Please let your daughter know that you found Dennis, Dorrie, Joe, Lise and Chris who are just like her and are willing to listen to her any time, she just has to tell you what she’s thinking or feeling. Check out Greater New England JDRF Diabetes Chapter Support I see they have a zoom meeting for parents scheduled for April 16th.
The Dexcom G7 has good instructions. First time setup is a lot of easy steps, putting the second one on will be lots easier. Read the manual and pay close attention to the part that says if symptoms don’t match the number displayed do a test with the blood glucose meter and use the BGM number.
On choosing a care team I think of first and second appointments like I am interviewing them for a job. In addition to the great advice that has already been given above think about how you handle goals, as in things you want to achieve then listen if how the person you are meeting with is communicating goals and differentiating them from the critically important information.
I hope you are doing okay. Please keep letting us know what you need because we are happy to help.
Thanks for the help. @spdif : I do not find the April 16th meeting. can u please send me the direct link.
Also thanks a lot for the suggestion about interview and choosing doctor. We are looking into it.
A couple more tips about finding a doctor: I’ve seen ones who were sole practitioners - the only one in the office, as well as group practices. With a group you might find it easier to see someone if you really need to, even if it’s not your/your child’s favorite.
Also my current physician is in the medical building of a hospital. If I have an emergency or even just go for a scheduled procedure, she’s there if the need arises. I went to the ER for the first and only time fearing DKA several years ago. I advised the hospital who my endo was and she came to check on me.
And a tip: schedule your next appointment as you’re checking out from each visit - sometimes it’s tough to get in if you wait until close to the date you’re due back.
@Kalpesh.gupta, if you can’t get to a TON Summit in person, this link lists 4 Virtual Summits. The vurtual, in my opinion, are not as comprehensive or as vibrant as the In-Person but are good. TypeOneNation Summits - JDRF
Hello All,
Today appointment went well. WE ran out of time. we ask them questions for almost 90 mins back and forth. they answered most of the questions. The only thing is we met with Nurse pratoicners only. As doctor and Dietecians are too busy and they do not have any appointmnent till May 9. I am still thinking to meet with someone else to see what we can find. Is that normal as it seems they have less number of doctors.
I have another question. is there a way to have the reciver and phoen app both work with Dexcom G7? As my daughter is only 6 year old, I want her to have reciver but I want to see if it easy to enter data and locatate and analyze? Anyone is doing this right now or have any experince?
@Kalpesh.gupta If you have a Dexcom you need a reader or a phone or you can use both to receive data for viewing, the phone app automatically uploads data to Dexcom so analysis using clarity is easy. The reader can be uploaded to Dexcom as well. So in a sense you do not require a phone for this. This “reader only”solution tends to be less expensive.
What are you trying to achieve? If your child has the phone app, and a phone data plan, you will be able to “follow” her CGM and see blood sugar while she is at school, provided that you have your own phone and have Dexcom follow app installed. This will only work with the phone app.
Hi @Kalpesh.gupta. I’m glad to hear your appointment went well. Hopefully the office will be available when you need them before your next visit in May.
There is nothing you need to enter on your Dexcom unless you need to do a calibration. If you are looking at record keeping there are several apps available. I should say first that your doctor’s office might be linked to certain apps that will allow them to look at your records (if you choose to share them) - Glooko account is linked to my doctor’s office since I responded to their “invitation” to join.
Some other popular apps are SugrMate, MySugar and Glooko, which I believe are all free. MyFitnessPal is also very good but requires a one year subscription after a trial period. All will let your record exercise and general health data as well as logging meals. There are many others available - those are just ones I’ve used or checked out; but overall I think it’s a matter of personal preference.
Please contact your daughter’s endocrinologist care team. Are you writing down everything she eats, and the BG numbers, and how much you dosed her at each meal? The endocrinologist team will need to review these things in order to understand what needs adjusting. Are you dosing her before she eats or after she eats? And if after she eats, how long after? It is overwhelming at first but it’s important to take the time to document everything. That is key. Her numbers may be high because she’s eating more now after getting home from the hospital. How many days were you at the hospital with your daughter?
Yes this is normal. The nurses reviewed how your daughter and you were doing and saw that you had a doc who was able to answer treatment questions until the endocrinologist appointment. A lot of diabetes isn’t very complicated and the nurses, certified diabetes educators, dieticians and nutritionists can do a great job teaching you the information you’ll need to teach your daughter.
Yes the G7 will communicate with the Dexcom receiver and the Dexcom app on a phone at the same time. The G7 sensor stores 24 hours of readings so if the phone, reader or both aren’t in range for a reading the next time they are in range they can get up to 24 hours of readings from the sensor. Keeping the reader with her at school is great because it is easiest for school staff to deal with. Getting your daughter her own phone to view her Dexcom readings has pros and cons.
Was your appointment at or with someone from Joslin Diabetes Center? What data did they ask your to keep track of? Did they recommend a specific app for recording information? Maybe @cuteemoshannon, @HisWifeTheirMama or @Sonomaj have a moment to compare their diagnoses adventures to what you are going through.
Thanks. I do not want to give my daughter a phone as she is only 6 but i want to see if there is a way to see and share her data with school nurse using reciver only
No. Our appointment is with mass general brigham and they ask what she eat and she is doing and then they change her numbers as she is all over the place
How much insulin is enough or too much varies from person to person , so my insulin needs will be different from someone else of my height, weight, gender etc. Your doctor will adjust gradually based on how she responds to the disagree she is getting, and when a change is made it can take 3-4 days for it to “settle in.”
It can take time for numbers to come down - a few to several hours - even if you know the right insulin dose to give. People who are newly diagnosed experience a “honeymoon period” during which their body releases some of its own insulin - but there’s no way to know when it will happen, or how much it will produce. So doctor may be dosing conservatively to keep her from going low if that happens. If you are concerned about how long she has been in the 400s - even though it’s dropping - do let your doctor know. Had she started using Dexcom? That will help you keep track of the drop.
Regarding pumps, there are three players on the market: Tandem (T-Slim), Omnipod (which is tubeless) and Medtronic (Minimed). The first two pair with Dexcom although Omnipod currently pairs with the G6 (not the 7). Medtronic has its own proprietary CGM. Insurances generally cover pumps but yours may not cover all of them so that may be the place to start. After that there are lots of discussions on this forum and elsewhere comparing pumps, but you might want to do some research on the company websites as a starting point.
@Kalpesh.gupta I will offer my response to your questions based on my personal experiences and influenced by my bias gathered by living with diabetes for seven decades. Both MGH and B&W are outstanding hospitals with some of the world’s best physicians but my experience with those facilities is only through first-degree family members.
1 unit per kg is well in excess of the recommended <0.5; mine has consistently been 0.31. The higher rate being used for your daughter is probably temporary in attempt to stabilize her diabetes and bring her body glucose level (BGL) to more “normal” range.
400 is well above the international consensus established range of 70 - 180 mg/gl for diabetes management. The good news for her is, it is coming down; I’d be concerned but not too worried knowing she is being watched by knowledgeable medics.
“Normal” for newly diagnosed covers many factors. I spent two weeks in hospital at diagnosis in an attempt to get me stabilized - I have no idea what my blood sugar readings were. Now this is my bias: Joslin has been specializing solely in diabetes care for more than 125 years and has highly qualified pediatric specialists.
An insulin pump will not work magic and get her numbers stabilized. My thoughts are to wait to get her a pump.
