The essential guide for parents of newly diagnosed children pt.1

[Robster65]

Written by Adrienne - many thanks from all the Moderators!

Hiya I have been asked to write a ‘sticky’ for the parents, especially the newly diagnosed families. So welcome to all.

A bit about me and mine first. We've been at this 11 years now, my daughter is 11 years old 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 !

It is just me and my daughter at home so understand the single parents as well and how hard it is.

From diagnosis day for a while you will be in your diabetes bubble where your world has been rocked and all you are focusing on is diabetes. This is a good thing actually whilst you get used to it all before you move to the next stage. Others don’t always understand this and why you are focusing on diabetes all the time. That is hard to swallow sometimes but I think back to ‘before diabetes’ came to stay and I hold my hand up and say I had absolutely no idea whatsoever what diabetes meant or was. I didn’t even know there was more than one type so your friends and indeed some family will be on that very page and not have a clue.

Lots of newly diagnosed children are in honeymoon to begin with 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 honeymoon just gives a false sense of good numbers and you get the shock of your lives (once again) when honeymoon is over. This honeymoon means that the pancreas is still working a tiny bit. It can last different times for different children.

However the diabetes bubble gives you time to learn. Knowledge and education is power. I learn all the time, still. Things change all the time with information and technology.

Some of you will already be carb counting which is a huge plus point whatever regime you are on. In theory every diagnosed family should be taught carb counting in those first few days of diagnosis and it becomes part of the journey.

However for whatever reason some people are not taught immediately to carb count but 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. The members on this forum will be happy to give you a general idea to get you started. There are books and the best one at the moment is also an iPhone app and now an Android app. It is called Carbs and Cals. Google it, they have a website (http://www.carbsandcals.com/) as well. It is a visual book as well as numbers. (Oh by the way I don’t want to hear any excuses of ‘I’m rubbish at maths’. If I can learn it and I was the one with the calculator in the pub to work out my darts score, then anyone can learn it ).

Personally I found the idea of carb counting forever the most daunting thing. It took a few weeks to get my head around it and then it all falls into place. There are rules of thumb you can follow as a starting point on ratios ie how many units to how many carbs. My daughter is on 1 unit for every 5g carbs at breakfast, 1 unit to every 9g carbs at lunch and 1 unit to every 16g carbs at tea time. So you find your starting point and tweak from there.

 

[Robster65]

Pt.2

Written by Adrienne - many thanks from all the Moderators!

So on to regimes.

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 it works ! Not great stats.

Apart from the fact it is the farthest removed regime from what a real pancreas does, so cannot control blood sugar levels very accurately (this could be different in honeymoon bear in mind), it is also very restrictive.

I am talking from experience here so not just stuff I’ve read from a text book. They didn't have MDI (Lantus or Levemir) when my daughter was born. On mixed insulins you have to eat at the same time every day. Snacks and correcting highs are very hard on mixes but it is the pressure it puts on family life that is not great due to the strict regime.

In most countries in Europe when a child is diagnosed they either go straight on to MDI or pumping, they do not generally have mixed insulins anymore. The only reasons that I am aware of that we still have it here is money reasons and also out of date medical teams (but don’t get me started on that one).

MDI – Multiple daily injections. This is a combination of either 1 or 2 shots of Lantus Glargine or Levemir (similar stuff but different companies) and 3 or more shots of Novorapid or Humalog. The Lantus and Levemir are the long acting insulins. They are supposed to have no peaks and troughs, yeh right. They all have little ones. They are supposed to work for 24 hours, again yeh right ! The Lantus seems to be the longer one and can work between 16 and 22 hours for some lucky people but the Levemir only seems to work for between 12 and 18 hours (at a push) hours so most people end up spliting the Levemir dose into a morning injection and an evening injection. Again most teams will start the long acting injection in the evening. This is not set in stone and my daughter and I had to change hers to the morning quite quickly. We were in hypo city overnight initially and high all day. When we swapped to the morning it was much better. I think the evening start could be to do with the fact that they were (could still be) licensed for only over 18 year olds and if you remember back to then (I’m trying….) I would rather stay in bed than get up and do something so evenings worked better. I’ve no idea if this is right but its what I’ve heard along the grapevine.

So then you need the quick acting insulin to cover all carbs eaten so you have your Novorapid and Humalog. (Just to let you know that no insulin is really that quick to be honest which is why it is still quite hard to control anything).

By this point you should have been definitely taught carb counting as otherwise how much Novorapid/Humalog would you know to give for the carbs you are eating !

You also can use the quick acting to correct highs, etc but this needs discussing with your team as well as they need to work out with you how many mmol/l 1 unit will bring you down by. For example I know that 1 unit of novorapid will lower my daughter’s BG level by 3 mmol/l.

MDI is ok, it's better than mixes and it is the best injection regime we have.

Pumping - Pumping is the best thing for young kiddies to be on and lots of hospitals will put newly diagnosed young ones straight on pumps. This is fantastic.

Pumping with CGMS is the gold standard of care in the UK at the moment. It is the best of the best. Full time CGMS can help lower the HbA1c. Fact ! However, pumping and indeed definitely CGM, is a post code lottery which is awful but happens all over. Lots of teams are just not up to speed in anything diabetes and lack the up to date training so won’t put anyone on pumps.

Luckily for us in England we have patient choice so we can change hospitals very easily and many do. We do not attend our local two hospitals, we travel 3 hours ish to our hospital and then 3 hours ish home, it is worth the train journey to get the best level of care. There are great hospitals all over the UK who offer pumps. They have the expertise to train and support.

A pump is attached to your child 24/7. For some parents as well as the children that is scary stuff and they say ‘no way’ immediately. Yet you ask a child who is on a pump would they give it back, the answer will almost always be ‘no way’. If you asked a parent whose child pumps to give it back, you will likely have to move out of the way before you get knocked out. It is so much more than an insulin regime, it is quality of life. You tend to get your life back (nearly) when pumping. The freedom your child will have is so much more than if on injections.

A pump is the closest thing to a pancreas. It is not a magic box though. To begin with it is hard work. You have to rethink the diabetes regime you had got used to unless you are one of the lucky ones and have a pump from diagnosis. A pump only has one insulin in it. It is always quick acting insulin and it works as background/basal and as a bolus (ie with food or when correcting).

You can set the basal rates (background rates) so that in theory you don’t need to eat as the basal rates will keep the blood sugar levels ticking along nicely. It doesn’t always work like that, but that is theory. A pump can help you get rid of the very annoying mid morning spike and then the huge hypo drop by lunch time.

CGMS – Continuously Glucose Monitoring System. Some of the insulin pumps have this integrated which is brilliant and one even suspends insulin delivery when it gets to a certain low level which is potentially life saving. You can also get stand alone CGM from some companies. They take blood sugar level readings every 5-10 minutes or so. I won’t complicate things by droning on about CGM here needless to say it is part of the gold standard of care and if you want one, then go for it. You may have to fight and please feel free to ask any questions about them.

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. Even with CGM it is still hard work, sometimes harder because we have all these alarms ‘shouting’ at us. Still we all just work hard at keeping our kids as healthy 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 then fine but it is the wrong sugars so doesn't work as well and if you have a serious hypo you will need alternative stuff (*Hanas, 2011, p.65).

I was the mum who gave my daughter Diet Coke in McDonalds 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 full sugar Coke for hypo treatments along with Lucozade (that was a bit older as kids don't tend to like it so 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 and teen ones are less busy but still plenty of people to help. Some people find they open a google email account purely for CWD emails.

* Hanas, R. (2011), Type 1 Diabetes in children, adolescents and young adults, Bridgewater, Class Health

This post written by Adrienne