Wednesday, January 27, 2010

A Good Response

Here is the email (below) I received this afternoon from a CDE at Children's -
This is probably the best response I have ever received from them so I am actually feeling pretty good right now.   I have asked before to be 'assigned' one educator for Nate but was told that it was not possible.  I am going to ask again at our Pump class.  

My mom and I have also decided to print out the blog post and send it to our endo and anyone else we can find at Children's Hospital.  

Thank you all for your huge outpouring of support both on this post and on FB.  I would truly be lost without all of my D-mom support, family support, friend support and the Diabetes Online Community (DOC).  Being the parent of a child with diabetes (CWD) is hard but having great support makes it so much more bearable.

Thank you from the bottom of my heart -

Hi Laura,
I'm so sorry you are feeling like a barcode.  That is never a good feeling to have from your healthcare provider.  As far as insurance I feel the same way about mine.  As soon as we get the approval/non-approval we will definitely let you know.  I am curious to know which ketone strips are costing that much.  Are they the blood ketone test strips (Precision)?  In the meantime, we can always provide a prescription for urine ketone strips if you need them.
Thanks for sending Nathan's blood sugar log.  I wouldn't recommend any changes for his insulin right now.  I do notice the mid-morning high blood sugars, but unfortunately
with his type of insulin therapy there is one thing we can try.  When are you giving him his morning Humalog?  Are you giving it to him before he eats or after he eats?  If you are giving it to him before he eats, you can try giving it to him 15 minutes prior to him starting to eat and maybe the peak of the Humalog and food will match up closer and result in better mid-morning blood sugars.  If you are giving it to him after he eats, maybe working toward giving it to him prior to him eating.  On Lantus therapy or pump therapy we will be able to address them a bit better.  I feel on Lantus, kiddos don't have to wait for their background insulin to peak because its constant for 24 hours and therefore would be a better match in the mid-morning.  On pump therapy, we can program windows for different amounts of insulin at different times of the day to help match what his body needs. 
You are correct in thinking that Nathan does not need to attend the Pump it up class.  There is a part of the class he does need to participate in (the insertion site of the pump) but that does not have to be done on the same date.  There are a couple of options...
1.  you can have someone bring him either at 1230 or 430 on the day of the class and we can quickly do a site insertion before or after the class. 
2.  you can bring him in on another day or at your next appointment (which isn't until April) and an educator can do a quick site insertion. 
The purpose of the site insertion is to make sure he would tolerate something attached to him and get him used to what it would be like to be attached to a pump.  As long as we do that prior to you ordering your pump, it will be ok.  We just don't want parents to purchase an expensive gadget and then the child doesn't want to wear it. 
There is no book I would recommend for the pump it up class, but you can start looking at the 3 pump companies that we use and will have representatives there as well. 
Le me know if you have any other questions or concerns.  Thanks and have a great week!

Diabetes Educator


phonelady said...

Im so happy that you got this kind of response finally . I hope it all goes the way you need it to go . I was at the drs yesterday only to be told the dr left on an er emergency and so I have to go back in two wks to up my supply , so for now out of pocket again !!! Not a nice feeling at all yeah I feel like a bar code too . talk to you soon so happy for you and nate .

Amy said...

Well...she definitely took some time to respond to you...which is GOOD! Sometimes we just have to extremely direct and in their face before they do anything! Sad..but true.

Jada's high time of the day is usually midmorning. And her breakfast shot is what really seems to affect those numbers. Her insulin to carb ratio is 1:10 at breakfast as compared to 1:35 at other meal times. Her liver just seems to spill an extra amount of sugar in the mornings (its called the dawn effect). We also try to have her wait at least 10 minutes after her shot before she eats her breakfast...that helps a ton.

I know you use NPH and I never it does make things different. I've loved having Jada on doesn't peak....and we can pretty flexible with her eating.

Hang in are doing fabulous with Nate. I can't imagine how you are feeling after all you've been through in the last couple of weeks. Lots of hugs and prayers to you!

Lora said...

Maybe you can just try and email Beth when you need something. It can't hurt to try right?
Also, good for you for getting their attention. Sometimes you just need to remind them that they can't treat people like numbers.
Hang in there... today is a better day :)

Good for you, Laura! Glad you are feeling better about it. I have a few ideas on things you could try to help the situation. Nothing major- just ideas. It's too long for a post, though. If you're interested, let me know- email, text or call anytime!!

Meri said...

I like that she made an effort...even though she didn't have much help to suggest. It is no fun to yoyo up and down, J was a very grumpy baby when he was on NPH. ( could have been the fact that he was two at the time.:)

I'm glad you got a response. Keep pecking at them...hopefully they will wake up to the fact that Nate needs more care then their typical endo patient.

Thinking of you! I know it is so hard. I know.

Penny said...

So glad you got a response from them! They are beginning to hear you. I think that's progress and it must feel good to tell them how you feel.

The numbers game.. ahhhhh.... my gal is 7 and is on Novolog as her bolus and Lantus at night time. I do appreciate the Lantus in her life, I think it provides a steady stream for her as background 'music' so to speak.

I hope you get to have one CDE and care team and that they hear you. I think this is progress so far.

Hoping you get through this rough patch and have some smooth sailing soon,

Jill said...

What a great note from a CDE :) We have one CDE that we email back and forth with and when we go to the Endo, we always request to see her before we leave if she's not our CDE when we get there. Usually if she sees our name on the schedule, then she will wiggle her way in ;) I love having the contact with ONE person instead of 5 different people calling me with pump setting changes.

Also, a book you may want to consider buying - "Pumping Insulin". We got it from another D-friend when Kacey was in the pump process and it's a GREAT manual!

Nate looks like he did well with the pod :) Good luck as you journey forward. You're gonna LOVE the pump!!

Jessica said...

I know this is old but I just want to say that I love Beth! She has been so helpful, and believe me, some of them have not. I don't know why they don't assign the CDE's a caseload. It felt like for the first couple months I was calling every few days and having to re-explain everything that had happened over the last week. It makes no sense.

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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