Tuesday, January 06, 2009

Help Me Please I'm at the End of My Rope

I cried about diabetes today for the first time in a long time. It came out of frustration with a disease that I just can’t figure out no matter how hard I try.

Riley’s sickness coupled with Prednisone over the Christmas holidays made it pretty much impossible to test basals like I wanted to. He’s run high, higher, and highest lately and I feel guilty that I’m not doing something right, that I’m not paying enough attention. His last A1C was 7.8, the highest it’s been in a long time. We have another appointment this month and I’m sure it’s still that high or higher.

You parents (and PWD) out there know where I’m coming from. It’s frustrating when your best just isn’t good enough. It makes you question if you’re doing the best at all.

I’m going to ask a few questions and I would love a response from you guys. I know that diabetes is very individualized and that what works for some may not work for others. I would still like to see your answers. They may point me in a direction I haven’t tried yet. I know that some of these questions will not pertain to people that are not on the pump. Just answer whatever questions you can. Please post any answers you have by comment or if you’d rather send them by email that would be fine too. (My email is in my profile.)

1) What do you/your child eat for a typical breakfast? (I’m looking something relatively low carb that would be of interest to a 6 year old and doesn’t require a lot of time to fix. I barely get to work on time as it is.)

2) How often do you typically change your basals? (I know this will vary greatly for everyone.)

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?

4) Do you or your child stick to a routine pretty much all of the time? (ex: breakfast , snack, lunch, etc at the same time every day.)

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?

6) Do you bolus before, during, or after meals?

7) Do you log sugars every day?

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again? ( I feel like maybe I’m not being aggressive enough with the changes?)

9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?


11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?

12) Do you think I’m completely insane for wanting you to answer all these questions?


Thank you in advance for any advice you can give.

14 comments:

Nikki said...

1) What do you/your child eat for a typical breakfast? (I’m looking something relatively low carb that would be of interest to a 6 year old and doesn’t require a lot of time to fix. I barely get to work on time as it is.)

- I usually eat Cheerios...I don't know if that will help you with a six year old :(

2) How often do you typically change your basals? (I know this will vary greatly for everyone.)

- Around every six months, or sooner if my bs's are crazy!

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?

I don't...unless it seems really far off.


4) Do you or your child stick to a routine pretty much all of the time? (ex: breakfast , snack, lunch, etc at the same time every day.)

No. Never.

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?

Count usually just by looking at it...hard things I measure.


6) Do you bolus before, during, or after meals?

Usually right after. So I don't over-do it!

7) Do you log sugars every day?

In my pump. (Medtronic)

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again? ( I feel like maybe I’m not being aggressive enough with the changes?)

I think what you are doing is perfect!


9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?

Don't usually have to do it :)

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?

I have different rates for different sections of every day.

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?

Give him the cake...just watch him!

12) Do you think I’m completely insane for wanting you to answer all these questions?

Not at all :)

Anonymous said...

Hi, I've been there! I would like to recommend the children with diabetes forums for many detailed posts on your questions. Parents come up with various solutions, not all the same. Here is what we do. First, let me mention my niece is 11, has been in puberty since 10, dx'd with Hashimotos at 9, so she is very changable. 1. Breakfasts. If running high, scrambled egg, Go-Gurt, one slice toast. If high and in a rush, substitute cheese for the egg. If in range low sugar oatmeal (instant) and a cup of milk. She is not hungry in the mornings. 2. Basals: We change basals every four days (this is a portion of the basals, tweaking). 3. If BS is 300 one and a half hours after eating, I would give enough insulin to bring her to 200 (if home) or 225 (if at school. She needs to be this high one and a half hours pprandial or she will drop low. 4. On school days, all meals are on schedule. Only dinner differs in time and/or content. She eats same break and lunch every day. Her choice. 5. We weigh all fruit. I weigh cold cereal (cereal only given after meal as a dessert). I weigh Quinoa Pasta dry, noodles and rice I use measuring cup. Weighing icecream now. 6. Extensive BS logs since diagnosis years ago. Circle all highs in red and lows in blue. All meals logged, site changes, etc. 7. Adjust for lows overnight immediately (change the basal when low occurs for rest of night). Adjust for daytime lows or highs after two days. 8. Increase basals by percentage if she is high over an extended period. Test them out, then implement them. If high over a four to six hour period. Add up all corrections given over time period and divide hourly. Increase basals by amount. If going very high, I do a double increase on the basals as .50 won't cut it. 10. Yes. 11. Yes, let him eat the cake. But make him run around after. Hope this helps.

katerina said...

hi and sorry to hear that you have so much trouble.for breakfast i give two slices of whole wheat bread (total carbs 16) either as a toasted sandwitch or with a bio kind of chocolate spread that has 50% hazelnuts and little sugar it has 35 gr of carb in 100 so i estimate another 6 carbs for the two slices.or eggs. cereals are always a dissaster so i stopped buying them!
2. sorrrry not on the pump however i change the amount of insulin if i see high morning readings for three days
3.i give more i have seen that for my son if 11/2 hour he is high no way the novorapid i have given him will help.
4.no we go with the flow
5. i weigh his food
6. depends on what he eats hi low gi
7.yes it does help me see patterns for foods eg if he eats spaghetti he is fine the first21/2 hours and at 3 hours he is usually high. another thing that counts for us is the amount of food if he eats alot i expect high numbers 3-4 hours later
11. if he is at a party and high i correct first then give him 1/2hour later bolus to cover the sweets or what ever
12.no. i wish i could be of more help. katerina

Lee Ann Thill said...

1) The last couple of years, cereal. Cold cereal – anything with flax – with sliced fruit and milk in the summer. In the winter, hot cereal with peanut butter and flax, a splash of milk and sliced bananas mixed in or some grapefruit on the side. Probably not what you’re looking for though. I used to do a more portable breakfast of cinnamon whole grain toast with peanut butter, or whole grain toast with melted cheese, with fruit and yogurt. I don’t know what your idea of low-carb is, but my breakfasts usually clock in at 45-60 carbs.

2) Just as needed which might be every few months or so. It varies too much to put a number on it.

3) Yes, I’ve found that whatever my BG is at an hour or so after I eat, that’s where it stays unless I bolus more. How much depends on multiple factors so I don’t really have a formula.

4) No, that’s one of the reasons I got a pump.

5) I swear by weighing. I find it easier than measuring cups, and based on the couple of comparisons I’ve done, it can be far more accurate. I blogged about it back in August maybe…

6) Depends on what my BG is to start, what I’m eating.

7) Not a chance.

8) I’ll usually wait at least a week, sometimes more because I don’t know if it’s just a hormonal thing or a stress thing or just diabetes being diabetes. Maybe I’m too conservative about it. If I do change it, and that doesn’t work, it might only be a few days before I adjust it again though.

9) I just do it for whatever part of the day I’m having out of range BG’s, and usually 5-10% change.

10) I used to have a different rate for when my cycle started, but since I upgraded my pump last spring, I’ve been too lazy to do that. If I would get off my butt and exercise, I know I'd need an adjusted rate.

11) Eat and bolus for the high. Diabetes already makes me feel different so I don’t want to do things to make myself feel any more different than I already feel, like excusing myself from a social tradition like that. By excusing myself, I also feel like people see me as more different than they might already see me. I’ve had “issues” with that though since I was a kid because of my experience.

12) Not at all. While I can only imagine what it’s like to parent a D kid, I feel like I have a relatively good sense of what it’s like. It’s so subjective though so maybe I don’t. I don’t really know.

Jill said...

Aww Penny...I wish I could reach out and hug you! I know how frustrating it is as a parent! You are entitled to have what I call "Mommy Meltdowns". When Kacey was sick with just a sinus infection, her blood sugars were so out of whack! The doctor told me that no matter how hard you try when they are sick you cant control what their body is doing. Just remember ...You're a GREAT Mommy and you are doing everything you can to stay on top of this D-monster. Don't beat yourself up! ***HUGS***

1) What do you/your child eat for a typical breakfast? This is something I havent shared much but Kacey and I (and my oldest daughter) are vegetarians. So for breakfast she has 2 Morning Star Farms veggie sausage patties (6 carbs) and usually 2 eggs scrambled. She also likes cheerios & waffles and both are only like 30 carbs.

2) How often do you typically change your basals? Since we're just coming out of the honeymoon and we are still on Lantus, it hasn't changed much lately. Shes on 13 units of Lantus a day.

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?
We arent on the pump but we've been dealing with correcting alot. A few weeks ago, I was having to give Kacey a shot for her meal and test 2 hours later and if she was high then I had to give a correction shot. This nearly broke me down because she was getting 6-8 shots a day!!! Plus we had to do the 2am middle of the night corrections :(

4) Do you or your child stick to a routine pretty much all of the time?
I try to and the reason for this is because I'm using a special chart that graphs the blood sugars for me. If she eats at the same time every day then it makes it easy to spot trends and for the last few weeks Ive been able to tell the CDE where I think adjustments need to be made and they've let me make them!

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?
We count by measuring cups and we also use premeasured snacks for school lunches.

6) Do you bolus before, during, or after meals?
Ahhh this was one that Ive struggled with recently! We bolus before but shes had the "eyes bigger than the stomach" lately and she ends up going low. The CDE just suggested that if she doesnt eat all her meal then offer her milk or juice to cover the carbs she didnt eat and she wont drop low :D

7) Do you log sugars every day?
Absolutely! Kacey tests 6-8 times a day (sometimes more depending on how shes feeling) We also log carbs, doses and corrections. I have to fax every week to the doctor so they have a log of how shes doing. If you want a good log I can honestly say Kevin's is amazing! http://parenthetic-diabetic.blogspot.com/2007/09/version-314.html He emailed it to me and it's been a God-send helping us find trends! It automatically puts sugars over 200 in red and anything under 70 in blue. It also totals your carbs, insulin and averages your blood sugars on a daily basis. It puts everything in a graph for you as well! Amazing chart!

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again?
We fax blood sugars to the Endo weekly and the CDE calls us with the changes the Endo wants to make. If I see a different change needs to be made then I discuss it with her and tell her my reasons. They usually give my dose a try because Im with her 24/7 and I see the changes. Plus we test her so often that we could see if something was too aggressive and we can always go back.

9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?
We arent pumping but her Lantus hasnt been increased in about 4 weeks now. Before that it was about 2 months. They worked on getting the insulin:carb ratio right first.

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?
Cant answer

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?
We let her eat it and bolus for the cake and the high. Reason for this is because I dont want her feeling left out and if shes already high then its not like the cake can make a difference. High is high...so we dose then she has the cake and the high is covered ;)

12) Do you think I’m completely insane for wanting you to answer all these questions?
Absolutely not! Im just as interested to see all the answers :) This is why I thought maybe a weekly chat would do us Moms some good!! We could bounce ideas off one another :)

Allison said...

First of all: Crazy ass diabetes is TOTALLY NORMAL. So actually that means you're doing a great job! :-) Hey, I tried...

Here are my answers. Combination of what I did as a kid and now as an adult (haha).

1) What do you/your child eat for a typical breakfast? (I’m looking something relatively low carb that would be of interest to a 6 year old and doesn’t require a lot of time to fix. I barely get to work on time as it is.)

I always ate cereal growing up. Usually one of the healthier kinds like Cheerios or Oat Squares or something. You could try Gogurts, I hear those are popular with the kiddies. I was also a fan of Eggos and peanut butter for awhile in high school, but I fixed that myself.

2) How often do you typically change your basals? (I know this will vary greatly for everyone.)

Not nearly often enough, but I probably make some kind of modification between 2 and 5 times a month. Not to all of the setting, but maybe to a specific couple of hours. I rarely do basal tests though. Usually they are "on the fly" and a guesstimate based on trial and error.

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?

Usually if I'm in the 300s it means that I underbolused and that the insulin would only bring me down if I didn't have food in my system. Usually if I have insulin on board but am pretty sure I won't come down, I give myself half the correction dose and just keep an eye on it.

4) Do you or your child stick to a routine pretty much all of the time? (ex: breakfast , snack, lunch, etc at the same time every day.)

When I was a kid, YES! I was on shots and a very strict school schedule. Pretty much nothing deviated. Nowadays, and on the pump, things are pretty set during the workweek, but I'm free as bird on the weekend.

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?

If I'm cooking at home, I use measuring cups (I'm old school). Otherwise, I guess.

6) Do you bolus before, during, or after meals?

::sheepishly:: After...

Sometimes I bolus a little before and a little after. But the CGM has told me repeatedly that I must bolus before, so I'm trying to be better.

7) Do you log sugars every day?

Log? What's that?

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again? ( I feel like maybe I’m not being aggressive enough with the changes?)

Depends. If I make a correction and the next day, still have the same problem, I usually make another little modification. But if it works, then doesn't work again, I'll wait it out. But it takes me forever to actually make the modifications, so once I decide to do it, I don't stop until it's fixed!

9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?

Usually .1 or .2 units, depending on how high or low I am going, and I usually start 2-3 hours before the time when the problem occurs. That's what I've been instructed to do, so I do my best to follow along.

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?

Nope. I should. But I don't.

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?

I test before I head out to anything so I have time to correct if I'm high. That way when I get there I'm either dropping significantly or back to normal.

12) Do you think I’m completely insane for wanting you to answer all these questions?

How on earth are you supposed to learn anything if you don't ask questions?

Jillian said...

1) What do you/your child eat for a typical breakfast? (I’m looking something relatively low carb that would be of interest to a 6 year old and doesn’t require a lot of time to fix. I barely get to work on time as it is.)

I don't always eat breakfast but a few things that have provided pretty stable numbers are oatmeal, light yogurts, and cereal but I don't eat mine with milk because I hate milk (I know alot of people have issues with the whole cereal and milk deal though).

2) How often do you typically change your basals? (I know this will vary greatly for everyone.)

Hmm. I definitely look at my numbers once a week and see if there are any patterns that I can't explain away with illness, stress, food etc. Then I wait a few more days to see if things keep repeating. If they do then I change things around. Usually once a month there is a tiny tweak but nothing significant.

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?

Doesn't happen too often but I usually think about what I've had...was it fried? Pizza? Something that always gives me trouble? If so how have I remedied this situation in the past? Depending on those factors I sometimes do override the pump with an estimate (different for everyone) and never anything too extreme. I will also do a temp basal rate to help ensure a quicker drop back into range.

4) Do you or your child stick to a routine pretty much all of the time? (ex: breakfast , snack, lunch, etc at the same time every day.)

No.

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?

Neither. I'm a total guesser based on what I know about food labels. It works for me, but I know it doesn't work for everyone.

6) Do you bolus before, during, or after meals?

Before unless I'm low before a meal.

7) Do you log sugars every day?

No.

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again? ( I feel like maybe I’m not being aggressive enough with the changes?)

I'm guessing your doing this with a logbook. I don't really have a formula for my changes. If there is a problem I try something new or I wait it out. I'm very laid back with the whole logging/averages thing.

9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?

Just the part of the day that needs to be adjusted, never by total percentage.

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?

No. I have one for the days I plan to exercise, but I'm really more of a manual temporary rate/play it by ear kind of girl for big changes like vacation days etc.

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?

For me eating super sugary foods over 250 is just a recipe for horrible headaches so I don't eat them because of that. But I if that weren't the case personally, I say eat the cake bolus for both things. Also cake with out the icing is a great way to shave off carbs, my mom and I always had that deal at parties. Save the goodie bag/extra candy for later, but the cake is a big part of feeling included in the party. Moderation works.


12) Do you think I’m completely insane for wanting you to answer all these questions?

No, I think you are a concerned mom trying to do the best for your son. I do however think that you should give yourself a bit of a break. This disease has a mind of it's own and sometimes it just isn't possible to beat it. It's really hard, but try to think of the bigger picture. One 7.8 A1c among many lower ones isn't that bad especially for a growing boy. Good luck and ehugs!

Jonah said...

1. I don't eat low carb, sorry. That really doesn't work for me. For breakfast I tend to have two bowls of cereal, some fruit, and sometimes some left overs from supper.

2. Every day. I take Lantus and I rarely keep the same dose two days in a row. I have finally got a system for calculating the dose that keeps me steady overnight- I do 9 units plus a tenth of that days' Novolog dose, and it works like a charm. I have kept this same prescription for myself for two weeks! I've never done that before.

3. This kind of thing is dependent on what kind of patterns I've been seeing in the previous two weeks or so (further back is useless). I would probably let it go the first time, check to see if it really did come down enough(which it probably wouldn't), and then treat, minus the amount it did come down, future highs at that time of day in the same way.
4. No way, jose. My endo thinks I should, but I'm a college student with a part time job and I want to be impromptu. The lantus shot is scheduled, and that's it.
5. I used to measure everything, but eventually I got good at guessing and I stopped. I still measure for large things ( if I think I might be more than 15 carbs off, I measure).
6. All three. For many meals, I inject both before and after the meal. Supper almost always takes at least two shots. If I start out hypo, then I inject a bit later, usually during the meal.
7. Not usually.
8. I don't, if they seem really off, but I keep in mind that the full effect may take two or three days to see.
9. It depends on what happened last time I adjusted them, and on how much my numbers are off by. I see some difference with a 5% change (I really wish I had syringes with half unit markings), but if my numbers are really off I adjust the dose by as much as a third.
10. I did when I took my Lantus in the morning (and it worked for me), but I havne't been doing that with the Lantus in the evenings.
11. Depends on how high, how badly I want to eat it, and whether there's an option of eating in thirty minutes instead of right now.
12. Nump. Hope you get some use from them.

type1mom said...

Oh Penny! PLEASE remember all the grief and heartache I went through with Maddison's back to school numbers....for 4 months!! For 4 months I tried this basal, that basal, sensitivity....you know I was at the end of my rope too! The Diabetes demon is making you second guess yourself....DONT!

I didn't seperate my answers but most important for Maddison is that we pre-bolus breakfast always! 15 min if 100-130 and 20 min if she is higher than that. I also do partial pre-boluses for every meal. Or, if I bolus 40 and she only eats 20 I will wait an hour and give the remaining carbs then.

I too typically watch for a 3 day pattern (unless obviously over 250) It is so hard to know otherwise. Different foods, activity.....you are right there Penny..dont doubt yourself. With sensitivity like Rileys and Maddison's 3 days is about right for patterns I think.

Maddison eats waffles or pancakes with sugar free syrup and peanut butter most days for breakfast. Add in milk with sugar free chocolate mix. Sometimes she will have wheat toast with cinnamon and splenda, then we add eggs with cheese as her protein/fat. We avoid cereal in the mornings because the spike is tremendous and no matter what she DROPS.

We only measure things like cereal, pasta and ice cream.

I only over ride the pump when fighting highs like yours for more than 3 days, I log school numbers every day because they have been whacked since school started in August! If things are in range for awhile I stop logging.

For awhile there Maddison's basals at night were changing about every week. By the time I got them right for two days in a row it would go wacko! So much for the 3 day pattern rule!

Daytime basal for Maddison is the LAST to change, if ever. I have only changed them once in 2 years.

We are pretty routine with meals, but not with living life in general. We have a very social cul-de-sac and the kids will play endless hours outside random days of the week. Those nights creep up on the overnight stability, thats for sure.

What I do for horrid times like what Dear Riley is going through is this....

I log every detail in a plain spiral notebook. Then I go back and highlight the problem numbers. I always try to fix the first high, which for us usually comes with breakfast. I change that basal 2 hours prior to the high .05at a time since that is the smallest increment Minimed can do. I insist Maddison eat the same meal each day to figure it out. It is easier that way. Mean mom, I know. If it is obviously no help at all I will adjust every two days.

I'm sure you have thought of EVERYTHING that is typical for Riley. This last crazy spell with Maddison was ME not changing something because it wasn't "typical" of Maddison's basal patter needs. She suddenly needed double the insulin starting at 3am, which was usually her lowest need......Once I realized that maybe "typical" wasn't anymore, I got more aggressive in that time frame, starting with the earliest high number to get the rest of the day in line....

YOU ARE DOING GREAT PENNY. I'm so sorry you are dealing with this and that Riley is too. (((HUGS))

Molly said...

1) What do you/your child eat for a typical breakfast?

When I was a kid, I always had hard boiled eggs that my mom cooked the night before, and 1 slice of wheat toast. (the grainy-er the better when I was a kid)
Now, I have coffee/1 cup milk and a cheese stick. I'm not a real breakfast fan.

2) How often do you typically change your basals? (I know this will vary greatly for everyone.)

I have two main basal patterns that I use depending on where my site is located. (abdomen or hip) I don't change my basals more than a couple times a year.

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?

I don't run much higher than 200 post meal. If I'm high 1 1/2 hours later, I would override and give more based on what I ate.

4) Do you or your child stick to a routine pretty much all of the time? (ex: breakfast , snack, lunch, etc at the same time every day.)

Weekdays/workdays : yes
Weekends/holidays/summer vacation: not as much, but still in the general ballpark.

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?

I weigh things like rice, etc. I rarely use measuring cups anymore. I do a lot of calculating based on food labels. I love my Salter scale.

6) Do you bolus before, during, or after meals?

If I'm high - before
average - during
low - after, sometimes a lot after

7) Do you log sugars every day?

No. I usually download my numbers from the various meters that I use about once a month. More if my numbers are crazy or if I'm going to see my endo.

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again? ( I feel like maybe I’m not being aggressive enough with the changes?)

I change if it happens more than twice- especially if it's at the exact same time. I'll move things around every two days until I feel like I'm back on track.


9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?

I do it by just a part of the day. I have different rates for overnight, day, after school, and evening up to bed. I try changing a "group" at one time, but then individualize it by hours if that doesn't work.

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?

Yep. I use a different rate for summer vacation and more than two day weekends.

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?

My mom would have let me just eat it. AND... I was diagnosed in 1975, WAY BEFORE blood testing. (and I've had diabetes for 33 years without complications) I say bolus for the high and encourage a lot of sugar free beverage.


12) Do you think I’m completely insane for wanting you to answer all these questions?

No way. I have learned tons from the Diabetes OC. You might pick up one helpful hint today that will change things for the better. :-)

I am allergic to insulin and take it mixed with dexamethasone, which is a steroid. I have been on prednisone several times. It was horrible. I was moody and hungry all the time. I had to increase my basals up to 200%. The more prednisone, the more insulin. The more insulin, the more allergic thus the increase in prednisone. It was a circular nightmare. I wouldn't do much with basals, etc while he's taking it. Remember it takes a while to get out of the system too.

Good luck.

Darling16 said...

Hello. My daughter will be four on Feb. 8th and she was dx on 6/12/07.
1. Breakfast! - Let's just say that all my frustrations with this disease is at breakfast. It is such a struggle to get her to eat. We usually go with cereal, oatmeal (only blueberry ofcourse!), toast, pancake, or waffle with 1 cup ultra skim milk. If we are having a bad morning - sugar free carnation instant breakfast here we come!

2. Currently she is on MDIs, but recently we went to insulin to carb ratios plus correction factor (along with her 1 and 1/2 units of levemir long acting insulin at breakfast and dinner) Our insulin to carb ratios are breakfast and dinner 1:25, lunch is 1:35, bedtime is 1:45. Our correction factor is Blood sugar minus 120 divided by 180.

3. Again, not on the pump, but hoping to have her on one before she starts Kindergarten.

4. Yes, we stick to a routine!

5. We just got a Salter dietary computer scale for Christmas and Love it! It displays the nutritional values for each food item including carbs. You can even program up to 100 foods (like baked cheetos - her favorite). We also use the calorie king book like the bible!

6. I usually give her insulin about 15 minutes before she eats (except if we are eating out).

7. Yes, we log her sugars everday and we are keeping track of the amount of carbs she eats at each meal too. We don't keep track of what she eats, but maybe we should start a diary!

8. We wait 3 days before we change anything, but we also keep in close contact with our endo team. Every two weeks we e-mail her blood sugars to Pittsburgh Children's Hospital just to make sure we are doing the right thing!

9-10. Again, we are on MDIs, but I will say that if we are changing her doses, we do one thing at a time and wait 3 days to see if it's working or not. If we do make changes it is usually an increase or decrease of 1/2 unit of insulin.

11. Let them eat cake! We would use our I:C ratio and correction factors. We also give smaller portions of cake - like a cupcake size.

12. No - I'm usually curious how other people (parents) handle this disease too. I too had an emotional breakdown this past holiday behind closed doors - it's good to get it all out.

Keep in touch

Rachel said...

1) What do you/your child eat for a typical breakfast? (I’m looking something relatively low carb that would be of interest to a 6 year old and doesn’t require a lot of time to fix. I barely get to work on time as it is.)

Tristan usually eats either cereal with milk or toast. On weekends, he may eat hash brown, sausage and eggs.

2) How often do you typically change your basals? (I know this will vary greatly for everyone.)

I'm in constant contact with his diabetes team. We very rarely play with the basal, we usually adjust the bolus

3) If you test 1- 1/2 hours after lunch and you’re in the 300s and your pump says you have enough insulin on board to cover the sugar do you override the pump and give insulin anyway? If so, how do you determine how much to give?

I do not override this. I would prefer to correct later if he's still high. I don't want to give him to much insulin

4) Do you or your child stick to a routine pretty much all of the time? (ex: breakfast , snack, lunch, etc at the same time every day.)

Some type of a routine but not very strict. At school, he has lunch and snacks that are routine. He also always gets a snack before gym class.

5) Do you count carbs by measuring with measuring cups or do you weigh your food to find out carbs?

We use to have a hard time getting the exact carbs out of a meal. We always felt like it was a guessing game. His dietitian recommended a salter scale and we love it. It makes carb counting so much easier!!

6) Do you bolus before, during, or after meals?

It depends. If before his meal he is high, we will correct the high right away and the correct his meal after he finishes eating. If his blood sugar is normal, we will correct everything after his meal. However, if he eats a lot, example, he has 2 serving of something, we will correct after each serving since we know exactly what he ate.

7) Do you log sugars every day?

No we don't but we do upload the pump probably every week to make adjustment with his diabetes team.

8) How long do you wait for a pattern before changing basals? (For example, I look for a three day pattern and make adjustments by that.) If you do this, do you wait 3 more days and if the numbers still aren’t responding adjust basals again? ( I feel like maybe I’m not being aggressive enough with the changes?)

I do wait for a pattern. Usually 3 days is what I look for. Don't forget that anything shorter maybe a fluke. Maybe he's covering an illness, maybe he's growing. But like I mentioned before, we rarely change the basal.

9) How much do you increase basals at one time? Do you do it by a certain percentage or just for one part of the day?

That depends on where the problem is. Usually his educator starts with 0.5 change

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?

No I don't. We have different basal rates for different times of the day.

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?

This one is hard.... party equals excitement for my son and it doesn't weird things to his blood sugar. From experience, we allow him the cake and correct the high. Usually during party, he tends to ride on the lower side.

12) Do you think I’m completely insane for wanting you to answer all these questions?

LOL no, I believe knowledge is power :)

Anonymous said...

Your questions were so pertinent, I came back to see what others would do, then realized I lost track of a few questions. So...

10) Do you have different basal rates for different days (for example a weekday basal rate and a weekend basal rate)? If so do you use the weekend rates for long weekends and holidays?
Yes, but since we change a portion of the basals frequently (usually the 7pm thru overnight), I just go into the pump Friday night and change the settings for the weekend. Sunday night I change back. We are always tweaking this portion of her basals because her TDD is not the same. Noticed if she eats a lot of carbs her basals this time period changes up; if she eats few carbs she will drop on basals. Yes, we basal test frequently.

11) If you /your child is at a birthday party and you/their sugar is high do you/they skip the cake and goodies or eat anyway and bolus for the high too?
Yes, she eats the cake, icecream etc. Pump will figure out correction plus bolus. I encourage her to run around afterwards if possible. At home, I don't feed when very high at home unless it is no carb.

12) Do you think I’m completely insane for wanting you to answer all these questions?
I think these questions very educational and helpful and should be posted on children with diabetes and Tudiabetes. We all need the answers to these questions. I see everyone handles things differently. But the more ideas the better

Angie said...

1) Sáin typically has waffles. If I go too low carb on her breakfast she tends to loose energy.

2) As needed – it seem to coincide with growth spurts

3) I tend to wait about 2 hours then do a manual bolus of 2 units. For some reason 2 units works for Sáin.

4) Sáin is on a pretty strict routine but I think that’s a result of being on NPH for quite a while.

5) I weigh when possible – it seems more accurate for us.

6) Before – generally 10 minutes before if possible.

7) On the pump

8) I try to give patterns a week or two to develop.

9) usually only .05 or .1 at a time.

10) We don’t

11) I would let Sáin have the cake and correct he high at the same time.

12) Not at all… it proves you are a loving mother who only wants the best for your son!