# Dont know where else to turn to



## seven4774 (Oct 21, 2014)

Hi all, we are in need of your help and advise as we have a newly diagnosed T1 7 year old. The nurse we have been assigned doesn't bother to ring us back and is completely unconcerned that we have been having daily hypo's and that daughter is completely unaware of these. She does alot of ice skating, which she loves and i usually cant get her off the ice until the machine that cleans come on to scare her off  We are not prepared for diabetes to rule her life and we need to fit it round her skating but we are seeing delayed hypos and levels down to 1.9 and 2.3 !!! what have other people found that work for high intensity exercise, we carb count but what ratio reduction do people find work for exercise ? 
Please advise needed as we are not getting the help from the professionals


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## Northerner (Oct 21, 2014)

Hi, welcome to the forum  What insulin is your daughter on? Unfortunately, it can be a case of trial and error determining whatr reductions you need to make for exercise as people's ratios vary considerably, and the type of exercise may also be a factor. The key is to test regularly, work from previous experiences and keep plenty of hypo treatments around. When I was diagnosed I was determined to get back to my running, so I would test befrehand, then every 30 minutes, taking care to 'top up' with a jelly baby or two if I felt my levels were a bit on the low side and risked a hypo. Eventually, I have reached a point where I don't have to test as frequently as I am familiar with how my body will react to different types of exercise. With a young child it is especially difficult, as there may be other factors such as growth spurts that may muddy the water.

I would recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, which is an excellent reference guide covering all aspects of Type 1.

You might want to also take a look at the Children with Diabetes website, which operates an email list for questions. I'd also consider looking for a different clinic if you feel the team you have are not helping you - things are difficult enough with a young child, and you need to know you have good, dependable support available when you need it.


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## seven4774 (Oct 21, 2014)

She is on Nova rapid and 1 unit Lantus (nocte). we have been told off for testing too much and then told off for not testing enough !! cant win 
We have the same isssue as she has been a complete star at taking on board the whole diagnosis the testing and the injections. But if she lost skating i think that could all change which is why i am trying to keep her on the ice. Unfortunately this team cover all our surrounding hospitals we dont have anywhere else to go. They havent spoken to husband at all yet (not sure if thats good or bad though )


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## Northerner (Oct 21, 2014)

seven4774 said:


> She is on Nova rapid and 1 unit Lantus (nocte). we have been told off for testing too much and then told off for not testing enough !! cant win
> We have the same isssue as she has been a complete star at taking on board the whole diagnosis the testing and the injections. But if she lost skating i think that could all change which is why i am trying to keep her on the ice. Unfortunately this team cover all our surrounding hospitals we dont have anywhere else to go. They havent spoken to husband at all yet (not sure if thats good or bad though )



Well, you need to make sure that each test provides useful information - if it does then it is not a wasted or unnecessary test, so don't feel bad about testing when you feel the need! It's great that she has accepted the diagnosis so well, and all that goes along with it, and there should be no reason that she should have to give up the ice-skating, it's just a case of learning how to manage it.

Has an insulin pump been mentioned? From what you say I presume she is on very small doses of insulin, and a pump would give you and her much finer control, as well as being much more flexible and adaptable when coping with things like activity etc. I would suggest having a look at the INPUT website if you don't know much about pumps:

http://input.me.uk/

Also, you can get a referral outside of your local area if you are prepared to travel, I know that some parents travel to London and use the excellent team at UCLH - I don't know how practical this would be for you:

https://www.uclh.nhs.uk/OurServices/ServiceA-Z/CYPS/PDIAB/Pages/Home.aspx


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## Hanmillmum (Oct 21, 2014)

Hi and welcome from me 

Very sorry to hear about your daughter but it's a great attitude to adopt having D fit around her and not the other way around. You may well need to test as you do, especially in the early days as it is giving you vital information about what works and what doesn't so well, you shouldn't be made to feel you are doing too much as why on earth would you??. Exercise is difficult, as Northerner suggests, topping up with sweets such as jellybabies helps and we have the benefit of a pump where we can reduce or even stop the background/basal insulin for "x" amount of hours after exercise, Im sure everyone will be different as to ratio's for this, your DSN should be advising on a starting point given you are all so new to this. I'm not experienced with injection regime to suggest ratios. Also, there are so many variables that it doesn't always follow the plan. Keep at it. test regularly around the skating and afterwards - it could take a little time to get stability, it's trial and error and we are all in the same boat hoping that we can get things right in the shortest amount of time possible. Often after exercise we have needed to reduce the next meal bolus by 30%, for example, alongside a reduction in basal as my daughter is more sensitive to the insulin. 

Best wishes


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## seven4774 (Oct 21, 2014)

we asked about a pump but were told NICE guidance was not till she was 12. To be honest i would travel to Scotland if it meant someone had an interest in serious sport and kids  that could help as she will easily do 2 hours on the ice and then do 40 mins off ice training 3x a week


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## seven4774 (Oct 21, 2014)

Thanks Hanmillmum 

how did you get pump of was it only after several years and things settling out ??


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## Hanmillmum (Oct 21, 2014)

Worthwhile getting in touch with "input", as Northerner suggests, just to see if your daughter does indeed fit the criteria and go from there. Research other hospitals if you are still not getting any satisfaction. Kids and sports should be encouraged and supported, it's a shame if your team are not providing what is needed.


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## Hanmillmum (Oct 21, 2014)

seven4774 said:


> Thanks Hanmillmum
> 
> how did you get pump of was it only after several years and things settling out ??



More or less straight away - when my daughter's consultant came to the ward to see/introduce herself to my daughter the day after she was diagnosed, my hubby asked about it and they put her straight in for referral, which took around 3 months to complete. She was just under her 2nd birthday when it arrived and got attached, so to speak. It took a little while to get away with it, but it has been worth the effort.


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## Northerner (Oct 21, 2014)

seven4774 said:


> we asked about a pump but were told NICE guidance was not till she was 12. To be honest i would travel to Scotland if it meant someone had an interest in serious sport and kids  that could help as she will easily do 2 hours on the ice and then do 40 mins off ice training 3x a week



Well, that is clearly nonsense! I know of hundreds of children much younger than 12 who have pumps! Do get in touch with INPUT, they are really very good and may be able to advise you on a more suitable hospital and more 'pump-friendly' team. You absolutely do not want to spoil her enjoyment of her skating, she sounds very dedicated to it!  

A few years ago I read a book about a dancer with the New York Ballet who was diagnosed just as she was beginning to be recognised as one of the best. She learned to fit the diabetes in with her (very rigorous!) training and became one of their top dancers! Diabetes does not have to stand in her way, and it is a shame that her current team don't appreciate how important this can be.


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## seven4774 (Oct 21, 2014)

surprise surprise our hospital is not listed on the pump friendly list  but we have a starter for 10 thank you


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## Northerner (Oct 21, 2014)

seven4774 said:


> surprise surprise our hospital is not listed on the pump friendly list  but we have a starter for 10 thank you



Good luck in your new quest!


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## Redkite (Oct 22, 2014)

Welcome to the forum seven . I would echo Northerner's recommendation to get a copy of the Ragnar Hanas book, it has all the answers you're looking for and is brilliant for when you can't get hold of your team!

I agree that it will be much easier to manage your daughter's diabetes and ice skating with a pump, but in the meantime it's a question of extra snacks and reductions in insulin.  You don't say what time of day she's going skating.  If for example it's after tea, try reducing the tea time insulin by 25% - it will be trial and error, as if you reduce by too much, she could perversely end up with a high BG.  Be very careful correcting any high levels in the hours after exercise - we find that half the usual correction is usually more than enough.

If the skating is before a meal, you can reduce the insulin given with that meal.  My son used to swim intensively for an hour on Friday evenings, and it would affect his BG levels (downwards) for the following 24 hours.  I found that it was useful (in the days when he was still on Lantus) to give him pasta or brown rice for his tea, because this takes a longer time to digest, and therefore the rise in blood glucose from this food counteracted the tendency for his BG to drop in the hours after the swimming.

Finally, pre skating snacks - this is the chance for her to freely eat some treats such as sweets or treat size choc bars, so that she has some fast acting carb on board before she starts.


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## HOBIE (Nov 20, 2014)

Pumps rule !   Good luck


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## Maryanne29 (Nov 30, 2014)

It really does seem to depend on where you live. My hospital gives a pump to just about everyone who wants one. The old postcode nonsense again! But lots of luck getting one.


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