6 months struggling on pump.

[parentofpumper]

My daughter has been on the pump for just over 6 months. She loves it would never dream of giving it up. We decised to opt for a pump due to 6 injections a day. bad hypos and little control. We know how lucky we are to get a pump,

BUT her controll is worst than ever. Her weight is going up. Not overweight but diabetic team express conserns. Her insulin consuption has doubled in this short time. We have 2-3 weekly clinic appoinments where they always increase insulin and still getting results in 30s.

Any ideas.

 

[jopar]

How old is your daughter and would the weight gain put her above a healthy weight!

Some pumpers do find that they increase their weight slightly when for the first 6 months or so, then it settles down, a lot of this is because their MDI control has been erratic had kept the weight down and the pump giving better control sorts of balances out the weight to a truer level!

She could be in a bit of a circle, if her weight has increased the fat levels could make her more insulin resistent so needs more insulin to keep control, and some of the weight could be if she's still having problems maintaining control with the pump then she could be feeding the insulin, both can lead to unnessary weight gain..

I would also check what type of foods she is eating, as the freedom of the pump, and the hearing the phrase 'Eat what you want' she may be taking too liturally, even with a pump you still have to eat within reason...

But I would get yourself a book called Pumping Insulin by John walsh (Knwon as the pumper bible) this will give you a lot of information about using the insulin pump, how to set good basal rates, how to work out insulin/carb ratio's and tackle many different situaltions with a pump, very usefull book for understanding how insulin pump therapy works.

Hopefully it may help you gleam some light to why your daughter is putting on weight etc, and see how you may tackle it all.

 

[donnellysdogs]

Are the 30 levels frequent or intermittent? Have you found the 30's are after certain foods?-do you make a note of when these 30's are occuring? For example....in the back of my log book I make notes about foods...for example for the first time since going to a pump I had a sausage roll...and it really threw me levels high when normally I would not be....so I make notes all the time on the reactions I have to foods...and so I can readily remember what causes me high's what they were and when they were and what I did about them...and more importantly what I should do about them.

Incidentally ...how old is your daughter?

Have you had a full play around and comfortable to make changes yourself to basal, bolus, ratios etc or is everything guided through your DSN to making changes....? It is just that for me I believe that DSN's only get a quick snapshot of our life's.

What pump is your daughter on? Again I only ask because I know only from being an adult and having had some problems that I noticed a particular batch of sets were making me go high every other night at 2am...and yet I wasn't changing basals or anything between good nights and bad nights...I then went over to changing the sets every day...notified Accuchek and got free replacements sent of a different batch number and no problems since....the sets I refer to were also causing me pain, not when putting them in...but hours later and at all different times..and the cannulas had a sort of irritable feeling as well. I assume that these levels of up to 30's have been pretty much consistent from when you started...but if they aren't then it may be something to think about.....I could prove this as every time I do a set time, I write where it goes, at the top of the left side of page so that it is easily seeable...

Penultimate question is are you sure that levels of 30 aren't occuring after cartridge changes...I always band and reprime my pump after 4 hours when putting in a new cartridge as I know bubbles will have formed....and I have had them go down the line, despite always facing downward all the time.

Final question....are the high's after a low? Only that children if set up and told to have adult hypo stoppers can find that they really do not need so much as us adults.....

Sorry to ask so many questions..I supect that you have had most of them checked out by DSN....but there may be something that hasn't......

 

[parentofpumper]

She used to be high after pancakes, porridge or rice but now no pattern. I gone back to keeping food diaries in an attempt to help.
She is 12 year old.
She is on the roche accu check combo. We have tried changing cannular after two days but made no difference so gone back to 3 as this also improves her mood. Its as if we increase bolus and basal, we see a slight improvent then after a few days its all over the shop again.Will try priming after few hours of a change.
Will make more accurate records of everything - sites, ect good idea- thanks
She isnt getting any lows. Lucky to get single fingures. The nurse just says pubertity does funny things but the dr reminds me regularly that if hab1c doesnt improve they will take pump off her .

 

[donnellysdogs]

As she is 12, are you 100% positive she is not having an extra without a bolus.........not being awful...just being realistic...do you find highs are after going to school or coming home..do you take her or does she walk with friends etc......I been a teen....and not a particularly good one either.....TBH I spent my dinner money instead of giving it to teacher I said I had a packed lunch and bought sweets instead.....Not saying that your daughter is an example of me by a long chalk....but got to ask the question....

Also is there set days...is there any patterns to these set days and especially times....I take it that your daughter is using the flex links.

Finally are you 100% sure that your daughter is getting her bolus's etc when with friends and school etc......do you ever go back and check the view data screen to make sure the bolus was done????-

What is her current hab1c?

I am sorry that I have asked such questions, but I think it is best to look at everything.....

Make sure you mark in booklet when you do cannula change, cartridge change, and reprime after a few hours....even taking off for such things as swimming and having baths etc.....all of this to me really needs to be looked at , as well as the thought of puberty.....

(Ps...Mum...if ever you read this...sorry-she's never been aware of what I did with my school dinner money!!!)

 

[donnellysdogs]

Last questions....

Are higher levels literally every few days after normality-or are they more on perhaps schooldays than weekends?

I take it that you have tried all the basal and bolus changes....ratios etc.....has your nurse one of these gizmo's that she could download from the pump to her pc and the gizmo suggests basal rates to be given....it may even do more than this..but this is what my nurse checked out this week with me with her new gizmo.....and I do have to say that the new basals for the daytime have tweaked superb..........my nurse offered me the option whether to try them or not....I tried and they have tweaked superbly for day...and not quite so well for night....but the new DSN gizmo my DSN had was certainly worth trying...

Sorry for asking such indepth questions....and certainly don't mean to cast doubts on your daughter at all, but thought some of the questions have to be asked to be sure.....