Deflated by Endo Visit

I felt so bad for DD yesterday at our endo visit.

Feb 27 2010 - A1C 10.7 or 260 - Horrible!
March 25 2010 - 2 Week Avg 187 - Not great, but progress. Note part of this time we were on a vacation with pretty much no food labels (cruise).

She has been working so hard this month to achieve better numbers. She's put up with me coming in during the night, having her check 12 times a day, calling me from school 3x day, wearing sensor 24/7 and more. I am finally getting the message through that we have to keep her healthy...not easy to an invincible 12 year old.

And Then Mr Bedside Manner Arrives...
Endo comes in, looks over Carelink reports and says he sees way too much variability (63-290 I think). Yeah, me too..Got solutions? He then tells us the variability could be more dangerous than last month when she was 260 consistently.

I saw DD shrink in her chair and start checking out. Way to undermine our efforts. I had to resist a sudden urge to slap him upside his head (sorta kidding - I really don't condone violence).

P.S. Let me just add that the improvements had nothing to do with him or his staff and everything to do with CWD, which makes me even more irritated with him.

 

I'm sorry
How old is your daughter?

 

Oh that is brutal. People like him need to think about the effect of their words on the kids they are trying to care for.

BTW, Aaron has that much variability and more. I kinda thought that was part of teenage diabetes. Or maybe just Type 1 diabetes, period.

 

I would not believe it if there was even 1 child with Type 1 whose numbers do not vary like that over a month's time.

Was there anything positive? Helpful?

 

She is 12, will be 13 in May.

 

Hey Patricia, if it makes you feel better we have a swing of 411 to 48 (in 2 hours). Bad site and overcorrection with new site (our personal best, or is that worst?)

She is making progress. Focus on that and disregard the less than constructive comments of the endo.

 

Ok, that's what I'm thinking too. He kept talking about her being uncontrolled. So I asked him if he really had T1 teenagers who were "controlled" which I assume would mean a much tighter range than DD and he said yes. ???

Positives:
1) Got Apidra script to try out (my request)
2) Don't have to see him for 3 months which could really be 4 or 5 because I can't actually make appt at clinic yet per receptionist scheduling is not available for that period (what the hell?) but they will take my name and number and call me when the scheduling book for July is "open" which should have actually been on March 1 but is running late again this month. Great system! Love it.

 

Sorry you both had to deal with that. Maybe the next time that happens you can say something to the endo like, "We understand the need for more consistently in range numbers, but my daughter has been working VERY hard this past month to improve her numbers/A1C and I think it is important for you to know that and to acknowledge it".

I know it is hard to "think on your feet" during an appointment. I find myself sometimes driving home afterwards thinking "shoot, why didn't I ask her that/say something". Did you talk to your daughter after the appointment and let her know how proud you are of her hard work and to discuss her feelings about the appointment?

Hang in there...:cwds:

 

NOT MY TEENAGER!!!!! As another mom of a 13-yr old, it is VERY hard to "control" numbers in these years, I hate that term! Our last AIC was 8.8, despite all our efforts, and it has been in the 10's when her hormones first kicked in. Your endo should be supporting you and helping figure out ways to improve, not discourging you and undermining your efforts!!!

 

I would fire that endo I guess we've been lucky because our endo would NEVER make us feel bad about Ryan's #s...and believe me they've been crazy at times. He is very supportive and just tries to help us figure out what's going on and what changes need to be made.

 

Good post Sharon. It's exactly right.
Patricia,
I'm sorry the endo wasn't supportive. It has to start somewhere and your daughter is going in the right direction. Certainly the endo doesn't want her tightening the range in mid to upper 200's. So she has to start with getting the numbers down and then tightening the range. And the teen years from what I've read are really working against her to do this and yet she is. That's great progress, shame on that endo for not being more supportive of her and you.
I hope your daughter knows that she is doing the right thing and will continue to keep up the good work.
Any chance you can find another endo that would support her and you? It's supposed to be a team effort.

 

We have good A1cs, usually do, but have the same variability. Usually lower than 290, but in mid 200s. We do our best but I cannot bring the high number down. It was usually postprandial so we switched to Apidra recently and the postprandials are better. But with Apidra she goes high real quick on the glucose spikes from hormones at night or if without insulin for any other reason. So still have the variability. Will still try to improve it. Our endo is happy with our numbers overall. Re variability, she did say "no one knows for sure. But they believe variability is dangerous." Re cgms, she will wear it, but only when we are having problems. And she refuses to micromanage. Only by micromanaging can we have a hope of getting on top of these spikes. They are quick, as in one hour to one hour and a half. Regarding firing of the endo, your daughter will soon be seeing the endo alone without you and will need to work with an endo she is happy with. Does not sound like this guy is going to be it.

 

I'm sorry you had a horrible endo appointment.. I think your endo is wrong reguarding his statement on highs staying at 260, rather than going up and coming down.. Its complete opposite of what our endo says.. its much better to spike and come down (and every single person with t1 is going to spike when they eat.) than to spike and stay there..

did her A1c improve?

Its really hard to go to an endo you have no respect for.. is there any other endo's, in the office, in the next town, two towns over, someone you can switch to?

We had one appointment where Kaylee was horrible, just misbehaving, wouldn't do anything the endo asked.. The endo said we could switch to someone else if we wanted to.. I had reassure her that it wasn't HER but the simple fact that Kaylee was at the dr's.. thats all.. If the match doesn't fit, it does need to be changed though.

 

Patricia,

Don't let her be discouraged by a grumpy endo.

We've just begun the puberty phase (DD is 11). Her insulin needs doubled suddenly at the end of November. We were chasing highs like crazy during Dec and Jan. Then endo appt. was on Feb 4th. Her A1C was not as bad as I had anticipated. In reviewing her BG Logs, they saw and acknowledged that we were making numerous changes to her regimine in an attempt to regain "control".

Most importantly for us, I always go through the BG logs with DD and we talk about all the factors that might be effecting the #'s (Puberty, change in daily routine, missed or late bolus, illness, etc.) Then, she is an active participant in suggestions (I:C changes, basal) and helps analyze what time of day the area of concerns occur. I believe in using all teachable moments possible.

This strategy has been awesome. Even better, she reviews the meter averages and smiles as the average comes now.

BOO-HISS on a negative endo. She needed him to point out the "rights" instead of focusing on the wrongs.

 

I am sorry. Very unprofessional!

 

Is this a large group? Are their other endos you could try? Would she relate more to a female endo? Could you use that as an excuse to try someone else in the group?

 

I agree with the other posters, you need an endo who will support and encourage you not one who makes your daughter feel bad. They are supposed to help you!
Hang in there.:cwds:

 

I really like the way you worded that. I did say something similar, but I needed to add the "I think it is important for you to know that and to acknowledge it" That is so powerful. Thanks.

 

I agree with this Endos have to remember that these are children. I mean even if they were adults they dont want to hear that they are a screw up (not that your daughter is of course) It sounds like you guys have been working hard on things. Did he really have a problem with that kind of range of numbers? We have that quite often actually. Some days are like a roller coaster here. And your daughter is at an age where shes starting puberty so that makes for some struggles thats for sure. If this endo cant be a team member with you guys Id find one that can. You absolutely deserve that

 

What an awful way to interact with a patient who is a really at a point where building trust and confidence is one of the most critical elements of her disease management...he completely blew it. I'm very sorry for both of you.

In my experiences in every single facet of my life I find that the more time a person spends in education and training the less time they spend developing other life skills---and maybe this isn't true until beyond college since the early education years are so social BUT---in general, most physicians with two subspecialities? They've not had enough time in the outside world to build any other grace or skills they weren't born with. Its just a general note: in a pediatric endo practice, the staff who are going to interact best with patients are the CDEs, the RNs, dieticians.

I would (will) definitely avoid any endo practices without a staff of CDEs and RNs. Our first pediatric endo is a walking nightmare. She accused my SIX year old daughter of "stealing" treats outside of our usual routine -- at our first post-diagnosis visit. Way to go, Endo...

I think, if I may say so, your daughter may need you to show her that you do not accept his scare tactics and intolerance. If you are able to find another endo who you know has better interpersonal skills, a switch that way would show her that you believe her disease management is proceeding as best it can and that you believe in her ability to care for herself (with your support).