Lantus - what's protocol here?

If she does start to get DKA with these new out of nowhere highs, are you fully on top of the Sick Day Protocol to treat it? It's a very different protocol for testing and dosing.

With impending or actual DKA you do start to stack doses, but in a very predictable and regimented manner.

 

One obvious reason the antibiotics may be causing her BG to drop is that she has a significant inflection and the coamoxiclav is controlling the infection exactly like it's supposed to. That will prevent or reduce the runaway BG rise that accompanies an infection.

Have you by any chance discontinued the coamoxiclav? If so your daughter could be hours away from DKA or hyperosmolar hyperglycaemia.

 

Her BG is soaring because you discontinued the coamoxiclav. Never do this!! She is headed for DKA. Been there, done that. I discontinued coamoxiclav for 8 hours overnight due to allergic reaction, awaiting an alternative antibiotic, I was in A&E with DKA by morning.

On top of it all the coamoxiclav is critical to control the risk of lethal side effects from the immunosuppressive off label drug.

Get her back on the coamoxiclav and stop improvising, please!

 

@mirror, with the best will in the world no one here could ever hope to get your daughter problems sorted as her issues are so complex and she needs professional help in a medical setting, none of us here are qualified or in a position to give advice on insulin dosages and this is something you need to be discussing with your diabetes team, if her DSN is being unhelpful then insist that she is seen by a Consultant.

Good luck.

 

It's very different from that.
But it does require you knowing a reasonable Total Daily Dose (TDD) and in this case... who knows.

@noblehead do you have a Sick Day Rules link please?

 

@mirror
you are not being reprimanded. just given advice we can only do that we can not sort your problems out on here only give you advice. yes we would still like to know how you get on and how you are doing but as stated above you need some professional help with you daughter's problems. please keep us up to date all the best to you all

 

Hello @mirror

Don't take the aforesaid replies as reprimands!

The posters are giving you the best advice from their experience and education and with only a scant perspective.

However, as has been mentioned, your daughter's circumstances are complex and beyond anyone's 'field'.

I quite understand your reticence about your local hospital; in that case you / your husband do need to speak with the neurologist about a transfer to a hospital where you can be sure of safe handling of her diabetes with such additional issues.

People will try to help you, but none of us (to my knowledge) has the high level medical training to provide comprehensive support at such a difficult and worrisome time for you all.

 

If her BG rises rapidly at the end of the course or the discontinuation of the course, doesn't matter, it's extremely likely there is was an active infection that is now uncontrolled.

With your daughters BG very erratic over the last week the effect of the antibiotics will have been compromised and the one week course was probably not enough. High BG undermines the effects of antibiotics leading to a runaway increase in both infection and BG.

 

This is all true and understandable. I really feel for her and both of you. You have all done the best you can and have been let down by repeated incompetence.

My intention (and I'm sure that of everyone else here) is to be supportive of you. I do think you are doing an awesome job and of course you have your daughter's best interests at heart. But I think her current needs require a professional, and none of us, including you and your husband, could be expected to know how much insulin she needs at a given time, because it is so changeable and she has other conditions besides diabetes. No layperson could get it 100% right at the moment.

It's a shame that you have no say while she is in hospital. But I think this is because you need some legal work done. I suggest you consult a specialist family lawyer about getting the court orders in place to have welfare guardianship (or whatever it is called in the UK) put in place. These orders give you the same decision making power that a patient has when they are medically assessed as mentally competent. It should only take a few days to get this done, all going well.

I know you don't want her in hospital unless 100% necessary but perhaps a doctor should be the one deciding whether it is currently necessary? A doctor who has all the current facts. I don't think the DSN had all those, because things seem to be changing by the hour at the moment.

I realise certain staff at this hospital have done things that were incompetent and unsafe. However, there is a high dependency unit (which hopefully provides safer care?) and there will also be a tertiary level hospital within a short helicopter flight or ambulance drive that she could be transferred to, for better care.

 

I don't think anyone was criticising your or your husband for those decisions. They were just pointing out that other options were probably safer, and suggesting it's best if a similar decision isn't made again. We do mean well.

 

Even without T1 being a factor, I've had dozens of courses of antibiotics over 42 years and one thing I've learned is that the infection is not always cured during the first course of treatment. When this happens, it's necessary to see the doctor and get another course of meds, sometimes a different type or two types. People who test their BG have a way of finding out the ABs haven't worked sooner than other people. One bonus I guess.

So I think Spiker is right about the effect the high BGs have had on the infection, and a trip to the doctor is needed.

 

Yes it's one "consolation prize", much easier to see the progress of an infection.

 

Hello @mirror,

I thought I'd check in with you; how is everything going?

(Sorry I haven't got back to your PM, I've had horrendous issues with windows 10 upgrades and am busily rebuilding our laptops as a result. )

Kind regards,
Conrad

 

Sorry to hear she is still having these issues
The docs you are seeing tomorrow, is that the diabetes consultant? Have you contacted him or his office to report the hypo and seizure?
I hope he does further tests like those you mention. If she needs to be an inpatient to get them done, I think that sounds like a good idea. IMO no stone should be left unturned.

Hugs.