We just relocated from the Denver area to a "small" town in Illinois. We've been living out of suitcases since the 1st of June. Moved in to our new house last weekend. Though it is great to be back here amongst more support systems with Grandma's, Grandpa's, cousins, Aunts, Uncles, etc.....I'm not so sure about the health care my Sophia is going to receive. Lots of medical here incl SIU school of medicine but we went to visit her new pediatric endocrinologist yesterday and they didn't even check her blood sugar! They checked her A1C but they said "as long as you checked her blood sugar today that's good". Didn't even ask what it was. Couldn't download numbers off of her pump. Dr seemed stuck on the fact that Sophia started the pump 3 mos after dx. I'm considering flying back to Denver every 3 months and continue to see our old endocrinologist. You can often get cheap flights from here to there. But then I think "stop over-reacting! you don't need to be micro managed so what do you care". It was just a weird experience. Should I care? It really bothers me!!!!
Wow, that's just really strange. My son 12, dx-9/12/08. The docs always check blood sugars and A1c usually he is high because he just had breakfast so they also check for blood keytones. I would either ask the doc or some other staff member or change to a new endo. What is the closest big city to you? We moved from Southern Cal to Northern Cal and I considered traveling the 500 miles back for appointments too. But luckily we have a pretty good team here.
Keep searching. No you are NOT over reacting you're a mom and diabetes is tough. If something doesn't seem right or bothers you get answers, if you aren't satisfied keep asking. Of course you should care and you will always care. It bothers me just reading your letter.
Hello Lori,
So sorry to hear about your struggles. Its hard enough for diabetic parents to get through the day relying on our best judgement that we are making the best decisions for our kids. To then, go to the experts, who we rely on for affirmation, and have them question care and not seem adequate in their ability to offer support to us.
I am sure I would feel the same way changing Dr.s and believe you are not the only one who has experienced this disappointment (We have only been to one provider.) If possible, I would call or make an appointment to discuss the provider's expectations. Hoping that makes sense.
That said, we go to Seattle Children't Hospital in Seattle, WA, a renowned provider and resource to diabetic children and their families in the area. The first thing the nurses do after getting all the normal health data (height, weight, bp) is take my son's A1c. They don't take his bs, which at first seemed odd, but I am now comfortable with it. For discussion purposes, I have started taking a bs at the same time as they test for his A1c. And I will often refer to it, when I meet with his Dr.
Transitions can be hard, and I think especially hard for parents of diabetic children. You sound like a fantastic, caring and devoted mother to your daughter and I pray you find some pause to the stress of your new situation.
Good Luck and God Bless,
Kj
Trust your gut instinct. Lose the doctor. There are a lot of doctors that don't work out for our families for a variety of reasons. Don't hesitate to switch back. You are responsible for making sure she has the best care possible. You could even go to Denver every 4 months, it doesn't have to be every 3 months. I have 2 daughters with T1D. We have a group of endo's near us but I hate the way they run the practice so we travel with our 2 girls to get better care that works for us. I like the way a different group handles our kids diabetes care.
WHERE are you in Illinois? I am right by St. Louis so we use St. Louis Children's Hospital Dr. Ana Arbalez. Because you mentioned SIU I am assuming southern Illinois. If so I can tell you that must people with in a 3 hour radius of St. Louis find the trip worthwhile. Let me know.
Ellen
PS - My daughter is 4 now dx at 18months and we started the pump at 3.
Our Endo checks A1C and just asks what the most recent BG was. Unless it is really wacky, one BG reading is not going to change what the Dr says to do.
That being said, we drive 6.5 hours to see our Endo in Oklahoma City. We don't like the ones close to us in Texas, so it is worth the trouble to drive.
Its actually a good idea (I think) to "shop" for doctors. You need to find one that shares or at least supports your style of caring for and parenting a diabetic.
I'd perhaps wait out the next appointment and write out a good list of questions to discuss with the pediatric endo, including what to expect in the way of quarterly testing, annual testing, etc., What is the level of pump knowledge of the team for adjustments to settings, pump education, etc. If no one on the team is certified as a pump educator and the endo's not very familiar with pediatric pump use, is there anyone that they can refer you to, locally?
Is it possible they picked up on a bit of stress from your recent move and figured that as long as the A1c was good, they'd leave everything status quo for the first visit?
My son's pediatric endo care for 8 years was with the chief endocrinologist at the Children's Hospital of Eastern Ontario who is also an associate professor of pediatrics at Ottawa University and his adult care is now with the chief of endocrinology and metabolism at The Ottawa Hospital. In all his years of care, an endo visit never involved checking his BG at the time of visit, although a pump download was routine for pediatric care and a parent requirement to bring a past two week logbook was a must and of course the A1c was monitored every visit.
Before you start flying back and forth to Denver every 3 months, I'd ask a lot of questions first and then as others have said, just go with your instincts. My son was very hesitant about making the transition from pediatric to adult endo care and his apprehension was heightened by the fact that it took The Ottawa Hospital a full year longer than planned to set his initial visit. During the extra year wait, a York University contact, who is T1 himself and a doctor, who is very involved in studies of T1 children participating in sports highly recommended an endo, to us, who practices in Toronto. A drive to Ottawa and then flight to Toronto would likely run us a few hundred dollars each visit, but it would also mean a full day lost, which would be a full, school day. So I was hesitant to go that route without first exploring what we had available closer to home.
Thanks for all your responses! I really appreciate it!!
@ Estpeters, we are up in Springfield and SIU School of Medicine is up here (not that they really have an peds endo team, just making the point that they have A LOT of medical here) and the endo we picked has been here about a year, is the ONLY peds endo here, and she studied in and came from St Louis so I thought she would be great!!! Prior to this endo coming here people did drive to St Louis or Peoria. Which is absolutely "doable". I just thought we were getting lucky and now not so much :(
@ Cheryl, I don't think there is a certified pump educator but I don't know that for sure but we really don't need that. And if we travel to northern or southern Il it's a day lost anyway.
I guess it's just seems weird that they didn't even ask what the blood sugar had been that day and can't even look at trends because they can't download pumps! I know they don't treat based on one blood sugar but basically she was assuming patterns based on the A1C result. We had our discussion over various topics one of which was my pros and cons of the pump (cons being typical of most users) she said "well, maybe you should just go back to shots". Um, NO....Are you kidding me? She said "most of our patients here are on shots". And I came from a place that was advocating the pump on our 1st visit when my head was reeling about Sophia even having diabetes in the first place.
Idk, I'm sure it will work out in the end and I really don't need micro managed by Sophia's endo but it would be nice to feel like if and when I need the help/advice I have someone I can trust and feel confident in their recommendations.
Thanks again for all your responses and I'm going to keep searching :)
We travel to Springfield at least once a year. We are located in Alton IL (about 20 minutes from Children's Hospital). Personally, I would make the trip. I think you would find that the trip would take 2 hours. If you left in the morning and then made a day out of visiting St. Louis it wouldn't be awful, but I know having a doctor in the same town would be preferred. I wish you luck.
Ellen
hi lori, i would absolutey switch, you and sophia need to be feel valued and respected as patients. i wouldn't of been to upset about them not doing a bs in the office but they are clearly behind the times! so disappointing. we just switched practices and are 100% happier, we now go to joslin diab. center in boston, the doctor was really good with jacob. i wouldnt travel back to denver but would drive further for better care i hope you are settling in and happy with your decision. are you orginally from Illinois? my sister lives near joliet probably nowhere near you. best of luck, thank goodness you are not a newby and know what you are doing and really dont need to much direction for now! i'll be thinking of you! amy