Your Endocrinologist, or Ped Endo (as we say); Are You Happy?? Kindly Chime in Today…..You Could Help Others.

pediatric endoAt the risk of being targeted by many of the pediatric endocrinologists out there, I had an interesting inquiry over the weekend and I thought it best to throw it our there for discussion and comments.

The person asked, “How did you pick your child’s endocrinologist?”

Now truth be known, when Kaitlyn was diagnosed and we rushed to the emergency room; we ended up staying with that endocrinologist and his practice almost the entire time until she was an adult.  When Rob was diagnosed, we were comfortable where we were.

That said, the practice always stayed with new and modern technologies.  When something new came out, it was not long before the practice was in touch with the devices and how they worked.  In some cases not as fast as others perhaps, not THAT long behind.

I think it comes down to asking a lot of questions and being educated yourself.  We were fairly versed on this new device called the insulin pump and how it worked in the 1990s.  Not many children had it yet and when we initially asked, it was a wait-a-bit attitude at first.   If I had looked around and there were many children the same age as Kaitlyn (or younger) wearing an insulin pump, I would approached it much differently than we did back when.  Truth is; it was just catching on.  But we did push and we did get it.

My point is that do not be afraid to ask what you think your child needs.  Here, we have been very fortunate.  We are part of a huge practice that somehow finds the time to see us four times a year; and I mean the principles in the practice.  Others have fewer or no choices and I know that.  Some people will drive hours four times a year to get to a practice they feel comfortable dealing with their child’s diabetes.

Sometimes, in the beginning we have no choice; we are at the pediatric endocrinologist when first diagnosed.  But once stable, start making sure you are getting what you need.  If you are happy….stay.  If you are not, look around and talk to others at the nearest practice or at other practices somewhere in your area even if it is a hike to get there.

It is a shame that some must settle for what they have when they are not happy because of proximity; and with others that obstacle is overcome by traveling elsewhere because they are able to do it.  Others cannot because of time, finances, and/or both.

So I ask you; how did you choose your endocrinologist?   Share with others the good, the bad, and how you overcame what ever you overcame to get what you needed.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

9 replies on “Your Endocrinologist, or Ped Endo (as we say); Are You Happy?? Kindly Chime in Today…..You Could Help Others.”

My daughter is now onto her 3rd endo. Our first was too far for a trip on public transport for a single mum, so they transferred us closer to home. Whilst staying with my sister (some 5hours away by public transport) my daughter was admitted to hospital quite ill. Upon discussing her diabetes with the team there, I realised we had not been receiving adequate care at our prior hospital. 1 endo appointment in 2 years, multiple hospital admissions with no realistic treatment provided, hba1c of 13.4% etc). That hospital deemed us a “difficult case”, maybe because I became involved in her care and asked questions, who knows (they even referred us to docs/child protection).
Under our new team it has been wonderful. 3.5 years now of excellent results, fantastic support and a happy mum and daughter. I guess they chose us that day we were admitted, but if it wasn’t for them intervening and stabilising my girl, I doubt she would be here today. Our latest hba1c was 6.1% and we havent had one above 6.7% in over 2.5years.
We live in Australia, but I’m sure everyone around the world can relate to diabetes dad and the daily issues we face 🙂

We were also assigned to a peds endo during the initial hospital stay. No choice of endo. The group was fairly on top of things, although I did have to be ‘one of those a moms’ who pushed hard for the pump. My son was up and running with his within 7 months of diagnosis. Another endo in the group happened to examine him about a year after diagnosis and was shocked when he pulled up my son’s shirt snd saw his site and pump! After reviewing all of his data he said we just changed his mind about allowing kids to be given pumps earlier. Oh yeah! Hope we’ve made life just a little easier for other kids.

We are also with the endo that was assigned via the hospital at diagnosis. I have no issues with the care, but I do have issues with the “human element”. It’s a large practice and I feel my daughter is less a person than a chart. We see a nurse practitioner instead of an endo (endo once a year). I don’t have a big issue with that, it’s just that I don’t think they know my daughter from any of their other hundreds of patients. I wish there was more of a personal touch.

We stayed with the Endo that we were assigned at the Hospital. I love the fact they are available, either thru the Dr for emergency issues, or the Diabetic Nurse for the “newbie” questions (which can be answered thru text, email or phone). Despite how many patients they have they make time at my appointments to really look at this number and answer all my questions. At first we had a 1 month follow-up and every 3 month ever since. We will be approaching our 1 year in May, not sure if it will change after that. Our Dr is a tech savy, and young. I was nervous at first, but she has proven herself.

I shared this also on your fb page also….We stayed with the Endo we had at diagnosis with my son. I had to fight her to get him on the pump. She wanted to put us in a box and since my son did not “want” the pump we should not be on it. He was 6. After much convincing that I knew what I was asking for and that this was best for our situation she said yes. Then I told her what pump we wanted (my son’s choice) and then I had to prove myself to her once again by going to a pump camp because it was not one she favored. I did this and everything up to that point she required of me (us), but I found myself angry and on the defense with her waiting for the next time we would butt heads and she would not listen to me and try to put my son in a box again. Shortly after my son started the pump we switched. We were very happy with our switch. We have since moved…..and have had another diagnosis. My daughter now goes to the same one as my son. I am starting to feel that same feeling again…..we are being put into a box. I was told that they (the practice) does not like to put a new patient on a pump until at least a year after diagnosis. I am also required to take classes to prove to them that I can handle her on a pump even though my son has been on one for 6 years. Anyways I am doing the classes and I have convinced them that we are not your “typical” new diagnosis. (This should have been obvious.) My approach with them is “this is what we want/need.” Doing this has changed our timeline from them considering a pump start around 6-12 months to having the paperwork sent in around 4 months (that is the earliest availability they had for their classes). All this being said I really wish more Endo’s really listened to their patients instead of just going through the motions with them or putting them in a box ESPECIALLY in the very beginning. My advice to anyone whether they are new or not is if you (or your child) are not happy or feel like you are not getting much from your Endo or being heard then SWITCH! If that is not an option then changing your approach can be just as good. The Endo should be a co pilot on this journey not the guide nor the one who ultimately determines our course. That is for our child to determine or for us to determine with their best interest at heart.

I have to chime in on my search for an adult endo. I’ve had quite a few in the last 10 years, possibly 6 or 7. Some changes were made based on insurance or relocation. Finally found one I liked (who happened to save my friends life) and I am willing to wait the 4 or 5 months between appointments instead of the usual 3. My first primary as an adult refused to refer me to an endo, even though both my mom and I pushed for a referral (yes, I brought my mom to my appointments until I was 20). The primary wanted to handle everything herself, but her advice was always ‘take more insulin’ and never anything else.
I also had one that continued to push medications on me and when I refused to just blindly take a medication without knowing it’s risks (specifically to pregnancy, since I plan on having a baby soon) she said I was too fat to be pregnant, could never get pregnant and to just do what she said or she wouldn’t ‘help’ me anymore.
I finally started searching review websites, asking friends for recommendations
and calling endo offices with lots of questions. Took years, but I finally found an endo that fits me.

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