Faxing numbers to the doctor vs. making the changes yourself

[BrendaK]

So, we are with a new endo since we've moved and they have encouraged us to fax our numbers in so they can help with changes. I am all for that! I agree that we need some help there.

We've had a lot of problems with Carson's numbers lately -- first severe and unexplained lows, then very inconsistant numbers, and now his numbers are creeping back up. Yesterday he was in the 200-300's all day.

I decided Thursday we needed to fax the numbers in, and of course they need "a few" days to look at for trends. So yesterday I faxed Thursday, Friday, Saturday, and Sunday's numbers. They did not call me yesterday (they did say that they needed a "day or two" to look at the number).

So what do you do in the meantime? I feel like I HAVE to make some changes to his numbers -- I don't have TIME to wait almost a week for them to call to make 1 or 2 changes!!

Carson was 179 at 2am then he was 273 at 7am. Okay, so I changed his basal. I also changed is I/C ratios because he was in the 200's all day yesterday. Oh, and I changed is ISF because a correction wasn't bringing hiim down nearly enough.

I'm cringing at the phone call I'm going to get because I've already changed these things -- because I don't have time to wait for them! I can't just let him run in the 300's all the time while I wait a week to track a few days of numbers then wait for a phone call!!

What do you all do?

Disclaimer: I don't normally change so many factors at once, but after we had severe lows a few weeks ago I had to change all those things. So now I'm just changing them to almost what they were originally.

Oh -- the one time I did talk to the nurse on the phone, I told her what our rates were and she said, oh, that's not what we have written down in his charts! I said, well, I've had to change things since then...she was nice about it, but I got the sense that she's not used to patients changing things around on their own??? She didn't tell me NOT to do that -- in fact she agreed I had to do that since he was going so low, but I just don't think she deals with that a lot...

[GaPeach]

Looks like you've been managing D-care for a long time with Carson.

I am fairly sure that you can recognize the need to adjust the I:C and basal rates. If I were in your shoes, I'd make the changes with confidence and then you will probably find that the new #'s (and the endo's office) will confirm your judgement.

Just make those changes a little at a time though - so you can see the results.

P.S. I'm a "tweaker". If you read my "Good / Bad endo visit" post, you'll see I "tweaked" us out of pump approval by having a great A1c (6.7).

[wendyc]

That's crazy that they can't look at the numbers and get back to you the same day! I mean really, you're giving them the info, they can look at it, it's not that hard.

Anyway, make the changes and see what they come back with. I would just say that you waited as long as you could for an answer, but it was neccessary to make the changes now.

When it comes to I:C or basal questions, I usually always have an answer by that evening if I email in the am, if I email later in the day, I have one by the next am.

[Abby-Dabby-Doo]

I would ask if you can contact them by email instead. I send Abby's log everyday by email, it's not to say they look at them everyday- but if I make a change or seeing a weird pattern or have a question- I'll hit on it in the email. I know our CDE mostly waits to look at our download.
I would think you'd get a quicker response for something in someones email box than a stack of logs faxed in. IF your wanting a quicker reply. I'm all for making your own changes if they're not getting back to you. I'd also fax in those changes, so when they call you can state you did so.
Just an idea.

[Abby-Dabby-Doo]

BTW...
What's the little white question mark cloud by your green box?

[momtojess]

We are encouraged to make changes ourself, but I do send an email to them if there is something I am having trouble getting right.

I dont blame you for going ahead and making the changes. When they call you back, you can always use their suggestions.. or if things are going well with your changes, simply tell them that since they waited a few days, you went ahead and made them yourself and all is working well.

[Bsbllmom]

Maybe since it is a new endo they want you to fax the #'s for a while. Also I would make the changes that you think and then wait and see what they say. I started calling our endo and saying this is what is happening and this is what I did. He finally said go ahead that he trusts me. :D

[wilf]

What one does depends on one's comfort level in making diabetes management decisions on one's own. This in turn is a function of one's education/training in diabetes management. There are lots of good resources out there to learn this stuff from, but there's some learning that needs to be done in order to take on making these decisions.

We have been making all D management decisions on our own since we got out initial training (which was very thorough, mind you) in the first 2 weeks after diagnosis. We use our endos to get A1Cs measured, to run blood tests for celiac and thyroid, to do meter calibration checks, to confirm growth and development are on track, and to give us their advice - but we make the decisions.

My sense from their response is also that this is not that common.

[twodoor2]

I don't know if this answer is much help to you, but I haven't asked for dosing instructions for Elizabeth since her second month after dx. We've managed to do pretty well on our own. I'm really really into pattern management - it really helps. I log a zillion different variables and use those variables to make adjustments to her numbers.

I think it is important to empower yourself to make adjustments on your own because sometimes endo's cannot be around 24/7 (ours got mad when we paged her). I understand however if some people want to get the doctor's recommendations. I guess it depends on your comfort level, and how safe you feel as far as making changes. Some endo's offices encourage self-management and some require that you send in the numbers. I prefer the former. But I know some prefer the latter, it all depends on your comfort level.

I know the endo you have. Our endo encourages self-management, but that's because I think she's overworked, the hospital employs her (not a private practice), she's understaffed, and has too many cases to handle on her own. I think she likes me because I give her less work, sounds weird, but that's what everyone tells me. I don't necessarily think that's right, but if I were in her shoes, I'd be really stressed handling hundreds of cases. I know your endo is heavily into analyzing numbers, so perhaps that's why he wants to have every little detail.

[BrendaK]

They said they highly prefer the fax method -- the CDE's are used to looking at the numbers on their "special" logging forms. That's fine, I understand that.

I asked if they used the Copilot, because I could just upload all of our numbers there all the time. They don't know how to use it but said they are willing to if I figure it out for them.

I know that I am "compotent" to make changes, we've been doing it for over 7 years by ourselves. I guess I am just not happy with how long it's taking for them to get back to me. This is a nationally, if not internationally recognized pedi endo's office.... They really are a great endo, it's just the communication thing that's getting to me...

BTW...
What's the little white question mark cloud by your green box?
Today 08:52 AM


That's for Skype -- I have a skype account -- it's a computer phone download -- I can talk to anyone in the world who has skype for free. We use it to talk to my SIL who lives out of the country.

[BrendaK]

I don't know if this answer is much help to you, but I haven't asked for dosing instructions for Elizabeth since her second month after dx. We've managed to do pretty well on our own. I'm really really into pattern management - it really helps. I log a zillion different variables and use those variables to make adjustments to her numbers.

I think it is important to empower yourself to make adjustments on your own because sometimes endo's cannot be around 24/7 (ours got mad when we paged her). I understand however if some people want to get the doctor's recommendations. I guess it depends on your comfort level, and how safe you feel as far as making changes. Some endo's offices encourage self-management and some require that you send in the numbers. I prefer the former. But I know some prefer the latter, it all depends on your comfort level.

I know the endo you have. Our endo encourages self-management, but that's because I think she's overworked, the hospital employs her (not a private practice), she's understaffed, and has too many cases to handle on her own. I think she likes me because I give her less work, sounds weird, but that's what everyone tells me. I don't necessarily think that's right, but if I were in her shoes, I'd be really stressed handling hundreds of cases. I know your endo is heavily into analyzing numbers, so perhaps that's why he wants to have every little detail.


Carson's A1C really went up in the last 6 months. And honestly after 7 years of self management, I'm TIRED. I just need a break and want some help. I'm tired of figuring it out on my own all the time. This is my first time EVER in 7 years of faxing numbers to an endo...a new experience. I hope they can help with the changes. I was just hoping for a break, that I could just send someone the numbers and they could tell me what to do. But it's just taking them so long and it's not safe for Carson to wait that long...

[twodoor2]

I know our endo doesn't always make the best dosing advice, but for what it's worth, when I did fax the numbers in, they always got back to me the same day. It may have been 8 hours later, but it was always the same day.

[twodoor2]

Carson's A1C really went up in the last 6 months. And honestly after 7 years of self management, I'm TIRED. I just need a break and want some help. I'm tired of figuring it out on my own all the time. This is my first time EVER in 7 years of faxing numbers to an endo...a new experience. I hope they can help with the changes. I was just hoping for a break, that I could just send someone the numbers and they could tell me what to do. But it's just taking them so long and it's not safe for Carson to wait that long...

I'm so sorry to hear that. I can't even imagine, but it must be so tiring doing this for so long.

[WestinsMom]

I see your delema. We both know you are use to doing it yourself. I can't imagine waiting for someone to tell me what to change. That would drive me nuts! I also know that you value their suggestions, as they have been suggestions you would have not thought of.

I guess I would make the changes to get by until they call, then you could set it back and try it their way?

[valerie k]

we call in and talk to a diabetes educator in the office, give them the numbers, they crunch them, and call us back, after reviewing them, or having the dr review them. same day results. I have learned alot in pattern management class... I always look for the three day trend,. and on days of wacky numbers, try and figure out why, over active, to many carbs, not enough insulin, to much insulin, sick, moods, growth.

Im only in it a year so far, but I find myself going back over the books, pink panther and such, and it sparks my brain into remembering....

[Lee]

Wow- a couple of days to get back to you, along with needing to see 3 days of a pattern, that makes it 5 days in total-5 days is to long! Can you talk to them and mention that they never recommend letting a kid sit high for 5 days!

I have been waiting to reply because my mind just couldn't wrap around it - 5 days!

[BrendaK]

Yep, I'm planning on having a chat with the CDE if/when they ever call back. I understand the need to see a few days in a row to spot trends. The day I decided to start was Thursday, so the weekend was automatically thrown in there.

But when we had these crazy lows a couple of weeks ago, the CDE NEVER called back. I called Tuesday morning and never heard back. Then I called again Friday and she did call back within an hour. I was trying to give the benefit of the doubt. That's over now.... :mad:

And to top it off this has been a HORRIBLE day!! They did the 9:30am check at school and Carson was over 500!!!! They even double checked it. So I'm trying to race out the door to get Henry to gymnastics and I had to run to the school and the stupid site came out!!! I gave a shot by syringe and changed the site and did a temp basal of 125% for 3 hours. They checked an hour later and he did come down to 403. I'm waiting for a call any minute to see where he is before lunch. I asked Carson to skip his morning snack and he willingly agreed. What a great kid. I've never asked him to skip food at school before. I'm so proud of him! Thanks Michelle (Westinsmom) for letting me calm down over the phone :)
UUUGGHHHHH....

[Lee]

Yep, I'm planning on having a chat with the CDE if/when they ever call back. I understand the need to see a few days in a row to spot trends. The day I decided to start was Thursday, so the weekend was automatically thrown in there.

But when we had these crazy lows a couple of weeks ago, the CDE NEVER called back. I called Tuesday morning and never heard back. Then I called again Friday and she did call back within an hour. I was trying to give the benefit of the doubt. That's over now.... :mad:


Ok - I am so glad you said that - I was worried that this was a NEW ENDO!!!! That is why I was worried to say anything - I didn't want to freak you out about a new endo! They should be getting back to you alot sooner!

[twodoor2]

Brenda,
Can you page the endo? A BG 500:eek: would be a very valid and good reason to do so. It seems that there may be a breakdown of communication with the CDE, nurse, whomever, with the endo. My pediatrician says such wonderful things about your endo, so perhaps it's not entirely his fault, but a lack of unresponsiveness of his staff. If that is the case, he should know about it.

[BrendaK]

I could have called the hospital and paged the ped endo on call. And I would have if his numbers didn't come down. The 500 bs was due to a complete site failure. Since I gave a HUGE correction by syringe and replaced the site, I didn't feel the need to call. He is coming down nicely by the way. 1 hour later he was 403 and 2 hours later he was 280. Today's 500 bs was a completely different mess....

But they STILL haven't called back about the 4 days I faxed in.

Sorry if I didn't make it clear -- we're suppossed to deal with the CDE's for all blood sugar faxes and stuff. I can page the endo if it's truly a diabetic emergency.

[momtojess]

But they STILL haven't called back about the 4 days I faxed in.

.

I would be calling them and asking how much longer you need to wait to hear from them, because by the time the get back to you, you will have a whole new 4 day period for them to look at!

[WestinsMom]

Thanks Michelle (Westinsmom) for letting me calm down over the phone :)
UUUGGHHHHH....

You know I am always a phone call away! I am glad he is coming back down. It was just really bad luck!

[Mom2rh]

First, our school sends kids home if their BG is over 400 (or 450?) That happened to us once...and Ryan felt like crud when he was home so I can totally see the benefit of that.

Second, what formulas do you use to make your changes? When we had our pump training we had to read Pumping Insulin...and in there they have the formulas the doctors use and the CDE. I was emailing for input initially but the CDE reminde me of the formulas and I have been doing it myself. We download the numbers regularly and when the patterns show higher over a period of time we look at his averages, TDD, etc., and reset everything.

[twodoor2]

But when we had these crazy lows a couple of weeks ago, the CDE NEVER called back. I called Tuesday morning and never heard back. Then I called again Friday and she did call back within an hour. I was trying to give the benefit of the doubt. That's over now.... :mad:


Next time you talk to the endo, make sure you note that to him, and write down specific dates and times. Maybe the CDE was out of the office, but they should have a backup checking the voice mails. Our endo doesn't even have a CDE, she only has one full-time nurse, and part-time nurse (two days a week). If for any reason, someone is on vacation, or just out of the office, there is always some human being that calls me back the same day. I appreciate that very much. We also get a message from their voice mail indicating they're on vacation, out of the office, etc. . . The workload for these two nurses at my endo's office must be huge, but I really admire how they always got back to me.

[BrendaK]

First, our school sends kids home if their BG is over 400 (or 450?) That happened to us once...and Ryan felt like crud when he was home so I can totally see the benefit of that.

Second, what formulas do you use to make your changes? When we had our pump training we had to read Pumping Insulin...and in there they have the formulas the doctors use and the CDE. I was emailing for input initially but the CDE reminde me of the formulas and I have been doing it myself. We download the numbers regularly and when the patterns show higher over a period of time we look at his averages, TDD, etc., and reset everything.

I live 3 blocks from school, so I was able to be there within about 2 minutes. Our school is very small (under 400 kids) and only has 2 kids with diabetes, so they don't have a set policy of when to send kids home. Carson didn't want to go home and since we found the problem right away (the failed site), I left him at school. And I have talked to the nurse several times since I left.

And I have read pumping insulin front to back many many times. It's very helpful. However, we've been struggling with very inconsistant numbers, severe lows, and now numbers on the higher side. I'm at a loss and very very tired of trying to figure things out on my own. Like I said, this is the first time I've ever asked the endo/CDE for help, I've been making changes on my own for 7 years. This new endos office has offered some very very valuable advice in the last few months -- stuff I would have never thought of on my own. That's why I'm really wanting their opinion on what to change.

I know a lot of people don't make ANY changes without their endo's/CDE's knowledge or "permission." One poster, can't remember who right off the top, said they email the numbers in every single day. I'm trying to figure out how people do it if they fax their numbers into the endo. But now I'm seeing that my CDE is just REALLY slow on getting back to me, unacceptabally slow, and I will make changes on my own until I hear from them.

I really don't want to call them back to nag them. I'm feeling kind of fiesty and want to see how long it REALLY takes for them to call back without me nagging them.

[Mom2rh]

I don't think it's nagging...if you need help, that is what they are there for. If we had wonky numbers like you are experiencing, you bet I'd be on the phone looking for fast answers...not get back to me when you feel like it answers. It is NOT nagging.

I hope you get those answers today.

[Sallysweets]

I use to be one of those parents that didn't make any changes until the CDE told me too. I would e-mail Andriella's numbers in twice a week and then do what ever they told me. She stayed in the high 200 to high 300's for two and half months they barley changed anything they just gave me excuses. Finally I got fed up enough that I got on here for help and have seen better numbers since. Went to the endo last week and her A1C was 9.3 and was told Andi had poor control so I told her I have been doing everything you guys told me until now and then she said just keep doing what your doing. So I might e-mail them the numbers but I will be doing my own changes from now on.

[BrendaK]

Well, I just called and left a message on the CDE's voicemail to see if they even GOT the fax. The timer is ticking.....we'll see how long before I get a call back.

[twodoor2]

You poor thing, I feel so bad for you. Please keep us posted. I'm really concerned about it too since I was considering using your endo at one point.

[WestinsMom]

I am one that would sit and wait, testing them to see how long it would take! :)

If they can't be of help, I guess you will have to go back to the "brain trust" (aka me and you sit on the phone and talk it over and make some decisions together)

I understand being tired and frustrated. I just don't know what it is like to have an endo office that gives advice like that :) Oh, wait, I am not sure that I want the advice...that's it! :)

Keep us posted on the timer.

[BrendaK]

UPDATE: Well, it seems they never got the original fax yesterday morning. DH faxed it from work and says he got the transmission statement saying it was successfully sent. I'm trying to give the endo's office the benefit of the doubt. Maybe it just didn't go through. But they did call me back within just a few hours of me leaving them a phone message. That's good!!

BUT, I'm making all these changes myself now (like I have already been doing for 7 years!) I think I'll just start over tomorrow and fax another few days in either Friday or Monday...I was just so impressed with the previous help and advice the CDE's have given me in the last few months, I really want them to help with some fine tuning.

By the way, Carson came home from school at 180, so that's was very nice after a horrible morning with the failed site and stuff.

[sugarmonkey]

I usually make changes on my own now, but when we first started pumping I would ring or email numbers every couple of days. I'd always get a call back the same day. Maybe they didn't get the fax, at least they got back to you fairly quickly after the phone call.
Good to see Carson came back down from that 500.

[Madisonsmom]

I fax Madisons numbers every two weeks. I always get a call back that same day most often withina few hours. They will call and I ask them about what I need to do. Right now she is getting crazy mumbers some in the 300 and she is not sick. So they just changed again.

We are going to what they call Advanced diabetes class in a few weeks the next step before pump class. I am hoping to learn more then to be more comfortable changing things myself.

We are really lucky because we can call the Endo on call at anytime and ask about any changes and when we call we have a call back within 10 minutes.