Hiya to all the new people, I can't believe there are so many newly diagnosed kiddies. I just get sad.
We've been at this 11 years now, my daughter is 11 and had her first insulin injection at 5 weeks old so we've been there and got that t-shirt through all the ages and now have hormones, yippee they are fun, NOT
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You will be in your diabetes bubble at the moment where your world has been rocked and all you are focusing on is diabetes. This is good thing actually whilst you get used to it all before you move to the next stage.
I would imagine from reading the messages that most of the little ones are in honeymoons so levels are behaving themselves pretty much. I never know whether honeymoon is a good thing or not. Those children that go into DKA on diagnosis don't seem to have a honeymoon so straight in at the deepend. I never know whether it gives a false sense of good numbers.
It gives you time to learn. Knowledge and education is power. I learn all the time, still. Things change all the time.
I see that one of you is not carb counting you and one of you is on mixed insulins.
Re the carb counting you can teach yourself this. If you can't get hold of the team then email them, and keep emailing them, they are supposed to be working for you and helping you. However you can learn, I'm self taught, there are loads of us who are. Am happy to give you a general idea to get your started.
Personally I found the idea of carb counting for ever the most daunting thing. It took a few weeks to get my head around it and then it all falls into place. On the website Steff gave you there should be carb counting stuff.
Re the twice daily injections. Oh dear where to start. Ok right (had to think for a minute). This is a hard one. On the Children with Diabetes email group there are around 350 families and I know only two families on mixed injections for which is works ! Not great stats there.
Apart from the fact it is the farthest removed regime from what a real pancreas does so cannot control any blood sugar levels (this could be different in honeymoon bear in mind) it is so restrictive.
I am talking from experience as well so not just text book stuff. They didn't have MDI (lantus or Levemir) when my daughter was born. On mixeds you have to eat at the same time every day, snacks, correcting highs are very hard on mixes but it is the pressure it puts on family like that is not great due to the strict regime.
Pumping is the best thing for young kiddies to be on and lots of hospitals will put newly diagnosed young ones straight on pumps. The next best thing for levels and freedom is MDI ie 4 injections a day sometimes more. However you need to be carb counting to both of these.
Night testing is the most controversial, heated subject you will ever talk about. It always has been and always will be. It is hard to say why you night test as we all know why but don't want to say. Some teams say no need to night test which is just extremely bad and dangerous advice. The international (not national but international) guidelines say all teams should make the parents aware of the times when there will be lack of hypo awareness. One of these is nightime. Studies show that most children do not wake when hypo at night and you can never rely on that. The guidelines go on to say something like that teams need to advise parents/patients that the only way to see if there are hypos overnight is testing overnight.
It is as simple as that. I test overnight, always have done. The majority of CWD, children with diabetes test overnight, every night. Some of us are lucky to have the use of CGM (Continuous Glucose Monitoring systems) attached to our child and they do alarm when levels are low or high so we can treat hypos or correct highs thereby maintaining great levels.
That all makes it sound so simple doesn't it, it isn't. Like you we all work hard at keeping our kids as healthly as we can.
One thing I will suggest for all newly diagnosed children and this goes so far against the grain you would not believe. If your child won't drink coke or lucozade then start now. Seriously. One day a coke or lucozade could save your child. Either is by far the quickest thing for raising levels. Some people use fruit juice and some DSN's recommend it and if it works fine but it is the wrong sugars so doesn't works as well and if you have a serious hypo you will need alternative stuff.
I was the mum who gave my daughter diet coke in MacDonalds aged 2. Yep that was me. I got some looks believe me but then other mums gave their children the milkshakes and the sugar and rubbish in them is worse ! Anyway I knew she would need to be able to take the full sugar coke one day. So for years I gave her sips of diet coke till she liked it and from about age of 4 she has used it for hypo treatments along with lucozade (that was older as kids don't tend to like it much) and it has saved her brain and life more than once which is our priority every time we deal with a hypo.
Sorry, I seem to have gone on and on. I do tend to once I start. Do look at the
www.childrenwithdiabetesuk.org website, there are a few emails groups you could join. The main one is very busy but the toddler one is less busy but still plenty of people to help.
PS I haven't actually read this back so sorry for any spelling mistakes or grammar stuff !
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