Wednesday, February 9, 2011

Who's in charge...

...of decision making regarding your child's (or your own) Diabetes?

When The Superhero was diagnosed with Diabetes in July 2008 I seemed to understand the "science/math" part of it rather quickly. I was supposed to fax/email in BG logs every couple of days or once a week or whenever we thought a change was needed. This got old. Really fast.

I started using my knowledge and making small adjustments on my own. I would then call the doctor's office and let them know what I changed and why I made that adjustment. They always seemed to agree with what I was thinking. After a short time of this, I quit calling in numbers. I quit asking for their advice.

Since that time 2 1/2 years ago, I very rarely have to call and ask for any advice. In fact, I don't even remember the last time I asked the endo for help figuring out The Superhero's numbers. We do it on our own.

*I* am the one making all the adjustments and seeing how they go and making more changes as needed.

To me, this is now the "norm".

I figure we are the ones managing this disease 24/7 and someday The Superhero will have to manage it himself. We need to raise him to be able to make adjustments on his own.

But, I started thinking that maybe this is not the norm for everyone else with T1 out there.

I have a few other T1 Mamas who I know are NOT allowed to make ANY changes on their own. Seriously. One of them was told that if she made any changes on her own or put her son back on his pump, they would call CPS. So, her son ran HIGH for days before they would call her back. The endo made her take him off the pump while he was in the hospital for ketones. He is still back on shots now, and this was a while ago.

This is not the only one I have heard of. I have read lots of FB posts where people are waiting to hear from endo's offices to make changes. And they are dealing with highs or lows in the meantime.

So, what is YOUR take on this? Do you adjust on your own or wait for the endo?

*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*


Amy said...

We have made ALL adjustments since the end of the first week after dx's. Our endos at the time had never managed a baby before, and I knew more than they did about it very quickly. We were already "D savvy" since my husband was already pumping, but still... no one knows your child's needs better than you.
I'm sure that there are parents who are not capable or willing, but any parent who is actively involved and willing to read and log and learn should be allowed to make adjustments!!

My 2 cents. ;)

Wendy said...


Call CPS?????????


I've been doing it for YEARS. I, seriously, can't even remember the last time we consulted for setting changes.

I have called to confirm a Lantus dose once, when I wanted to have the pump disconnected for a day a the waterpark.

I think each family moves along at their own pace...but threatening CPS???? That just seems outrageous to me.

Kelly said...

Wwwhhhaaattttt? I can see the Endo being responsible for insulin changes in the beginning (like the first year) but after that....????? I was given a Lantus pen when dx'd and told to start on 5u. That was it.

By the time Maddison was dx'd I had been managing myself for 9 months so I just took her numbers as my numbers. The only advice I had for numbers was the week we started on the pump. Never needed help since then. Luckily.

Joanne said...

Wow. Just... wow. I think that endo has some control issues.

We do all Elise's changes. Have since pretty much right after dx. We haven't called for help in almost two years. They never seemed to know what to do with a baby diabetic.

Denise said...

Just like you, we make all the adjustments as we see fit. We can call in if we need to but I haven't in years. At our endo appnts, he looks over all our settings and numbers and he hasn't suggested any changes (we have made many changes on our own of course). We did call in numbers right after diagnosis...what a pain! Didn't know that some people had to get approval for changes if they've been doing this a while.

Penny said...

I make all the changes when I see patterns, with my endo and CDEs complete support. I ask them to teach me how to do it and they do. I heart my endo and CDE who totally rock.
The thought of an endo controlling it so tightly astounds me and don't get me started how I feel about the CPS comment - what a bunch of BS! Ask the endo to teach you how to notice patterns and make changes. We are the ones living with these kids. After I learn something, then I teach Grace, who really is the one who needs to know. Good post and good question!

Haley said...

heck- I barely tell my parents if I change anything. Seriously, this might sound crazy but if my dad or mom asks to see my pump I'll tell them not to push my buttons. I ask them how they would feel if I cut open their bodies and poked at their pancreas!

Reyna said...

We do all of Joe's adjusting as well. I am not sure about Endo's having "control issues"...some may. I also think they are trying to evaluate the family's capability to make these adjustments. I hope that makes sense and doesn't offend anyone.

Laura @ Houston We Have A Problem! said...

Ummm - We haven't seen or spoken to an endo since September of 2010. I would have told that emdo to shove it up his ass and reported him to the medical board for threatening to call CPS.

OMG - I am so appalled at this!!

I think everyone should be able to do it on their own!!!!!

Give me the # of that endo!!


Beth said...

I'd be finding a new endo if he/she thought they could threaten me like that....of course, living in a large city I actually have some choices. I suppose if you don't have other options, you're stuck with the control freak. (EEEK)

Until a doctor or nurse/CDE is living in my house doing all the work of taking care of my kid, he or she can stuff the idea that he or she is "in charge", though. ;) One more reason I <3 our beloved Dr. D. :)

Diane D said...

I still call the doctor when we notice our girl needs something changed. But we are still VERY new at this. 3 months yesterday...

Alexis of Justices Misbehaving Pancreas said...

The first few months we called numbers in every week and was given feedback or changes. I think after 8 months or so we felt ok with doing it on our own which they said was what they wanted eventually. But we could always call when we needed help.

Now with pump I does it all! If I am just not getting anywhere then Ill call. We have been pumping 7 months and we have only called 2x. Our endo is awesome and honestly is shocked with all we know ( We got the DOC baby).

The CPS thing shocked me!! Unreal.

I agree with Reyna maybe endo sees things we dont making them feel the parents arent ready to make the changes?

Michelle said...

I do most of the tweaking myself for C and consult with the endo if I'm just not certain about something. And he sometimes makes recommendations at our quarterly follow-ups.

Meri said...

First of all, I don't know who your friend is, but YIKES!!!! This person needs a new endo...and they need one NOW!!

I make all the changes, but when we do our 3 month endo thing, she'll smooth things out for me...or let me know if something needs to be tweaked. Most of the time I agree, sometimes I don't and she is ok with it. I'm lucky to have a good endo. EVERYONE deserves a good endo. If they don't have is their right...HELLO! It is a free country! find a new one!

Amy said...

Quiet the hot topic! I think it is a liability issue for most endo's to just say 'call me if you need me' and instead control dosing changes and adjustments in the first year or so. Personally, I needed to start making decisions on my own after the 3 month mark because if I didn't, I was left feeling helpless to T1D. Decising when and how to make adjustments gave me the confidence to do this thing 24/7.

Some people in my local D community still call our office for e-v-e-r-y-t-h-i-n-g and that is what THEY need to do to get by. Just not for me ;)

Haley's comment sooooooooo makes me think that is how my Ellie is going to be at Haley's age!

And Laura's comment about had me spittin' out my coffee!!!!

Tracy (The Crazy Pancreas) said...

This friend of mine has been at this T1 game for about 2 1/2 years. She is a foster mom to other kids and is worried about losing them if the Endo calls CPS.

I do know that she IS switching her son to another Endo, about 2-3 hours away from where they live. He is on a waiting list or something.

And I am glad to know that the norm seems to be everyone doing this on their own, mostly, with some support from the Endo office if needed.

Shannon@ The New Normal Life said...

WOW!! I didnt relize we are in the minority here. I chart our BGs, carbs and insulin and fax it in every monday. Dr. SS calls me on Tuesday and we discuss together what to do. She by no means is controlling it but I do take her recomendations. With Joshua being so young and we have been fighting so hard to lower his numbers I need all the help I can get. She even gave me her cell this weekend if I need it since he is sick AGIAn and she is out of town. I really like the way she manages us but I know she doesnt do it for all.. I think it is for those who need it. Also i dont work with the CDE, which some do.
She has asked me several times what I would like to change and we discuss it but with him being so young I just go with her recomendation

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