Wednesday, March 16, 2011

The Appointment...

All I can say is WOW. We took Lily to Denver to the Barbara Davis Center on Monday to be seen by the one and only diabetes guru, Dr. Peter Chase. If you aren't sure of who he is, he is the author of the Pink Panther books you are given upon diagnosis. He is also the Principal Investigator on the Artificial Pancreas Project. His lab also does the TrialNet research. He is the bomb...to put it mildly.

A little background: In December, for work, I went to tour the Barbara Davis Center. I had the opportunity to meet all of the doctors, nurses, CDE's, nutritionists and social workers. I also met the director of the lab (which was SO CSI cool...young kids all trendy running around with microscopes and petri dishes). I was blown away with the knowledge these people have and the best part? They all have a connection to type 1 so they really understand what we go through. They GET IT. Dr. Chase's stepson was diagnosed at age 5. He is now 40 and a VP in the TV biz. I sent Dr. Chase a personal email asking him if he would see Lily so we could get a second opinion. He graciously obliged and we were set to see him March 14th.

Fast forward to March 14th....

We show up at the BDC 20 minutes early because we were just a tad bit excited. They immediately showed us back to the room to get blood sugars drawn, etc. The guy that did this...wearing a pump. After that, we went to another room to have the dreaded A1C done. We were then brought into a room to wait for whoever was coming next (I had requested to see everyone and their mother since we live out of town...turns out they do this for first time patients anyway). At 10:05 Dr. Chase and Georgeanne, the nurse, come in and sit down. Was I still on Houston time or was he just ON TIME?? Holy Lord. We said our hellos, Lily stared at the floor and refused to look up, but was at least smiling...my shy child, and Dr. Chase and Georgeanne sat down with us at the little desk. All five of us, sitting down, talking. There was no rush. There was no looking at watches. It was us and them...one on one. They immediately dove into it all. Lily's A1C had gone down a whole point just about after starting shots again. That was a shocker. We are still trying to figure out if it's our awesome logging skills when you have no pump to rely on, or if it's the lypodystrophy she was experiencing from the Omnipod.

Dr. Chase spent 1.5 hours with us in this little room at this little table. Yes...you read that correctly. He answered every question, covered every subject, did everything you always dreamed a doctor would do. We were speechless...literally. When he was finished, we had no questions and nothing to add. Again, WOW. He is such a wealth of knowledge that we got all kinds of interesting little tidbits as well. Here are some of the notes I took:

  • Look into GAD trial for Abby (can prolong diabetes by 6-10 years if she has 2 out of 3 markers for being T1)
  • fast acting insulin peaks at 95 minutes
  • 43 degrees is the coolest insulin should be stored so use the door or the front of the shelf of the fridge. 86 degrees is the max.
  • bolus 20 minutes prior to meal unless under 100
  • a TRUE low, severe low, is 55 and under
  • the nonD person spends 10% of their day between 60-70
  • 75% of severe lows in kids are from exercise earlier in the day and happen at night
  • Think ahead if you will be exercising and reduce Lantus by 1/2 to 1 unit
  • NEVER go to bed under 130
  • Treat lows at this number with solids and not fluids
  • On sick days, go to ER if mouth is dry and there is labored breathing
  • No eye exams before 10 years old
  • Get cholesterol and lipids checked before age 10
  • 50% of teens have enlarged thyroid
  • SEVERE LOWS UNDER 55 can last for 2 hours and 25 minutes prior to seizures, unconsciousness, etc. studies show
  • If fiber on a label is over 5 grams, subtract HALF
  • When giving an injection, don't make a dimple in the skin...hold the needle in the cup of your hand without pressing it in too far. If pressed to far, can get in muscle and insulin doesn't work correctly
  • If using an insulin pen, prime the needle EVERY time you use it
So, that is it in a nutshell. The best part of this trip was the service. They were kind, understanding, attentive, not rushed and you felt as though they genuinely cared about the well-being of your little diabetic. We left with two books, articles, charts, graphs, etc. courtesy of Dr. Chase. It was truly the best experience EVER! And we plan to send Lily to their camp at age 10...that's the age he really recommends!

15 comments:

  1. awesome! pleased to read it. i recently heard a few of those things at a seminar. glad they gave you and your daughter unrushed time and attention.

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  2. We store our insulin in the veggie drawer, never had any issues?

    Glad appt went well, and awesome on the a1c. no matter how you did it shots or pod u did it!!

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  3. What a wonderful opportunity and experience for you guys Kim. I read this post last night from my phone (I cannot type on my phone - LOL), but wanted to say thanks for sharing all the tips at the end...and also WOOT on the A1C. I know how hard you have been working since converting back to MDI.

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  4. It's wonderful you were able to take Lilly to Barbara Davis; such sensible tips (especially the one about the bed time blood sugar target of 130, which I heartily concur with,..though I use 120 sometimes). Wonder how far Barbara Davis is from your home and if you will be able to continue to go. Hope so. If not close by, maybe you can make a yearly visit. I think it would be great if some of the diabetes centers would treat using Skype between office visits and faxing or sending in blood sugars and information remotely. It is difficult to get quality care in some areas of the country.

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  5. P.S. But why no eye exams until ten years? We have had yearly eye exams since diagnosis at eight years.

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  6. The ADA recommends 10 years old. I am assuming because most retinopathy happens after the teenage years.

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  7. Oh, and we are a 2 hour plane ride to Denver so it would definitely be an annual thing! I agree...Skype rocks.

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  8. WOW!!!!!!!! That's SO COOL!!!!!! Thanks for the tips from the experts :)

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  9. How exciting!!! I'm so happy for you!!

    Can you explain the sever low lasting 2 hrs.... ? Not sure I understand. Can the seizures happen 2 hrs after that low? Or something else....?

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  10. He was basically saying that according to studies, you have a severe low for 2 hours and 25 minutes prior to a seizure, etc. Does that make sense?

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  11. He answered every question, covered every subject, did everything you always dreamed a doctor would do. We were speechless ... literally. When he was finished, we had no questions and nothing to add. Again, WOW.

    This sounds like Dr. Marcus Welby. There are not that many type of doctors any more but there are some. These are the types of doctors we should have. I am happy you had this experience.

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  12. Sounds like a great experience.
    (just found you from Dmom Blog...nice to "meet" you)

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  13. Hey Denise! Nice to "meet" you too!

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  14. Sounds like the dream visit. My son was just diagnosed 4 mos ago (Dec '10) at age 3, I am still so confused about a lot. If you have time, would you mind emailing me, I have a couple questions about some of the bullet points you listed at the end? If you are too busy, I understand. lisaalexander8302@yahoo.com

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  15. Hey! I just found you from DMom as well...GREAT, super informative post! I'm looking forward to reading through your blog. :)

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