Newly Diagnosed Toddler onto pump?

[toddlermum]

Hi,
I'm new to this forum. My 21 month old daughter was diagnosed in December. The diabetic team indicated she would be on a pump by February, I have now been told this is on hold for several months with no definite date for when it will happen. The funding for the pump is not an issue, however lack of staff is! Due to maternity leave, they do not have enough staff to fit the pump and give us 'after care'. I can't help thinking that maternity leave isn't a good enough excuse to prevent a pump being fitted?
Everything I've read so far suggests that toddlers are one of the groups that are in most need of & will benefit most from being on a pump.
Has anyone else managed to get their son/daughter onto a pump - and in what time frame? Can you give me any advice as to how I can try to change this decision?
At the moment I'm confused, frustrated, upset and don't know what to do for the best?!

 

[Celtic.Piskie]

Putting him on a pump without adequate support and training would be far worse than delaying a few months imo.

Pumps are very new, and so there aren't that many people that have adequate knowledge to support your son, as there are many issues with living with a pump on a day to day basis.
I know it must be frustrating, but honestly, it's better that it is done properly and later, rather than sooner and badly.

 

[toddlermum]

Thanks for your reply.
From what I've been told so far the time involved is only two mornings from a nurse - then after care, which we possibly wouldn't need anyway if everything went well. Surely we, as parents, must be able to read information to understand how to manage the pump effectively? (To decrease the amount of after care as much as possible)
Plus, as stated in research it's NOW - while she is so young that the pump is of most importance???

 

[ams162]

hiya

i understand ur frustration, we have just been put on a pump mon just gone however we had a year of waiting and fighting to get the pump, in reality u are not being made to wait that long to get one there are loads of children who will have waited alot longer than u are being asked too, not having a go just trying to show u how quickly u were being offered one.

altho its new to us i can see the benefit of a pump but its alot of work and sleepless nights trying to get things right, u will need support from ur DSN so its prob better to wait till they can help u, i wouldnt say anything u are able to do would change things if they are short staffed then they are.

i would agree and say wait however frustrating u find it

anna marie

 

[toddlermum]

Thanks, it's really nice to hear from another Mum and to hear your take on it. I hope your sleepless nights quickly decrease as he (and you) get used to the pump.
I keep swinging between thinking to myself to just 'get on' with doing the injections - but on the other hand, the fact that I've read so many things saying it is essential that toddlers should go straight onto pump due to their lifestyle, unpredictable eating habits etc. I just want to do the best I can for her - it almost feels like due to her age (20months) I should be fighting for it more now than if she was past the toddler years??

 

[iHs]

Hi

I have a pump myself but I'm an adult not a child.

It's very difficult to know really whether or not you will need support from a dsn trained in pump therapy. Most of what you will need to know can now be obtained from the internet and also from reading the Pumping Insulin book by John Walsh. There is a chapter all about how to set up basal rates which is really good so even if you knew absolutely nothing, the internet and the book will see you through. Most pump companies also provide excellent training manuals with step by step instructions on what to do so most people should be ok. The only thing that you might need to be shown how to do, is putting an infusion set in but even that can now be seen over the internet.

For some reason or another it appears that we have become a nation of people needing someone to watch over us Grrrrr lol

 

[ams162]

thats ok didnt want u to think i was being harsh in saying u havent waited that long it wasnt intendid to be we are all here to support each other

its not a quick thing to be put on a pump and its not an easy option either we had 4 years of injections behind us before we got our pump and had to go on a carb counting course and prove we could do it before we were even considered, and in that 4 years dylan had terrible control with hba1cs over 10 all but one time (that being 9.7 lol) and it wasnt through lack of effort either i worked really hard with no luck but now we are lucky enough to say we have a pump and altho we are on the long road to getting all the basals and boluses right i can see the benefit of a pump.

hopefully u will get ur pump and a few months wont make that much difference to ur daughter in the mean time keep ur chin up

anna marie

 

[toddlermum]

Thanks so much for replies - I will look into getting the suggested book, so extra thanks for that suggestion!
Great to have a place to just air your thoughts - and I've had so many whirling round my mind!!!

 

[Hazza]

Hi, my daughter is on a pump from December 2nd and yes it is hard work but the knowledge that you gain from doing injections and learning to count carbs is a very good grounding for starting on a pump.
Learn as much as you can and use your time to research. This forum has a wealth of knowledge spread amongst its members who are only too happy to help. Another very good book to get is "Carbs and Cals" we got ours from Amazon for about £12 and it is the best book we have ever bought, but "Pumping Insulin" comes a close second.
All the best and good luck

Harry

 

[toddlermum]

Thanks, just ordered Pumping Insulin from amazon, will have a look for carbs and cals too - thank you!
Do you mind me asking how old your daughter is? And how long she has been diabetic? Did you have to wait a long time for the pump?

 

[Hazza]

Hi, my daughter was 8 last week and she was diagnosed on 2nd June 2010. We got a pump after 5 months but kept nudging them. We are lucky to live in an area that is forward thinking and supports the idea that pumping is the best way for children to manage their diabetes.
We are full of praise for our diabetics team and have had so much support from them.
I hope you get one soon but as I say, use the time to learn all you can. Doing injections is a good skill to learn in case the pump ever goes wrong.

Harry

 

[annettekp]

Hi

My son was diagnosed a year ago aged 20 months. We were also told that a pump would be the best way to go. Unfortunately our NHS board have yet to agree to funding the pump although its been put forward at their monthly meetings since September. Due to the current financial climate...etc... Its infuriating, but we're continuing to ask for it. Our diabetic nurse is very forceful!

My friend's daughter is on a pump and she says its one of the hardest things she's had to adjust to and that was with the excellent support of the diabetes team. She also says its the best thing they could have done for her daughter.

As Harry says learn all you can and keep asking.

Annette

 

[toddlermum]

You must be beside yourself having to wait that long...and continuing to do so!
I agree the learning that you do whilst on injections must be really beneficial, as you and Harry say. We will keep reading and learning as much as we can while we wait.
It just makes it all the more frustrating when you read that toddlers should definitely be on a pump isn't it? Are you using limited injection sites for your son, as we are? That's another thing that makes it harder I think, less rotation opportunity!! Our daughter is such a skinny little thing - it's hard to find a suitable place to inject!!!!
I wonder what the exact difficulties are of going on a pump - is it just correct dose? Correct inserting of the cannula? The programming 'technical' side?
Have you been fighting hard? Any tips on who best to put your case to?

 

[ams162]

from my last few days experience getting the levels right is the biggest challenge but because u can alter the basal rates so much having many different time slots its hard to know where to start. i would think starting it with a toddler would be difficult as they cant always explain how they feel im not sure that i could of coped with a pump straight out with no understanding of diabetes at the age of 4. but at 8 he recognises hypos and can operate the pumps boluses himself which is great for school.

i hope u dont have to wait too long but dont be disheartened it really is normal to have to wait a bit for a pump very few get one straight out although being on a pump is becoming more popular

anna marie

 

[donnellysdogs]

I am an adult I know.....however, I personally think that 4years and older would be easier for pump management...only on the basis of: the constant monitoring needed by the parent, and the understanding of such a young child, and also the tubes and actually having a pump permanently attached to somebody so small. I know that I have accidentally had my cannula ripped out of me three times, and boy I knew it had happened!!!

I believe it would put a huge amount of pressure upon the parent, who also has their own lives as well, and for child care as well by others. Personally, I would not want to be pumping for such a young child......

 

[toddlermum]

Hmmmm...interesting...that goes against research I've read re: toddlers being put onto pumps. Interesting to hear your opinion on it tho.

 

[toddlermum]

Just found this poem - struck a chord with me....


She walks down the hallway in silence so deep,
Keeping watch over her, as her little one sleeps.
With meter in hand, she opens her door,
Making sure not to wake her as she crosses the floor.
She sits on her bedside and brushes her hair,
As she dreams of fairies, without a 'D' care.
She holds her hand softly; her fingers so small,
As she watches and wonders why 'D' came to call.
While she watches her sleeping, so peaceful and warm,
The forces inside her fight a constant 'D' storm.
Will she ever be free of shots and blood testing?
She sits and she wonders as she watches her resting.
The beep of the meter breaks the silence of the night,
A small drop of blood tells if everything's right.
The seconds count down to the final display,
I hate this **** meter; I want to throw it away.
The number is fine, one down, a lifetime to go,
As she turns in her sleep, will she ever know?
Why does this 'D' happen to someone so small?
My daughter's my hero, but my baby most of all.
She turns at her doorway, looking back one more time,
It's a nightly routine of the very worst kind.
She walks down the hallway and time passes by,
As she sits in dark silence and quietly cries.
I have to stay strong, and for her I will fight,
We'll battle this 'D' with all of our might.
I'll teach her to master and conquer this foe,
This 'D' will not stop her, I promised her so.

 

[leggott]

I have 2 children with type 1 and we have been trying for some time to get them pumps. Our Dr reckons that they should both be pumping in the next few months!

My husband and I never quite understand why small children aren't automatically put on pumps. My husband also has type 1 for 25 years now and he personally doesn't like the idea of being connected to a pump. After managing 2 kids for nearly 2 years we can see so many positives from pump management in kids.

My husband has excellent control and although the diagnosis of our children came as a massive shock, we knew we had a wealth of knowledge and could manage the condition, but after a few months it soon became clear that managing kids is far harder than managing diabetes in adults.

For us pumping would give so much more flexibility therefore leading to tighter control. I know that pumps are not the magic answer, but here is a small list of things that a pump would offer to our kids:

Allow us to administer small amounts of insulin as when my son was first diagnosed a 1/2 unit would
reduce bg by 8 mmol. Correct at night without injecting if high, lower basal if too low rAther than waking a sleeping child and making them eat. Give greater flexibility over young children finishing meals and activity. Correcting when ill as children get more colds especially at pre- school. Being able to check if you forgot to bolus for a meal rather than waiting 2 hours to take a reading and then correcting. And finally allow us to deal with the dawn ph when a young child can sleep for 12
hours.
It won't be long before pumping will be the only option and injection pens will seem so out dated. As parents we want the best for our kids and I would fight for what you feel is the best option for your child. Everyone will have their views, but at the end of the day, you are the ones dealing with this and trying to get the best control possible with the best tools available.

 

[toddlermum]

Thank you SO much for that - your views echo exactely how we feel. My sister is type 1 diabetic, so like you I had some experience of diabetes (if a bit rusty) before our daughter was diagnosed.
Your absolutely right - we all just want to do the best we can for our children.
Thank you, your post has given me a real boost