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Doctor nightmare! PLEASE HELP

Discussion in 'Parents of Children with Type 1' started by amberdawn33, Jul 21, 2011.

  1. amberdawn33

    amberdawn33 Approved members

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    Haven't been on in a while but I'm thinking I need some help. We had the greatest pedicatric endocrinologist that has ever existed and he died suddely of a stroke a few months ago. Since then we have seen 2 other endocrinologist in the only other office in the state of Mississippi. The first doc is the most overbooked doctor in the state and we only got to see him because the new doctor was sick. He was fair and tweaked the settings on the pump(animas) a tiny bit. The next doctor was basically terrible - hates the pump and her nurse bad mouthed us to her -(we could hear it)! Just a bit of background- Skylar is almost 11 years old and she has been on the pump almost 2 years. Also, I am a RN and my husband is an EMT so we are not in any way stupid and we are very aware of the ins and outs of Diabetes and insulin etc. This nurse and doctor made us feel like idiots. They said we should in no way be letting Skylar be managing her pump or her care. Our old doctor was very into educating Skylar and getting her used to bolusing, counting carbs etc. All we do is assist her in counting carbs and allow her to put the carbs/boluses in her pump while we supervise! Is this not right? The only problem we have had has been her bolusing on her own at night after we went to bed - she would get a snack without us knowing but we mentioned that to her and they basically threatened to take her off the pump if she did this again and stuck their finger in our faces and made us feel like the worst parents in the world. Oh and, we haven't seen the doc in 3 months and we couldn't even get and HgbA1c because they were out of kits! Needless to say, we will not be seeing her again.

    Sooooo.....we got permission to go back to the first doctor- after jumping through hoops with the office manager at the clinic and WE CAN'T GET AN APPOINTMENT UNTIL DECEMBER! We were used to seeing our old doc every 6-8 weeks! He would analyse every number and make changes as necessary. The doc at the new clinic didn't change one basal setting and only changed the ISF! She is UNCONTROLLED! I just looked over her numbers and she hasn't had a blood sugar under 200 in days........

    I got a referral to go to a new clinic in Alabama but that appointment isn't until October.

    So we haven't seen a doc since May......No A1C since March.......Blood sugars in the 200s to 400s and NO ENDOCRINOLOGIST!

    So, as I said, I am a RN but I have been spoiled by a great doc who made all the pump changes. I guess I'm on my own now right?

    Where do I start ? basal? ISF? insulin/carb ratio? Her numbers are all high and there is no pattern. Please help!

    By the way, the MDs around here won't touch her pump! I have tried to get some advice. I am going to the local clinic to get an A1c I guess.

    Sorry so long.....just very frustrated! :mad:
     
  2. tiger7lady

    tiger7lady Approved members

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    I think the first thing you need to do is go get a couple books from the library. Think Like a Pancreas by Gary Scheiner is a very good one or Pumping Insulin is another good one to try. If you read through the books it will help you determine where her needs are off. It's obvious from her numbers that she needs more insulin but the books can help guide you on if her basal needs to go up or if her I:C ratio is off. I think most people only see their endo about every 3 months.

    As for the A1C you can purchase kits over the counter at the pharmacy for about $30. I know Bayer makes one and the box comes with 2. There are probably some more brands out there as well.

    Finally, your daughter is plenty old enough to be bolusing herself. Your routine is exactly like ours. We do the carb counts, tell our son, and he punches everything in. The only time we touch the pump is to download the info, do temp basal's, a combo bolus, or when we are changing his set. As long as you daughter is actually bolusing and not forgetting she is plenty old enough.
     
  3. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    I agree with doing a home A1c. And I'd start with a basic basal test. Yes, it's annoying, but my first guess is that she's a pubescent girl who is no longer honeymooning and she needs more basal, probably a lot more basal.

    You can and, to be honest, should be doing adjustments on your own. Log, log, log and adjust as needed. Once you've done it you'll be amazed that you doubted your ability. ;)
     
  4. pianoplayer4

    pianoplayer4 Approved members

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    I'm sorry to hear about your endo=( here is my advice(From a teen who's endo sucks and who does ALOT of self care/adjustments by choice)

    I would get a bayer at home A1C test kit, just to get a starting point.

    Your on the ping? so am I, the meter remote has very cool features that can tell you things like what your averege number is per time of day, that migh help you pin point the areas you need to work on.

    then I would do some testing, I really hate basel testing so what I do instead is eat a small amout of carbs at breakfast one day and a large amount of carbs the next day ( make sure its food you can count well) if you rise (or fall) about the same amount each day then you need to change your basels, if not and you rose (or fell) more the day you had more carbs then you need to change you ratios. its not perfect, but its better than not eating for hours on end.

    I think it is great that you let your daughter help manage her d, one day she will have to and it is better to learn over time. talk to her about what your doing, ask her what she thinks you should change...

    The most important thing they taught me at the hospital was Food brings you up, insulin brings you down. If your consistanly ou of range then make changes, just do them slowly so that if your wrong its easier to fix. if the highs are SUPER inconsistant then look for other patterns, Does she go high every time she eats a specific thing? then give more insulin for that meal. Are her sets going bad? is there alot of bubles in the tubing/resivoir that could be replacing some of the insulin she needs? is she maybe grazing by accident and not bolusing? or is she high after activity?

    Keep posting on here too, these guys are better than most endos, their the read deal=)

    sorry this is so long:eek: hope it helps
     
  5. amberdawn33

    amberdawn33 Approved members

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    Thanks so much to both of you. I knew I always see everyone on here talking about doing adjustments but I guess I was just so comfortable with the doc making the changes I never felt comfortable doing it myself. I will get the book. I just looked it up and it is $9.99 on kindle.

    Can you give me more information on doing the basal test?

    Thanks
     
  6. tbcarrick

    tbcarrick Approved members

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    also you could check her insulin sensitivity factor yourself...1800 rule.
    take 1800 and divide it by total daily dose(average of 3) then you get your
    ISF.........If you are close to your current number,that's probably ok for now...
    wish you the best of luck!!!
     
  7. Ali

    Ali Approved members

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    You are in a bind. it is awful to change Docs. I am a long time T1 so I agree with all the posts of self educating and figuring out how to do most of this yourself. You may have to change Docs many times over your life due to insurance changes, job changes, the Dr.moves, or quits, etc. etc. So self education is the best. Good luck and FWIW the best Doc (for me) is the one that will listen and work with you. Good luck. And frankly good Drs are few and far between.:eek::cwds:ali
     
  8. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    If you start a thread with her all of her basal rates, ISFs, I:Cs, and the last few days of blood sugars, I bet you will get lots of results.

    If all numbers for the last few days including the most recent one have been above 200, I think you should be correcting more often, to begin with, and then if they go back over 200 without food, raise basals.
     
  9. deafmack

    deafmack Approved members

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    Sorry you are having to go through that. It has to be so maddening and frustrating as well. You are getting some very good advice. The first thing to do is to look at basal rates and even do some basal testing. The book Pumping Insulin by John Walsh is a very good resource. I also like Think Like a Pancreas by Gary Scheiner.
    Of course the parents here are awesome and can help as well. (((HUGS)))
     
  10. Amy C.

    Amy C. Approved members

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    If there is anyone setup to make changes to your daughters' insulin, it is you and your husband. You just have to get started. I would start logging and looking at the numbers to see where your daughter is out of range.
     
  11. fredntan2

    fredntan2 Approved members

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    gary scheiner also does remote counseling. he's based out of Philly. he's got a website. I think its called integrated diabetes. we did it a few years ago.

    sorry your docs suck so bad down there:(
     
  12. Lisa P.

    Lisa P. Approved members

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    I'd also add that you should look around for a CDE. They can operate out of clinics, etc., not just endo offices. We've had two CDEs that didn't know how to help one bit or made things worse -- but one CDE that was fabulous for just what you're talking about. Try to find other moms of T1s and see if they know anybody, you might get lucky.
     
  13. MrsBadshoe

    MrsBadshoe Super Moderator

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    I agree with other post that I have read that you need to take control of the pump settings. We have been in charge of the pump settings from the very first moment on the pump. We use the Think like a Pancreas book as a reference.

    I hope you can find a Dr that will be a pleasant experience in the office but you need to step out on your own to control your pump settings.
     
  14. Amy C.

    Amy C. Approved members

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    As great as the first endo was, he did you a disservice by not encouraging you to learn how to make adjustments on your own. Independent diabetes management should be the goal of every endo for the patients.
     
  15. maryellen816

    maryellen816 Approved members

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    The level of oversight you had with your old doctor was really unusual. Most only see an endocrinologist 1-4 times per year. As a nurse, you are more than capable of making your own adjustments and once you find the confidence to make changes you should find your results will be better. This really could turn out to be a good change for your daughter's health.

    How much total insulin does your daughter get per day and what are her current basal rates? How many times per day do you test now? What have her A1C's been in the past?

    For now, going solely on the fact that you haven't seen a number below 200 for a long time, I would start with an across the board .10 increase in basal rates and then bolus and correct as usual for a few days. But also test test test both before and after meals and at night and log everything. You will start to see patterns and be able to see what needs tweaked.

    Your 11 year old daughter should be able to get herself a snack and bolus for it IMO, I am not sure why that was such a problem.

    Like someone else mentioned, if you want to post numbers and rates, people will make suggestions. I am sorry you had the rug pulled out from under you.
     
  16. GaPeach

    GaPeach Approved members

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    Great response. The 2 books mentioned will be valuable references for you.

    Most likely, you need to make a basal change if the BG is high all day long. The great thing about the pump is that you can "experiement" by running a TEMP basal of a certain % and observe the results. For our DD, we start with a 20% increase and then test frequently and observe results.

    Later, you can adjust I:C by post-meal BG checks.

    Your daughter is 11. Hormones drive BG crazy during puberty. At one point, around 11 -12, our DD's basl needs went up 30% almost overnight.

    As Jonah said, feel free to post BG #'s, carbs, insulin doses for a day or two for us to "analyze" and suggest.
     
  17. chbarnes

    chbarnes Approved members

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    This is a great service. You pay OOP, but it is not unreasonable and saves on time away from work. We actually don't use an endocrinologist. Our doctor is board certified in internal medicine and pediatrics. We use the CDE at the hospital and make most changes ourselves. Call around. You will find there are some pediatricians who manage diabetes and keep up on current technology. A wealthy family in our community, who uses the same doctor for their son with type I diabetes, flew to Boston to make sure their son was getting appropriate care. They told them at Joslyn they wouldn't change a thing.

    There are parents here who do a better job with pump settings than many pediatric endocrinologists. There is no reason to accept the kind of service you describe.
     
  18. 5kids4me

    5kids4me Approved members

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    I completely agree with this! We have been making all of my son's adjustments since 3-4 wks post dx. (And doing a pretty darn good job, I will say!) Believe me when I say,if we can do it, YOU can do it!

    The two books already mentioned are fabulous resources. I read and reread them. One more I really like is: Type 1 Diabetes in children, adolescents and young adults (How to become an expert on your own diabetes) by Dr. Ragnar Hanas. I bought it after seeing someone recommend it on this forum and it is full of great info. Good luck and even though it is work, learning how to do this on your own is very empowering-especially when you see the results.
     
  19. kjmaf

    kjmaf Approved members

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    I just sent you a private message. I live in Mississippi also and know most of the endos you are referring to. We see Dr. Torchinsky and have not had much dealings with the other endos. Even though I don't post on this board much, reading on here encouraged me to get comfortable tweaking the settings myself (which drives my husband nuts sometimes) and that has worked well for us. There is a good Type 1 Families group in the area that you may want to plug in to, also, if you have not already. It can be invaluable to have local support sometimes.
     
  20. selketine

    selketine Approved members

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    Yeah - I agree totally. Our pedi endo said to us that eventually WE should know more about taking care of William than she does.

    I have to recommend what someone else said - Gary Scheiner - who runs Integrated Diabetes: http://www.integrateddiabetes.com/ He does remote counseling by phone, email, etc. and he is excellent - and his office staff are also excellent and very responsive by phone. He wrote the "Think Like a Pancreas" book. He is not a warm and fuzzy dumpling but he is a nice guy and he is smart. I used his service once when I felt like I hit a wall with William's numbers and he gave excellent advice. I think if you can afford to pay OOP for his consulting fee- I would go with a 3 or 6 month service with him and explain your situation. You not only need assistance with the numbers - you need to LEARN how to do it yourself for down the road. With the multiple month plan you can call and talk to them whenever you need help - or email, etc.

    Your situation seems like the perfect scenario for remote counseling and what his office is made for.
     

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