Teleconference Endocrinologist?

I live in a rural setting...far, far away from any pediatric endocrinolgist for my daughter who is Type 1. When we do get the rare opportunity to see a doctor, they mostly talk to me, the mother, and don't really do anything with her. I am the one taking care of her, so I'm the one who needs to talk to the doctor. Since it is becomming increasingly hard to have an appointment with anyone (and it's always a new doctor since they are always getting fed up and quitting), and I would LOVE regular advice regarding doses and BG (preferably on a 3 month basis), I was wondering if there was such a thing as a teleconference with a diabetes doctor. Some kind of virtual outreach appointment that they could bill for and I could pay for, like a doctors appointment you don't have to drive to another state for.

Does such a thing exist? It should! Ortherwise, I'm all on my own being Doctor Mom.

Thanks!

Perhaps you could start your search here:
American Telemedicine Assocation

http://integrateddiabetes.com/

I know they do adults, might be worth a call to see if they know of a similar service for kids. They are all CDEs and the practice is awesome.

I don't think they are able to provide advice virtually, because they need to physically see the patient for liability protection. It is VERY, VERY important for your daughter to visit an endocrinologist at least 2x per year, ideally 4x. Having had it 31 years, I can vouch for this. Any chance you can move closer to a metro area? General practitioners know very little about Type 1 because it's very complicated, so you may need to make that change. At a minimum, she could also see a Certified Diabetes Educator to help fill in.

I know my kidney doc and his department do tele medicine. My hospital services some spread out areas and it's great. A small local clinic does the bp and weight checks, and the rest is through chat and online records. It works well.

I’ve had T1D for almost 31 years and visited endicrinologists 4x/year. Over that time I saw seven different endos. While their hearts were in the right place and they truly wanted to help, when it came to effective advice about day to day blood glucose management, they ranged from fair to poor.



They provided value with interpreting lab results and giving me referrals to other specialists. They did not know how to effectively dose insulin. Their advice was often clouded by a hyper-fear of low BGs.



The most effective advice about managing daily BGs came from reading books, visiting this site, and consulting with Gary Scheiner’s Integrated Diabetes. The virtual visits with Gary via Skype helped me untangle a basal rate profile puzzle. It also set me on a path for making successful future changes myself.



Given your remote setting, I would reach out to Integrated Diabetes for help. In my limited experience, I think endos and many CDEs are ineffective and over-rated. Docs don’t have the time or persistance to give the amount and continuity of advice required. CDEs practicing in an endos office seem to suffer from the same things. It sometimes takes daily or even 2x/day communication for extended periods to wrestle a BG problem to the ground. Most medicos give up long before that.

Thank you everybody! I will call the integrated diabetes guy. I have read his books and he is amazing. I will provide an update when I do it.

I agree with everyone...the endo's I have seen are not helping me with her doses. They do seem afraid, you are right! Also the problem is because the doctors here (in Montana) get fed up and overworked and move all the time, I never get a satisfactory follow through with any appointments we do have. The regular pediatricians in town wash their hands of anything diabetes-related, unless you are in the hospital in DKA and they can cookbook your treatment until discharge. And any calculations I've found to help me with doses (for example the "1500 rule", etc) don't seem to work for kids who haven't gone through puberty. If someone could just help me with a general guideline for pediatric dosing, that's all I would need! In the end, it's up to me to figure it out, I just want some guidance. She's constantly growing. As we all know, each adjustment takes so long to straighten out. I'm losing patience!

I live in the middle of Montana. The current doctor is in Billings 3 hours away and it took over a year to get an appointment with her. On our visit I got the impression from her that she is overwhelmed as she is doing outreach clinics in many of the rural towns in Montana (and maybe Wyoming too?) I have a feeling she'll be quitting, just a feeling. She moved here from the East Coast probably lured here with the thought that Montana will be a lot more relaxed. True (if she were not the only one for hundreds and hundreds of miles of patients). Also, I emailed her an update to our changes we discussed, and it took a month for her to reply. Nothing against her personally, I just think she has too much on her plate.

Previously we were seeing a great Endo from Salt Lake City. It's an 8 hour drive. He would come to Montana every three months and his advice was spot on! Then, he didn't re-negotiate his contract with the outreach place here in Montana, and so he's gone. It seems silly to drive 2 states away for a doctors appointment like this. It's a lot of driving, time off work and school, and we have to stay in a hotel. It's not like I'm taking her to get treatment for a rare cancer, it's just diabetes advise I want.

So, I will look into these options. Also, Spokane is another bigger city nearby for me to look at. They may have more endo doctors there than Billings, MT.

Will respond with solution when I get one!! Thanks for listening!

thank you!

Thank you! This looks very promising. I filled out the consultation form!

Seems like you could benefit from an active T1D parents group that isn't shy about saying what works for their children. Working against growth hormones is an art in itself! I know this group has some serious, helpful, and knowledgable parents. I think you simply need a strong course of peer support!

I politely but whole-heartedly disagree with this view! I was dx'd 23 years and have yet to see an endo! I'm sure if you can find a good one that they're worth visiting, but many MANY of us live far from an official endocrinologist and get along maybe not perfectly, but decently just the same. Additionally, even when I go to my appointments in person, aside from the nurse getting my temperature and BP, there's nothing physical about adjusting rates and ratios, thats all done while staring a computer screen download of my sensor. I might as well not be there!

While I don't believe a good endocrinologist is superfluous by any means, they certainly aren't the 'be all end all' of D-management!

https://m.facebook.com/groups/229094277146547?ref=bookmark&refid=7&_ft_=qid.6097470083570441571%3Amf_story_key.3031455013803090611

Have posted a request for helpful T1 parents groups on a FB group I'm on. Will bring them here as they roll in. This is an international group so the should be a wide variety of group suggestions.

We do have a group here at TuDiabetes for Parents of Kids with T1. The other place I know of for children with diabetes amazingly called ChildrenWithDiabetes. They also run the Friends for Life conferences. Both Tudiabetes and Children With Diabetes are great places to get good advice on things but they won'd be a substitute for a good endo or CDE. I've met Gary Scheiner, he is a really good guy. He actually won the diabetes educator of the year award in 2014 from the AADE. I think you will be in good hands.

Assorted links for parents groups most of these are groups on facebook, some are closed but will always accept requests to join.
Hopefully you will find a group that matches your needs/perspective/point of view.

https://m.facebook.com/groups/203455729740761/
https://m.facebook.com/StephenPonderMD?_rdr
https://m.facebook.com/groups/poke.T1.D/
http://www.insulin-pumpers.org/
https://www.myglu.org/
https://m.facebook.com/groups/Type1DiabeticAthletes/
https://m.facebook.com/groups/PEPsquadDRI/
https://m.facebook.com/pages/Moms-and-Dads-of-type-one-diabetics/285243471492005
https://m.facebook.com/groups/165111356973282/

Also if you are using a dexcom CGM or are curious/interested in cgm or hoping to get one, then you need to check out Nightscout and the CGM in the cloud FB group.

http://www.nightscout.info/ https://m.facebook.com/groups/550000171787910?ref=bookmark

All of the links I posted below were from the CGM in the cloud group files section.
I did not duplicate the sites that had been mentioned in other posts There are many more related to 504 plans for school, hand out an for school nurse, signs of lows /highs etc, etc, etc ,etc Even if you are not currently using a dexcom is a great site to learn on as there is a tremendous amount of very knowledgeable and very motivated and very play it forward folks that are active petty much 24/7. And they have a lot of very useful resources posted in their files section.
I'm an adult onset T1 - aka surprise 60th birthday present and am very greatful for what I have been able to see, do, achieve using the info I found on CGM in the cloud.

Yes! I'm already on that group and saw that you posted that on there today, thank you! We have an animas ping and a dexcom, and I was considering the nightscout or Dexcom share, which is why I joined that group.

If you are already Apple based then share is plug and play for home use other wise nightscout is much cheaper and a lot more portable, and has a lot more options for use.
As an adult have not regretted putting my numbers on my wrist, or on a cheap table for evening ease of viewing.

Gary IS one of us himself. (T1)

Exercise Physiologist by training, was attached to the Joslin Clinic in Philadelphia PA before they closed their doors.

He does have a serious bias for technology ("pump crazy" IMHO). But he might well well be able to help you. Have you tried any of the regional diabetic centers? Guaranteed you are not remotely the only one with this nightmare.

Amazingly, the Integrated Diabetes people already returned my phone call on a SATURDAY! Which is quicker than any doctor has ever done! They set me up with a time for a consult on Monday...I am glad he's pump crazy bc that's stuff I'm not getting help with, just learning on my own from books and blogs. Going to see how this all goes first.

For example:
we recently tested our basal rates, and also our ISF - ISF needed some changes. I:C ratio I'm happy with. So, we adjusted and now are proceeding with life...and today she's riding close to 300 since she woke up and won't budge. Not going any higher but, not going lower...what the hell man? Pump site looks fine. I'm not going to change it every time she's unexplainably high. They don't give you enough supplies to do that. Stupid. I hate diabetes. Unless all those variables I had JUST tested decided to change AGAIN right now after I tested them. Ugh.

Yea it seems really cool. Especially when we go skiing and she's off with ski team and I'm elsewhere on the mountain. Having access to her numbers for that instance would prevent a lot of heartburn on my part! Nightscout seems more portable...I may do it. The parents who buckled down and invented that are saints.