5 years old and Type 1

[Mum_of_one]

Hi Everyone

My name is Lin and im new to diabetes and diabetic forums. Last Friday my 5 year old daughter was diagnosed as a type 1 diabetic. I was shocked to say the least. As a single parent im dealing with everything, but id like to hear from anyone who knows what my daughter and I are going through.

My biggest concern is that my daughter's blood sugar levels are so high, her monitor has just registered HI everyday and this evening I finally got some numbers on the display! But 26.2 is so high. Im doing everything that the diabetic team have said to do, but surely her blood glucose levels should be dropping?

I have been informed that my local NHS trust do not have a dietician or a child psychologist at present to help support and advise us. Has anybody found a reliable site/book/group for advice?

I just want my daughter's life to be as normal as possible and not let her diabetes stop her from doing anything she wants to do, but I know we must be careful especially in these early days.

Any support, guidance and ideas will be very welcome.
I look forward to hearing from you.

Lin, mum to Freya aged 5 with type 1 diabetes 🙂

 

[Northerner]

Hi Lin, I replied to your other post so won't repeat what I said there 🙂 What insulin is she on, and are you in regular contact with her nurse about making dose adjustments? It will take a little while to get these right so try not to worry too much. Are you testing for ketones? If not, then you should ask your team about this - ask for a blood ketone monitor.

When are you doing the tests? Is it before or after eating, and what sorts of things is she eating? All carbohydrates will make blood sugars rise, but some will make is rise less than others - it is by testing before and after meals that you can find out what your daughter tolerates well and what should be avoided. I found The GL Diet for Dummies to be a good introduction to selecting things that are kinder to blood sugar levels. 🙂

 

[Adrienne]

Hiya Lin

So sorry to hear about your daughter. I get it, I understand 100%. I am a single parent so get that bit too. My daughter is now 13 years old and has been type 1 since about 5 or 6 weeks old so have covered all ages so understand all that.

Where do I start. Let me explain about what is happening in the paediatric world right now in England. Are you in England?

It has changed as of 1 April. Your team absolutely 100% have to have a dietician and a psychologist. If they do not then they should be closing. There are new rules which came into force on 1 April 2013. There is new tariff and each medical team HAVE to tick the box of 13 criteria if they want to get paid !! It is that simple (in theory). There is a lot to be worked on and the country has been split into 9 massive areas and each area has a network which consists of consultants, DSN's, NHS people and parents who are representing all the other parents. I am one of those parent reps and I sit on the South East Coast and London network. I am in touch with the other parent reps over the country. Tell me (feel free to private message me) your hospital and area and I could find the parent rep and put you in contact and they can tell you more in theory about your hospital or at least put you in contact with other parents under the same hospital. There is huge change afoot and if your hospital is not delivering you can easily just change hospital, that is very easy to do.

However this is early days for you and you will be on the diabetes diagnosis roller coaster for some time yet.

What regime has your daughter been put on? A pump? MDI (multiple daily injections) which is normally levemir or Lantus insulin once a day and then 3 (or more) injections of novo rapid with each meal.

Your daughter clearly at the moment needs more insulin. I am hoping, really hoping that you can tell me that your DSN (diabetes specialist nurse), is calling you a lot at the moment or that you can contact her easily so you can tweak these insulin levels. Did they tell you anything about carbs and injections etc?

If not and you have no idea what I'm talking about, have a quick read of the sticky at the top of this page, it will give you some ideas.

Also you can join the CWD email list. There is a toddlers list which you could join (I'm on that as well) and there are lots of others with 5 year olds further on than you are.

www.childrenwithdiabetesuk.org

Keep going and just do day by day and nothing more at the moment xx

 

[littlehi]

Hi mum-of-one
I'm so sorry to hear about your daughter. My 5 year old son was diagnosed in January so I completely understand your shock; you just cannot take it in. We knew nothing about diabetes before then so the last few months have been a crazy learning curve. But despite a few problems with behaviour we are slowly getting there. As I'm really new to all this too, I don't have as much advice as the others here but I do know what you are going through. They are so small and being so brave and you just feel so powerless.

My little boy's bg levels were also really high in the first week or two and then gradually started to come down as we learned how to carb count and adjust his insulin. I'm not sure what system you are on? We are still on the 2 injections a day and set amount of carbs at each meal and snack time. At first the advice our team and esp our dietician gave us just didn't work - he is not a big eater and we seemed to be constantly having to give him food he didn't want and then lots of high bg levels esp in the evenings/nighttimes. The 2 injection system gives you very little control but as we gradually adjusted his diet back to his normal amount being really careful about his carb intake, things seemed to settle and we've just had 3 days in a row with not one single reading out of range (which is a miracle).

I'm not in the UK but it seems incredible that you don't have the support of a dietician. Even though the advice we got didn't really work for us, it gave us a place to start from and learn what worked and what didn't. I really hope that you can get this help as working all this out has definitely been one of the hardest things for me.

So I guess we have become a little bit more confident over the last month or so. In the early days you think you will never be able to figure this out but gradually you do. There is still so much to learn but my little boy is already so used to it, does his own monitoring and even weighs his own food out with the digital scales and adds up his carbs sometimes (helps with his maths too😎. He is back doing everything he did before and getting his confidence back. There are still bad days of course and "why did it have to be me" days, but over all 3 months on, things are getting better.

I also found the Ragnar Hanas book great but it can be a bit overwhelming in the early days. I had to stop reading about diabetes altogether for a while a few weeks in, as I was just exhausted trying to understand everything all at once and was staying up far too late online looking for more and more information. So as Adrienne said in her post, one day at a time is definitely best at this early stage. This forum is a great place for help and info too and just to know you are not alone.

Anyway, sorry for the long post! Wishing you and your little girl all the very best in these difficult days.

 

[Redkite]

Hi Lin,

Sorry to hear of your daughter's diagnosis, I expect you're still reeling with the shock of having your lives turned upside down. My son was diagnosed aged 4 (he's 12 now), and although if I could take it away from him I would do so in a heartbeat, I can say that it hasn't prevented him in any way from living a normal happy life. Though sometimes it takes military-style planning to make sure he can join in with everything he wants to do.

I highly recommend you join the cwd email group as Adrienne suggested, as there are loads of us parents on there with a depth and breadth of experience of caring for little ones with diabetes. You will find advice on everything from school to sick bugs to kids parties, and no matter what your question I can guarantee someone will have good advice for you.

Don't worry too much about Freya's high levels in the first couple of weeks. Presumably your DSN is in touch daily? He/she will want to increase Freya's insulin quite cautiously at first, because newly diagnosed children can sometimes have a bit of residual insulin production in their pancreas, and starting insulin therapy can stimulate a "honeymoon period" where their levels suddenly drop close to the normal range. If you are too aggressive with insulin corrections to bring down the highs, it could provoke lots of hypos. So a gradual approach is called for at this stage.

Btw I'm also a single Mum and it's hard, so you have my sympathy (wasn't single when my son was diagnosed but might as well have been for all the help his Dad ever gave!). If you can, try and get other family members to come to initial clinics with you and share the learning journey so you'll have a support network. I find it very hard to have nobody but myself to fall back on.

Finally, do get yourself the Ragnar Hanas book!