Increasingly frustrated

[shivles]

Parent
It seems no matter what I do I cannot control LOs blood sugar

She can have the exact same food at the same time on different days and one day she will hypo after and the next day will hyper!

I'm just totally at a loss, I feel out of control, I didn't want to change her diet but to be honest I can't see another way of improving her control. It just feels so restricted for someone so young, but on the flip side she is clearly feeling bad from the constant swings.

There's not really a question here I'm just ranting I suppose

 

[azure]

@shivles Dont despair. Please be assured that controlling Type 1 isn't easy even for someone like me who's had it more than 20 years. It's a 24/7 job, and blood sugar can be affected by numerous things apart from food eg illness, hormones, growth, stress.

The first step is to ensure your LO's basal rate is as right as you can get it. That's the foundation on which you build so you want it as 'firm' as possible. Then, once that's round about ok, you can look at ratios for meals.

Controlling Type 1 is a matter or practice - practice makes almost perfect, in this case.

Please ask whatever questions you want here. No question is silly, no,question is too basic. Everyone wants to help because we know it can be hard.

I have 3 children but none of them have Type 1. However, if they did, I'd be looking at an insulin pump, like I have myself. It makes it much, much easier to match the basal to your body's needs, and it means you can do tiny amounts of boluses eg 2.15 units, 3.75, 0.1 - whatever is most appropriate.

As most young children are on small doses of insulin,,it makes it much easier. It also allows the basal to be temporarily reduced to allow for things like exercise.

I am not a child and I've finished growing, but I eat normal meals but not excessive carbs eg cereal and milk for breakfast (but weigh cereal and choose appropriate type of cereal and bolus enough in advance); sandwich and fruit for lunch, rice/pasta/potatoes, meat and veg for evening meal. My BMI is in range and my last HbA1C was 5.2. I say that not to suggest I'm perfect as I'm definitely not, but to show you that control is perfectly possible with experience and persistence.

I fully appreciate its that much harder with a young child as their routine might vary and their exercise isn't always planned, etc, but please know that every little success you have, every good sugar, is an achievement. Type 1 is an ongoing job, day by day, hour by hour. Everyone here will understand how hard you're working.

Best wishes,

Azure

 

[shivles]

@shivles Dont despair. Please be assured that controlling Type 1 isn't easy even for someone like me who's had it more than 20 years. It's a 24/7 job, and blood sugar can be affected by numerous things apart from food eg illness, hormones, growth, stress.

The first step is to ensure your LO's basal rate is as right as you can get it. That's the foundation on which you build so you want it as 'firm' as possible. Then, once that's round about ok, you can look at ratios for meals.

Controlling Type 1 is a matter or practice - practice makes almost perfect, in this case.

Please ask whatever questions you want here. No question is silly, no,question is too basic. Everyone wants to help because we know it can be hard.

I have 3 children but none of them have Type 1. However, if they did, I'd be looking at an insulin pump, like I have myself. It makes it much, much easier to match the basal to your body's needs, and it means you can do tiny amounts of boluses eg 2.15 units, 3.75, 0.1 - whatever is most appropriate.

As most young children are on small doses of insulin,,it makes it much easier. It also allows the basal to be temporarily reduced to allow for things like exercise.

I am not a child and I've finished growing, but I eat normal meals but not excessive carbs eg cereal and milk for breakfast (but weigh cereal and choose appropriate type of cereal and bolus enough in advance); sandwich and fruit for lunch, rice/pasta/potatoes, meat and veg for evening meal. My BMI is in range and my last HbA1C was 5.2. I say that not to suggest I'm perfect as I'm definitely not, but to show you that control is perfectly possible with experience and persistence.

I fully appreciate its that much harder with a young child as their routine might vary and their exercise isn't always planned, etc, but please know that every little success you have, every good sugar, is an achievement. Type 1 is an ongoing job, day by day, hour by hour. Everyone here will understand how hard you're working.

Best wishes,

Azure

I'm reluctant to put her on a pump, she's not old enough to make the decision herself and unless there's no other option I don't want to make a change to her body like that.

How can I make sure her basal is correct? The nurses change her doses every time I talk to them which is also frustrating. As she's a toddler it's very difficult to get her to eat the right amount of a meal and even when she does her blood sugar goes through the roof before plummeting to normal or even low.

It's incredibly frustrating as I can see she doesn't feel well with the fluctuations but I'm doing what I should be... I feel powerless.

I just give her bacon and eggs for lunch to try and keep her a bit more level, I can't cope with seeing her feeling awful because I've give her bread and the insulin doesn't work fast enough.

Instinct tells me to put her on low carb diet but I know her dad doesn't like that idea, seems like it's that or a pump though because this isn't working well enough for me to be happy with. Even more frustrating is that no one else seems concerned and is quite happy for her to spike to 15+mmol after a meal

 

[azure]

@shivles I can understand how upsetting that must be - to be trying so hard to control her blood sugar and feeling you've 'failed'. I have a toddler myself and I completely understand how unpredictable their food intake can be. I don't know what your team have advised about that. I believe bolusing after meals (so you know what she's actually eaten) is the usual approach, which is understandable as that's safest. Not bolusing before a meal will mean some spikes but remember your daughter will soon be old enough that she'll have more understanding and you may not have to do this. There's no easy answer with young children.

Whether you choose to go with a pump or not is your choice - absolutely. But I just want to correct your idea that it's almost a kind of 'body modification'. I thought that before I had one. I kind of imagined it like a metaphorically enormous flashing Thing connected to me, beeping and flashing and Doing Things. In reality, it's more like a mobile phone slipped in your pocket. I honestly don't notice my pump or even think about it as I go about my day. I thought it would be a ball and chain that reminded me of diabetes every second, but actually it's freed me and means I feel 'normal' again.

If your daughter's team are still adjusting her basal, then that sounds like they haven't got things quite right yet. That's not a criticism. It's far better to tweak carefully (although understandably frustrating for you). She may also have some of her own insulin still working, albeit erratically. That will muddy the waters a bit initially.

You've alluded to the LCHF diet. Again, that's your choice but you would need to speak to your daughter's team so her growth could be monitored. We all have to make our own choices. Remember that there are a number of groups promoting LCHF for children - but a far greater number of parents quietly giving their children moderate carbs. If one of my children was diagnosed tomorrow, I'd be following the moderate carb approach, not just because that's what I do personally, but because I would personally not be happy with that diet for a child. That's my opinion. Your opinion may vary and the decision is yours to take : )

If you look at the Type 1 forum, you'll see most people eat around 150-200g carbs.

I'm tagging @1Sarah1 again as she may have some good advice.

 

[catapillar]

@shivles here is som information on basal testin - https://mysugr.com/basal-rate-testing/ but, I have no idea whether that would be appropriate for a child. So, instead of launching into a full basal test, have a read of the info in the link and then consider whether your daughters blood sugar stays fairly flat overnight, without corrections or carbs - that should give you an indication of whether basal is set correctly to do its job.

Have you seen any pumps or any kids with pumps? I ask because the idea that you would be making a change to your daughters body seems misconceived to me. A pump is entirely temporary and removable and unobtrusive - if your daughter decides when she's 7 or 8 she doesn't like it, there would be nothing to stop her going back to injections. Was at a JDRF event at the weekend and there were dozens of kids happily wearing pumps - it might be worth seeing if there are some type one family events near you so you could see a pump in action on a child, just to see what it is like in real life.

I don't know much about low carb diets in growing children, but please don't make a decision on such a drastic change in your daughters diet unless you are content that you do know an awful lot about it.

I don't have a child with type 1, but if I did and the choice was pump or low carb, I'd go with pump because I would prefer that they could go to birthday parties and bolus for the cake as a treat and not be excluded by a special diet or be worried that there might be some low carb risk to growth and development (entirely speculative- I don't know anything about low carb diets for kids).

 

[azure]

Sorry - I missed your question about basal. The way that older children and adults check their basal is to do a basal test. This means missing food for a portion of the day. That's probably not appropriate or possible for a young child, so speak to,your team about what you should do to test her basal keeps her level.

Edited to,add that once you have her basal as close to right as you can, then you can look at her mealtime insulin. Although an after-meal bolus/not in advance bolus would probably mean a spike, to go up to 15+ suggests she may need a little more fast acting insulin for that meal. When I was first diagnosed, spikes weren't really spoken about so I didn't fuss too much about the timing of my injection and often went up to 10+ but that's still quite a bit below your 15 example, hence my suggestion that you look at boluses after the basal.

I promise you your desperation and frustration is normal for a parent. It's a horrible thing to see a child diagnosed with a medical condition like Type 1. But, remember, time will teach you ways of keeping her blood sugars more in range, and she herself will be able to take a greater part in this.

 

[shivles]

I know a lot about low carb and while it may be restricted it certainly will not harm her or affect growth.

I have seen pictures of kids with pumps and heard stories, my worry is that first of all our team would make her stay on it for 4 years before considering removal if we change our mind. Also I worry about it being in her way, catching on things, her pulling it out etc.

I have tried pre bolus a few times but all that happens then is it doesn't spike quite so much and if she eats slowly ends up with a hypo.

They adjust basal and bolus constantly, seems to be right for a few days then it all goes wrong again.

 

[catapillar]

No one can make your daughter stay on a pump if you and she are not happy with it.

The thing with stick with a pump for 4 years is that the pumps are under warranty for 4 years so if you pick a pump and don't like it you won't be given a choice of a different pump until the original pump is out of warranty - the choice will be stick with the pump you don't like, or go back to MDI. While on a pump, all of your MDI stuff should remain on your repeat prescription so they are available in case of pump failure (or if you just want a break).

 

[catapillar]

You could try pre bolusing 50% and then give the other 50% when she had eaten to try and avoid the spike along with the unpredictability of what a toddler might eat. Obviously that would mean two injections, so this approach might be easier on pump.

 

[azure]

I know a lot about low carb and while it may be restricted it certainly will not harm her or affect growth.

I have seen pictures of kids with pumps and heard stories, my worry is that first of all our team would make her stay on it for 4 years before considering removal if we change our mind. Also I worry about it being in her way, catching on things, her pulling it out etc.

I have tried pre bolus a few times but all that happens then is it doesn't spike quite so much and if she eats slowly ends up with a hypo.

They adjust basal and bolus constantly, seems to be right for a few days then it all goes wrong again.

No, she wouldn't have to stay on it if she/you didn't like it. As @catapillar says, the four years is to,stop people asking to,upgrade or change their pump after 12 months.

I know I'm not a child but I have 3 exceptionally clumsy ones that climb all over me and my pump stays safe. I know that there are special pump rucksacks for young children that are tiny bags they wear on their back with the pump,safely tucked away. Remember too, there are tubeless pumps like Omnipod.

It's good that you've felt confident enough to bolus in advance. It may be straight before eating is fine for some meals, so don't feel you have to bolus 20mins in advance or whatever. I know that some parents also split the bolus - an initial dose pre-meal then topped up if necessary depending on how many carbs have been eaten : )

 

[shivles]

No, she wouldn't have to stay on it if she/you didn't like it. As @catapillar says, the four years is to,stop people asking to,upgrade or change their pump after 12 months.

I know I'm not a child but I have 3 exceptionally clumsy ones that climb all over me and my pump stays safe. I know that there are special pump rucksacks for young children that are tiny bags they wear on their back with the pump,safely tucked away. Remember too, there are tubeless pumps like Omnipod.

It's good that you've felt confident enough to bolus in advance. It may be straight before eating is fine for some meals, so don't feel you have to bolus 20mins in advance or whatever. I know that some parents also split the bolus - an initial dose pre-meal then topped up if necessary depending on how many carbs have been eaten : )

The nurse said she would have to have it 4 years like it was law :/ Maybe like you say it's not true but if they would make it difficult to take it off I'd rather not do it, 4 years is a long time for a 16 month old!

On a pump she would still spike after meals anyway wouldn't she? I know doses would be more specific but don't see how it will help the spikes

 

[azure]

No, that's not true. After all, some people might not like the pump or may move away or abroad - or anything.

When you have a pump, you also have back up insulin pens to keep to use if you need them. I've had a pump 12 years and I still have insulin pens. If I wanted to, I could swap to them tomorrow (but I don't want to - I love my pump!) There's no way on earth your daughter would be compelled to,use something she/you didn't want. Maybe they were just trying to see if you were serious or something?

Pumps are simple to 'take off'. They're not plumbed into you. I take mine off whenever I swim or shower even though it's waterproof (just my preference) The pump is like a tiny phone and you connect the tubing to the pump, then that tubing goes into a tiny little cannula that sits under your skin temporarily. It can be removed at any time and is replaced every two or three days. Its easy to insert as they have automatic inserters or you can just do it yourself, as I do. The simplest way to,describe it is to imagine a clear plastic tube just around the needle of the insulin pen. You stick the needle in your body, then take it out and it leaves the tiny teflon tube in you, to which you then attach the pump by the tubing. It's simple.

You then have the closest thing to a pancreas - but a nicer colour : ) (my pump has a choice of colours)

 

[azure]

On a pump, it would be easier to split the bolus (just another button to press) and you could split it as you wanted. You could also do what's called an extended bolus where you spread her, say two units, over 30 minutes (or longer - good for higher fat meals). There are far more options on a pump. It's also easier to do correction doses (just press buttons)

 

[tiredsince_11]

Dia-parenting is very frustrating at times so by all means rant. Obviously personal opinions are trumped my medical consult but the lack of control with injections was what turned me to choosing a pump. My son has proudly worn his pump since he was 20 months (5 years ago) and our clinic has had children as young as 6 months old on a pump. I love the thing with its temp basal capacity and other nifty tricks. It doesn't catch on things and he has begun to dial himself in (with me double checking). I have also heard of kids having a pump for 2 months then ditching it. Whatever you decide is the right decision for you seeing as you are the one dealing with the day to day of it

 

[Keggering]

I can't imagine how difficult it is managing T1 for your toddler. I understand exactly your feelings of frustration, I used to feel like such a failure when I couldn't manage my levels. Since I've learnt about how to manage it with a low carb diet it's completely changed my life. I'm much healthier, and barely ever get hypos. If my levels do drop they can be brought up gently rather than going through the roof. You say you already know a lot about it so you probably don't need any suggestions, but there's a wonderful video presentation on dietdoctor.com by Dr R. David Dikeman about managing his child's T1 with low carb. It concisely presents the scientific evidence to support the diet for type 1s. He works with Dr Bernstein, and also has a Facebook group Type One Grit. Good luck!

 

[shivles]

Thanks for the replies

 

[azure]

Whatever you decide to do @shivles Do speak to your daughter's team. Your daughter is very young so that's even more important, but the advice is the same for all children:

http://www.diabetes.co.uk/forum/threads/low-carb-high-fat-lchf-for-children.91235/

Your child's growth and dietary composition will need to be monitored just as it would for other children on similar diets eg children with epilepsy. There can be issues (eg kidney stones) - hence the need for monitoring.

 

[shivles]

Whatever you decide to do @shivles Do speak to your daughter's team. Your daughter is very young so that's even more important, but the advice is the same for all children:

http://www.diabetes.co.uk/forum/threads/low-carb-high-fat-lchf-for-children.91235/

Your child's growth and dietary composition will need to be monitored just as it would for other children on similar diets eg children with epilepsy. There can be issues (eg kidney stones) - hence the need for monitoring.

Does a pump stop the spikes? How?

 

[catapillar]

Does a pump stop the spikes? How?

A pump doesn't magically stop spikes. It's how you use a pump that would give you a few more tools to manage spikes than are available to you on MDI:

1) a pump allows more accurate insulin doses and so a better insulin to carb match. Let's say your daughter is on a ratio of 1:23 and has a meal with 35g of carbs, on MDI (assuming you have a half unit pen) you could take 1u (too little) or 1.5u (too much). On a pump you could take 1.3u (just right).

2) a pump allows you to differ the delivery of the bolus so you can give all up front pre meal (like on MDI) or you can extend the bolus over an hour or more to help with low gi or fatty foods that have a later spike.

3) with a pump you can bespoke the basal delivery hour by hour to what you daughter needs, if the basal is properly tailored this should help with spikes as fast acting isn't having to compensate for inadequate basal

4) with a pump you can use temporary basal rates to be much more flexible (within a couple of hours) toy and your daughters needs.

I'm not sure low carb in itself would stop spikes either, a type one on MDI adopting a very low carb diet would need to know how to bolus for protein - you mentioned eggs, which for me are one of the hardest things to bolus for and I always end up with a prolonged spike.

 

[azure]

Does a pump stop the spikes? How?

A pump is only as good as it's user obviously, but a pump allows for an amazingly fine-tuned basal - totally and utterly different to any long-acting insulin - so you're starting from a better position. It also allows micro-dosing of insulin and different kinds of boluses. I originally got my pump because no basal suited me (nighttime hypos) but once I'd learnt how to use it properly, I saw how much smoother my sugars were.

Please don't think that a pump is magic. But, if you're prepared to put the work in and understand Type 1, it's the most fantastic tool.

I've had Type 1 for more than 20 years. I've looked at every diet, read as many books as I can, thought about diabetes numerous times every single day - and the best thing I've done is get a pump.

I don't pretend to be perfect, but the biggest factors in diabetes control, in my opinion, are knowledge first, pump second. By knowledge, I mean knowledge about the appropriate manipulation of insulin to control your blood sugar.

I understand how upsetting your daughter's highs must be. I have a toddler too, and it's easy to imagine the utter stress and frustration. But it's still early days. You're at the beginning of a path. I can understand why yoyr daughter's team are cautious. Obviously hypos are a fear. Another good thing about a pump is that some are compatible with a CGM. Users here have various systems set up so that those who care about them can see their blood sugar even when the person with Type 1 isn't with them. I say that because I'm imagining the constant worry of having a child with Type 1. Just another thing to think about anyway as you go through options and pros and cons : )