The family living with type 1 diabetes

[Northerner]

Like a lot of families with young children, Danielle Sellers and her partner Paul Burnett face a daily battle to get their children to sit down, eat breakfast and get out of the door on time.

But Danielle's morning comes with some added mental arithmetic.

Not only does she have type 1 diabetes but so do five-year-old James and three-year-old Elizabeth.

A Mum, a mathematician and a nurse all rolled into one, she's on call 24 hours a day to make sure that her own blood sugar levels and those of her children don't get dangerously out of control.

http://www.bbc.co.uk/science/0/20678536

 

[StephenM]

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.

 

[Northerner]

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.

I disagree. I can do 8 tests a day quite often, and I'm a fully-grown adult. With such young children and all the particular problems that a growing child represents I don't think 10 tests is unreasonable at all. And I totally agree with the 3am tests, much better to be safe than eternally sorry for the sake of a little disruption.

 

[Riri]

I agree Northerner. I have a pump, carb count and drive places daily so those tests, some of them imposed by DVLA rules, can quite often mean I'm testing over 12 times daily. I do a 3am test every night too - I know others who pump do al well It's just a test on my way back from the loo and takes 2 mins - but gives me peace of mind that my BSs are ok and the pump is still attached ok and working. Whatever works for each of us I say.

 

[Akasha]

Admittitled, I try to avoid nighttime checks where possible. But mostly cause I get grumpy with disrupted sleep..

I'm a little concerned with her math..

"So, two Weetabix is 25.7 grams of carbohydrate. With that they are having 100ml milk, which is five grams of carbohydrate. So that's 35.7 - if they eat it all. It's difficult with Weetabix because it absorbs all the milk.

25.7 + 5 is 30.7 unless I'm missing something..?

Either way, It can't be easy for her. It makes me sad to see such young children with Diabetes

 

[HOBIE]

I test a lot & i bet i could get blood out of certain fingers without a sharp 😱 Was in hosp & done 50 test strips in less than 3 days (sore)

 

[Northerner]

Admittitled, I try to avoid nighttime checks where possible. But mostly cause I get grumpy with disrupted sleep..

I'm a little concerned with her math..


25.7 + 5 is 30.7 unless I'm missing something..?

Either way, It can't be easy for her. It makes me sad to see such young children with Diabetes

Must be a typo, I reckon! 🙂

 

[Copepod]

Concerned to see photo of blood drop obtained from pad of big toe in photo 1/11 - presumbly 3 year old Elizabeth, rather than 5 year old James, as hand has nail varnish.

I'm also surprised that 10 tests per day per person is quoted as average - of course there are days when 10 tests are needed, but it can be as low as 4 (1 for each meal and 1 before bed), so an average of 10 means some days of around 15 testes, which does seem a lot.

 

[rachelha]

Concerned to see photo of blood drop obtained from pad of big toe in photo 1/11 - presumbly 3 year old Elizabeth, rather than 5 year old James, as hand has nail varnish.

I'm also surprised that 10 tests per day per person is quoted as average - of course there are days when 10 tests are needed, but it can be as low as 4 (1 for each meal and 1 before bed), so an average of 10 means some days of around 15 testes, which does seem a lot.

I can easily see how 10 tests per day is possible with children who are not having routine days. I am suprised by how infrequently the pump cartridge needs changing, I think that must be a typo.

 

[Riri]

Afraid it can never be 4 for me. Always need to check before meals and 2 hours after meals - we're on 6 there before we start testing before getting in a car which is daily for me living in a rural community. I also test before bed and at 3am on a pump, so were up to 10. My diabetes is still quite unpredictable and there's hypos and highs so on average 12-15 is the norm for some people.

 

[Redkite]

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.

She is not OCD, she's doing the best she can to look after her kids! My son has at least 10 tests in a 24 hour period. His clinic team (one of the top paed consultants in the UK) are very supportive of frequent testing, with the proviso that the data is USED, not just gathered and recorded. My son's tests are used for instant decision-making, and also to build a daily profile of his levels which help us tweak his basal patterns, bolus ratios and sensitivity factors on a regular basis, essential when you have a growing child. Extra tests are needed when hypo, 15 mins after treating a hypo, before and after exercise, etc. One is blind without this information.

The night time tests are also essential. Growth hormones are secreted at night and cause increased insulin resistance, meaning that while the child is having a growth spurt, more basal insulin is required overnight. When the growth spurt finishes, there is a sudden drop in the need for insulin, though there are no outward signs. If monitoring is not done there is a consequential risk of severe hypoglycaemia. Most children including mine do not wake up when hypo, and risk dying in their sleep if their levels remain low for several hours. Although this is relatively rare, sadly in our diabetes community there have been children who this has happened to. No parent wants to take that risk, therefore we get up and test our children during the night. I rarely get more than 4 or 5 hours sleep!

 

[Northerner]

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.

So Stephen, how often do you test a day, and for what reasons?

 

[AJLang]

I have to test ten times a day because my BGs are unpredictable and can run smoothly or go up and down unexpectedly - today is just one example of that happening despite all of my basal testing and carb counting.

 

[Hanmillmum]

10 tests is not unusual, it's more often the norm.

I can give a good example of unexpected night-time hypoglycaemia this week. My daughters BG's had tended to be on the higher side (8's-10's) recently at night, this flipped 180 without warning and I found a 2.6mmol at 2am and a sound asleep 4 yo who took a fair amount of prodding to rouse enough to suck on the glucogel tube. It's a good reminder why I check. So please try not to be so judgemental, it is very necessary to us parents and it doesn't serve just to satisfy our anxieties.

 

[Steff]

Stephen come on everyone is waiting for your replies, don't be scared now, dropping your wayward views as usual and then not coming bck for a few days.be careful your becoming almost predictable

 

[Pumper_Sue]

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.

Those children are on pumps Stephen and it's very important to test that often and even more when ill, due to DKA as there's no long acting insulin involved.
No idea how often you test Stephen, but even on MDI, I tested at least 10 times a days.

Even though you think it's over the top, how would you feel if you walked into your childs bedroom one morning and finding your child unresponsive due to you not testing in the night? Children as young as that do not recognise hypos in a way to alert the parents.

 

[Lauras87]

Sorry but I think this woman has a form of OCD as ten tests every day are not necessary. The 3:00 a.m. ones disturb everyone and should only be done if there is reason for concern such as a worryingly low result before bed or the child has been vomiting.

I test 8-10 times a day to see what's going on, I do before meals, 2 hours after, before bed, during the night & if I feel funny to check for hypos

You can't blindly inject insulin without testing & as a mother she is taking precautions.

How often do you test?

 

[Adrienne]

Do you know what I am quite heartened and happy. I haven't seen the article yet but was astonished at Stephen's response, how thoughtless of him, does he have a child with type 1 !!!!

But thank you to all the rest of the adults that responded in such a lovely positive way, defending, if you like, us parents and what we do and how we test. I would love to test only 4 times a day but we do a minimum of 8. We are trying to use the sensor more and test less but sometimes only a finger test will do. Parents often find themselves on the end of some adults with diabetes rudeness and lack of understanding with no thought as to the child with type 1 or indeed the parent. We, as parents, understand you and our children with diabetes and we accept and understand that we do not know how you all feel and just by us accepting that we can look after our children. However you do not know how we feel about our child having t1. We hate it with every single bone in our bodies, with every fibre of our being and yet because a mum tests 10 times in a 24 hour period, one of them overnight, someone has deemed her to be OCD. Marvellous.

So I sincerely say thank you to everyone else who has answered, it is good to know that most of you understand what we do.

 

[StephenM]

First off – thank you for all those parents whose children have diabetes and are on pumps. You provided an interesting and informative insight into the problems you encounter in managing the disease. I still think, however, that it is possible to over test. The consultant I was seeing a few years ago told me that there is a danger of people chasing their own tail and going between hypos and elevated BGs to frequently (there is some evidence that variable BGs – despite a good average – can be worse than a slightly higher average with steady BGs).


Now to reply to some specific points:-

Stephen come on everyone is waiting for your replies, don't be scared now, dropping your wayward views as usual and then not coming bck for a few days.be careful your becoming almost predictable

To be polite – what a load of tosh. I am coming up to my 49th anniversary of Type I diabetes this year. In that time I have graduated and persued a successful career. In addition, as work is not everything, I have developed a number of outside interests. This means I have neither the time nor inclination to check this or any other website on a daily basis. Therefore it may often be a few days before I reply.

Do you know what I am quite heartened and happy. I haven't seen the article yet but was astonished at Stephen's response, how thoughtless of him, does he have a child with type 1 !!!!

You will have seen in the earlier part of my response that state that I have been Type I for nearly 49 years. This means I have been diabetic as a child, a teenager, a young adult and now as a middle aged person. Therefore I do have a lot of experience of diabetes at all stage of life. My statement was not thoughtless just an expression of what I think. I have also been a parent (although not of a diabetic child) so know what it is to be concerned about your child. So I do understand far better than you may think! At the end of the day most people (on this forum) have, or have someone with diabetes, and must manage the condition to try and minimise long term complications associated with the disease.

 

[Steff]

To be polite – what a load of tosh. I am coming up to my 49th anniversary of Type I diabetes this year. .

Why be polite your not usually, if your coming up to your 49th anniversary then even more so some of your comments like this OCD one are even worse..

Anyway not starting my week off with this kind of thing