Some urgent advice for newly diagnosed please

[Warren1981]

Hi,

So long story short, daughter 10yr old diagnosed two weeks ago.

The consultant changed the bolus slightly last week but thats it.

This week her glucose levels are bouncing around between 14.0 - 18.0 mostly, with a few times an hour or so at 20.0+.

At night still usually between 10.0 - 14.0 intermittently dropping down.

Ketones normal.

The point it my wife is at home and she is getting very stressed, she wants to know if this is ok, the nurses arent really getting back to her other than they will pass on to consultant. Thats been since Wednesday this week and still nothing back.

All we hear is short term and long term but not time scales. No “this is fine dont worry the plan is x weeks to bring her down”, no anything. We do have a consultancy appoint in 1.5 weeks but until then it really feels like fighting fire and spinning plates and we arent really getting the support that was told to us in the hospital.

I know people have said dont worry too much about numbers at this stage but it just feels like whatever we do isnt really working, but is that just how it is at this early stage? Or is this a huge issue that we should be flagging with someone - if so, who?

Any advice would be great!!!

 

[Lauren]

Sorry you're going through this.
At this stage monitor what is happening, try not to get toooo stressed although I know that must be difficult.
They won't make many adjustments too quickly as they will need to build up a picture of what your daughter's day to day requirements are. It sounds like you're doing an amazing job monitoring glucose and ketones and it will give the consultant a great overview when you do see them.
Do you have a diabetic specialist nurse (DSN) you can contact?

 

[Lauren]

Also there is a very helpful thread for parents on the main forums page, it might be helpful / reassuring to see what other parents' experiences have been. There's also a 'guide' pinned at the top:

Parents

This is an area for parents of children with diabetes to discuss, help and advise each other...

forum.diabetes.org.uk

 

[Warren1981]

Would that be the same as out local team we come under? That nurse just repeated that the ratios possibly need to change but she cant do anything without the consultant and he has been repeatedly tied up. We just really need to know if this is all normal course of a newly diagnosed child.

 

[Warren1981]

Also there is a very helpful thread for parents on the main forums page, it might be helpful / reassuring to see what other parents' experiences have been. There's also a 'guide' pinned at the top:

Parents

This is an area for parents of children with diabetes to discuss, help and advise each other...

forum.diabetes.org.uk

Thank you!!!

 

[rebrascora]

Hi and welcome.

Really sorry to hear of your daughter's diagnosis and can only sympathise as it must be incredibly hard for parents, I think much more so than for those of us who are Type 1 ourselves.

What were your daughter's levels like at diagnosis?

Generally they like to bring levels down gradually into range over a number of weeks, so if you are seeing levels between 10 and 14 at night and that is lower than when she was first discharged from hospital then that is OK. I know levels in the teens and the odd 20 still seem high but it can but a lot of strain on the fragile blood vessels in the eyes and kidneys etc to bring those high levels down too quickly, so whilst longer term you don't want levels to be that high lowering them slowly over a period of several weeks is safer. They will also want to avoid (as much as possible) an overdose which could cause your daughter to have a nasty hypo and balancing insulin doses is a bit of a dark art, so adjusting doses very carefully is important. Great to hear that you are testing for ketones and they are negative as they are the short term threat, not the BG levels being in the teens or odd 20s.

Is she on a fast acting meal time insulin as well as a long acting (basal) insulin that you just inject once or twice a day? What are the names of the insulin she is on?

I don't think there is any cause to panic at this stage but if levels started to consistently climb and were mostly in the 20s and not going down or ketones develop, then you need to seek medical help.

 

[mashedupmatt]

Hi @Warren1981 - so soon afteer diagnosis those numbers aren't too bad but I understand why it's stressing you out - if her numbers were very high to start with it is best to bring them down gradually, which is probably why they haven't increased her mealtime ratios too much - as @Lauren has mentioned a DSN is the best person to speak with, but if they are hamstrung by having to speak to a consultant first that must be very frustrating - just keep perservering but I would try not to panic too much for now - you are doing everything right testing for Ketones if the numbers are stubbornly high - great job - it will get easier

 

[Lauren]

Would that be the same as out local team we come under? That nurse just repeated that the ratios possibly need to change but she cant do anything without the consultant and he has been repeatedly tied up. We just really need to know if this is all normal course of a newly diagnosed child.

Yes, when you see the consultant they can review the ratios with you. I would say as painful as it is to wait, it is fairly normal to wait a week or so between consultant visits in the early days. It sounds as if the nurse is passing on your concerns, the consultant may well get back to you before then (hopefully!)

 

[Warren1981]

Hi @Warren1981 - so soon afteer diagnosis those numbers aren't too bad but I understand why it's stressing you out - if her numbers were very high to start with it is best to bring them down gradually, which is probably why they haven't increased her mealtime ratios too much - as @Lauren has mentioned a DSN is the best person to speak with, but if they are hamstrung by having to speak to a consultant first that must be very frustrating - just keep perservering but I would try not to panic too much for now - you are doing everything right testing for Ketones if the numbers are stubbornly high - great job - it will get easier

Thank you - yea she went in with 30.1 and they said she may have been high for a long time before that. She wasnt in DKA thankfully. Its just hard to know whats normal and whats not as in hospital all we were told is short term and long term but with no actual time scales as to what that means. Thank you for your reply though it helps a lot!

 

[Warren1981]

Yes, when you see the consultant they can review the ratios with you. I would say as painful as it is to wait, it is fairly normal to wait a week or so between consultant visits in the early days. It sounds as if the nurse is passing on your concerns, the consultant may well get back to you before then (hopefully!)

Thank you, Lauren your response help loads!

 

[Warren1981]

Hi and welcome.

Really sorry to hear of your daughter's diagnosis and can only sympathise as it must be incredibly hard for parents, I think much more so than for those of us who are Type 1 ourselves.

What were your daughter's levels like at diagnosis?

Generally they like to bring levels down gradually into range over a number of weeks, so if you are seeing levels between 10 and 14 at night and that is lower than when she was first discharged from hospital then that is OK. I know levels in the teens and the odd 20 still seem high but it can but a lot of strain on the fragile blood vessels in the eyes and kidneys etc to bring those high levels down too quickly, so whilst longer term you don't want levels to be that high lowering them slowly over a period of several weeks is safer. They will also want to avoid (as much as possible) an overdose which could cause your daughter to have a nasty hypo and balancing insulin doses is a bit of a dark art, so adjusting doses very carefully is important. Great to hear that you are testing for ketones and they are negative as they are the short term threat, not the BG levels being in the teens or odd 20s.

Is she on a fast acting meal time insulin as well as a long acting (basal) insulin that you just inject once or twice a day? What are the names of the insulin she is on?

I don't think there is any cause to panic at this stage but if levels started to consistently climb and were mostly in the 20s and not going down or ketones develop, then you need to seek medical help.

Hi thank you ever so much.

When she went in she was 30.1.
They were pretty similar may be slightly higher when discharged, around 16.0 - 18.0 but with slightly more falls in to 9.0 - 12.0.

She has Levemir and Novorapid. Her basal is once at night.

Thank you!

 

[rebrascora]

I think at this stage those numbers with negative or low ketones are OK. Children's bodies are probably more resilient than adults and we have had adult members who have had levels that high for months and months on end. It is not ideal for levels to be that high for 6 months but it is also important to bring them down slowly and I imagine the consultant will be looking to increase doses and/or ratios at your next appointment.

I can totally understand your wife panicking but the important thing is that your daughter is getting regular insulin as that should keep ketones at bay and that that doses are adjusted slowly to bring her down gently. A nasty hypo is far more scary, so much better to just take it slow and steady during the first few months of diagnosis.

 

[rebrascora]

Sometimes when insulin is introduced, the few remaining beta cells have a bit of a resurgence of activity after a few weeks and together with extra injected insulin could drop her too fast, so again they may be holding off an increase to see if that happens.

 

[Warren1981]

Thank you ever so much, it really does help as there is a lot of unknown for us.

 

[Inka]

Those aren’t awful numbers for 2wks after diagnosis @Warren1981 As said, it’s important to bring her numbers down gradually. Think of it as you and your wife kind of just keeping her steady and safe until you get the next lot of medical input.

 

[Warren1981]

Those aren’t awful numbers for 2wks after diagnosis @Warren1981 As said, it’s important to bring her numbers down gradually. Think of it as you and your wife kind of just keeping her steady and safe until you get the next lot of medical input.

Thank you ever so much, Inka - I really appreciate your reply. Absolutely right, its a delicate process I dont think we appreciate how it is and how slowly moving her down is what needs to happen not rushing. Thank you!

 

[Thebearcametoo]

As others have said those numbers are ok for being newly diagnosed (and not the end of the world even further on). Uncontrolled diabetes is dangerous as you’ve seen with keto acidosis but she’s now on insulin so there is control even if it’s not super tight. It does take a while to work out the ratios and the first few weeks are as much about data gathering as anything else. Plus with kids there’s rarely a fully sorted stage as they grow and things need changing again.

It’s safer to be slightly higher at this point than to be having a lot of hypos (the first hypo will be terrifying but I promise you will get used to them).

I’m intrigued about the nurse not wanting to change ratios. Our team has nurse, dietician, doctor, and psychologist. Any of them except the psychologist can give advice on ratio changes etc.

 

[everydayupsanddowns]

Ah @Warren1981 - it can be so tough in the early weeks. But clinics often nibble away at those high levels gradually, so that the BGs that have been creeping up over months as the beta cells gradually got splatted, don’t crash down into range (or lower than that!) in a week.

Do keep in contact with her clinic and let them know how difficult you are finding things, as I’m sure they won’t want you to be feeling as if you are lost and floundering.

 

[Warren1981]

I think we are in a better place today, the nurse phoned last night adjusted food corrections +0.5 and any before bed correction -0.5. Her sugars seem stable and I think with the nurse phoning and with all of your responses, my wife is more relaxed - Im a lot more relaxed. Its a long road but it really does help to get an idea of that road and thats where forums like this are amazing. Honestly, Im in my 40s so not young but I do wonder how people coped years ago but they did and I think I forget that!! We will cope and we need to slow a little and just keep on the ball!!

Thank you all so much!!