Sigh, dietitian

[Owen]

Owen, It was only because Shivles bought the Bernstein book that I put up the Bernstein video. His point is to have normal BG levels, something I think we can all agree on.
Also Bernstein isn't LCHF ketogenic.

Given that the respected Joslin diabetic clinic recommended 30-45% carb, I'm quite comfortable saying the same. I think the problem lays with misinformed NHS dietitians

I think it was the lack of insulin that ended the lives, The very LCHF ketogenic diet was to extend life.
the pre-insulin diet
http://www.icsarchive.org/paperback/cookbooks/diabetic_cookery_1917.pdf
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Please don't take this as a criticism, you're right to have posted the information, as stated I will defend anyone to stand their corner regardless of my own opinion. I do read your links and get the precis. I am still pontificating the deluge of opinions and information. I am just concerned that the importance of balancing the insulin therapy becomes obscured by the long term need to find the right balance of dietary need for this youngster. I trust that you agree that insulin in type ones is essential and paramount to get correct. Please please continue to be passionate about your cause and don't be offended if I or others ask polite questions. Higher level thinking leaves more questions than answers.

 

[bilbie]

It may be because I'm sensitive on lower than 75-100g for kids. I was hesitant to post Bernstein, because even though he isn't LCHF keto. Some still find his lower carb, if needed to obtain normal BG confronting. I previously posted a link the the T1 grit FB page that was seen as not helpful.

I'm much more relaxed talking about adults. Even though if I had a T1 kid, I wouldn't use my keto diet. I don't see the need for a T1 kid to be in ketosis, but it would be lower carb, higher proteins and fats. With what I currently think. I would have a pump and half basal dose with tresiba and half with the pump. The reason is that when just on a pump and a site fails, ketones and high BG happens so quickly. Half pump still leaves a lot of flexibility for basal rates and has a half dose long acting to minimise ketones and BG rise when site fails.
I may change my mind about pumps if anything comes from pumps causing long term problems with site damage, as opposed to injections.

 

[Northerner]

Try to stay open minded. I am still not convinced that fatty meats are a good thing. I try and get some oily fish two to three times a week. You can combine healthy fats to slow down glucose release from carbs. Your LO is type one, it is important to get the insulin at the right level, if you focus on diet whilst not doing this, then you are just going to run around on circles. I have not eaten processed foods for months now, this has been the biggest change for me. I try and have one carb free meal a day. Moderation and balance are important. Prior to insulin, diet controlled diabetes ended the lives of too many young people. Try to get patient and get as much information you can before committing to any specific approach. I knows it is hard to do this when you are compelled to protect your child. Remember this disease is long term and you are out of the danger zone, so now think of it as tweaking things slowly until you find the right balance.

I'm very much with @Owen on this. Whilst an 'unconventional' diet may be appropriate for an adult, I am not convinced that such an approach is the best thing for such a young child. It's important to find that balance - as well as you can manage - with insulin doses and timing of injections, carb counting and learning about all the other influential factors on a largely conventional diet. I do understand that it can be alarming to see double-figure numbers after eating, but a diet with a moderate carb content should be manageable on insulin - even more so if you can get her on a pump. You are very much in the early stages of building experience with her diabetes, so there will be lots of unexpected puzzles and 'learning exercises', but young children are very resilient and their bodies can deal with these things better than adults. Remember that we have many people here who were diagnosed as small children who now have decades of living complication-free, having been raised on varied diets and at times when knowledge and tools were far less sophisticated. Please, as @Owen says, persist at getting those insulin doses refined as best you can, because this will give her the greatest flexibility for the future as she grows. Also, I'd recommend seeking the advice of other parents on the Children with Diabetes Facebook Group so you can get a broader range of experiences to draw on 🙂

 

[Pumper_Sue]

They told me they was at hospital and never heard anymore about it so presume it was fine.

It varies by meal but typically between 20-40g

For such a small child that is a lot of carbs even as an 8 year old I was never allowed that amount per meal (40 carbs) try keeping to the lower end and dumping things like pasta and rice from her diet

 

[bilbie]

Whilst I agree that a LCHF ketogenic is unconventional and unwarranted for a normal T1 child/adolescent diabetic. I see nothing wrong with the 30-45% of Joslin diabetic clinic or even lower with Bernstine if needed. Both being nonketogenic.

I also note that some adult T1s have chosen a LCHF ketogenic diet for themselves, I don't have an opinion whether in or out of keto is better. Other than with keto the brain uses alternate ketones as fuel and you don't get a normal hypo symptom, so you need to be more vigilant with testing.
I would put BG and weight above both, you do what's needed to be done.
I think T2s are better in keto

 

[Shivles]

I am aware the insulin doses need perfecting but in the mean time it's hurting her, she's spending most of the day high and miserable, I can't just watch I need to try and help her however I can.

I just feel like no one is really helping me, no one else can see how bad she feels and so aren't that concerned with her levels. The team are quite happy to not talk to me for days at a time.

 

[bilbie]

for interest only..This appears to be the diet when insulin was first being used.
http://loraldiabetes.blogspot.com.au/2010/04/bantings-diet.html

"
"I have been sugar-free [urine test for sugar] for the last five days and getting about 1900 calories consisting of Pro 60 Fat 163 Ch 44."

Those numbers do work out close to 1900 calories. The percentages of calories from macronutriuents are approximately:

Protein 13%
Fat 78%
Carbohydrates 9%
"

 

[Northerner]

I am aware the insulin doses need perfecting but in the mean time it's hurting her, she's spending most of the day high and miserable, I can't just watch I need to try and help her however I can.

I just feel like no one is really helping me, no one else can see how bad she feels and so aren't that concerned with her levels. The team are quite happy to not talk to me for days at a time.

I am sorry, it must be so hard and I really do feel for you {{{HUGS}}} It's a shame your healthcare team aren't more proactive I forget - has a pump been suggested? I can understand that the high levels you are seeing are alarming, but things WILL improve and these fluctuations will not be causing lasting damage. I think my point about diet is that, especially in one so young, it is only one factor amongst many - growth spurts, excitement, high activity can all have as much, if not more, impact on levels, and it can take time to refine things to deal with, so you mustn't feel that you have to get everything right overnight. If she's high most of the day, might it be due to a lack of basal insulin?

Clearly, my experience is very different, but it took me months to 'crack' the bigger problems, and years to discover all the smaller things. I've always had a good HbA1c, but that was originally largely due to the fact that I was getting a lot of hypos which balanced the highs - now my levels are more consistent, so I know I am doing better even though my HbA1c is largely the same.

Do you know any other parents, or could your clinic put you in touch with some?

 

[Pumper_Sue]

I am aware the insulin doses need perfecting but in the mean time it's hurting her, she's spending most of the day high and miserable, I can't just watch I need to try and help her however I can.

I just feel like no one is really helping me, no one else can see how bad she feels and so aren't that concerned with her levels. The team are quite happy to not talk to me for days at a time.

We are trying to help but must admit I feel that what ever we suggest it thrown back at us to a certain extent.
Pump/CGM and lowering her carbs and the type of carbs will all help her no end. Keep her diet nice and simple then it's easier to sort out her levels IE stick to the same amount of carbs each day do not vary it until you have some stability.
If you are not happy with the team you are under then ask for a transfer elsewhere.

 

[Owen]

We are trying to help but must admit I feel that what ever we suggest it thrown back at us to a certain extent.
Pump/CGM and lowering her carbs and the type of carbs will all help her no end. Keep her diet nice and simple then it's easier to sort out her levels IE stick to the same amount of carbs each day do not vary it until you have some stability.
If you are not happy with the team you are under then ask for a transfer elsewhere.

I don't think anything is being thrown back. A parent desperate to see their child in less distress. The other parent that is also diabetic but needing different treatment. I really feel for you @Shivles. I promise that this will get better soon, maybe a temporary reduction in carbohydrate until the basal dose is sorted. The key to the solution is the basal dose. Once you regular fasting levels, then the diet and bolus will kick in and help further. Remember carbohydrate is in a lot of vegetables with good GL loading, carrot and Swede mash gets rid of the desire for mashed potatoes. Casseroles with diced vegetables give good taste and less reactive carbohydrate. Keep your chin up keep using us, hopefully we can collectively come up with some ideas.

 

[Shivles]

I'm not trying to throw things back at people I just need to do something and so far all the adjustments to doses aren't doing anything.

Dad has buried his head in the sand and isn't helping me in any way, I don't blame him but it kind of feels like I've been left in the thick of it by everyone. It feels like there's no sense of urgency from anyone because no one else can see how it's affecting her, I have to watch her go up and down all day and the mood changes that come with it. I dread feeding her because her levels will shoot up, it feels like feeding my baby poison. No one else has to try and comfort a toddler with a blood sugar over 14 who is dehydrated, lay on the floor just crying because she feels so bad.

 

[Owen]

Just to add to my reply. One thing I can promise, is that your children will be a source of worry, my twins refuse to be tested even though they are both at risk of also being Mody. They have frequent riding accidents. Party hard. Just dream up new ways of causing anxiety. Sophie is a vegetarian that does not like vegetables, so god knows how she alter her diet.

 

[Owen]

I'm not trying to throw things back at people I just need to do something and so far all the adjustments to doses aren't doing anything.

Dad has buried his head in the sand and isn't helping me in any way, I don't blame him but it kind of feels like I've been left in the thick of it by everyone. It feels like there's no sense of urgency from anyone because no one else can see how it's affecting her, I have to watch her go up and down all day and the mood changes that come with it. I dread feeding her because her levels will shoot up, it feels like feeding my baby poison. No one else has to try and comfort a toddler with a blood sugar over 14 who is dehydrated, lay on the floor just crying because she feels so bad.

I completely get where you are coming from. A short term reduction in carbohydrate will help you sort the basal dose. Then bring it back in gradually. I know this kill you to do this. But only test before meals whilst doing this, so that you do not start panicking about the post meal readings. Obviously test if you think he/she is getting low. Once you have these in range, then test before and after with the aim to get a rise of 2 to 3 mmol. If the meal stays in range keep it, if it does not change it.

Good luck

 

[Shivles]

I completely get where you are coming from. A short term reduction in carbohydrate will help you sort the basal dose. Then bring it back in gradually. I know this kill you to do this. But only test before meals whilst doing this, so that you do not start panicking about the post meal readings. Obviously test if you think he/she is getting low. Once you have these in range, then test before and after with the aim to get a rise of 2 to 3 mmol. If the meal stays in range keep it, if it does not change it.

Good luck

I don't know how to correct the basal, I'm doing what the DSN says but half the time they only change basal when I say I think it might be off :/

 

[Shivles]

High all night, give her correction plus food insulin and breakfast as usual, now she's at 2.3 😱 it feels totally out of control

 

[Owen]

What are their current fasting readings and how much long lasting insulin is being. Try to contact your DSN and get them on side, explain how upsetting this is and you really want to help your child to stop suffering. Don't be surprised if they seem less urgent than you expect. They will be more concerned with long term results than short term discomfort.

 

[Owen]

High all night, give her correction plus food insulin and breakfast as usual, now she's at 2.3 😱 it feels totally out of control

Don't give corrections, you will end up chasing the dragon. Only give covering insulin calculated against carbohydrate. You will still not truly their correct ratio. This can be tuned once the basal is fixed

 

[bilbie]

and of course give glucose for the low

 

[Shivles]

What are their current fasting readings and how much long lasting insulin is being. Try to contact your DSN and get them on side, explain how upsetting this is and you really want to help your child to stop suffering. Don't be surprised if they seem less urgent than you expect. They will be more concerned with long term results than short term discomfort.

This week's have been
9.9
4.4
3.8
7.7
17.3
4.4
5.4
14.4

She was on 1 unit of levemir at 7pm, went up to 1.5 Tuesday

 

[Shivles]

Don't give corrections, you will end up chasing the dragon. Only give covering insulin calculated against carbohydrate. You will still not truly their correct ratio. This can be tuned once the basal is fixed

Don't correct her? Will she not just stay high then?