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drastic reduction in doses

S

Spearmint

Well-Known Member
Hi, just wondering if anyone has any experience in sudden drop in doses?

My daughter was diagnosed as Type 1 in May 2009 at age 9.
We took to it fairly well and i have always felt fairly in control and able to predict.
She is on twice daily injections of Humulin M3.
She used to have about 18 units at 7am and about 5 units at 5pm.
I used to feel confident adjusting the doses but back in October she lost the sensation of dropping low so i was advised to reduce her doses a bit and run her levels higher for 2 weeks.
That worked until she started having hypos 2 hours after going to bed so i was advised to cut her doses down further.
By the end of October she was having just 2 units at 7am and 1 unit at 5pm.
I was told it was just a phase which would past but it hasn't, she is still on those doses now and is still having hypos about half the nights in a month.
Her hba1c has gone up since:
8.7 May 2011
8.8 Feb 2011
7.8 Dec 2010
7.7 Sep 2010

The drs at the hospital seem puzzled by her and can't make their minds up whether to run any tests on her blood, there's no pattern in her routine sugar level tests, i feel completely out of control and keep asking the nurse at the hospital for help with her but they don't know what to tell me to do!
Their latest suggestion is to think about switching to Levemir and Novorapid.
Currently when i use Novorapid 1 unit will bring her down by 10-12mmol if high or 1 unit will cover 60g carbs if using for a bigger lunch.

Just wondered if anyone has any thoughts?

Thanks
 
Personally, I would agree with going on to a basal/bolus regime....however,,,,I think personally the best results would be achieved with a pump for you daughter.

Are you carbohydrate counting? Is your daughter hypo aware? There are lots of questions and answers that could be asked to try and help...but just from my own experience (solely as an adult though)....mdi gives better control and flexibility, but pumps are briiliant-BUT you do need a knowledge of carbohydrate counting and and knowledge of how basal and bolus regimes work.....and needless to say ......the inevitable of having HCP's that are willing to give you the support to get to a stage where you and your daughter are living...not surviving with diabetes.....
 
donnellysdogs said:
Personally, I would agree with going on to a basal/bolus regime....however,,,,I think personally the best results would be achieved with a pump for you daughter.

Are you carbohydrate counting? Is your daughter hypo aware?
Click to expand...

Thanks for your reply.

I can see it being more work for me if we change but i suppose that would be short term, my only concern is if she would cope with testing and injecting at lunchtime at school.

I don't strictly carb count at the moment, just make sure she has roughly the same amount for each meal every day. I have had to fill out detailed diary sheets the last 2 weeks though where i have weighed and accurately worked out her carbs to the exact gram.

She generally knows when she is low, she knows she needs to do a blood test and she knows from the result if she is low or not but she doesn't know how to treat a hypo, she has no idea about insulin doses and the relevance of food.
I have tried to get her interested in how to manage it.
If she feels low at school, she does a test wherever she happens to be and then just eats the first thing she pulls out of her bag which is usually the wrong thing!
I keep asking at school if somebody can actually tell her what to eat as per her care plan but nobody ever does unless she is out on a school trip!
 
The problem with the mixed insulin is that every time you adjust to avoid an hypo you are also adjusting the background insulin..

With the levimer/novarapid combination, you separate the background insulin needs from the quick acting insulin need to cover foods... Makes life a lot more flexible indeed but does mean more injections though..

Looking at what you are saying it does seem if your daughter is very insulin sensitive which could be problematic with MDI (the levimer/novarapid regime) due to 1 unit dropping her too low, so perhaps she might gain better control if she went onto pump therapy which has a amazing ability to very finely dose to suit indiviudal needs..

I would speak to your team about the merits of pumping
 
OMG.....I have a friend that is a school teacher and takes such pride in the fact that she tests and bolus's for a child on a pump and helps her etc......the task that you are facing is an uphill one......

The thing is though, to be quite honest-is that your daughter is going to be type 1 for the rest of her life...not just short term.....it is a huge step initally, and I fully understand why children are put initally on to a mixed dosage before a basal/bolus regime and (if they are lucky) on to a pump....

It is huge for a 9 year old to come to terms with, and for yourself as the parent. I think the most important thing at this stage is to get your daughter and her care plan to recognise that HYPO's DO AND WILL HAPPEN.....and...most importantly.....1) NEVER LEAVE YOUR CHILD ALONE if hypo....and a plan that she knows and accepts that she must do...I.e sneak 2 or 3 jelly babies......what ever she is happy with accepting and doing with the minimum of fuss......

The hba1c's aren't alarmingingly high.......BUT within the hba1c's...you do need to be trying to achive levels without high or low swings.......it would be fantasic if a hba1c of 7.8 for example meant that we were stable at 7.8 at a constant for 90days....but it doesn't......more than likely swinging between 3 and 11.......


You talk of whole units being given.........I am not sure on this...for basal injections...but someone will come along who is sure......whether you could get a pen that delivers 1/2 units....other than that I would be asking the nurse to consider that a pump would make things a lot more easier to manage.....and to go on a dafne course asap........
 
jopar said:
Looking at what you are saying it does seem if your daughter is very insulin sensitive which could be problematic with MDI (the levimer/novarapid regime) due to 1 unit dropping her too low, so perhaps she might gain better control if she went onto pump therapy which has a amazing ability to very finely dose to suit indiviudal needs..

I would speak to your team about the merits of pumping
Click to expand...

Yes that is another thing that worries me, the fact that she is only needing tiny doses!
Recently been given half unit pens to try and gain a bit more flexibility with the doses.
There is just no pattern in her readings at all the last few months, somedays aren't too bad but other days are just really odd!
Today:
8.1 at 8am, 2 units of humulin m3
same breakfast, morning snack and lunch as usual, spent 2 hours on the trampoline after lunch
21.5 at 5pm - no idea why she would be that high, it is a rarity
gave 1 unit of novorapid and 1.5 units of humulin m3 because she was having more carbs for dinner than normal
5.5 at 8pm so given her milk and a digestive and will see if she gets up low later!
 
Research for a parent prior to asking for anything regarding diabetes with HCP's is a must...(as with anything to be honest)...you must be aware of the full in's and out's before asking for MDI/pumps etc.......not just us adults on a forum......as Jopar says, if adjusting a mixed insulin...counterecting hypo's or hypers one time, may give hypo's or hypers another time......

There are a lot of parents of children here that have been through the same as you and your daughter.....you will get more help coming along....just that weekends, are a little bit quieter than weekdays......
 
Just a tip, test more frequent...get enough strips from GP to allow for this.....

testing at 8am and 5pm if this is it for that period is a little bit on the low side.......please don't get me wrong....personally I would be testing 2 hours after ANY meal, as soon as getting up, and always before bed...that would make it a minimum of 6-8 times at least a day.....

Otherwise you will not be able to see exactly what happens with food and exercise....
 
donnellysdogs said:
The thing is though, to be quite honest-is that your daughter is going to be type 1 for the rest of her life...not just short term.....it is a huge step initally, and I fully understand why children are put initally on to a mixed dosage before a basal/bolus regime and (if they are lucky) on to a pump....

It is huge for a 9 year old to come to terms with, and for yourself as the parent. I think the most important thing at this stage is to get your daughter and her care plan to recognise that HYPO's DO AND WILL HAPPEN.....and...most importantly.....1) NEVER LEAVE YOUR CHILD ALONE if hypo....and a plan that she knows and accepts that she must do...I.e sneak 2 or 3 jelly babies......what ever she is happy with accepting and doing with the minimum of fuss......

You talk of whole units being given.........I am not sure on this...for basal injections...but someone will come along who is sure......whether you could get a pen that delivers 1/2 units....other than that I would be asking the nurse to consider that a pump would make things a lot more easier to manage.....and to go on a dafne course asap........
Click to expand...

She is 11 now and everyone (apart from the hospital) expect her to be able to completely manage it herself. She copes with it really well now, test and injections she just gets on with, never complains if she has to go without things that others are having. On the other hand though, i have to always remind her when to eat her breakfast and her snacks.

She is never really left alone and certainly not when low, i make her sit down until she is back up in normal figures and then let her go back to playing or bed.

Yes we have recently been given half unit pens but even half a unit difference seems to be too much sometimes.
I did ask about a pump and her nurse said that would be more work!!
They keep talking about genetic diabetes and doing all these tests but then nothing more gets said.
 
donnellysdogs said:
Just a tip, test more frequent...get enough strips from GP to allow for this.....

testing at 8am and 5pm if this is it for that period is a little bit on the low side.......please don't get me wrong....personally I would be testing 2 hours after ANY meal, as soon as getting up, and always before bed...that would make it a minimum of 6-8 times at least a day.....

Otherwise you will not be able to see exactly what happens with food and exercise....
Click to expand...

I know, normally we test more than that.
School days we test before breakfast, after school, before dinner, before bed.
Weekends and school holidays i test at lunchtime if her activity or meals are going to be different.

I never been told to test after meals, in fact when she was discharged from hospital following diagnosis i was only told to test before breakfast and dinner!!! I soon added in testing after school as she doesn't always need an afternoon snack and before bed as sometimes she needs a bigger snack. The GP's complain enough as it is over how many test strips we go through.
 
donnellysdogs said:
Research for a parent prior to asking for anything regarding diabetes with HCP's is a must...(as with anything to be honest)...you must be aware of the full in's and out's before asking for MDI/pumps etc.......not just us adults on a forum......as Jopar says, if adjusting a mixed insulin...counterecting hypo's or hypers one time, may give hypo's or hypers another time......

There are a lot of parents of children here that have been through the same as you and your daughter.....you will get more help coming along....just that weekends, are a little bit quieter than weekdays......
Click to expand...

Thanks for all your replies, appreciate anyones opinions!
We don't mind the strict routine with the twice daily injections but if changing to MDI would make her more stable then it would be worth the extra work.
I am going to talk to her about it over the next few days and see what she thinks about it, i have to ring the hospital thursday afternoon to discuss it.
 
Well, that is fantastic...honestly the fact that she is is quite prepared and willing is brilliant.

The only reason I say not be left alone....is when first diagnosed whilst somebody from a shop that I was managing was phonging my then boyfriend to find out what to do.,.....I went wandering...out of the store with the store keys and safe key....!!!! (whoops!!!!).....so it is the first thin on my hypo list of things to do and NOT to do when treating me!!!!!

The pump is more work initially, but does give better, more stable results longterm.......and it is longterm that you and (your daughter) have to be comfy with..........


With your daughters sensitivity to insulin,,,,,I would be asking for a pump that manages to pump as little as 0.05 and hour which would make a huge difference.....as a background insulin and very much smaller doses of correction boluses and food boluses..

With your daughters sensitivity, I would personally be looking towards a pump...but it will need more research and certainly some advice from other parents here.....
 
Blood strips:-

Ask your DSN (or consultant) to write to your GP requesting them to prescribe more strips and for them to stipulate a minimum quantity.....mine wrote to my GP asking him to precsribe 300. nI have never looked back.

You of course need your DSN and Consultant on board that you need and want to test to be avble to identify what is happening during the day, and if this needs testing every 2 hours, then that is what needs they must do....

You are currently on a uphill battle, but be sure you will get there....honest...
 
donnellysdogs said:
Well, that is fantastic...honestly the fact that she is is quite prepared and willing is brilliant.

The only reason I say not be left alone....is when first diagnosed whilst somebody from a shop that I was managing was phonging my then boyfriend to find out what to do.,.....I went wandering...out of the store with the store keys and safe key....!!!! (whoops!!!!).....so it is the first thin on my hypo list of things to do and NOT to do when treating me!!!!!

The pump is more work initially, but does give better, more stable results longterm.......and it is longterm that you and (your daughter) have to be comfy with..........


With your daughters sensitivity to insulin,,,,,I would be asking for a pump that manages to pump as little as 0.05 and hour which would make a huge difference.....as a background insulin and very much smaller doses of correction boluses and food boluses..

With your daughters sensitivity, I would personally be looking towards a pump...but it will need more research and certainly some advice from other parents here.....
Click to expand...

She has only got really confused when low once, i wanted to pick her up from school at the top of the road so i was sat in the car waiting for her but she was low at the end of school and hadn't realised and ended up walking the wrong way down the road just following a group of children!!
Ever since then i have always told her to wait at the school office and i will pick her up from outside there as it is safer.
Never had to use the glucose injection but do use the gel quite a bit.

Re: test strips, i did manage to get them to up the prescription from 50 a month to 200 a month with her nurse giving the manager a lecture down the phone.
She has just changed to the accu-check mobiile as i was finding it hard holding everything when she needed to test while we were out whilst making sure my little one wasn't running off but they have only given us 100 tests at a time on the prescription. I will see if they will up that.
 
Yes pumps and MDI is on one hand more work, more so getting yourself up and running on that regime but then once you've established a routine it does get easier..

The merits of MDI/pump is that now she's almost a teenager (boy does time go fast) so not only if she hasn't already started pubety she will do, and the 'non existant' social life of a teenager these two methods will help her to have more flexibity, the pump the most has not only will can you react to raging teenage hormones a lot more easier, you don't have to go home because you haven't got your insulin to stay :roll:

School does sound like a nightmare... I think it's a case of requesting meetings with the head and also the special needs co duffer not sure what they are called, to sort it out and if they fail keep calling meetings with them until it's resolved, hopefully one of the other mum will see this and give you more information concerning this part..
 
jopar said:
Yes pumps and MDI is on one hand more work, more so getting yourself up and running on that regime but then once you've established a routine it does get easier..

The merits of MDI/pump is that now she's almost a teenager (boy does time go fast) so not only if she hasn't already started pubety she will do, and the 'non existant' social life of a teenager these two methods will help her to have more flexibity, the pump the most has not only will can you react to raging teenage hormones a lot more easier, you don't have to go home because you haven't got your insulin to stay :roll:

School does sound like a nightmare... I think it's a case of requesting meetings with the head and also the special needs co duffer not sure what they are called, to sort it out and if they fail keep calling meetings with them until it's resolved, hopefully one of the other mum will see this and give you more information concerning this part..
Click to expand...

Yeah i'm thinking that eventually i would just remember how many carbs is in most things, visualising it on a plate when eating out is where i get lost - scales and packets at home i am ok with mostly.

Last year was not too bad as she had a brilliant form teacher but this year her form teacher doesn't want to know, told me he doesn't need to know anything as he only teaches her once a week.
She is currently at a middle school which she will be leaving at the end of July and starting at a high school in September. I have not spoken to them about her yet but apparantly 1 of the women in the office has a type 1 daughter so she might be able to help her if she gets in a muddle.
 
phoenix said:
Also push fot those genetic diabetes tests. Obviously if it has been mentioned then there is a possiblity of MODY . http://projects.exeter.ac.uk/diabetesge ... y/info.htm

If she is truly T1 then it may just be a process of changing insulin needs; MDI would be more flexible and a pump even more so, but she'd need to test more ofen.
Click to expand...

I am trying to get them to do blood tests, they also mentioned about testing for antibodies but again it never happened, all they have tested for so far is thyroid function which was normal.
When i ring them Thursday i am going to ask again about these blood tests!
 
You should really already be in contact with her new school, going through a care plan of her needs so it's all in situ for September when she starts, I would give the new school a bell concerning this..

It is likely if it's a larger school that there are some T1 pupils there already, so they may well already be well versed in needs etc... Good that the secratary has the experience of having her own daughter with T1, as she will be a wealth of support for your daughter and the school staff...

Must admit he teacher does have a poor attitude and I would myself made a complaint about it, fair enough yes he's only teaches her once a week, but hey hypo's don't happen to a time table, so he needs to recgonise one and know how to treat it... After all it's likely at some point he will have another diabetic in his class in the future!

I would also take a copy of the link that Phoenix gave to take along to your team to discuss with them, and push for those blood tests, one is a GAD test which they test the anti-bodies and the other main one that helps with typing is C-piptide test..

And I would encourage your consultant if he can't work it out, then speak to Exeter who have some very knowleageable consultants who maybe able to help him/her work it!

Sometimes you just got to keep nagging at them sadly

P.S

Yep when we are out and about, we do guesimate our carbs and you do get to know the amounts of food often eaten, then with doing the weighing at home does help up to keep an eye in, when we have to guestimate our carbs..
 
jopar said:
You should really already be in contact with her new school, going through a care plan of her needs so it's all in situ for September when she starts, I would give the new school a bell concerning this..

Must admit he teacher does have a poor attitude and I would myself made a complaint about it, fair enough yes he's only teaches her once a week, but hey hypo's don't happen to a time table, so he needs to recgonise one and know how to treat it... After all it's likely at some point he will have another diabetic in his class in the future!

And I would encourage your consultant if he can't work it out, then speak to Exeter who have some very knowleageable consultants who maybe able to help him/her work it!

Sometimes you just got to keep nagging at them sadly
Click to expand...

Yes, i was going to ring the new school to set up a meeting about her but i have been waiting for the hospital to decide what to do with her! She will be going for a trial day in July so i will need to speak to them before that, i will see what the hospital say when i ring them thursday and then speak to the new school the week after.

Yes i was not impressed as her form teacher last year wanted to know as much as i could possibley tell him. Her form teacher sees her every morning and afternoon for form time and is supposed to be the first point of call if there is a problem and i have complained to the deputy about it but nothing ever gets done.

Oh i will see if they can speak to Exeter then, thanks for all your help
 
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