How To: Prepare a Diabetic Child for Life Outside the Home

This section is for children and their parents and carers.  You can skip this section if you are not in this situation and proceed to the How To: Know if My Insulin is Still Good section.


Equip your child with a “survival pack” that contains everything they will be likely to need if they are out for the day.  A small rucksack, big bum bag or shoulder bag can work well.

  • In it put the insulin, tester and glucose drink, tablets or gel.
  • Wear the alert bracelet or dog tag.
  • Put some carbohydrate containing food in the bag or carry it in a pocket.
  • Carry a charged mobile phone.
  • Carry some money to buy food if necessary.A container of diastix for testing draft “diet” drinks.
  • A copy of the “Hypoglycaemia” emergency card with your home contact and mobile numbers on it.
  • A copy of the personalised “How to deal with hypoglycaemia” information (see How To: Deal with Low Blood Sugars)

When going on a lengthy outing encourage them to go with others rather than alone.

Take the glucagon trip on an overnight stay.

Always ask what food they can eat if you go low if you are staying at someone’s house.

Advise them to take more supplies than they think they will need if  going on a bike ride or long hike.

Have a stash of fast acting carb in one place that can be used for lows.

Bring diet drinks to a party.

Ask for a locker at school or storing extra food/diet drinks/juice. They may not be available to everyone but they may give one to an insulin dependent diabetic.

 


Quick Quiz:
There is no quiz for this section.

Reference Info:

Acknowledgements to Spike and Bo Loy’s, 487 Really Cool Tips for Kids with Diabetes

Where to Next?
Please now continue to the How To: Prepare Myself for My CollegeYears with Diabetes section.

If college is a long way off yet you may skip this section and proceed to the How To: Know if My Insulin is Still Good section.

How To: Deal with the Stress of a Newly Diagnosed Child

This section is for any newly diagnosed type one families or anyone who would like to understand more about the emotional issues that arise. Grandparents or family friends may want to help and not know how. Often people under stress close in and don’t ask for help when they need it.

If you are not in this situation please proceed to the How To: Create Emergency Information Pack.

This section is for everyone.


It may help you to know that even in medical families the diagnosis of a child with diabetes can come as a profound shock. Most people know something about diabetes.  But this may not be accurate. Having to have lots of  painful jags, being likely to need a guide dog and amputations before old age are some of the  catastrophic things things that can go through a parent’s mind.

When any life changing event happens what people have been accepting as their likely future changes too. Life is full of pathways where doors open and close to various opportunities. The diagnosis of diabetes can even feel like a death has occurred in the family. The reality is that life has certainly changed for everyone in that family and it usually does take some time to adjust to the different expectations that come with the diagnosis.

The BC (British Columbia) Children’s Hospital in Canada has produced an excellent series of handouts that will benefit not only children and their carers but type one and two diabetics of all ages. This is partly due to effort that has gone into the carb counting and insulin adjusting sections but also the more general sections. They also give addresses of diabetes organisations and sites.

This is how they suggest you help yourself and your family through difficulties that surface at the time of diagnosis.

Join a Support Group

The Juvenile Diabetes Research Foundation at www.jdrf.org has a link to “Life with Diabetes”  and then “One-to-One Support”.

There is a chat room at www.childrenwithdiabetes.com/chat/.

If you look in the presentations section there is a very good series of slide shows from diabetes health professionals and parents to help you understand more about managing the condition and the effects on your child in the home and at school.

At Dr Bernstein’s Diabetes Forum at www.diabetes-normalsugars.com  the Bernies are  there to help people who are considering or who are doing a lower carbohydrate diet to help themselves or their child.

Look After Yourself

You can’t let diabetes rule your life to the point where your own emotional and mental health suffers. How can you help your child as much as you want to if you are in a poor state?

Find babysitters and relatives you trust and teach them all they need to know about diabetes care. Here are links below with advice on this.

Canadian Diabetes Association

www.diabetes.ca/Section-about/ChildrenIndex.asp

American Diabetes Association

www.diabetes.org/for-parents-and-kids.jsp

If you have a teen with diabetes who you think could be experimenting with alcohol or drugs educate yourself about how these can affect diabetes.

Keep or make a supportive network of friends to help you. These can be in person or you can meet online.

If You are Separated or Divorced

Both parents should educate themselves as much as they can about diabetes management so that your child feels comfortable in either home.

Keep your child’s diabetes separate from any ongoing disputes you may have.

Either both go to the child’s medical appointments together or alternate so that you both are confident about dealing with your child’s diabetes. Communicate freely about any regime or dietary changes that have been agreed.

Keep Optimistic

Focus on what CAN be done about diabetes.  Reading about diabetic people who have enjoyed life to the full and achieved remarkable things in all walks of life can inspire you.

Consider joining a local network for your national diabetes association for company, support, to help educate others, and fundraise.

If you are just not coping or you are nearing the end of your tether see your doctor or social worker or the diabetes teams psychologist for help.


Quick Quiz:
There is no quiz for this section.

 

Reference Info:
Acknowledgements to the BC Children’s Hospital for this section.

Where to Next?
Proceed to the How To: Create Emergency Information Pack

.

 

What can you expect as your diabetic child goes through the teenage years?

What can you expect when your child with diabetes becomes a teenager? I will discuss the physical effects, the psychological effects and the effects on blood sugar control.

 

Puberty starts in girls around the age of 10 due to the secretion of growth and sex hormones. This is all carefully coordinated between the brain and sex glands. The growth in these hormones peaks at the age of 14 and then gradually subsides. Menstruation starts around the age of 12 or 13.  For boys puberty starts around the age of 12, they generally overtake their mothers in height at the age of 14. The hormonal peak for boys is at 17 and then there is the gradual reduction. The bones of humans fuse at the age of 22 and from then on no more growth in height occurs.

 

The change in appetite around puberty is extremely pronounced. Instead of pleading with your children to eat their dinner, you have to plead with them not to eat yours as well.  They will all snack. They will develop a taste for high carb/high fat foods and Greggs, Krispey Kremes or Hortons will be their favourite.   Some may get quite tubby and then sudden shoot up six inches over the summer. You will have a hard job keeping up with shoes and clothes that reach their wrists and ankles.

 

Inside their brains a lot of pruning is going on. Brain pathways that they don’t use get lost and ones that they do firm up. Moodiness can be expected due to the changes that go on. Teenagers tend to stay up later but need a lot more sleep and need to sleep in late when they can.

 

For 14 year old teenage girls who have diabetes the natural rebellion they feel against their mothers could hardly come at a worse time.

 

Socially teenagers are both trying to fit in with their peer group and define their sense of self by exploring their differences. They want to take decisions for themselves but often lack self organisational skills and perspective. They may make utterly daft decisions. They don’t want to be babied but they need you help to almost the same extent, just in a different way.

 

Parents are a great resource for teenagers. In a study of type two diabetic teenagers the hbaic of those with good parental support was 7% compared to 11% for poor parental support.   In a study of type one UK 16 year old teenagers girls had a hbaic 2% higher than the 16 year old teenage boys. There is a menstruation effect here with girls too, but a strong difference was that 16 year old girls tended to deal with their diabetes management themselves and didn’t want their mum to interfere. The boys however were happy to have their mums help them and it didn’t affect their self esteem at all.

 

It seems to me that parental support is discouraged in the diabetic clinic that my son attends.  Parents are excluded from diabetic clinics once our offspring turns 14. This is rather silly of the doctors because the parents are the ones who have to pick up the pieces when things go wrong.  When Steven turned 14 I was informed that this would be my last sit in with the doctor at my son’s clinic.  I was informed by the dietician that she would now be educating my son whose hbaic was then 5.3% how to eat properly. I told her that she certainly would not.

 

The average hbiac for Ayrshire teenagers is 9%. The true level is probably more like 9.5% to 10% because they are mainly using capillary blood tests that underestimate hbaic. The average for Scotland is around 9.5-10%.  Steven reached the peak of his growth spurt bang on 17 and a half. His highest hbaic was 6.7% and it has come down over the last year to 6.0%. We are now finding ourselves cutting back on insulin instead of relentlessly increasing it.  In a few years he should be easily able to stay in the fives for hbaic and for parents with daughters they should by their late teens and early twenties be able to hit the sixes easily. So let’s go back a bit to what you can expect from all this eating, growing and stressing when it comes to blood sugar management.

 

The first thing you will notice about puberty is that blood sugars will increase. The next thing you will notice is that you will need more insulin to cover the same meals as you used to and that you need more insulin to correct high blood sugars than you used to. These are the easy bits.

 

The hard bit is dealing with the dawn phenomenon. This is the rise in blood sugars you get in the morning due to all the hormones that are secreted during the night. Why is this hard? Because whereas the other two are predictable and consistent, the effect of the dawn phenomenon is unpredictable and inconsistent.

 

In all cases you are going to end up giving more insulin. For the meal insulins you simply gradually increase the amount of insulin you give for a given amount of carbohydrate. From looking at  old blood sugar books I used to give Steven one unit of novorapid to cover 14g of carb. At his most insulin resistant this was one unit of novorapid to cover 8g of carb.  The complex thing is that your carbohydrate/insulin ratios vary according to the time of day. You usually have to give a lot more insulin at breakfast compared to lunch and dinner for instance.  In a short while I will show you how to work this out.

 

For correction doses you are doing a similar thing. A general rule of thumb is that one unit of novorapid will drop you 2.5 points UK. This is for a non insulin resistant  10 year old kid. As you get smaller in size you need less insulin to get the same drop. As you get more insulin resistant such as, you get bigger, your blood sugars are higher, you are ill, it is early in the morning, it is just before your period the amount will generally increase.  You have to find out what correction factors work for you. There is no short cut for experimentation.

 

The problem with blood sugar management with even the easy stuff like carb/insulin ratios for meals and correction doses is that you are aiming to shoot at a target that is moving all the time. Almost as soon as you’ve got it nailed they are off growing again. You can expect this to go on till their peak age 14 for girls and 17 for boys. And then you have a whole new set of problems, which we will talk about later.

 

This is how you work out carb/insulin ratios. Every week I get hold of Steven’s meters and do a few things. I empty all the used test strips out, I put new lancet needles in and I put more strips and needles in if necessary. I then write down all the blood sugar readings in columns related to pre-breakfast, pre-lunch, pre-dinner and pre-bed. I add up the average of the week under all these columns. If the average is between 4 and 6 (UK) or 72 and 108 (US) I do nothing different about the ratios. If they are higher or lower than this I think about why this is and I consider altering the carb/insulin ratio. You handle the pre-breakfast blood sugars differently as I will explain later.  On your way up to the peak age you will be gradually giving more insulin and as you go away back down from the peak you will gradually give less insulin.

 

You also look at the number of hypos, for us 3.5 (UK) and 63 (US) or under and try to think why this is happening. It means that the meal / insulin matching is out in some way. It could be the result of unusual physical activity. It can also be due to eating less than expected. Steven has a habit of giving too much evening meal insulin so he can treat his hypos that seem to come on at 7.30-8pm with biscuits and sweets. As long as you know what is going on you can manage it. You do need to consider if you need to cut the insulin ratio, or revise your carb counting more accurately. Just in the last few weeks I noticed that Steven had been having a few hypos after breakfast. This was an unusual pattern for him. He was eating the same low carb breakfast. What was going on is that he is finally becoming less insulin resistant in the  morning and I showed him how to reduce his breakfast insulins accordingly.

 

The big problem with the dawn phenomenon is its unpredictablility. From my experience it was on most of the time but off about one day in ten. We never knew which day. Blood sugars could be 5 UK or 90 US at bedtime, 5 UK or 90 US at 3am and 15 UK or 270 US at 8am. We could not up the night basal because  this would have given him a severe night hypo one night in ten. We just had to sit it out. The dry mouth in the morning from the high blood sugars led him to having three fillings in six months. He had never had any before this. His sweetie guzzling 14 year old brother who still has no fillings certainly laughed about this. It is ironic that the teenager with probably the lowest sugar consumption in Scotland ended up with three fillings in 6 months. It is terribly frustrating dealing with this but my best advice is that you must sit it out.

 

When you are doing your blood sugar logs, you only bother about morning blood sugars when they are too low. If the 7am is too low or your 3am is too low you have to cut your night basal insulin. If the 3am is too high, and this is not due to what your kid has eaten, then you can raise the night basal insulin. If the morning blood sugar is too high, this is the dawn phenomenon and you have to sit it out.

 

Another factor for high morning blood sugars that you need to consider is a re-bound high if there is a hypo in the night. Dr Bernstein doesn’t think this phenomenon exists but after speaking to a lot of diabetics I think it does. A clue is if you wake up sweaty, or wake up after a nightmare. In this case you may need to decrease your night time basal insulin.

 

Blood sugar sensitivity varies according to the seasons. In general you get more insulin sensitive in the summer. You are exposed to more natural vitamin D in the summer and this could be one reason. Hbaics usually go up half a percent in the winter.  Minor variations in your basal insulin and carb insulin ratios are going on all the time.

 

So, this is what goes on as you go up the insulin resistance peak. What goes on when you go down?  I can’t fully say because Steven has just started going down and we still have a way to go.  Just as the dawn phenomenon blasting holes in my son’s teeth was the worst aspect of the upswing, there is a big problem with the downswing. This is unpredictable and sometimes severe hypos. I have read that although the climb to the peak is generally slow and progressive the downswing can be quite sharp. The vigilance that is required here is to keep a close eye on basals and low blood sugars, remembering to check at 3am occasionally. If you detect a trend towards low blood sugars reduce the appropriate insulin before it becomes critical. Even then you can still be caught out. I have been told that the insulin dose Steven will eventually need could be between 1/3 and 2/3 of what he is on at his peak. The amount will depend on his natural level of insulin resistance, body weight and dietary preferences.

 

Quiz 

 

Which one of these options is NOT correct:

 

At the onset of puberty:

Correct
Incorrect

 

Parents of teenage diabetics:

Correct
Incorrect

 

On the way up to age 14 for girls and 17 for boys:

Correct
Incorrect

 

On the way down from age 14 for girls and 17 for boys:

Correct
Incorrect

 

Helping diabetic teenagers optimise their blood sugars is a challenge for everyone in the family.  How have your family managed?