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Entries in CHOP (6)


I want a better A1C

In two months Arden will have diabetes for five years. Today, for the first time I’m finding myself very vested in seeing an A1C decrease at our visit. I think that I may take it very personally if we don’t. Ninety minutes from now we’ll enter the exam room for the (I’m guessing) twentieth time and I don’t think (with the exception of one time) I’ve ever felt this anxious before an appointment. I don’t like feeling like this.


I just really want this to go well...




We’re back from the endo and since I don’t want to bury the lead... A1C was terrific!


Here’s a little background. For the past two years Arden’s A1C is always in range and it fluctuates only a tiny bit. At her last appointment it jumped almost a full point but three months later it was back to the lowest that it’s ever been!!!


I think I know why too but you’ll have to wait until I get a chance to write about it to find out. Thank you so much for all the well wishes here, on Twitter and FaceBook, you guys rock!



The following are archived comments from this post. You can post new comments below.

Good luck!
Monday, June 27, 2011 - 11:54 AM
Good luck and I totally understand the taking it personally comment.  When you feel like you  have worked so hard to get a better A1c you want your hard work to show through!  Keep us posted on how it went.
Monday, June 27, 2011 - 12:52 PM
Yay!  Isn't it such a sense of accomplishment to see a good number?  I'm glad it went well.  And I hope that you continue to see such good results :)
Monday, June 27, 2011 - 05:39 PM
Fabulous!  Kudos to you & Arden!
Monday, June 27, 2011 - 09:42 PM



Back Cover


A few months back Arden’s aunt was given a magazine to read. When she finished reading it she laid it face down on the counter - this is what she saw...



Last spring Arden did a photo shoot for the Children’s Hospital of Philadelphia and they have been so sweet all year, using her photos in numerous places. Thank you to CHOP for their amazing care and for spotlighting Arden and type I diabetes so brightly!



The following are archived comments from this post. You can post new comments below.

Patrick McConnell
That`s Great, You`re a Very Lucky Dad... Congrats
Friday, June 10, 2011 - 04:25 PM




Microalbuminuria occurs when the kidney leaks small amounts ofalbumin into the urine, in other words, when there is an abnormally high permeability for albumin in the renal glomerulus.-an indicator of subclinical cardiovascular disease.


  1.  an indicator of subclinical cardiovascular disease

  2.  marker of vascular endothelial dysfunction

  3.  an important prognostic marker for kidney disease

     in diabetes mellitus

     in hypertension



A number of months ago I was speaking to another type I parent, she follows the site and we speak every now and then. During the course of our conversation she mentioned that reading blogs like mine is incredibly helpful but that sometimes she has to stay away because they can make her feel like she isn’t doing a good job of caring for her child. It took me a moment but I understood what she was saying. I don’t write very often about the things that I flat out mess up or the fears that live inside of me... Honestly, the latter is tougher to blog about then the former but today I’m going to give it a shot.


This one’s for you Michelle...


Three months ago I received an email from Arden’s NP, she said that she needed to talk to me about lab results. This email made my stomach turn as she and I do everything via email and that she was trying to set up a phone call was very out of character and I assumed not good news...


She called a few hours later and told me that Arden’s microalbuminuria level was alarmingly high, she was 57 and the high end of except able is 30. I tried to listen to the rest of what she was saying but it was difficult because I was also trying not to cry. When I got off of the phone I searched 

microalbuminuria on the web and found the information that is at the top of this post. Then I called Kelly at work, she researched it further while we sat in silence on the phone. Assuming that this test is correct, it looked like Arden was having serious kidney issues.


That’s when the dark thoughts show up. If our six year old is having kidney issues after only having type I for four years, well, it doesn’t seem like this is going to be a very good life for her. Sadness creeps in, silence becomes painful and I can’t seem to find one thing that I can do to help. The helplessness has returned. It took me a year to stop feeling helpless after Arden was diagnosed and in an instant that debilitating feeling came right back. Arden is sick, I can’t do anything to make her better, nothing seems fair - I’m lost.


A few days went by and I couldn’t shake it. My mind raced with the realities of what it would mean to need a kidney. I began having trouble looking Arden in the eye, I wasn’t sleeping, I couldn’t eat, I was in trouble and so was Arden. 


Now keep in mind that my NP said not to worry, we set up a time to retest her - I was specifically told that it was “not time to worry” but I couldn’t help it.


A couple of days after the NP and I spoke Kelly and I were still furiously Googling and reading everything that we could about microalbuminuria - ugh even the name sucks... As that was happening Arden seemed to be getting sick, Kelly thought that she had a UTI so I took her to her pediatrician. During that visit Arden told her doctor that it “burned” when she went to the bathroom. He tested her for a UTI in the office, the test came back negative but he sent a sample to the lab for a more complete analysis (thank goodness that he did) and a day later he called to say that Arden indeed had a UTI as Kelly had thought. He starts telling me that, “UTIs are common in girls this age and.........” just then I stop listening to him because I remembered that Kelly read online that a UTI can cause false positives in microalbuminuria tests - and with that, I could breath again.


Elated, I called the NP told her what had transpired, she couldn’t confirm that a UTI could cause a false positive so she checked into it, called me right back and confirmed that what I read was indeed correct... we decided to not retest Arden until her next quarterly appointment. That appointment was Monday.


I collected the sample in the morning and began my day...


By the time I had to get into the shower I was beginning to experience a fair amount of anxiety (and I am not an anxious person). I actually called Kelly and asked her to tell me about her morning at work, I cleaned the kitchen, vacuumed, I was trying everything to not think about the pee in the refrigerator. I knew that there was nothing to worry about but I just couldn’t help it.


So to anyone reading this but especially to you Michelle, please don’t ever think that I am living in some diabetesutopia... things get as shitty here as they do at your house and I promise to try to do a better job of showing all sides when I write. :)


This all ends well obviously. The NP emailed last night with the results of Arden’s microalbuminuria retest... 7.1! Her kidneys are fine and we are relieved but never will we be free of that little question that lives way in the back of our minds that asks, “what’s next?”. 


The picture at the top of this post is a random shot of a very little Arden...



The following are archived comments from this post. You can post new comments below.

I was on the edge of my seat reading. This I love your blog and I love love your love for Arden. I love sahds :) 

For some reason though I can't get blogger to add you in my feed with updates on new! Lol its a year of it knocking you off my blog roll.
Sunday, June 26, 2011 - 06:08 PM
Hi @sugarnove!

I will be moving my blog to a friendlier platform this summer and then it will be easy to track it. Until then you can try this link...

Some people have luck tracking it.

ps. I have a theory about your 'allergies' drop me an email if you want to hear it...
Sunday, June 26, 2011 - 06:52 PM



Proud daddy post



You may remember that Arden’s children’s hospital asked her to pose for some photos a while back.  The pictures may be used in their endocrine brochures, posters and stuff like that.  Well today the photos arrived in our mailbox and I just had to share some of them with you.  

Mad props to the photographer, Ed Cunicelli of Glen Mills, PA -  He captured Arden beautifully!  Chop takes such amazing care of Arden’s type I that we just had to help out when they called.  I don’t usually make pronouncements like this on the site but... if you live within any reasonable distance of CHOP you really must consider making them your child’s endo.  While I’m at it, Arden wore a sleeveless shirt purposely so that her OmniPod would be in the pictures - she is so proud to wear it!  Truth is, I don’t know where we’d be without CHOP and OmniPod, they both have saved us more times then I can count.



The following are archived comments from this post. You can post new comments below.

Beautiful pictures of Arden, Scott! They capture her spirit. I love that they feature her OmniPod. We live just outside Philly but don't use CHOP, we use DuPont and Thomas Jefferson. I am glad you have had great experiences with CHOP and her endo, it's so important. Congrats on the pictures, they are just beautiful!
Sunday, June 6, 2010 - 01:25 PM


Basal the low away

It’s day two of Blog Week, today’s writing assignment is how to treat a low BG.


My wife and I sat in CHOP’s pump class listening to the trainers tout all the reasons why insulin pumping was the way to go and we were on board with all of them.  My daughter Arden had type I for about two years by this time, Arden was diagnosed just after her second birthday.  She is a tiny little thing, on the day of her diagnosis she weighed just seventeen pounds.  By the time we reached this pump class I had become a master of injecting dropsof insulin and I was adept at playing, what I refer to as, the scale game.  I think of diabetes management like the scales of justice but the scale trays have holes in the bottom in my version.  You put some food on one side and it takes the scale off balance, so you add some insulin to the other side.  Sometimes the food runs out before it should and then the scale gets too heavy on the other side and so the day goes like a teeter-totter, gaining and losing riders. All I have to do is stand next to it and add the needed ballast to the proper side.  Just that easy.


But back to that pump class.  The trainer came around and asked if we had any questions.  People had tons, about activity, swimming all the newbie questions that pop into your head. I only had one question, I wanted to make sure I was understanding basal rates correctly, I asked, “am I reading this right, can I shut off the basal rate?”


The nurse said, “yes” and with that I was sold.


To me dealing with a low as a MDI patient was particularly disturbing because of the slow acting insulin that is active in the body.  Anyone that has used Levemir or Lantus will tell you that it seems to “burn” faster at times for no real reason, making it wildly unpredictable.  The notion that I could just stop the background insulin was amazing to me.  I now do it all the time, sometimes to slow a fall, sometimes to keep a BG level and often I do it just to buy me more time.  I’ll give you some examples:



(Literally), our school nurse called just now, it is time for recess and Arden is 64, too low.  It’s been 2 hrs and 30 mins since her last bolus and she is eating lunch in 30 minutes. If she wasn’t going to recess a would shut her basal off and retest her before lunch. Her are my reasons; we are well past the peak of her last bolus, she isn’t going to get any lower without insulin.  I bet if I shut off her basal right now and sent her back to class (she has no symptoms) she would be 90 at her pre-lunch test.  But she is heading out to play so I gave her a small candy (13carbs) and turned her basal off for 30 minutes (the basal isn’t probably needed here but I’m gong to trade a slightly higher BG for the nurse’s sanity).  This will counteract the activity and address the low.  She’ll be back before lunch probably at 160.  If I’m still writing when they call back I’ll put the BG (here). UPDATE: Nurse just called, Arden is 165 before lunch and after recess.  I’ll leave this space empty to receive your applause {          }.


Last week Arden was trending very low all evening, she was in the 120s before bed and I expected the lows to continue, so I tested her at 1am.  At 1am she was lower then I had anticipated (64) so I shut her basal off for an 90 minutes and went back to bed.  When I tested her at 2:30 she was still in the 60s, a stubborn low.  This next bit is a great example of how you can use restricted basal rates to control BGs.  At 1am Arden hadn’t had a bolus in 5 hours, so there is no residual insulin from the 8pm bolus left.  She is falling because of her basal.  Now I know that you may think the basal is just too high but please trust me it isn’t, this is an isolated anomaly.  Now the last thing I (any of us) want to do is wake up a 5 year old with a low BG at 2:30 in the morning and ask her to eat or drink, so I didn’t.  Instead, I’m going to take what the previous BGs tell me and use it in conjunction with the upcoming ‘dawn phenomenon’ against the low.  I also lend some credence to the knowledge that our meters have a 20% window of accuracy and with Arden her “real” number is usually higher then the meter indicates by 10-15 points.  So I’m betting on a few things; her BG is probably more like 75, which is less scary, sometime after 3am her liver is going to start making glucose and there is absolutely no insulin left in her body.  So I shut her basal off for a further 3.5 hours and went back to sleep.  The next day I woke up early at 5:30am to check her BG and she was 125. I win!


I figured that there would be a barrel full of knowledge handed out today about foods that bring up BGs.  I have my favorites as well but to be honest, if your BG is falling fast you need a fast acting carb, if it’s stable but low you can use something a bit more slow acting that won’t cause such a severe spike.  None of this is brain surgery.  If you really want to jump to the next level of care... learn how to manipulate the basal rates to get you where you need to be.  For my money, the best feature of Arden’s OmniPod is being able to restrict or shut off the basal rate.  It’s the best way I know to control a low.  


Here’s where I tell you that I’m just an idiot with a computer, not a doctor and taking my advice may significantly shorten your or your child’s life. For the love of all that is holy do what my wife does... and don’t listen to me.  


Seriously, you should talk to your endo about this method but be warned that they may not be comfortable with it and therefor just dismiss it out of hand.  If I’ve learned anything, it’s that doctors don’t like to appear not to know, so do what you think is best after gathering as much information as you can.  


I do want to add for clarity that if you gave a bolus that ends up being too large and an hour later you are very low, shutting off the basal rate isn’t going to make a dent in your precipitous drop.  This method is to be used in a few very specific situations. Please be careful and test, test, test.


If you missed it, my day one addition, “A day in the life... with diabetes” to Blog Week is here.



The following are archived comments from this post. You can post new comments below.

Great post! I think the pump is geat for kiddos. Oh yeah and I'm subscribing to your posts.
Tuesday, May 11, 2010 - 02:32 PM
Practiced what I preach early this morning. Arden's #BGnow was 64 at 6:30 am, shut her basal off for an hour and she woke up at 95.
Wednesday, May 12, 2010 - 10:41 AM
You've got it down! Good for you! Now, can you help me? :)
Wednesday, May 12, 2010 - 12:04 PM
I'd be happy to help everyone!
Thursday, May 13, 2010 - 07:55 AM
When I had my pump training, I was told not to correct a low by turning off my basal because it takes too long to work.  Which you also pointed out in your post.  But it never occurred to me that I could reduce my basal to fend off a low.  Brilliant!  I tried it just last night - before bed I was 71 with over 1 unit still active from a snack.  I didn't want to eat again because I had JUST brushed my teeth.  I know I've been staying fairly stable overnight - so I knocked my basal down to 70% for two hours.  Worked like a charm, because I didn't get a single low alarm from my CGM.  And when I woke at 4am (because the cat decided it was play time) my blood sugar was 82!!!  Thank you for the great tip!!
Friday, May 14, 2010 - 10:21 AM

It makes me so happy that my tip worked for you - you don't know. Because I understanding what your life is like (on the level that I do), your comments literally made my eyes fill up with tears.  This comment alone made your Blog Week project worthwhile for me.

blog week -

Sunday, May 16, 2010 - 08:51 AM
I also think that this must work more quickly for children.  I've utilized my two-year olds sons pump temporary basal setting to keep his BG stable or to come up over night quite often, mostly because he HATES to be asked to eat or drink anything once asleep (who could blame him).  I have however had a difficult time utilizing it for exercise as it seems that the effects of it being shut off are longer lasting than I'd like and often lead to more drastic highs later.  
But for us it's definitely the best way to treat nightime lows.
Sunday, May 23, 2010 - 06:38 PM