy does it make you feel like shit. Like you’re doing everything wrong cos they have it perfected and easy and you’re over here fighting for a reading below 4.6mmol! Insane – cruel! Those people will never show you a bad day.. You’ll never learn from them and after them initially inspiring you, you’ll think they’re a dick and move on to someone who will be transparent and help you, guide you and support you when you hit tough times. For they too, know, that is what diabetes is. It isn’t a perfect line, it’s hard work and it takes A LOT of commitment and work -BUT, it CAN be done!

We had a bad night a few weeks ago (I will cover this in more detail in a future blog later in the week). Carter woke himself up feeling VERY hypo and unaware, he was having a bad dream where he was being squashed and in his sleep he downed half a tube of glucose tablets – woosh!!! Up went his blood sugars (that weren’t even low – he was dreaming). He didn’t need the glucose but something told him to take it and so he did and as you know from my ‘hypo’ blog, he has glucose available at the side of his bed for life-saving situations and he knows exactly what to do.. What he did was right (if he was hypo) and I absolutely would want him to do it again.. BUT, he didn’t realise what he’d done until he woke up actually swallowing them (which he didn’t need to do at that time – he wasn’t low) and then he was all kinds of upset, scared, sick and SHOUTING for help!!!
We chased his rise (it was a big one), then we bottomed him at the other end.

It was a long a difficult night!

We didn’t know how much glucose he’d taken (probably about 80g carbs), and how much insulin would bring him down, so we gave him 2 units at 1 hourly intervals in attempt to not crash him too hard.

The insulin takes 30mins to activate fully and usually (for carter) if it hasn’t had an effect in the first 1hr, it won’t have an effect. BUT, this did and it had stacked in him which caused major issues at the bottom end (early morning) and he required emergency glucose gel to bypass his digestive system and hit the spot where it was needed..

 

He felt shocking and slept for a long time afterwards, when he woke in the early afternoon (obviously I was checking him every 30 mins and fingerpricking every 30mins and then 1hrly), he was fine and felt fine too – PHEW!!

What does this mean? Is it OK?
Consequently (as per Dr Bernstein’s evidence base what we’d researched – he talks here about hyperglycaemia highlighting the beta cells to the immune system) bare in mind, Carter NEVER see’s blood glucose readings above 5.8mmol usually, very VERY rarely above 6mmol…. So, what had happened? Well, by taking the glucose and shooting up so high, he’d highlighted the remaining (precious) beta cells that he has functioning (that we usually keep camouflaged with such good glycaemic control), we highlighted – lit them up like a lightbulb for the immune system to attack!! AND attack they DID!!!
So, for the last few weeks he’s been battling a bit of insulin resistance too, hence, an increase in basal rates. He’ll get his control back, but for now, the extra basal insulin is helping…
AND he’s growing again (he barely stops growing), so the Levemir he takes (long lasting insulin), is now back to a 3 way (8hr) split and although we need to tweak the 1am dose (I’m always apprehensive of giving too much too soon), he’s doing better.
So, here’s his 30 day profile, his 14 day, 7 day and then the odd day from the last week.
I want to share them because I want people to understand that although Type 1 diabetes is not easy (and trust me, it is far from easy), it can be easier – and safer than what you’re dealing with right now!!

30 days:059

See the HUGE spike? WOW!! (BUT BECAUSE HE HAS SUCH GOOD CONTROL, THE DAMAGE SHOULD BE MINIMAL, IT’S STILL HIDDEN AMONGST A MONTH OF VERY GOOD CONTROL AND A DECENT MEAN AVERAGE (THE SD IS JUST A BIT WONKY AND HUGE)!!

14 days: 060

14 days with still not an overly bad average but a cracking percentage of high’s and some additional highs from activity that he doesn’t usually experience AS HIGH.. But, still – recovering! His beta cells are struggling here, the little function they had is compromised and they aren’t working as well as they (weakly and damaged) did. He is still T1 Diabetic remember, they work nothing like mine or yours, but with insulin and good control EVERY T1, can produce some insulin, honeymoon can be prolonged and even restored. People don’t think it can because they never get good enough control to prove us wrong, so they think they are right. We are RIGHT!

061

7 Days (above), as you can see, the numbers are higher – creeping up again (the average high’s sneaking up too and the mean average higher than we want) as the growth spurt kicks in so does the hormones but I hadn’t increased the insulin enough = poorer control.. So, we up the basal to cover the hormones and maintain the control that he deserves!

Day by Day:

As you can see here, these are full 24hr profiles of his blood glucose readings from the Dexcom, it’s been playing up a little, loosing connection and running out of sync per his meter readings off the finger pricks BUT, it’s currently on his right arm and he favours that arm to sleep on. So, at night, he rolls over onto it and BAM – hypo alert, simply from pressure. We have to go and roll him back over and confirm with a finger prick that the Dex is indeed singing us a song.. Thanks Dex 🙂
A bad day for us still far beats the good days from before we found Dr Bernstein and stopped eating carbohydrates. The hypo’s aren’t really hypo’s and the highs are small shunts from where the Insulin either didn’t work for long enough OR activity.
Activity is massive! My son can spike fast from adrenaline doing trampoline class or playing football. But, it’s a different kind of spike, it isn’t because he ate sugar or glucose / carbs. His body no longer needs that to sustain itself for activity because he burns Ketones (remember, Ketones are GOOD). It’s adrenaline and hormone release from activity so if we attempt to treat them then we will crash him because he’s already dropping down before he’s even finished spiking high.

You can identify spikes on his daily graphs clearly, they’re fast and high and then they come down equally as fast.. We don’t treat them with insulin because he doesn’t technically need it, he didn’t eat, it’s just his body throwing out hormones.

Imagine an adrenaline rush – when we get an adrenaline rush our body dumps hormones in our system so we can use the fight or flight response. Carters still does this too (his adrenal glands are functional just like mine or yours and it’s the adrenal glands that release adrenaline – fight or flight hormone) but what Carters and other T1’s pancreas doesn’t have is the ability to mirror that dump with insulin (like ours does), the beta cells can’t throw out enough insulin to meet the huge dump of hormones the adrenal glands actioned, hence the spike. So it’s not sugar being thrown into his system from eating cake, it’s a natural adrenaline response. His body recovers, but slower than ours. I watch and see it happening, OR if after a good amount of time I notice that it isn’t; I will administer a small amount of insulin to help the beta cells along – sometimes then he will drop low, but that’s the gamble and art of diabetes management – I will never be as good as a functioning pancreas no matter how hard I try – what fun!
Dr Bernstein recommends some beta blocker medication ‘propranalol‘ that he prescribes for his patients which can overcome this rush and subsequent BG rise. BUT in the UK, we can’t even get regular insulin so I haven’t even attempted to fry our Dr’s mind with requesting this, seriously, they just don’t get it!! But we’re ok – for now…
Can you see though? Just how much easier life can be, safer for your child. Yes it takes work, yes you have to take away their Haribo or their Macdonalnds but to what gain? Good health and longevity?!
It’s a no brainer!!

Do what most educated, caring parents would do and learn, LEARN EVERYTHING about this! Critique me, prove me wrong! Question me! Question your Dr, QUESTION EVERYONE AND EVERYTHING!! PLEASE!!!

LEARN about how to do the best for your child.. ‘for when you know what is the best thing to do, and you don’t do it. You aren’t really doing the best for your child’ … And we all want to do the best for our children, after all, that’s all we can ever do?.
Ok, it’s not for everyone, I can see some people rolling their eyes now, I really can. I’ve had enough controversy and negativity on social media since advocating for low carb than I ever thought possible. I’ve been told I’m cruel for suggesting teenagers don’t eat pizza and chips with their mates, for taking cupcakes off 3yr olds and for suggesting (god forbid) parents have to get up in the night to give insulin to treat their kids when their blood sugars are too high.. Some people can never break their addiction to sugar or sleep but it’s easy to learn to hate something that threatens to steal the health and life of the person most precious to you in the world..
Just dip your toes in.. LEARN!!!
And most of all, be healthy.

I hope this will help someone, I also share this information because if people before me hadn’t, I’d have never known and we’d still be feeding my boy sometimes in excess of 30-50g carbs (per hospital dietician recommendations) per meal, on a total, uncontrollable and painfully frightening blood sugar rollercoaster and a Road straight to complication city with a shorter life expectancy – unthinkable.. HEARTBREAKING!!

You can find help by purchasing Dr Bernsteins Book ‘Diabetes Solutions’ I have a tab on my blog ^ dedicated to him. You can also search Dr Bernstein on Youtube AND find TypeoneGrit on facebook OR for our UK T1’s we have our own smaller group ‘Low Carb Type1 Diabetics UK’ join us for tons of support and guidance…

Do your research…

Take your life back…

Rose ❤

(stepping down off the horse now)…

 

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5 thoughts on “T1 Transparency

  1. Hi Rose!
    Haven’t read the book yet (I will, promise), so I wonder – why are you aming for A1C lower than of a standard healthy person’s (5,1-5,4%). I just checked mine (no diabetes) and got 5,3. My son’s (10 yo) is 5,7% – would be nice to go down a notch but why lower than 5%?
    Good luck to us all!

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    • Hi Gie.
      Thank you for your message.
      I would highly recommend Dr Bernstein’s book. In it he explains how you can gain control of your blood glucose levels consequently lowering your A1c by reducing carbohydrate intake and tweaking insulin management (he gives great advice for insulin management techniques). Also he explaines the importance of a ‘normal non diabetic’ A1c. My older son’s (non T1) A1c is around 4.6 so my T1 should be the same, or as close as we can get.
      The complications come on hard and fast the higher the A1c, even an A1c of 5.5-5.8 over 20 years shows retinopathy, and nephropathy development, with blood vessels all over the body being affected from prolonged high glucose levels.
      Dr Bernstein uses the chart I have included for A1c guidance and we have many, many children and adults in our community who regularly achieve 4.4-4.7 A1c’s and have maintained this for years. My son is still on his way down, we only found Dr Bernstein in September last year and his A1c was 6. Since then it has reduced: 5.4, 5.2 and now 5 so we are aiming for his next to be in the 4’s which is considered significantly safer and at much less risk of developing complications over the years.
      The 4’s are truly non-diabetic numbers.
      Also; if a non diabetic threw out an A1c closer to 5.5 I’d suggest they are already insulin resistant and be checking for diabetes anyway with a view to them being already pre-diabetic?..
      Have a look at the link and enjoy learning from the book (it is extremely helpful).
      If I can help any further, please let me know.
      http://www.rajeun.net/HbA1c_glucose.html

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  2. I have Dr Bs book and have glanced at it and have significantly reduced our carb intact as a family. Not perfect but better. I wonder how I might find a Endo that agrees or who supports LC diet for my T1 son. Do you have a link per state? Dx 2 years ago at age 8, my son’s A1C has gone up since starting the pod and
    Dex. It was 8 which I’m striving for 6 at his next appt and then lower again. My A1C was 5.8 so I’m trying to lower mine as well. I know our current Endo is not on board by their comment that teens can eat up to 100 carbs at a meal because they are growing!!!

    Liked by 1 person

    • Hello. I am not in the US so am afraid I can’t guide you with that. We live in the UK.
      You could try posting your question in our Social Media page on Facebook ‘typeonegrit’.. Lots of US T1’s on there would be able to help I am sure..
      Good Luck x

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  3. Thank you for your reply, Rose! 4,4-4,7% is news to me – here we have 5,1-5,4% as a standard for adults. And I asked around and have 3 different tests confirming it. Maybe kids have lower norms then? Or maybe you tested your other kids from a finger not vein? Finger tests tend to show lower results…
    I found an interesting research: http://circoutcomes.ahajournals.org/content/3/6/661. A graph there shows that best it is to keep it between 4,5 and 5,4% Having it less has even bigger hazard ratio than slightly more. So 4,5-5,4 should be the safest range. Let’s stick to it 🙂

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