MK Kids with Diabetes

I have just thoroughly read the guidelines that were linked below regarding ketoacidosis and I want to make a couple of comments which I would appreciate you forwarding to everybody.

Last year Aran was diagnosed with diabetic ketoacidosis when we got him to ward 5 at about 2.30 one morning. He had been vomiting for several hours, on and off and his blood test results were in the 20's and 30's and even quite high Novorapid injections were not helping to bring his sugars down. I had never heard of ketoacidosis before this time. I did not know that it was dangerous to let a child have results that high for that long. I did not know that although he was lucid between the vomiting, he was in fact deteriorating very fast indeed. Hindsight and gained knowledge are wonderful things and looking back I should have acted much sooner - BUT, I didn't know this at the time.

Reading the guidelines and reviewing conversations with the staff has made me realise just how close we came to him having very severe complications. His eyes and ankles had started to collapse, he had a very severe headache and stomach pains by the time he was admitted. All this happened in the space of no more than 8 hours from his first signs of discomfort.

2) If your child continues to have high results and then starts to vomit, seek advice straight away. If in normal hours, get hold of Jan. If not, ring ward 5 - they will always help.

3) If your child has vomited more than a few times, do a ketone test on their urine. This is a good indicator of problems. Always make sure that you have a (in date!) box of strips in the house. ed. Better still - use a Medisense Optium meter with ketone blood testing strips. These provide a reading that is far more accurate and current.

4) Should your child, for whatever reason, have got to the stage where not even water will stay down - TAKE THEM TO WARD 5. Ring first obviously, but don't bother with A&E. If there is 2 of you and at least one of you isn't panicking, take them in the car. Only get an ambulance if they are having immediate and obvious problems as they HAVE to go to A&E.

5) If it looks as though being admitted is going to be inevitable, pack a bag for 2 days minimum. Pack all their favourite things, making sure you have their own tester and injection paraphernalia with you. They WILL be in for a minimum of 48 hours and you should let your child know this. There will be hourly testing initially and none of you will get much sleep, but it has to be done.

I have no medical training and the above is NOT medical advice. It is just stuff I have learned by being the wife of a type1 adult and the mother of a type one child. If, by reading this someone keeps their child out of hospital and on an even keel, or it just increases the understanding of their child's condition, I shall be pleased.

Appointments: (By Neil Griffiths)

Go prepared for appointments - print of the list from the RCN web site which specifies the tests that should be provided at the clinic. Here is a link to the RCN site: http://www.rcn.org.uk/resources/improvingcare/diabetes/goodpractice/children/

Our daughter Poppy has just been to her clinic at the UCLH in London. Since being on the pump her HBA1c has ranged between 6.2 and 7.3 which is her lowest ever recording in the six and a half years she has had diabetes. This puts her out of the danger zone that 4 out of five diabetic children are in. Four out of five children in the UK have HBA1cs over (sometimes a lot over) 7.5 putting them at risks of long term health conditions such as retinopathy and kidney damage.

Poppy's quality of life has improved dramatically since she went on the pump in October 2006 and we are still working on her control even further.

When Poppy was on injections, if she had blood sugar readings in the teens - 13 and upwards we would be frustrated with this but often powerless to do anything to help - other than give her another injection. However, injections are such a crude form of insulin delivery that correction doses could send her low. Now she is on the pump (Since October 06), if she is high, we can dial up a few tenths of a unit to correct her blood sugars. If she wants to eat a magnum ice cream - she can - we just dial up the right amount of insulin for the carbs. Although, this would be a rare treat as eating a healthy diet most of the time is so important.

Poppy loves her pump - especially as it is pink! She likes the independence - as she dials up her own readings - with a little supervision. She does not want to give it back!

I'm not saying the pump is easy - it involves more blood tests and a big learning curve. Also, carb counting is essential. However, if you are prepared to put in the effort, it is most definitely worth it.

2008. Update: Poppy changed her pump last year. It was upgraded to a Medronic 522 which includes a continuous monitor. This has further enhanced her life. We have been able to see what is going on throughout the day and night time - in between the normal blood testing times. The pump is provided by UCLH (University College London Hospital) and Milton Keynes PCT pay for the consumables.

Given the change to Poppy's life since being on the pump, I am very disappointed that pumps are so rare. We only know of one other child in Milton Keynes on the pump. It is our understanding that this only came about because her HBA1c was spiraling out control because injections were not working. NICE guidelines recommend availability of pumps and continuous monitors for all children with erratic blood sugars and reduced quality of life - which probably applies to most!

It is good to hear of more and more children in the area going on to MDI (multiple daily injections) which is one step closer to the pump.

I understand pumps are not for everyone. You need to be dedicated - e.g. do blood tests in the middle of the night, get good at carb counting and keep adjusting the settings on the pump. It may also be the case that your child would not like something attached to them all day. This is understandable. We had the same apprehension with Poppy. However, Poppy does not want to give it back! and neither do the vast majority of kids on pumps at UCLH. Dawn and I both have science degrees so we are not afraid of technical stuff. Even so, even if you regard yourself as not a technically minded person, I believe that if you can add up your shopping bill and learn how to text on a mobile phone, then mastering a pump is also realistic.