Building the Team


#1

My first post. 1 month since my 10yo daughter was diagnosed and sent to PICU with DKA. Have brought A1c from 16 to 9 and feeling great about that and like maybe I can do this. Of course still learning all the impacts of school, parties, illnesses, activities, & emotions but feel like we have a hold on basic management. Currently on Freestyle Libre & MDI with hopes to move to G6 & a pump in January.

So many questions but thought I’d start with some questions about doctors.

We live in a rural area but have a Pediatric Endocrinologist about an hour away. Now that we’re out of the crisis phase, should we be looking further afield in bigger cities for Pedi Endos that are working on the forefront of this disease? People affiliated with University or other teaching/research hospitals?

And should we be establishing relationships with & taking her for baseline appointments with other specialists she may need in the future: Ophthalmology, Neurology, Nephrology, etc, etc. Or do you only see specialists much later on if you begin to see signs of complications?

We’ve just gotten her flu shot and she saw her dentist & primary care doctor about a month before dx. Is it prudent to see them again or simply call and let them know about the dx?

Thanks.
One step at a time.


(Dennis J. Dacey, PwD) #2

Hi @Gemstone, first let me offer a Warm Welcome to TypeOneNation!!!
It sounds to me that you are very well organized and in a very short time since your diagnosis have come to accept her condition - I expect that with your presence and help she will do well.
As far as “specialists” with which you [well, your daughter] should establish a relationship would be a good pediatric endocrinologist who understands TypeOne and an ophthalmologist with retinal experience. At least as important as the specialists mentioned it will be advisable to seek out a local pediatrician who knows that TypeOne treatment protocol - maybe your hospital can help you with this search.
And mentioning ‘hospital’, if / when your daughter needs care be certain to [loudly] stress that she is TypeOne - sad to say in my 60+ years living with diabetes I’ve heard way too many doctors [including an endocrinologist I interviewed] and nurses say “, diabetes is diabetes and we treat them all the same”.
Check out advocacy and information sections in the tabs on the top of this page and on the main JDRF site [JDRF.org]. Be patient with some of the TABS - both sites are in process of being updated and some links may malfunction.

This site is for you - come here to ask any questions, seek information, or just plain vent if you need. The future is bright for your daughter and she can enjoy a long, full and productive life.


(Wendy Spencer) #3

Hello! Kate, my 15 year old, (diagnosed when she was 11) has a paediatric endocrinologist she sees 4 times a year, and a GP with a interest and knowledge of T1. It is important that all the doctors communicate with each other, so that she can get the best possible care. We are very fortunate in the caring people she has looking after all. She has landed up in ER a couple of times, and those have not been good experiences. The ER doctors are not specialists and hadn’t a clue how to treat her. I now prefer to go via the GP if at all possible. She also has her eyes checked by a specialist once a year (they can pick up any signs of complications very early that way.) I found it useful to add a dietician to the list, but that was probably more for me. Best wishes to you and your daughter!


(joe) #4

@Gemstone Hi, good advice above, I would add to the eye specialist recommendation that a retina specialist is a very important member of the team. Under the general heading of Ophthalmology, a retina specialist uses diagnostic imaging and manual scans of, literally, the “back of the eye” to watch for circulation problems. The more common Optometrists is primarily for “front of the eye” stuff - important but IMO, being able to focus is second to being able to see…


(Diane) #5

My daughter was diagnosed 2.5 years ago at age 10. We have moved since her diagnosis but still go to the same hospital she was diagnosed at (2+ hours away) for her quarterly check ups - not because we couldn’t find a good endocrinologist closer but because she likes the staff. So I think it’s all about who you are comfortable with and also how much support they can provide both in person and by phone. The only specialist we have seen is an eye doctor. I haven’t felt the need to do anything else. We found one of the best resources post diagnosis was other T1D families - not for medical advice but for practical tips and just to have the opportunity to talk to other kids and families like you. T1D camps, conferences, support groups, etc. all offer an opportunity for T1D kids to not feel different and for parents to share tips and experiences.


#6

Well we just went to see an ophthalmologist who has retinopathy experience and got a good baseline exam & photos. Seems like that’s probably all we need to do other than regular check-ups, quarterly endo appts and dental, unless some specific issue comes up. Thanks so much for the advice!