Oh what's the point

as a parent it must be so hard to KNOW what is best for a young child.
I suppose I was lucky in that I was 14 when I was diagnosed so could understand what was happening.

so as parents you are both filled with all the emotions of the diagnosis but at the same time need to act totally rationally to ensure your daughter's continued health and safety.

Not a very easy task at all

basal bolus is very different to mixed insulin twice a day
I did once a day for 10 years , followed by 15 years on twice a day , followed by 18 years on MDI ( basal bolus ) , and now a year on a pump.

they are definitely all different in terms of daily management.

also , he has an advantage of the ability to communicate how he feels.

Mixed insulin is a different thing. I was on it after diagnosis, and yes, you're quite correct in that you eat to the insulin because you've already pre-injected a set dose.

Basal/bolus is different. I'm not sure that an explanation woukd help your husband at the moment. It must be very stressful for you both, and it's possible your husband is blaming himself and so reacting out of guilt and fear. Only you can judge if it's best to leave it, or if it's worth having a calm chat/explanation.

From what you've saud, you worked the insulin out correctly. Again, you could repeat the meal slightly increasing the chips by a few grammes. Then when she eats that meal in future you'll know she needs X amount of chips.

I know it must be very hard emotionally, but you're doing really well, taking on board all the diabetes knowledge you have so far. Remember too that it'll get easier the more your daughter can communicate and understand.

shivles said:

If I did try and explain (again) he won't believe me, he's diabetic and I'm not so therefore I know nothing. We had a row at 5am over how many cola bottles to give for a hypo

I've been instructed to feed her 'normally' from now on, ie bread, bread more bread and maybe some pasta.

Now it looks like he won't be coming to the hospital appointment on Friday morning so everything I relay back from it will be lies because it doesn't match what he knows.

At best he thinks I'm negligent, at worst that I'm actually trying to harm her, it's extremely upsetting.

Least he's doing some of her blood tests now he thinks I might kill her

Click to expand...

Oh dear. I can only offer my sympathies to you. Given this set of issues, and guessing that your daughter and he are both using the same hospital, can I suggest that you raise the issues you are having with your care team at the hospital, if you can't persuade him to come to the appointment?

Whilst I don't know what they can do, they'll understand the concerns and you might discuss the idea that it would benefit her to change his regime to match hers at his next appointment. Who knows, you might be able to persuade them to call him up and suggest a change ahead of the next planned appointment.

Oh dear, what an awkward state of affairs!
Obviously your husband knows about HIS diabetes but doesn't truly understand all the treatments available.

He can't seriously think you want to harm your child so he must be worried. Why not persuade him to come to the next hospital appointment. If he can't go, ask the hospital for some (more?) literature on your child's treatment and let your husband read it.

If he realises that MDI is regarded as the best treatment for most patients, maybe he'll ask to go on it himself. Then you can all learn together.

shivles said:

He doesn't have a hospital team anymore, he doesn't need one, just like he doesn't need to test his blood sugars

I will tell them anyway, one of the nurses on our team was his when he was a kid (and her and his mum are still friends) so maybe she can help in some way, I think I'll ask to record the appointment just so he can hear what's said.

Click to expand...

Oh dear. I don't know how you can easily deal with this, but it sounds like he's hit a burnout stage (http://www.diabetes.co.uk/forum/threads/diabetes-burnout.13994/) and the link might help you understand it. He definitely needs psychological help if he's not testing his glucose levels at all. This might help you understand the psychological aspects as well (http://www.diabettech.com/diabetes/...sychological-effects-of-a-diabetes-diagnosis/).

I don't know how you're going to be able to do the next step, and I hope that others on here can help, and that's get him to understand why he needs to change. Maybe your daughter can be the catalyst for that. Recording the advice of the DSN certainly seems like a good start.

shivles said:

He is adamant he doesn't need help, I've tried in the past to talk to him about it because he scares me to death. He doesn't need to test anymore because he 'just knows' and doses his insulin depending on how he feels. I'm pretty sure he's been running high for years, recently the circulation to his feet has been off, he gets pins and needles in the night... He went for a doctor's appointment a few weeks back and I thought I might have got through to him but the doctor says 'everything is fine' and he keeps 'forgetting' to ring them for his hba1c result... I'm starting to wonder if he actually went.

My daughter has and psychologist as part of her team and it's been mentioned lots of times he can see either of us too but I've no idea how to convince him to have and chat with him, he says he's fine.

He's pretty much ignored LOs T1 so far except to have a go about her lows which he feels are my fault. It's been 2 months and he will point blank refuse to give her insulin if I ask, last night was the first time in over a month he checked her blood. I can't leave her alone with him for longer than an hour or so because he won't check her and will just feed her sweets in case she's going low.

I'm at a loss of what to do

Click to expand...

Have you had this conversation with her diabetes team? Because if you haven't, you really need to. You already realise that her care is at risk with what he's doing, and I think you need help with this.

I don't know what access you have to a printer, but perhaps you can print off various documents that are of interest to "you" and leave them lying around for him to see, just randomly. Would that change anything. This poster, for example, in relation to his guessing glucose levels and articles, such as this, relating to glycaemic control in children.

shivles said:

I've not yet but I will be on Friday, I've tried that approach with other things and he just thinks I'm interfering

Click to expand...

Then you're kind of left with her diabetes team, and if necessary, them writing him and you a letter telling you that they need to see you both to discuss her care.

shivles said:

He is adamant he doesn't need help, I've tried in the past to talk to him about it because he scares me to death. He doesn't need to test anymore because he 'just knows' and doses his insulin depending on how he feels. I'm pretty sure he's been running high for years, recently the circulation to his feet has been off, he gets pins and needles in the night... He went for a doctor's appointment a few weeks back and I thought I might have got through to him but the doctor says 'everything is fine' and he keeps 'forgetting' to ring them for his hba1c result... I'm starting to wonder if he actually went.

My daughter has and psychologist as part of her team and it's been mentioned lots of times he can see either of us too but I've no idea how to convince him to have and chat with him, he says he's fine.

He's pretty much ignored LOs T1 so far except to have a go about her lows which he feels are my fault. It's been 2 months and he will point blank refuse to give her insulin if I ask, last night was the first time in over a month he checked her blood. I can't leave her alone with him for longer than an hour or so because he won't check her and will just feed her sweets in case she's going low.

I'm at a loss of what to do

Click to expand...

I can't add much here shivles, as I've not experienced T1, I'm not a parent and clearly I don't know your family (aside from on here), however, have you considered seeing the psychologist yourself to explain how you are feeling and how difficult you are finding communication with your husband, without it ending in conflict? This really can't be too unusual (sadly) where parents are at different stages of accepting their child's diagnosis, and the resulting seemingly continual flexing o treatment regimes.

In your shoes, I might consider that, and even i they don't have a silver bullet solution, you may feel better having been able to focus on this aspect for a full appointment without feeling "guilty" you're taking up any of your daughter's appointment time? Additionally, if you can go to that appointment on your own, you could maybe be able to allow yourself a bit of "me time" after the appointment to just think it through, rather than leaving the room and immediately being back in Mummy mode.

As my avatar says, "You can't pour from an empty cup". In order to give, you have to have something left to give. Just my thoughts as an outsider, lay person.

shivles said:

As I say, I can't leave her with her dad, the only people who will watch her for me are his parents but I worry about asking them because the last thing I want is for them to feel I'm taking the mick

Click to expand...

Do you have a friend who would look after her for a short while? Or, does the hospital have a creche or the like? Does she go to nursery/playgroup yet?

Could you persuade him to come to the appointment by phrasing it in a way that suggests you need him and his diabetes knowledge to help you interpret what the specialists are saying? Yes, I know that might stick in your throat, but it's a way I've found to persuade defensive people. I know you might think it's not your job to humour him and pander to him, but if it benefits all three of you in the long run, then it's worth a try at least.

What do his parents say about his control? I appreciate you may not have felt able to mention it to them.

Type 1 is wearing year after year, and burnout is surprisingly common.

Asking his mum to come to the appointment might be a good idea as long as it won't antagonise him. Perhaps you could ask her to say it was her idea?

I don't know you or your husband, but I'd argue that that allows me to be objective about the situation. At this point, we've only gotten one perspective of this situation, but it does sound like you're both on opposite ends of the spectrum here.

Having read your past posts, I would also question your methods and approach to managing your daughter's diabetes. Note: "Question" does not necessarily mean "Disagree with" in this case. I question the potentially harmful effects of a low carb diet for a child who is still developing. It's simply incorrect to assume that just because it works for adults (who have stopped growing) also means that it should work for children.

I wonder if that answer is to work with your husband to find a compromise in this situation. While he may not be the best at managing his diabetes, he's the one that ultimately lives with it and so is your daughter. That's not to say that it isn't just as hard on you, but it's something you can't truly understand until it affects your own body.

So the next time your husband offers his opinion perhaps ask him what his reasoning is. Explain that "I just know" isn't an acceptable answer as that's unfair to your daughter. Alternatively, you should be prepared to justify every opinion you have.