# Not feeling optimistic.



## ruthelliot (May 16, 2010)

Got another clinic appointment tomorrow - our 2nd since changing hospitals.Initially things seemed to be getting a bit better and we have followed everything we have been told to do to the letter but Sitting looking through Ben's results over the last wee while and i don't think it makes for very good reading. The last few days in particular have been rubbish - he's been running really high - up in the high teens and any time we try to correct him he stays high for three hours then crashes down 4 hours after his insulin and hypos even with only a tiny correction. Then next time we dont correct and he stays high. He's fine in himself but I'm not holding out much hope for an improvement in his hba1c. Last one was 8.4 and going by the last few weeks who knows what to expect. He's still hypoing most days and nights have gone to pot too! Seems the harder we try to get this right the worse we get!  Thinking of employing a trained monkey to give it a bash!!


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## Kei (May 16, 2010)

(((Hugs)))  I'm sorry things are so hard for you right now.

F is having a similar problem.  Her last HbA1c was similar to Ben's.  
Her numbers are up and down like nobody's business.  Her consultant thinks it may be a combination of lumpy injection sites in her bottom which means the insulin isn't absorbing properly (so only injecting in her thighs for now) and not treating exercise correctly.  

The exercise thing is a problem.  Apparently we're meant to foresee whether she'll do any exercise or not, and give her 50ml orange juice if she definitely will, and nothing if she definitely won't.  Of course, life isn't like that.  F will go out into the garden saying "I'm going to scoot up and down for AGES" so we give her something, then she gets distracted and spends an hour playing a game that involves sitting still.  Result:  hyper!  Otherwise she takes a book out into the garden, intending to sit still for a few minutes, then spends 20 minutes running around with her brother instead.  

I think that monkey needs to be armed with a crystal ball.


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## jimmysmum (May 16, 2010)

ok im in line for a turn withthe monkey please, after ruth & kei of of course...Jimmy is doing really well, always has to be fair but hes still in honeymoon and i know this can have a heavy influence but Daisy's levels are crap...we've upped her rapid & Levemir doses this weekend and shes still high and were correcting, my guess is shes coming out of the honeymoon (the honeymoon of which they said she wouldnt have bcoz shes so little) anyway please put me on the monkey lst until our pump (s) arrive  x


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## Heidi (May 17, 2010)

Okay, where are they handing out these monkeys because we want one too! 

Ross is all over the place most of the time. We took an executive decision last week to give an extra unit of novorapid when he was really high - of course he crashed a while after. The DSN said that as he's still in the honeymoon and he's still all over the place we can't safely give corrections. We can't even begin carb counting properly because he's not settled yet. 

*sigh*

Oh, and add into that Ross being furious most of the time....


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## rspence (May 17, 2010)

*ruthelliot you're a star*

Right I'm also joining the queue for the trained monkey taking on JP's diabetes medication cos quite frankly I don't get it one single bit. I think ruth has hit on a good idea - maybe we could do something creative with the monkey thought....

He was hypo this morning, I only let him have half the breakfast he normally asks for cos we were running late, we give a 1:20 dose of novorapid and at nursery lunchtime he was 23.8 huh??

I'm loosing the plot now.....clinic on friday.

ruth - I'm with you 'the harder we try the worse it gets' and drains us all in the process emotionally and physically. hope you have a better today, 
rachel


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## ruthelliot (May 17, 2010)

good to hear the same gripes from you guys - esp the exercise thing - so he goes high with excitement but low with exercise so what if he's excited coz he's running about! So anyway - update - good news - last hba1c was actually 8.2 not 8.4. Bad news - it's now 8.4!! Today actually went well in some ways. Our new team are lovely and much more clued up. On the down side they're not brimming with ideas as to how we can make things better. Though just to have them agree with us and confirm much of our thoughts is a welcome change. We have thought for a while Ben is still randomly chucking out insulin at times despite being diagnosed 18mths now and our last team said pretty much dont be daft but our new doc says absolutely he is and concedes this will make things tricky. they also say he is a prime candidate for a pump - but guess what - it seems we have more chance of getting funding for that monkey! So anyway I'm off to e-mail my MSP again in the hope that we can get this monkey in situ before Ben starts nursery. Have cleared the spare room and installed some monkey poles out the back in case we need some kind of home inspection Since the guess the hba1c is not any fun just now I'll invite suggestions for said monkeys new name........


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## Adrienne (May 18, 2010)

ruthelliot said:


> good to hear the same gripes from you guys - esp the exercise thing - so he goes high with excitement but low with exercise so what if he's excited coz he's running about! So anyway - update - good news - last hba1c was actually 8.2 not 8.4. Bad news - it's now 8.4!! Today actually went well in some ways. Our new team are lovely and much more clued up. On the down side they're not brimming with ideas as to how we can make things better. Though just to have them agree with us and confirm much of our thoughts is a welcome change. We have thought for a while Ben is still randomly chucking out insulin at times despite being diagnosed 18mths now and our last team said pretty much dont be daft but our new doc says absolutely he is and concedes this will make things tricky. they also say he is a prime candidate for a pump - but guess what - it seems we have more chance of getting funding for that monkey! So anyway I'm off to e-mail my MSP again in the hope that we can get this monkey in situ before Ben starts nursery. Have cleared the spare room and installed some monkey poles out the back in case we need some kind of home inspection Since the guess the hba1c is not any fun just now I'll invite suggestions for said monkeys new name........



Hi Ruth

Re the pump funding, not sure the consultant knows exactly what he is talking about (sorry).   If a consultant says a person needs a pump then the PCT HAVE to fund it.   There can be no argument from the PCT.  They have to stump up the money.   They can argue re the sensors for a CGMS attachment but if the consultant knows what he is doing and you go for a Real time pump then he can wangle sensors anyway.   However if he writes and tells the PCT he is ordering you a pump and it costs x amount they have to pay.    

Just thought I would let you know that bit.    Take a look at www.input.me.uk


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## Akasha (May 18, 2010)

Is it only parents that can get this monkey?  

Hedi, sorry to question
why is the hospital telling you that you cant carb count for your son until his levels have settled down? The whole point of carb counting is to help level out your levels.  

Sorry to hi-jack your thread Ruth.


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## Kei (May 18, 2010)

Heidi said:


> We can't even begin carb counting properly because he's not settled yet.



Yes, I've only just noticed this sentence.  We were taught carb counting by the dietitian the day after F was diagnosed, and began it the moment F came out of hospital 5 days after she was taken in with DKA.  Her levels were SO high at that point that a hypo seemed like an impossible dream, but we were carb counting from the first meal when we got home.

Ruth - Sorry it wasn't a great appointment.  LOVE the monkey poles idea.


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## rspence (May 18, 2010)

*and us - carb counting from the beginning*

heidi- i hope that some of us sayng about carb counting from the beginning gives you the chance to ask your team why they are reccomending not carb counting for you son - they prob have reasons but like others have said we did it from the day we came out of hospital with JPO and like Kei's daughter he had DKA and high levels.

that said even with carb counting his levles are still all over the place so grass not necessarily greener on other side!! 

Akasha: no i reckon anyone can join in the monkey business - providing you happy to buy plenty of bananas!!

rach


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