11 month baby Type 1

[Clorinda]

Hi,

Just introducing myself (have already posted on intro board).

My 11 month old baby was diagnosed 2 weeks ago with Type 1. He was put straight onto a pump, and this seems to be working really well for him. He was very sick, but now fine.

We are all in shock, but coping. The NHS care has been fabulous.

I've had a look back at some of the posts, and seen what you've all been discussing.

If there is anyone out there with babies/babies now older then I'd love to get some moral support or words of encouragement!

Clorinda

 

[Jen&Khaleb]

My poor bub was diagnosed at 8 months (now 3 yrs 7months). He was also very ill and spent time in intensive care with his bsl of 86. It is certainly hard in those early days, weeks and months but diabetes does become part of the family and things do go back to pretty normal. Maybe I've just forgotten what life was like before diabetes moved in.

We are doing it a little tough at the moment as Khaleb has been fairly ill and is going for further tests next week. He's also got Down syndrome and hypothyroidism so his problems are multiple.

The biggest advantage of being diagnosed young is that your child never knows any different. Khaleb holds out his finger for pricking and signs for food afterward. He doesn't love the injections but really doesn't make much of a protest. Diabetes really hasn't had a huge impact on his life. I, on the other hand, am very tired (sure you are too).

Well, I can't help you with any pump related stuff but it is really great to chat with other parents about what we and our kids go through.

 

[Clorinda]

Hi Jenny,

Thanks for the welcome and moral support.

Yes, I am very tired at the moment, mostly from worry! Everyone, like you says things get back to normal (well as normal as possible with Diabetes).

Sorry to hear Khaleb is unwell at the moment. Sending you good karma.

Clorinda

 

[annettekp]

Hi Clorinda

My son was diagnosed this February aged 20 months. Its all such a lot to take in isn't it?

Jen is right in that its your life that will change not your baby's. Erland's life hasn't changed that much apart from the blood sugar testing and injections which he is handling no problem. Mine on the other hand has! And I don't always cope as well as I would like to (was going to type should there).

We are talking about getting a pump for Erland. I'm not sure at the moment if we're ready for something new. I spent a day hooked up to a pump which was interesting and I've read that blood sugar is easier to control with one. Where do you put the pump? Have you got a special pouch or is it just tucked in somewhere?

Annette

 

[Clorinda]

Hi Annette,

We have been putting the pump patch on his thighs alternating legs every 3 days. It does seem easy to control BG though we are just starting out and he's still up and down a bit. But we have been tweaking the bolus wizard and other similar settings and getting there. It's good because only today I've been doing a few correction boluses and they've been 0.1 of a unit - just not possible with injections. Also, he can eat pretty much anything he wants, when he wants. Just type it in, and the wizard takes care of what insulin he should get and takes account of any previously still-active insulin in his system.

We pretty much have his basal rate at night sorted. It's really good because you can change the basal every half hour of the day.

At the moment we put the pump into a pouch that goes around his waste (bit like a bum bag). He doesn't notice it at all. You can also get a back pack carrier and we are going to order one of those. At night he sleeps in a Grobag so I just hook the tube inside then out of his nappy (at the side) and the pump goes into his grobag. The pump company gave him a little lion soft toy that you can put the pump into at night (apparently it follows the child around the bed).

We weren't sure when the consultant suggested the pump, but my husbands friend's son waited 3 years for a pump and said it completely changed his life.

The only downside is you have to change the patch every 3 days, and we are getting numbing cream on prescription for our son because he usually howls when we put the needle in.

Swapping it over isn't too bad though, but there is a part of you that wonders if it's working every time you swap it over and you have to do blood glucose after an hour of new set. At least with Levamir injections, you know they are getting it.

I'm happy to answer anything else you'd like to know. Where I live in the UK they don't give out many pumps, so we are VERY lucky to get one.

Clorinda

 

[Amanda 4 willow]

Hi,

My son was 18 months when he was diagnosed, he's now 10 year old. Just recently he's been put on a pump and I must say, my life would have been so much better if, like your little one, he'd been put on the pump from the start. 9 years ago, I doubt they had pumps, but we've had such a struggle with him because of injections, eating poorly and just about everything else.

The other comments people have said are certainly right, the young ones don't remember not having all the diabetes stuff to deal with, they just accept it and get on with life. Its harder on you than it is on the little ones. I remember it so well!
Hope you're coping well.
Amanda

 

[Amanda 4 willow]

Just had a thought about the babe howling with the new cannulas. Which sort are you using?

When we started getting Marcus ready to go on the pump, a year ago, we didn't know there were different options. I was just given one sort and told to get him to use it as a trial...bad mistake! My son is slightly autistic and has very sensitive skin, he threw a real wobbly! It took us 9 months, therapy session and almost giving up on the dream of getting a pump before we found out there are two different types of cannula insertion ways. A slow gentle way (which my son is happy with) and the fast smack sort (which he most definately isn't- though I've tried both ways and I'd prefer the fast smack myself). I liken the fast smack sort to putting a needle in a horse, you smack the skin and so when the needle goes in you don't feel the prick. You may find, your babe prefers the other sort to which ever you're using...providing your pump will support both types.

Amanda

 

[Clorinda]

Hi Amanda,

Thanks for the encouragement.

Yes we do know about the different types of canula's. The DN has been fantastic trying to get all sorts of gadgets for us to try. He's on the Paradigm Veo pump, and was on the silouette canula this was injected (slow method) at an angle.

For the last week we've been trying the QuickSet, which is a shorter, straight down and quicker to insert one and that's been better (for me too!).

We've also been given numbing cream on prescription which really works well, and stops him howling - he just flinches a bit now. They've also given us a liquid called "Sweet-Ease" which is sucrose and water. You give them a few drops just before you inject them and it's supposed to be a pain reliever. I did question the nurse over giving him sucrose but she said because its just a few drops it's fine. I do know this works, as when he was a newborn in the baby unit, they used it then. Apparently it's got clinical proof it works. Not sure how old they have to be before it stops working.

Glad your son has a pump now. It certainly helps with allowing snacks etc. We have been given some of the glucose sensors (massive needle and insertion but lasts 8 days), but because we are still sorting his basal rates etc out it's not working well for him at the moment.

 

[Han&Yas]

Hi Clorinda

I hope your well, and the little one too .. I know how you feel and the first few weeks, months are often very difficult and emotionally tiring. My advice is to remember that soon diabetes will become part of your life, and children adapt so well its truly amazing, and quite inspiring aswell.

Every new stage you go through like dealing with colds, starting nursery etc.. will be hard but it all gets easier honestly, another thing I would suggest is that when you feel unsure at all or at any stage just give the diabetes nurse a call, our diabetes nurse is such a support, I also email her or the consultant with my son's BSL at times when I think we need a quick review, and they respond straight away fortunately.

The diabetes team can be very helpfull, and also this site is amazing and I wish I had come across it at the beginning aswell.

Best of Luck,

Hana

 

[Clorinda]

Thanks Hana,

My diabetes team are truly amazing. These are the sort of people who deserve honours from the Queen, not pop stars and actors!

We have always intended to Home Educate (disenchanted with modern schooling), so nursery/school etc isn't an issue. I have heard a few people complain about schools who don't look after their diabetic pupils, but luckily I wan't have to face that.


Clorinda

 

[Han&Yas]

Hi Clorinda

I couldnt agree more on the doctor's getting rewarded front, they truly provide amazing support.
Homeschooling is a very good idea, its definately something I am looking into.

My little boy has not been offered a pump, we're in London in the UK, I wasnt aware children could have pumps, how have you found it so far??

Did you inject at all, and if so has the pump proven to be alot easier.

Best wishes

 

[Clorinda]

Hi Hana,

Yes the pump is brilliant. It is a bit of a postcode lottery with the NHS, but I would highly recommend it. He went straight on the pump after he was diagnosed.

We have fine tuned the basal rates (Levemir equivalent), and he is on teeny amounts at night, a lot more during the day. It works out meal time insulin and you can fine tune that too. He can eat what he wants, when he wants, as it can administer 0.1 of a unit instead of the minimum 0.5 from an injection. Just have to carb count what he eats.

You have to change the infusion set every 3 days, but I've got used to it now, so it's not a problem at all. He's on it 24/7 and therefore don't use injections, though we have the pens/insulin just in case something goes wrong with the pump.

I would definitly ask to be considered for one, or find out about them. I think they cost about £3,000 for the pump, then about £40 per month for the infusion sets. The PCT down here pay for it all though.

If you need to know anything about Home Education, let me know.

Clorinda

 

[husbandad]

hi,this is my first post as a dad whose 10 year old daughter has just been diagnosed with type 1. i had to write this after i saw your post and the others, with so very young kids being diagnosed with type 1.you see i can tell you that the future is full of hope. me and my 42 yr old ( she'll kill me for that) wife,have three kids.two girls,9 and 10,and a boy,14 and have a normal family life. so far so what,eh? well the thing you might like to hear is that my wife was diagnosed with diabetes type 1 at 18 months old.
i'm not trying to claim any kind of a miracle here,i'm sure that i aint the only one to have multiple family members with diabetes (or indeed something worse!),but i kind of sensed that some of you might have needed to hear that ,even though the professionals tell you time and time again that a "normal" life(what the hell is that anyway?)is achieveable, you still have doubts,but it is a reality.
hope this helps

 

[Clorinda]

Thank you so much husbandad.

You don't know how much that post means to me - I can't put it into words. So kind and thoughtful of you.

Love to you and your family xxx

 

[nicolaknight86]

hi im nicola
mum to jazmin who is now 3 but was diagnosed at just 10 months old, she has injections we are currently waiting for our diabetes team to recieve funding for a pump.
I just wanted to share something that my diabetic specialist nurse told me when jaz was just diagnosed...'because she is so young she will never know any different'
i know this sounds very harsh but its sooo true, my little girl knows that sweets are for hypos and has never questioned the injections. she has hypo awareness which some kids twice her age dont!
I wish you lots of luck with getting to grips with everything, im still learning everyday. she starts school next month eek!
xx