Paediatric care - Closed

“All children and young people with diabetes will receive consistently high-quality care and will be supported to optimise the control of their glucose and their physical, psychological, intellectual, educational and social development.”

That's great... when do we get it?
My daughter has been type 1 for two years. We have a great and highly overworked paediatric diabetes nurse and consultant but otherwise nothing. Learning to live with several injections and blood tests everyday, feeling different from all the other kids around you, having to change your lifestyle and routine to fit in with injections and blood tests, having to make everyone around you aware of the consequences of low (or high) blood sugar and the necessity to eat the 'right' things at the 'right' times, getting to grips with a complex equation of food, exercise and insulin to maintain good blood glucose results to prevent long term complications... There is so much to take in and so little support. There is NO psychological support, there is NO formal education programmes beyond that provided by the diabetic nurse and our GP plays no active part in the management of my daughter's diabetes. I often feel we are at sea, learning about diabetes very much in isolation and when things go wrong we have only our local nurse to turn to. This is not fair on her, not fair on us and certainly not fair on our kids.

Dear Bill,

I was once again disgusted to see that your educational service was dismantled.

Don't despair.

If Diabetes UK and the Government want to do the right thing for diabetics they need to support considerable change.

1. All diabetic patients need accurate and relevant information about how to manage their condition. Ideally they should be better educated than their doctor.

2. All of those with glucose intolerance or diabetes need optimal dietary advice and coaching. On purely scientific evidence this would be a very low carbohydrate diet but some variation needs to be built into this for personal preference and pregnancy for instance.

3. Self monitoring needs to be consistent. Monitoring for complications needs to be thorough. Treatment of complications needs to be timely and effective.

4. The patient needs to know how to adjust their medication, exercise and diet in response to their blood sugars so that they have normal blood sugars as much of the time is possible.

With other like minded people I am in the process of developing what I hope will become an international web based diabetes course for patients.

We are at the information sharing / very early stage of this at present.

Doctors like you, Bill, would be welcome to contribute so that the benefits of your course are not lost. Perhaps your team or patients would like to contribute too?

Modules specifically for children and a children's / teens forum would be an excellent idea.

Dear Bill,

As a GP I do not have your direct experience with ketogenic diets with epilepic children and so do not know about growth failure in this group. Do you know how many grams of carbohydrate they were on?

I certainly sympathise with them as very low carb diets are no easy matter.

I would say that the lower the carbohydrate the better potential control of blood sugars. But the diet has to be acceptable and able to be done consistently particularly for type one diabetics. The problem with the very low carb diets is sticking to them day in day out.

What I would say is that the lowest carbohydrate diet I would be happy to recommend is Dr Bernstein's diet which comes in at of 30-42g of carbohydrate. This is made up of non starchy vegetables, meat and fish, eggs, yogurt, cream, butter, and healthy oils.

This higher in carbohydrate than the ketogenic diet given to children as far as I have read.

Dr Bernstein has has type one diabetes himself since he was 12 and is still a practising diabetologist at 69 with a hbaic of 4.9. He was the first patient to use a portable blood glucose meter - much against the opinion of the ADA of the time.

A particularly successful Swedish diabetic centre takes a middle path with about 70g of carbohydrate as standard. There is more variety of fruit and vegetables allowed and some of the lower glycaemic grains eg rye bread and the addition of milk.

The patients are educated about this and allowed to vary their carbohydrate so that the ones who want optimal control can go lower and the ones who struggle a bit can go higher.

Dr Lois Jovanovich-Petersen's Clinic in Santa Barbara uses a more relaxed 30g for each meal with no more than 15g of carb for each (optional) snack. So this is coming in at 90-120g per day. She has had a lot of experience with treating pregnant diabetic women as well as the general diabetic population.

Dr Jenny Brand Miller in Australia advises diabetic patients to focus on the glycaemic index of food.

The American Diabetes Association diet on which the standard NHS advice is based recommends that 60-70% of a diabetics calories comes from carbohydrate. In a teenager this can be 300-450g a day.

People in general manage to follow this diet quite easily especially as they are encouraged to eat lots of pasta, cereals, bread, potatoes, starchy vegetables, fruit and sugary stuff in "moderation". These items are particulary cheap and readily available.

The big problem is the very high blood sugars that result and the very high doses of insulin needed in attempt to cover these. The complications and hypos are the sad side effects.

Why are patients told that the only diet they should follow is the high carb/low fat one?

Out of all the diets I have mentioned it produces the worst results for diabetics.

I totally agree with you Bill. Surely the way to go is to educate people about all the options? Surely they can decide for themselves how strictly controlled they want their sugars to be?

Children, out of all diabetics, have the potential to have it the longest. They also have the potential to suffer the complications the longest. Why can't they be given the option of having normal blood sugars?

The question of carbohydrate cover of exercise is important and often misunderstood. Of course you need to cover it with carbohydrate. This is on top of any basic meal time carbs.

A recent research article which you can retrieve by going onto the website "diabetes in control" found that an average sized man excercising aerobically at 50% of his maximum heart rate for an hour would need 40g of carb to cover this.

This is a fair bit and some people work out much more enthusiasically than this.

For type one athletic types they need much more individualised coaching than I for instance could ever provide. A good book which goes into this in some depth is "Think Like a Pancreas" by Gary Scheiner. There is also a book highly recommended by a type one diabetic runner called "The Diabetic Athlete" but I do not know the name of the author.

Insulin pumpers have more flexibility regarding exercise as they can choose to reduce their basal insulins to reflect their needs.

We need all this and more covered in the education delivered to diabetics and diabetic children.

Dr Katharine Morrison
Ballochmyle Medical Group
Mauchline
Ayrshire
KA5 6AJ

(This is for correspondence and for Nicky's information. Thank you.)

I couldn't agree more with this statement. My daughter is now 14 and has had diabetes for 5 years. At first she was well controlled and seemed to accept her condition.
Now we have times when she refuses to inject, gets angry with everybody and blames us for her condition. In clinic all they seem interested in is getting her A1c down to an acceptable level. When I mention how she feels they just say "lets get the A1c down first and we'll discuss this next time."
This has happened at her last two appointments, maybe if they looked at the psychological effect on a teenager it would help with her A1c count.