We only have lantus we have no fast acting meal time insulin. That’s one of the issues he will not order it for her he states the lantus is enough.
I only have 2 words: new doctor. Thats unacceptable IMHO. His advice is TERRIBLE.
Im assuming she’s been diagnosed as type 1?
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yes she has been dx as type one for over a year now
Just a reminder that doctors are not all equal. Some graduate at the top of their class and some at the bottom. Sadly, we often get the latter in our sparsely populated rural communities. Your very old-time doctor sounds as though he is not at all knowledgeable about T1 diabetes treatment and doesn’t know how to treat a young child with it. It is obvious that he shies away from technology because he doesn’t understand how to deal with it. And the same for insulin. He is a travesty of an endocrinologist. Run to another source for health care for your daughter. I have found that even CDEs who, obviously, specialize in diabetes care often don’t know what seasoned diabetics know. You have received some very good advice here. I wish you and your daughter much better care soon!
I could not agree more! I feel more rural areas don’t always get the best of doctors. Thank you we are going to a new doctor next Monday at a children’s hospital who I have heard many good things about. Also I agree doctors can never know what someone lives with daily every case is different and what works for some doesn’t for all diabetes is really not cut and dry one way or the other. That’s another reason we are getting another opinion I was a doctor to look at my daughter look at her case and tell me what would be best treatment option for her not what some text book says. But actuall look at her as a person no two people respond the same way
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I truly hope luck is in your favor & you find this kind of Dr. Please keep us updated.
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I don’t expect it to be excatully that way but wouldn’t that be amazing. But someone willing to listen and help her would be a wonderful start. Willing to answer my questions. I feel like now it’s so cut and dry and very old school with her current endo. Everything is black and white and I feel like with diabetes there is grey area.
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IMHO - far worse than that. The current Doc is not old school. My wording would be incompetent. (If I was to stick to being polite.)
My suggestion for your upcoming appointment. Forget everything you were told. Do not dwell on prior instructions. Do not waste time debating what the previous Doc said. Focus on new information with a new Diabetes Team.
We were in a Children’s Hospital for almost a week upon initial diagnosis. There was a tremendous amount of education for both children (appropriate for age level as obviously it varies tremendously but even young children learn more and faster than parents often suspect) as well as Parents.
Ask for training and education which is given for newly diagnosed Pediatric patients. Sign up for all of it.
Again - Do not try to relate your new information to anything you were told previously. Trust your new doctors.
PS - My suggestion do not focus on cgm with the first visit. There actually are more important things to deal with. A cgm is obviously appropriate for any and all people with T1. You should have many more visits scheduled. Save the cgm discussion for a subsequent visit. There really should be a flood of information and as important as a cgm is - the reality is there are more important things to learn first.
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^This is excellent advice.
Be open & direct about your desire to learn and your desire to work with the endo as a team. You’ll be setting the ground rules, so to speak, for all future visits.
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thank you thats a really good idea no need to debate his wrong doings when we can start from scratch so to speak. plus i would like for our experience here not to be tainted by prior doctors. we were given very little to almost zero education and instructions most of what i have learned i have learned from here and my own research so it will be very refreshing to have a team to help. im glad to hear that they will try educate her on her age level thats really awesome. i feel its important for her to know too. as you said age level appropriate. i will be taking any and all training they offer the more i can learn the better.
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Find a new endocrinologist, ASAP.
First off- never stop advocating for your child. I have had type 1 diabetes for 23 years (I’m now 29), and my mom still fights for me. Your support will mean more to your daughter than you could ever know.
Secondly, as a medical student, I can tell you that the care your daughter is receiving is not adequate. Testing her blood sugar only twice a day? That is unheard of and honestly blowing my mind. I was diagnosed at six and 6-8 times a day was the standard at that point. I now check closer to 10-12 times a day (when I don’t have a CGM on). The more you check, the better. As far as the mealtime insulin goes, I personally think that sounds odd that the doctor doesn’t have her taking any but I also don’t have her charts. I would definitely, 100% find a new doctor to at least get a second opinion. They may determine that the first endocrinologist is right in not having her take a mealtime bolus, but you do not want to wait and see with an issue like this.
Finally, a doctor should always have the patient’s best interests in mind. So if he thinks a CGM is a bad idea, he may have a reason for that. However, shutting you down and not being open to the discussion of it is not helpful. This is another reason I would find another endocrinologist, even if that means a full day trip. When I was a kid, the endocrinologist we chose to go to was three hours away. My mom decided to make a day of it and it was always something I looked forward to. A doctors appointment followed by lunch and something fun before driving back home. I realize this may not be feasible due to time constraints or whatever else, but the point is that there are ways to make lemonade out of a disease that feels an awful lot like a bag full of lemons. The important thing is making sure your daughter has the best care possible to prevent long term complications.
EDIT: I just saw the bottom of the thread and saw that you found a new endocrinologist. Yay! I hope that all goes well.
How did your appointment with the new endocrinologist go?
We spent the day in our new endos office and I honestly could not be happier!!! First thing she did was say she was ordering us a dexcom she believes all children should have one as a safety precaution. Also she did not understand why she was not on any meal time insulin and ordered that for her to. She also changed her to being checked 6-8 times a day. And most certainly wants the night time checks. I recieved a ton of education and also go back for more classes. Which was incrediable to see and learn. She is also giving us glucagon to have on hand. Her new target numbers are between 70-150. She would like to see her more below 130 but would start at 150 and work from there. She NEVER wants to see her in 50’s again. She also gave us a formula for her sick days and showed us how care will change on those days.
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Congratulations on finally getting the health care help you need! The endo sounds right on!
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Congratulations on finally getting the health care help you need! The endo sounds right on!
Sorry, addressed this to the wrong person initially.
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Thank you and yes I could not be happier!!!
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This all sounds great and is entirely in line with the information we have received from our Ped Endo.
Just forget about the previous doc experience like it never happened.
You now have a good doc and can focus on what really needs to be done.
Remember there is a great deal of experience in these forums. Even with an outstanding medical team, there are always questions.
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Oh I’m never looking back to that old endo. I’m looking forward to better care. And I love his forum the people have been more than helpful in my time of need. And I am so very thankful to have found such a wonderful community
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Study the glucagon directions until you can do it blindfolded at 3AM
You really do not want to be reading directions if you need it.
Great things turned out well!
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Yay!!! Congratulations on what sounds like a super productive and gratifying Dr.s visit.
This might be a bit unrealistic though since stuff happens with diabetes but the Dexcom will help a lot with alerting you to oncoming lows so it will minimize that a bit. And I’m sure your daughter will enjoy the occasional piece of birthday cake or some other treat now that she has mealtime insulin.