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Question:

From Newport, Michigan, USA:

My nine-year-old daughter was diagnosed with type 1 diabetes almost seven years ago. I have taken great pride in taking the best care possible of her, doing my research and making certain she follows a strict diet by counting all her carbs and taking her Levoxyl. We have a very stable and strict schedule that works for the entire family.

Recently (in the last 6 months) her endocrinologist moved to another state and she is now being seen by a new doctor. This doctor treats me like a complete idiot! Her A1c levels have never been above 8% or below 6.8% From what I am told and what I have read that is perfect! However, this doctor is insisting that I am doing something wrong, and that there is no way I could maintain such a great level without cheating. I didn't know her blood lied!

At one point in out last visit he was so upset with me that he began swearing at my mother and told my daughter that she would be surgically injected with a glucose meter because he didn't believe her blood sugar results. My daughter is now petrified and is refusing to go back.

She experiences a low blood sugar very rarely as I am constantly watching and checking her. She is checked anywhere between 6-10 times a day and sometimes twice in the middle of the night. Does it appear that there may be something wrong with the way I am caring for her? Is this glucose meter necessary?

I am not keeping any secrets here. I have always been commended for the great care giving I have done with her and one of the doctors even asked that I speak and share her meal plan and routine with other parents. Now all of the sudden I feel like I am failing and I wonder if it is me. Having a child with this disease is hard work but watching her grow up healthy is well worth it as any parent would probably agree. Any advice is certainly welcomed.

Answer:

I agree that the A1c levels that you report for your daughter represent very good control. As you must know it is quite easy to misrepresent blood sugar levels; but this is essentially impossible with the A1c assay when it is done in a clinical laboratory with a machine like the DCA 2000.

In any case I would not advise any long term indwelling glucose sensor partly of course because it would seem to be unnecessary; but also because in the next few years there are likely to be infrared skin sensors that can signal to a pump by wireless. At first they will just to show the glucose level and to recommend a bolus dose; but the hope of course is that in a few more years they will become safe and reliable enough to control the pump itself.

My only suggestion would be to see if you can maintain this degree of control with rather fewer blood sugar assays and in any case you might, if you have not done so already, consider using one of the almost painless monitors that use a forearm sample (www.therasense.com.

Finally with all the new developments in the technical side of managing Diabetes I think you need to find another Diabetes Team for your daughter, one that contains not only a pediatric endocrinologist; but a nurse educator, a nutritionist and a social worker as well, all of whom you will be able to depend on for advice. If such a team is not easily available it might be worth while, with your already well developed skills, to make a trip to a larger center; but perhaps only once a year, relying on your pediatrician for the rest of the time; but also having occasional phone contact with the main team.

DOB

Additional comments from Dr. Alan Schorr:

Very simple solution: Time to find a new endocrinologist. This appears, if everything is correct, an inappropriate approach to care for any individual. I would not tolerate this and find myself a new specialist.

ABS

Additional comments from Dr. David Schwartz:

Something here does not make sense: You indicate that the HbA1cs never exceed 8% in a prepubertal child with diabetes for the past seven years?! That seems pretty good to me! You child is happy, otherwise healthy, progressing in school, active, gaining weight/growing and has accommodated to the potential rigors of life with diabetes? If so, that would be good news also.

Did you previously see peds endo or adult endo? Is the current physician a peds endo or adult endo?

Something in the story seems to not make sense as to why, given what you describe, that the current physician is not more positive. Home glucose readings should (and do) complement the HbA1c. If the glucose sticks at home were wonderful, but the HbA1c were bad, then I'd suspect something amiss. Similarly, if the HbA1c were excellent, but the fingerstick values were bad, I'd be suspicious of something else also. One can get false HbA1c values from a variety (but not limitless) ways.

So I'd suggest the following:

  1. Schedule some dedicated time with the physician to calmly, rationally discuss just what the issues are that seem to be polarizing your approaches. The child's best interest are the common goal.

  2. Speak with the nurse or psychosocial worker in the diabetes team office of your physician to perhaps inquire further (or beforehand).

  3. Perhaps find the former physician with whom you worked to see if that person can translate for you what seems to be at issue.

  4. Consider that not everyone's style is a good fit. You may need to find a pediatric diabetes provider that you and especially your daughter can having a good rapport.

    Self reflect that there are (at least) 2 sides to every story. What is missing here?

DS

Additional comments from Dr. Stuart Brink:

Sounds like you are doing fine and your daughter is also doing fine - and healthy. I am puzzled by the interaction you reported with this new doctor but would suggest that you call and either talk to the new doc on the phone or make a separate appointment to review this situation. You may also want to call the previous doctor and review this as well since your former doc may be able to talk with the new doc on your behalf. You need to be comfortable with your daughter's health care providers and if this cannot be ironed out as some kind of misunderstanding, then consider switching to an alternative provider.

SB

Additional comments from Barb Schreiner, diabetes nurse specialist:

Managing diabetes truly takes a team effort. Your daughter and your family are important (probably THE most important) members of the team. And you need professionals who can be team players as well. My advice is to decide the type of relationship you want from your physician. Listen carefully to what the physician is advising, decide if that works for you and your child. Negotiate changes in therapy as needed. If the relationship is not working, find a provider who is a better match for YOUR diabetes team.

BS

DTQ-20040122181824
Original posting 23 Jan 2004
Posted to Daily Care

  
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Last Updated: Tuesday April 06, 2010 15:09:54
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