20 tests aday; we're obsessed with test-mania; need practical ways to test less

[payam7777777]

we test before breakfast, 1hr post-breakfast as well as 2hr post-breakfast, 3hr post-breakfast and 4 hr post-breakfast, then it's time for lunch and we do the same for lunch and then dinner, we also test at 2:00am every night. long story short, we test every hour during the day.

we use thumb base not finers for testing and we use aviva+multiclix.

control is quite good thank God. no lows/highs at all. a1c 6.1

but it seems like an obsession.

on the other hand avoiding lows and highs seem impossible with less tests even though basals and carb factors are adjusted pretty well. testing 1hr post meal gives us a lot of good/useful information.

i'm looking for practical do-able ways to reduce the number of tests.

on a side note it seems to me that if one wants to avoid 1hr post meal spikes [apparently by givin more insulin] then they would be experiencing difficulties with fast drops in the 2nd-3rd hour. a catch-22.

[wilf]

Hi my name is wilf, and I am a chronic tester.. though not quite as extreme as you. You didn't mention whether you're pumping or injecting, but you should be able to wean yourself down to 10 tests a day with a little work.

The key is to understand the effects that the insulin you're giving has, so that you know with some certainty what trend BG values will be on. Then all you need is to check every couple of hours to confirm the trend.

I would try stretching out the time between measurements. Except when you child is low, force yourself to start extending the minimum time between measurements. Say 1 hour apart today, 70 minutes tomorrow, 80 the next day so that by the end of a week you're at 2 hours apart (which incidentally is where we're at, after weaning ourselves down)..

[Lee]

I don't know what to tell you about avoiding those test...except - maybe cut back to testing so much every other day, then every two day, etc.

As for post meal spikes, we give our insulin early based on the times given by our Dr.
Time to wait between insulin and eating
<60 treat low 1st, reduce insulin for meal or activity
60-80: Don’t wait, take shot and start eating right away
80-99: wait 10 min
100-149: wait 15 min
150-199: wait 20 min
200-249: wait 25 min
>249: wait 30 min

That helps get the insulin working as soon as the food gets in there, mimicking a real pancreas.

[kel4han]

We have learned to pre-bolus which works wonders. We also avoid the problem food -cereal- for Maddison. That ratio is alot more insulin for cereal. I was once obsessed with testing too, to see the big picture. Seeing the 1st 2nd and 3rd hour was an easy way to figure things out. We were finally comfortable with what we were seeing and FINALLY made it to just the 3rd hour for testing. No advice, but I understand why we get obsessed like this! :eek:

[payam7777777]

You didn't mention whether you're pumping or injecting
pumping.

The key is to understand the effects that the insulin you're giving has, so that you know with some certainty what trend BG values will be on. Then all you need is to check every couple of hours to confirm the trend.
and the problem is that there are so many variables affectin bgs that even with well adjusted basals and boluses and our religious carb count the trends are some times not what we expect.

I would try stretching out the time between measurements.
very good point. thanks.

[payam7777777]

just the 3rd hour for testing.
afaik the 2hr post meal test is very important. donot ignore it please.

[Abby-Dabby-Doo]

I don't know what you are doing with the 1 hr post checks. Even if you know what that number is... what can you do with it?
Are you using the features of the pump- dual wave and such? Are you logging stuff down? You have to see patterns, one thing about kids they like to eat the same things over and over.

[Nancy in VA]

We are doing 2-hour and 3-hour checks right now just because we are on the pump. We used to do 2 hour checks until we learned quickly that it took Emma 3 hours to process Humalog (and 4 hours after breakfast). After we learned that, the interim checks mean nothing to us - because the insulin is still working. We do pre-meal and post-meal at the end of what we believe the effectiveness and then anytime she's acting like she might be low

[Mama2H]

Payam, didn't you get the cgms? I would think that should cut down on your tests dramatically.

[Heather(CA)]

we test before breakfast, 1hr post-breakfast as well as 2hr post-breakfast, 3hr post-breakfast and 4 hr post-breakfast, then it's time for lunch and we do the same for lunch and then dinner, we also test at 2:00am every night. long story short, we test every hour during the day.

we use thumb base not finers for testing and we use aviva+multiclix.

control is quite good thank God. no lows/highs at all. a1c 6.1

but it seems like an obsession.

on the other hand avoiding lows and highs seem impossible with less tests even though basals and carb factors are adjusted pretty well. testing 1hr post meal gives us a lot of good/useful information.


i'm looking for practical do-able ways to reduce the number of tests.

on a side note it seems to me that if one wants to avoid 1hr post meal spikes [apparently by givin more insulin] then they would be experiencing difficulties with fast drops in the 2nd-3rd hour. a catch-22.


I'm sorry, I don't mean to sound harsh. (In fact I really hope I don't) But, testing your child that often sounds like your headed for some seirous burnmout and rebellion when they get older. That alone is a VERY good reason to slow down and not micro manage sooooo much. The isulin is definately NOT finished working by an hour after eating, probably not after 2 hours either unless your on Apidra. At 3 hours you will know if it worked or not. 4 hours after a meal doesn't do much for you either...Maybe you could explain some of the reasoning behind all that testing:confused:

High and lows are part of Type 1. You can't avoid them all. It's normal to have some spike after they eat. I know your trying to do the best for your child, that's obvious. But testing this often might have the opposite affect later and make them be totally sick of taking care of themselves...What does your Endo say about testing every hour?

YDMV, but here's an example of what we do, Seth's A1c's have always been very good too. Not 6.1. But 6.7 to 7.3 for the most part. The highest ever was a 7.6 at the onset of puberty...
Before breakfast
Before lunch
Before dinner
3 hours after dinner
3 hours after meals if I'm trying to figure something out (Not all the time)
Before, during and after exercise
When he feels low and throughout treating...
If he seems angry or upset

Take care, I hope this helps, it seems like your looking for a reason to slow down a little:cwds:

[Adinsmom]

Hi Payam,

Would you mind telling me what information you are getting from 1 hour post meal test, the 2 hour post meal test, and the 3 hour post meal test? I know this sounds silly but how does this allow you to make adjustments? We start the pump next Friday and am trying to gather as much tips as I can.

Thanks.

[payam7777777]

I don't know what you are doing with the 1 hr post checks. Even if you know what that number is... what can you do with it?
suppose we are 100 before lunch, then if 1hr pp is say 200 we conclude that for some [unknown] reason the bolus has been too small and the 2 hr pp is gonna be in the 250s, so we give another .1 or .2 unit bolus at 1hr pp and thus prevent a sky high 2hr pp.

Are you using the features of the pump- dual wave and such?
Yep.

Are you logging stuff down?
we did that religousely for 6+ months:
http://forums.childrenwithdiabetes.com/showthread.php?t=2581&highlight=ali%27s
now that we test more often we have the whole picture better.

[payam7777777]

Payam, didn't you get the cgms? I would think that should cut down on your tests dramatically.
you're right.
we did get the cgms but it didnt live up to our expectations. the sensor comes off too soon, we used tegaderm and whatnot to secure it in place but to no avail and mastisol is not found here in iran.

[kel4han]

Dont get me wrong, we used to do 1hr, 2 hr and 3hr post.

The 1hr post will tell you if you are having a huge spike, then a huge drop which makes you feel like crap. This check helps you learn to pre-bolus correctly.

The 2 hour is a better idea if you are pretty close in your ratio. If we eat something out of the ordinary, or aren't sure of the carb count, we are pumping so we can check the 2 hour and give a correction for a high or pending low.

Our duration is 3hrs. Our 3 hour check leaves us where we should stay between meals (with a 20pt variance most times) A correction definetly needs to be made at this time for a high. Especially when the next meal is soon to come so we can avoid an even higher high:eek:

The 4 hour I occasionally check to make sure basals are set right. If we make it to 5 hours without eating I occasionally check then too, to varify correct basals.

Even our CDE doesn't suggest testing this way, but they dont live with constant numbers, we do, and we learn ALOT from all that testing in the beginning, or when making changes. The 1,2,3 hour to me, is the only way to maintain stable numbers. Perhaps your child is spiking to 300 and dropping to range by hour 3. You dont want that spike. I can assure you, it does not feel good to ride this rollercoaster our kids ride.

[payam7777777]

I'm sorry, I don't mean to sound harsh. (In fact I really hope I don't) But, testing your child that often sounds like your headed for some seirous burnmout and rebellion when they get older.
dont be sorry, as a matter of fact i sincerely appreciate your concern about a possible rebellion. and yes you're right about that.


What does your Endo say about testing every hour?
*sigh* our endo... the so called best in town didnt even know how to spell glargine. here in iran health care is very bad. our endo IS a pei-endo but she has almost no knowledge about pumps.

it seems like your looking for a reason to slow down a little:cwds:
yes.

[payam7777777]

Would you mind telling me what information you are getting from 1 hour post meal test, the 2 hour post meal test, and the 3 hour post meal test?
the 1hr pp help us suppress the spike.
the 2hr pp helps evaluate how well the bolus has matched the foo
and the 3hr pp helps prevent the effects of the fast drop between 2nd and 3rd hour.

[Momof4gr8kids]

Payam, what about doing a 1 hr, and then a 3 hour. If you find your nephew drops before the 3 hr give a small snack that will prevent that a little. Depending on the 3 hr nix the 4 hour and do a 5 hr. Just try spacing it out further and further. Maybe you should start with 20-30 minutes further out, but still do the 1 hr, so something like this. 1 hr post meal, then 2hr 20 min post meal, and then 3hr 40 min post meal, and you are so close to your 4 hr that I think you could nix that one.

[payam7777777]

Dont get me wrong, we used to do 1hr, 2 hr and 3hr post.

The 1hr post will tell you if you are having a huge spike, then a huge drop which makes you feel like crap. This check helps you learn to pre-bolus correctly.

The 2 hour is a better idea if you are pretty close in your ratio. If we eat something out of the ordinary, or aren't sure of the carb count, we are pumping so we can check the 2 hour and give a correction for a high or pending low.

Our duration is 3hrs. Our 3 hour check leaves us where we should stay between meals (with a 20pt variance most times) A correction definetly needs to be made at this time for a high. Especially when the next meal is soon to come so we can avoid an even higher high:eek:

The 4 hour I occasionally check to make sure basals are set right. If we make it to 5 hours without eating I occasionally check then too, to varify correct basals.

Even our CDE doesn't suggest testing this way, but they dont live with constant numbers, we do, and we learn ALOT from all that testing in the beginning, or when making changes. The 1,2,3 hour to me, is the only way to maintain stable numbers. Perhaps your child is spiking to 300 and dropping to range by hour 3. You dont want that spike. I can assure you, it does not feel good to ride this rollercoaster our kids ride.

a completely agree here with you.

[Nate'sMom]

Hi You didn't say what age your child is, or if you bolus before or after meals. If you bolus after, and you're getting highs 1 hour after, you might bolus before the meal, if you know he/she will be eating everything. Sometimes my son dawdles around with his food and it stretches out to 1/2 hour from start to finish and the beginning part of the meal has been in there working a while before I get him bolused, so if I know it's something he's gonna clean his plate on I'll bolus him before hand (he's also afraid of going low, so if I bolus him before I know he'll do his best to eat it all)
We also check bg a lot, especially before reporting to his Dr. (at meals, 2hrs post meal, before bed, 2 hrs after sleep, 12 am 3 am it adds up) but if you are trying to cut back add a half hour to each test (instead of checking at 1 hour go to 1 1/2 hrs etc) as you begin to see patterns you'll feel more comfortable waiting a little longer and doing it less. It's hard cause you want good control, but you also want to poke them the least amount you can. Good luck!:rolleyes

[Abby-Dabby-Doo]

Payam~
Take a deep breath, you're a wonderful parent/uncle! I applaud your efforts, I really do. But your going to go insane doing this, drive him/her to hate it, and those poor fingers. D is going to do crazy things with blood sugars, it's the nature of the disease. I don't think these testings need to be done day in and day out. Get your pattern and work off of it, bad numbers are going to happen. Your child/nephew is very lucky to have you!!! :D

[payam7777777]

Payam, what about doing a 1 hr, and then a 3 hour. If you find your nephew drops before the 3 hr give a small snack that will prevent that a little. Depending on the 3 hr nix the 4 hour and do a 5 hr. Just try spacing it out further and further. Maybe you should start with 20-30 minutes further out, but still do the 1 hr, so something like this. 1 hr post meal, then 2hr 20 min post meal, and then 3hr 40 min post meal, and you are so close to your 4 hr that I think you could nix that one.
sounds good, thank you. you see part of the problem is that any kind of activity even a short activity in the 1st hour post meal makes a huge difference in the 1hr pp bg.
tonight we were 120 before dinner and we didnt test the 1hr pp, instead we did the 1.5 hr pp and it was 70!! just because Ali did a little jumping game in the 1st hour pp. if we hadnt done this bg test and we wanted to do it 2hours after the meal then the BG would be very low.

[payam7777777]

Hi You didn't say what age your child is, or if you bolus before or after meals.
Ali is 4 years old and we do a 15 mintute pre bolus.

if you are trying to cut back add a half hour to each test (instead of checking at 1 hour go to 1 1/2 hrs etc) as you begin to see patterns you'll feel more comfortable waiting a little longer and doing it less.
yeah, it seems to be our only good choice, thanks.

[susan]

I had never thought to test 1 or 2 hrs after meals..However, after reading this I got curious..At breakfast he was 132, 1 hr later he was 185..Sooo not to sound stupid, but what does that mean for Davis..The breakfast bolus/basal is good or what..I can see where I could become obsessed with checking so often(I guess that's why I never thought to) When we first got his cgms I looked at it ALL day the first day..

[payam7777777]

Payam~
Take a deep breath, you're a wonderful parent/uncle! I applaud your efforts, I really do. But your going to go insane doing this, drive him/her to hate it, and those poor fingers. D is going to do crazy things with blood sugars, it's the nature of the disease. I don't think these testings need to be done day in and day out. Get your pattern and work off of it, bad numbers are going to happen. Your child/nephew is very lucky to have you!!! :D
Oh, thank you Lanae.

[Mary Lou]

It is so easy to focus on those numbers and poke, poke, poke....

You are being a vigilant and careful caregiver. Your nephew is fortunate to have someone care for him so deeply.

Both my children pump, one has the CGMS, and I find that to be very helpful in knowing where the BG is heading without poking, but you mentioned it didn't work out for you. May I ask how long you tried? We feel like the learning curve was pretty steep and expectations very high, but now after a few months the payoff is worth it.

How often do you make adjustments to the basal rates and meal ratios? Every day? Every two days? Generally speaking it takes a few days for the changes to sink in and take hold. We wait two or three days for a pattern to emerge. Make changes in the range of 10% increases or decreases either to the bolus ratios or basals (4 hour maximum amount to change at one time) and then WAIT 3 - 4 days to see what the affects on BG are. Our endo wants us to wait a week, but we just can't.

We check our boys 10 - 12 times per day/night and that sometimes seems excessive. We often ask ourselves if we are doing this for their care or for our own piece of mind. Not the same thing and I worry about making my obsessions their problems.

The AIC is important, very important, but so is the mental health of our children. I'd worry that poking them too much will make them resent the care and see diabetes as more life-changing than it needs to be.

Take care and good luck.

[Rachel]

Payam,
I think we all live balancing a host of different - and competing - fears for our children, in terms of immediate and long term issues and in terms of physical and emotional health.

If I could make a box here, I'd have four quadrants ....
Short term physical ------- Long term physical
Short term emotional ----- Long term emotional

I think one of the things that might help is to think through where you are focusing right now. The fabulously low A1C (that is amazing!) may indicate that long term physical is getting the most attention, perhaps at the risk of more frequent immediate lows (short term physical) and emotional issues, both long and short. I would never ever say not to tend to the long term physical issues, but maybe just to shift your focus for awhile on the short term physical and emotional.

One practical way to do this would be to raise the BG targets during the day, just letting the numbers run a little higher. Then there would be more margin of error on the lows and you wouldn't have to test as much to catch them. You could still test as much during the night. 10 hours of sleep, in pretty good range, with no memory of fingersticks can counter a day with more variation and a little higher numbers.

Also, maybe you could identify specific days when you are testing basals or bolus ratios and let the other days be ones where you gather less information. So one day with all the post-meal tests and then 2-3 days of tests mostly pre-meal or if anything looks or feels off.

All my best.
Rachel

[momofphoenix]

I think it is great that you have such great control. I myself can not test that often, first off my son would refuse fingersticks after about the 7th time and I dont think the information would help much after only 1-2 hours. I would be more worried with the long term emotional effects this has on your nephew.

I agree with the other parents/caregivers that have said to maybe push the bs checks back by a half hour for each check that might help eliminate 2-3 checks per day and give his little fingers a rest.

Does your nephew recognize signs of going low or high? If he does then maybe he can tell you "I feel low/high I need to check my bs" that would also help with less fingersticks.

I hope you find a way to test less keep us updated

[OSUMom]

our endo... the so called best in town didnt even know how to spell glargine.

I've found many competent doctors who are terrible at spelling I wouldn't hold that against the doctor, but certainly there can be other issues pointing to the fact your doctors are not all that capable.

Your nephew is blessed to have you caring for him and the concern you obviously have for his overall well being. :cwds:

[payam7777777]

It is so easy to focus on those numbers and poke, poke, poke....
hmmm...


Both my children pump, one has the CGMS, and I find that to be very helpful in knowing where the BG is heading without poking, but you mentioned it didn't work out for you. May I ask how long you tried?
we tried 4 sensors. and despite our comprehensive knowledge of cgms the sensors would come off in the 2nd day.

How often do you make adjustments to the basal rates and meal ratios? Every day? Every two days?
every month or so.

[payam7777777]

The fabulously low A1C (that is amazing!) may indicate that long term physical is getting the most attention, perhaps at the risk of more frequent immediate lows (short term physical)...

Mmmm... one seducing aspect of so many tests is that we dont have lows at all.Thank you Rachel for your thoughtfull reply.

[payam7777777]

I would be more worried with the long term emotional effects this has on your nephew.
yeah...

I agree with the other parents/caregivers that have said to maybe push the bs checks back by a half hour for each check that might help eliminate 2-3 checks per day and give his little fingers a rest.
this seems to be THE [only?] solution.


Does your nephew recognize signs of going low or high? If he does then maybe he can tell you "I feel low/high I need to check my bs" that would also help with less fingersticks.
sometimes when he's low he says he's hungry. but it does not happen all the time. one yearinto this and we have not yet told him nothing about D.

[wendyc]

yearinto this and we have not yet told him nothing about D.


Why?

It will only help him identify how his body feels when he is either low or high. There is no need to keep the info from him, it will only help him in the long run.

Knowledge is power.

[BrendaK]

Just curious why you haven't told him anything about D? I think the earlier to know how to communicate what they are feeling, the better. You don't have to tell him everything, but having him know to say he's feeling low is really helpful.

[momofphoenix]

So if you havent told him anything about D does he know why you are checking his blood sugar and why he has to wear a pump? I'm asking because he has to know that something is not right.

When my son is low he usually shows no symptoms I always ask How do you feel, What does your tummy feel like, Where does it hurt. I am showing him how to identify his symptoms of lows I also do this when he is higher then his target range. My son was dx'ed almost 4 years ago and we are always teaching him about D. I think the knowledge is going to only help them in the long run. Is there a reason you have not explained D to him yet? Also I might have missed it but how old is your nephew? I truely beleave it is never to early to learn about D and your body.

[payam7777777]

Why?

It will only help him identify how his body feels when he is either low or high. There is no need to keep the info from him, it will only help him in the long run.

Knowledge is power.
i know, but you see... it's very very hard to tell him that he has a chronic desease and that for the rest of his life he'll have to cope with it and ... and ... *sigh*
i dont know it's just sooo hard f or me to even think about telling him the fact.

[payam7777777]

Just curious why you haven't told him anything about D?
i dont know how to tell him. really hard issue for us.

[payam7777777]

So if you havent told him anything about D does he know why you are checking his blood sugar and why he has to wear a pump?
he... mmm... just thinks that's the way it is, because i think it's just/all what he remembers from the ~begining. he hasnt yet noticed that other children dont have pumps... he just thinks it's normal to be attached to a pump.


Is there a reason you have not explained D to him yet?
the reason... it is somewhere deep down inside us... it's just that i cant figure out where it really is and what it is... it's probabely related to denial some how


how old is your nephew? I truely beleave it is never to early to learn about D and your body.
he's 4 years old.

[3js]

payam, I can understand your family feeling bad for your nephew:cwds: It is hard to tell a child they have a chronic illness. But the fact is, it`s not the end of the world, and kids are VERY resilient. My son has 3 chronic illness`- asthma, ocd and d. The former 2 he has had since 18mos and 4yrs respectively. He also has terrible allergies. It p**** him off, but he copes just fine. He even jokes about it. And he certainly does everything every other kid does. He`s a regular kid with some disorders.

If you guys treat it like it a manageable situation, he will too.

[ange_mom]

Our son is almost 4 and was diagnosed in March. The "good" thing for us was that David had watched his daddy check his sugar and give himself insulin so we just told him he was like daddy. I am constantly telling him he has diabetes and needs insulin because part of his body doesn't work. I explain it all to him. he can't understand everything, but he knows to tell me if he feels low.
i don't tell him he has a cronic, life-threatening disease, but I do tell him if I don't give him this shot of insulin, he will feel sick and we might have to go back to the hospital (when he is fighting it).
Your nephew knows that you don't do fingerstick checks on yourself and must know that there is something different about himself.
My husband always tries to hide his diabetes and I don't want my son to be that way.
With the issue of the stuff to stick on the sensor, could one of us here in the US or Canada buy some for you and send it to you?
It is such a hard issue to deal with ourselves, it can be so difficult to tell them. I usually talk to David about it while we are cuddled up on his bed when he is sad about the finger pricks or needles. i also take that opportunity to tell him about pumps and tell him we will get him one someday (when we can afford it :)
Kids can handle almost anything as long as they are loved and it sound like your nephew has amazing people around him who love him!

[payam7777777]

thanks 3js.
by the way why are you not using a pump?

[3js]

thanks 3js.
by the way why are you not using a pump?


oh boy, don`t get me started.....:D

I`m in Canada, and it is the norm to not be allowed until after 1yr dx :rolleyes:

[payam7777777]

With the issue of the stuff to stick on the sensor, could one of us here in the US or Canada buy some for you and send it to you?
thanks. but what we need is mastisol and it has alchohol in it so the post office doesnt accept to post it.


i also take that opportunity to tell him about pumps and tell him we will get him one someday (when we can afford it :)
why? dont you have insurance there?

[payam7777777]

oh boy, don`t get me started.....:D

I`m in Canada, and it is the norm to not be allowed until after 1yr dx :rolleyes:

NO!
fight with this norm. it's wrong. either convince your endo or choose another endo, it's important to have a pump ASAP, nph is so old school.

[Hollyb]

Actually, with respect it's not necessarily the norm in Canada, though it may well be the norm within a particular practice. Our doc was ready to sign our letter of medical necessity within three month of dx. For him, it was a matter of had we demonstrated the ability to count carbs, to monitor blood sugar regularly, to trouble shoot highs and lows? So if you are keen to get your child on a pump, it might well be worth doing a little research and presenting the evidence to your endo or ped. I seem to recall one study looked at moving young kids directly to the pump at diagnosis, with favourable results. (Sorry to hijack the thread).

Payam, as others have said, I think you are wise to start working now at easing back to a more reasonable check schedule, because as your nephew gets older you are going to drive him nuts. And when he's in school that number of checks just won't be practical, and it will make YOU crazy to have to cope with that. Also you can't necessarily fine-tune insulin doses as closely as you seem to be attempting (though on the other hand, I guess it seems to be working for you). I am just thinking of how some foods are "slow" and some "fast." The fast carbs seems to be over fast too, so if we corrected a spike at one hour for sure Aaron would be low at 2.5 or 3. You don't find that?

[3js]

Actually, with respect it's not necessarily the norm in Canada, though it may well be the norm within a particular practice. Our doc was ready to sign our letter of medical necessity within three month of dx. For him, it was a matter of had we demonstrated the ability to count carbs, to monitor blood sugar regularly, to trouble shoot highs and lows? So if you are keen to get your child on a pump, it might well be worth doing a little research and presenting the evidence to your endo or ped. I seem to recall one study looked at moving young kids directly to the pump at diagnosis, with favourable results. (Sorry to hijack the thread).

Payam, as others have said, I think you are wise to start working now at easing back to a more reasonable check schedule, because as your nephew gets older you are going to drive him nuts. And when he's in school that number of checks just won't be practical, and it will make YOU crazy to have to cope with that. Also you can't necessarily fine-tune insulin doses as closely as you seem to be attempting (though on the other hand, I guess it seems to be working for you). I am just thinking of how some foods are "slow" and some "fast." The fast carbs seems to be over fast too, so if we corrected a spike at one hour for sure Aaron would be low at 2.5 or 3. You don't find that?

In our province it is the norm, unfortunately. There are 4 pedi-endos in the province, and this is standard practice. As of April/07, Lantus has been approved, so that gives an idea of how far behind things are here. I notice you are in Ontario, so I guess it differs from province to province.

[hypercarmona]

Payam,
I tested 20+ times a day during my last pregnancy because of hypo-unawareness, and after I gave birth I found that it is indeed very difficult to cut out that extra information once you are used to having it.

I've cut back to before meals, @ 1hr postprandial, @ 2hr postprandial, before, during and after exercise, then before bed and once at 3 AM. (And before I drive) I gave up the 3 and 4 hour postprandial test at supper time first, since it was usually a static number (never really dropped or rose fast at all during that time), and then moved on to cut the 3 and 4 hour for my other meals.

I kept the 1 and 2 hour tests because those are the ones that I feel have the most impact (for example, if I rose more than 2 mg/dl a minute for the first hour after a meal, I know I need to correct a little or I will go really high by the 2 hour mark OR on the other hand, if I've dropped under 100mg/dl and it's only been an hour after I've bolused, I REALLY need to eat or I will have a serious low), and occasionally I still do a 3 hour test if I'm having problems. I feel that if my insurance doesn't want to cover a CGMS for me, I might as well get my money's worth out of the test strips they will cover.

I'm not sure if I could see a 4 year old tolerating as many tests as I perform daily for very long. On the other hand, with the control that the frequent testing has given you, and if he's not objecting at this point, I would probably continue as you have been doing if everyone is comfortable. When he's old enough to start rebelling, I'm sure that a compromise (or a new testing schedule) could be worked out and he could probably do many of the tests himself.

[Twinklet]

Hi Payam,

Wow, you've received lots of good information and advice here. I tend to be very Type-A myself and found that I needed to loosen up on the whole D thing a bit. While we've typically not tested 20 times a day, our old norm was 12-15. We have now cut back to about 7-8 times a day with very little change in A1C. The fact was that we ALL got very burned out, tired and resentful. I tried so hard to control every single number and the fact is, we just can't. We just cannot do as good of a job as a real pancreas can and it's not healthy to have that expectation of ourselves. If we even try we find that D consumes our every though and every action. You can't let it have such a hold on you, you will go crazy!

We do test more frequently when changes need to be made, but we try really hard not to test just to satisfy curiosity. Micro-managing D can lower the A1C, but at what cost? I suspect there's little difference in risk of complications between an A1C of 6.1 and 6.5. We need to strike a balance between physical and mental health here.

I also think you need to pull it together and discuss D with your nephew. It will be a part of his life until a cure is found, and he needs to know that at some point. My daughter handles this MUCH better than I do--I know it's hard. But children are very resiliant!

Good luck to you and let us know how you are doing.

[Ellen]

A suggestion for cutting down may be to test yourself 20x per day for the next week or two. Having a similar experience may open your eyes to how it interferes in daily activities.

I would like to understand the philosophy of administering intensive medical intervention around the clock and not explaining anything whatsoever to a child. Is Ali of normal emotional development? Most 4 year olds are very curious. Children can be extremely smart and aware.

[wendyc]

i know, but you see... it's very very hard to tell him that he has a chronic desease and that for the rest of his life he'll have to cope with it and ... and ... *sigh*
i dont know it's just sooo hard f or me to even think about telling him the fact.

Payam, I respect that it is hard for you and his parents to accept that your nephew has a chronic condition. I however believe that you are only hurting your nephew by not telling him he has diabetes. What if God forbid, you were seperated from him, and something happened? He needs to be able to communicate that he has diabetes. I know everyone says he will not get out of my sight, but the reality is...something can happen. Also, by understanding that his body does not work like everyone elses will help him in identifying the nuances of blood sugar ups and downs.
My daughter was four when she was diagnosed, and we told her from the start what was going on. This alleviated a lot of fear and made her understand why she was being tested so much and hooked up to IV's.

There will be a point, very soon, when he realizes that others around him are not being tested constantly and wonder why others don't have a pump. School will be coming soon and you can no longer keep him in this bubble. He is going to begin to fight it. I'm sorry if I sound harsh, but this is the reality of things. Please reconsider your position on this.

[momofphoenix]

When was your nephew dx'ed? If this is "norm" for him then I am assuming he was quite young. My son was dx'ed at 3 and from the start we explained that he had diabetes, he was told "You can still do everything you want to we just need to be more careful" he resents diabetes sometimes but this is what he remembers fingersticks and injections. Like I said in a nother response my son is 8 dx'ed at 3 we do 5-6 fingersticks a day and 8-10 injections per day he is not on the pump as of yet and it has been 4 years.

I really think it would be healthy for your nephew to understand his body and to know he has diabetes. As long as you put it into kid friendly words he wont be scared to death. I NEVER say you can die if you go to high/low I tell my son, if you go really low or really high you can get sick and have to go to the hospital this helps him to understand eating and medication managment...

keep us updated on how you and your family are doing

{{HUGS**** to you this is such a hard disease and it affects everyone in the family and around us......

[badshoe]

So do something with him instead of testing so much. Play ball, read a book, pop in a dvd

See the kids not the numbers

[payam7777777]

We need to strike a balance between physical and mental health here.

How? that's the question.

[payam7777777]

A suggestion for cutting down may be to test yourself 20x per day for the next week or two. Having a similar experience may open your eyes to how it interferes in daily activities.
hmmm...



I would like to understand the philosophy of administering intensive medical intervention around the clock and not explaining anything whatsoever to a child. Is Ali of normal emotional development? Most 4 year olds are very curious.
yes, he is.

[payam7777777]

There will be a point, very soon, when he realizes that others around him are not being tested constantly and wonder why others don't have a pump. School will be coming soon and you can no longer keep him in this bubble. He is going to begin to fight it. I'm sorry if I sound harsh, but this is the reality of things. Please reconsider your position on this.

i appreciate your copnsiderate reply.

[payam7777777]

When was your nephew dx'ed?
last year when he was 3.




I really think it would be healthy for your nephew to understand his body and to know he has diabetes. As long as you put it into kid friendly words he wont be scared to death.
i think he'll be sad if we tell him he has a desease.

[payam7777777]

So do something with him instead of testing so much. Play ball, read a book, pop in a dvd

See the kids not the numbers
playing, reading an watching cartoon dvds are part of daily activities we do with him.
but take for example the mornings when he is in the kindergarden: (his mother goes to the kindergarden with him every day from 8:00 to 12:00). Now in the kindergarden they feed the kids with milk, fruit, veggies and cakes every day and according to my sister it'll be a nightmare if she cant test him every hour because they eat 2 or 3 times during the day there.

[ange_mom]

In Canada, most insurance doesn't cover the whole cost of the pump, but will cover the cost of the pump supplies. We can get 2500 of the 7500 covered but with two diabetics in the house, 10 000 dollars is a lot to come up with. We are going to try to get my husband out of the dark ages first, then work on one for David.... It is unusual around here (from the reactions I have received at appointments) for kids to go on a pump. Our pediatrician does have one child on one, but both parents have type 1 and are on a pump. he wants my husband on one before we put David on one.

[Amy C.]

Surely you must have started to notice enough patterns that you could reduce some of the tests. Perhaps a gradual withdrawal from say the 1 hour test -- do it for one meal rather than everytime might work. See if the control is really lost by testing less.

I imagine that most of our children would protest if tested as often as your nephew is -- I can barely get my 13 year old to test 8 times a day. Some of them I have to do.

It is too bad the CGMS didn't work for your nephew.

[thebestnest5]

Popping in for my 2 cents worth on why I believe it's important to talk with the child about diabetes.

I think the word disease would have scared Livia when we first told her. I refer to diabetes as a "condition". Liv has diabetes, a condition, in which her pancreas does not make all the insulin her body needs. We strive to create a very positive/optimistic picture of diabetes for her.

First messages are the most powerful. What is the reasoning to wait until the child hears a negative, wrong, or ignorant message about diabetes and then try to correct the misunderstanding?


There is some unattainable myth of the "perfect" body...when the truth is "everybody had their things" to deal with in life. For some it's diabetes and others it's MS or cancer. Maybe for others it's battling a mental illness. Livia and I talk about this a lot. As Livia's mom, I wanted to make sure that Livia had a optimistic and balanced picture of diabetes and so I made sure that I talked with her about her "tired pancreas" and that we helped it with insulin. I made sure that she knew she was absolutely one perfect Livia and diabetes is not something that would change that...diabetes is just "her thing".

<><
Sheree

[Ali]

last year when he was 3.

i think he'll be sad if we tell him he has a desease.

Payam
Yes he may very well feel sad. But that is OK. Children and adults have many sad times over a lifetime. If you explain in kid freidly terms about the disease he will have some adjustment but probably not very extreme. Young children tend to live very much in the moment and assume and expect the best. And yes having type one is a pain but most people live long, happy, very productive lives with it. FYI, I probably had A1c's between 8 and 10 the first 15 years post diagnosis. This was back in the days of no fingersticks and one or two shots a day. I am very healthy and have been type one for 36 years. Good luck. Ali

[payam7777777]

I think the word disease would have scared Livia when we first told her. I refer to diabetes as a "condition". Liv has diabetes, a condition, in which her pancreas does not make all the insulin her body needs. We strive to create a very positive/optimistic picture of diabetes for her.

First messages are the most powerful. What is the reasoning to wait until the child hears a negative, wrong, or ignorant message about diabetes and then try to correct the misunderstanding?


Good points thank you.

[D-Dad]

Do you pump? Can you use a super bolus to help with the spike? I think you stop checking so much. If you want to check this much you should limit it to a few days a month. I'd also try to think of more ways to get the CGMS to work.

[badshoe]

Sorry if this comes across harsh, you are loving, giving, care givers yet it seems you reason for not being clear about the diabetes are about you not about him. You don't want to be the bad guys who make him sad. Yet are way over testing the poor kid.

You need to separate your fear and well being. You are not alone in this we all struggle with it. One of the guys at CDW FFL talked about how the big issue for parents with their kids diabetes is we have to admit we can't protect them from everything. This big bad thing that scares us out of our minds has got into our kids and we can't protect them from it. We cant take it and let them go without it.

Yes he is young but I bet he is as smart a a whip. He already knows you are doing stuff to him the other kids don't do. He has to know why or he will assume he has done something wrong to be treated the way he is.

He hasn't done anything wrong. He needs to know why he does finger sticks. He has to grow and take on as much as he can for himself as soon as he can. He has to own the diabetes before he reached the rebellion of teen years so that the natural separation of adolescents from their child hood care givers isn't a seperation from diabetes care.

You need to take two steps now. 1) Tell him he is a person with diabetes. 2) limit yourself to about half the test you are now doing.

Your Diabetes May Vary. It OK for it to vary.

I find it hard to think about the kids as kids too. We all do. We can help each other find the focus past diabetes.

Write us a few times a week about some non diabetes activity that he is doing, preschool, play, a friend, something without mentioning his BG or diabetes. We will write back the same.

I am going to start a thread called Kids Success, No Diabetes Talk Allowed (http://forums.childrenwithdiabetes.com/showthread.php?t=7444). Will you join me there and sharing fun kid stories that don't mention diabetes.

[payam7777777]

Bennet,

thank you for your post. i appreciate your concern.

[badshoe]

Bennet,

thank you for your post. i appreciate your concern.

Thanks, I love you for your strong efforts for your nephew.

You are doing great.

[Ellen]

Respectfully, is there a stigma in your culture associated with having type 1 diabetes? Do you have concerns about Ali sharing information about his diabetes?

[payam7777777]

Respectfully, is there a stigma in your culture associated with having type 1 diabetes?

nothin special in the culture, dear Ellen. actually people here -especially relatives and friends- turned out to be/behave way much better than we even expected when it comes to D, but you see the general rule applies here too: there are always stupid people who just dont get it.

Do you have concerns about Ali sharing information about his diabetes?

No, not at all, not like that.

[Nelson]

I just gotta jump in here. I have a couple comments:

1) Even checking every hour isn't enough to get what I would consider a really good handle on blood sugars. To really understand bloodsugars and to catch all the peaks, probably every 15 minutes or more is needed. So, it's probably time to give up on comprehensive control without a GCMS because even with testing every hour, you don't have it!!

2) If you don't want to drive yourself and your child mad with blood tests, only test at times when you can take action. One hour post meal is too soon to take action, but two hours post meal makes a lot of sense to catch the lows or treatable highs early. You can then skip the three hour post meal if you have confidence that your 2 hr post meal correction is sound.

3) Go ahead and test like mad every once in a while (maybe a couple days out of every month) to keep tabs on some of the major "details" of your child's blood, but then give up trying for a detailed understanding during most of the rest of the month when you are just acting to maintain control.

Good luck,
Nelson

[tuckerk]

I agree with some of the other parents. 20 times/daily is extreme for an adult or child, unless some other indication (illness or patterns of high/lows).

By now I am sure that you now how your child absorbs insulin and patterns of BS.

Sometimes you have to make yourself not get overwhelmed with the disease and enjoy your child/family. :)