Hey everyone..hats off to you all!

[Kazz86]

Hello everyone

firstly, you’re all amazing! Diabetes can be such a challenge at times..but good days way outweigh the bad.
My son was diagnosed with DM1 in June this year. We have a strong family hx of DM1, so luckily I spotted the signs when my son was becoming unwell.
i found we had lots of support initially then this dropped off...when actually the honeymoon phase (just after diagnosis and pancreas still working a little)was the easier bit...We would benefit from more support now rather than the early days!

Anywayyy, Hello and I’m so happy to be part of the forums.

best wishes

Karen

 

[Ljc]

hello @Kazz86 , Welcome to the forum. I am sorry to hear that you are not receiving the support you need atm . I have T2 myself so I won’t be of much help however we have many very knowledgeable on here here so ask all the questions you need to about diabetes.

A little more info will help people here give you t.he most appropriate advise.
What insulin’s is you done on.
Is he on a pump or injections.

 

[Kazz86]

Hi Ljc,

Thank you and you and lovely to see you’ve got your HbA1c to a good level.. 🙂 not the
easiest.

He has MDI - 4 a day. 3 fast acting doses with meals- NOVORAPID. We are carb counting. Then 1 long acting LEVEMIR 1.5 UNITS at night (before bed).

We follow the low GI guidance. He has been running really quite high since July. When I initially asked for help with this from the diabetic team I was unfortunately told as it was the summer holidays this is the reason he is high!! I then asked for advice when he was back at school and was informed I needed to wait before adjusting his ratios around 2 weeks. Also that diabetes is variable and they don’t strive for perfection! (well I know that). I haven’t found the advice and support the most helpful.

He has been having symptoms of high ketones- tummy ache, wetting the bed. They didn’t change his ratio and levemir dose until we saw the consultant at the end of Sept. They have been lowered each week since. He is still quite high. His ketones yesterday went to 0.9.

We use the libre with Miao Miao. I prefer the G6 but couldn’t get funding for this as they say Joseph’s hypos aren’t severe enough . He has absolutely no hypo awareness it’s scary! Although he’s been so high lately there have been no hypos really

He is a really happy and wonderful little lad. I hate seeing his levels run so high- I really feel I’m letting him down.

I wonder if I should request a HbA1c.

No pump, we have been told to wait until we see the consultant next time as they ‘think’ a new one is coming out in a months time.

I like the omnipod but the diabetic team didn’t seem to want to give Joseph this.

anyway.... thank you and I hope you are all doing ok.

thank you all

Karen

 

[Inka]

Hi @Kazz86 🙂

How old is your son? Sorry he’s having problems. I’ll tag some parents for you as they’ll have more tailored advice @Thebearcametoo @stephknits @Bronco Billy

My advice is to ‘become your own expert’. That’s the most important lesson I’ve learnt about Type 1 - learn as much as you can and sort things yourself as much as possible. This might not be appropriate for your son as he’s newly diagnosed, but I’ve found you have to really push and advocate for yourself.

If you can give us an idea of his blood sugars over an average day, that would help, but the basic rule is to get the basal dose right first, and then sort out the meal-time ratios (how much insulin to carbs, and be aware it could be different for each meal eg breakfast).

Levemir is usually given as a twice daily dose (because it gives better cover and more flexibility) so that might be an issue.

Yes, pumps are great, but keep an open mind about which one you want and be aware most areas only have a list of a few you can have so you have to pick from that list. My area has stopped doing the Omnipod too but has plenty of great pumps available.

 

[everydayupsanddowns]

Welcome to the forum @Kazz86

Sorry to hear about your lad

I’m slightly confused about some of the parts of your post - and it seems that your clinic are more worried about the hypos he has experienced than the highs that are worrying you.

It must be very difficult for you, especially as the time is just ticking by and appointments are delayed and spaced far apart (I’m sure Covid isn’t helping).

It does sound like you have ended up with a slightly unusual split for his basal and bolus. Generally in adults this would be expected to be around 50:50 (somewhere between 60:40 and 40:60) but it sounds like he is having very low basal dose, which in turn can mean that meal doses are ‘propping up’ the basal shortfall, so they run short on the carbs they were meant to cover.

It sounds like one of the hybrid closed loop pumps (eg the MM780G which is due to launch soon, or the Tandem tSlim which works with the G6) would really benefit your son. These link with sensors and have good evidence that they reduce hypos and help increase ‘time in range’. They aren’t fully automatic, and you need to keep them carefully supplied with the right information, but they can really help to ‘take the edges off’ of glucose variation. Omnipod doesn’t currently have an option that links with sensors.

I would recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes.

Good luck and keep us posted.

 

[Thebearcametoo]

Hi, I’m sorry you’re having troubles. How old is he and where abouts are you? Our team have been good from the beginning with support and helping us out but I do think that the tolerance for being highish is normal (although not with ketones - but if ketones are still lowish then it’s not a concern and 0.9 is very treatable at home) so at this stage it may be about getting data and seeing how he reacts to different things as much as anything else. If he was diagnosed in June haven’t you had an HBA1C since then? It should be every 3 months so I would have expected your September clinic to have one - sometimes they forget to tell you though.

You may find that things are slow with the NHS. Pump funding often takes a while (even though funding for under 12s is pretty much guaranteed). Which pumps you might be offered vary - locally they’re not offering omnipod for new users. Here (Oxfordshire) if you want a pump you express interest then go to the info session held quarterly then confirm with your consultant at the next clinic who starts the funding application and so on... Some children have had them much quicker than that in different areas though so it will vary.

I would urge patience. But I know that’s not easy. Do keep nagging at your team and if necessary you can transfer to a different team in your area or to a different area but it’s still early days. The first few months are a lot about data and not about tight control.

When you say he’s high a lot how high? Our team are happy with periods of an average of 10-12 and the odd 14-16 and we still get a decent HBA1C (some months we seem to hardly be in target at all). And how much Novorapid roughly does he have with each meal? We have a roughly 50:50 split over 24 hours between bolus and basal. Also how low GI/carb are you going? If you’re very low carb that can skew figures as lots of fat/protein may also need some bolus. We found with my daughter (diagnosed just before she was 9) that between 50-70 carbs per meal was a good balance for her and we include some sweets, cake etc into that just control the portions.

 

[SB2015]

Welcome to the forum @Kazz86 . Sorry to hear about the difficulties that you are having at present.
They are right that there is no perfection with this, but it would be good if they were able to give you more help with getting your son’s levels lower.

As @everydayupsanddowns has said it does look like the basal insulin may need adjusting. I know I was surprised after diagnosis at just how often I needed to make alterations to this, with the changes in the weather as well as in levels of activity.

I also remember at a DUK event a DSN emphasising the importance of team work in managing our D. He suggested that if you do not get the support that you feel you need to ask to see another DSN. As he pointed out different people shut different people. It might be worth asking for a change, but I do realise that in the current climate this may not be so easy.

 

[Ditto]

Hello and welcome @Kazz86 🙂

 

[Kazz86]

Hello everyone

Wow!

Thank you for taking the time to pass on all that information. Already you have me thinking about different things.

I have the Ragnas Hanas book so will keep ploughing through it. You’re right it does help.

So he’s 5.
his ratios are-

Breakfast 1:12
Lunch 1:20
Dinner 1:24

I have changed his breakfast one to 1:12 today. The diabetes team got back to me and suggested we also increase his levemir to 2 units. And send more data in one week to consider changing his dinner ratio.

No we have only had one HbA1c since he was diagnosed and that was 64 in June.

He regularly goes up high and has the physical symptoms from it too. I can try and send some pics of his libre reports.

I follow a be aware of sugars GI diet for him...so I check the sugars in the carbs etc and make sure they are not almost matching the amount of carb... I have various cookbooks and make him lots of stuff. I found a nice one called I quit sugar..it has lovely snacks and things in there.

I’ll look into those pumps so I have a better understanding when the day comes that he’s offered one.

thank you all again. This has really helped.

 

[Thebearcametoo]

Are you fingerpricking when the Libre is high - they tend to be less accurate the more out of target they are

I’m glad the team are suggesting changes. It’s hard in the early months as so much of it is about data collection (they know the general principles of what insulin needs someone of his age and size may have but everyone is unique)

 

[Kazz86]

Hey @Thebearcametoo
Yes too true. I’ll get the confidence soon to change it myself more often hopefully. We are off to a reasonably good start.

Yes to blood tests and ketone checks.
Thank you

 

[trophywench]

Any number of those 'I quit sugar' recipes are absolutely crammed with carbohydrate though, one for something chocolatey contained no sugar it's true - instead it had corn maltose. (also had buckwheat and some other flour rather than ordinary wheat flour, so presumably OK for celiacs but we're not talking about celiac disease) I rest my case.

 

[Kazz86]

Any number of those 'I quit sugar' recipes are absolutely crammed with carbohydrate though, one for something chocolatey contained no sugar it's true - instead it had corn maltose. (also had buckwheat and some other flour rather than ordinary wheat flour, so presumably OK for celiacs but we're not talking about celiac disease) I rest my case.

Hey
Yes I’m sure they are. I’ve attached the one I have. It’s actually not that bad for kids. I just use the ones that aren’t that high in carbs.
what cookbooks do you use that are good?
Cheers
Karen

 

[silentsquirrel]

I remember Davina McCall had a sugar-free book out a while back - no sugar, just honey,and maple syrup used instead! Sugar, sugar, sugar!

 

[trophywench]

Snacks to me don't need recipe books, especially for little kids.

Raw carrot or courgette or any veg practically sticks, pieces of celery sticks with Philly cheese (comes in squeezy tubes, plain or various flavours) squeezed along the groove, oven baked home made crisps, cut (use a mandolin) mega thin slices of eg baby beetroot, or even 'new' potato cos the idea is to make em small and only have a few, lay on swiss roll tin/baking sheet sprayed with teeny bit of eg spray rapeseed oil, make mini muffins (sweet or savoury) in petit four cases using ground almonds instead of flour, a quarter to a third but no more! of the amount of sugar you'd need but of granulated sweetener instead of sugar, moisture and fat replaced by a dollop of Greek yoghurt, and baking powder to make them rise in the oven, always choose small fruits so apples get Cox's, halve one, core. Slice half of the half into shedloads of slices - you eat the whole half and little one eats the sliced half. Can do the same with small pears, or the odd plum. Chop up 'hard' cheese into small cubes, intersperse with quartered cherry tomatoes.

 

[Kazz86]

Awww they do when your brother has a little treat here and there life isn’t always that easy hey! It’s nice to mix things up.

Thanks for the tips I give him all that too as that’s easy to make stuff x my go to!

 

[Inka]

There are other reasons to want to reduce sugar apart from diabetes. I have an old sugar-free cookbook with some good recipes. It uses things like carrots and courgettes in cake, as well as small amounts of dried fruit.

(Anyone remember Pure, White and Deadly?)

@Kazz86 I use ordinary cookbooks and adjust the recipes by reducing the sugar eg in a cheesecake, I’d taste the cheese mix and just add enough sugar not dollop in the tablespoons listed in the recipe. With a Victoria Sponge cake, you can reduce the sugar too and still get good results. Things like Apple Crumble are easy to make with reduced sugar too. There are also lower sugar biscuits you can make.

Carbs shouldn’t be demonised for any Type 1 and particularly not for children IMO.