So, Jacob had a visit yesterday with his new endo ( his former doc is leaving the practice, she was very friendly but not as proactive or knowledgable as i would like). So we were excited, and hoping for better. Well...obviously she had had a long hard day since our apt was at 4 and we werent seen by the doc until slightly after 6. The nurse spent alittle time with us. She didnt shake our hands or seem particularly happy to meet a new pt, she examinied him and mentioned his higher numbers in the am but we felt these were more related to a recent cold. i had to dig for a suggestion if they continue high. she flatly mentioned his A1c of 8.5 ( his highest yet thanks to omnipod post pod change highs, which we may finally have a handle on by information found here not by support from the endo team) maybe i should of asked more questions.... it just saddens me, hoping someone might reach out to my son and really get him to talk about his diabetes, how is it affecting him, what works for him, what doesnt, engage him, he is the patient! but not to be. well we changed his pod while we were there he was due and we had lots of time to kill, then i took him to Chilli's to cheer him up he was 200 at pod change even with a good bolus after he was 290 at the restaraunt, i boluses pre during and post meal which was small carb wise, half a quesidilla and a small serving of nacho chips and salsa. he was somewhat happy with going out but then felt badly about eating bad, ( a new thing with him he has "skinny genes" i keep telling him and he eats mostly healthy, but he is more concerned about being hungry and making bad food choices lately) this continued with his downward cyle of i'm not good at anything, i'm ordinary i have diabetes... he perked up at home with love from our dog and dad and some good guy tv, but his bs was 420 at 9 pm not unexpected i guess with the pod change, out to eat and upset mood, he had mod. ketones but we got him down with a good bolus and fluids, i dont panic anymore, i'm used to the pod change highs. he was K negative and 280 when he went to bed at 1030. Can the poor boy get a break? I know this was a long rant, just wondering if others have similair endo experience, is it worth looking for another we could go the joslin in boston. i just would like him to at least feel heard, valued and understood by his doctor since he shares this all with no one else but his immediate family. Sorry again for going on and on thanks for listening! amy
Amy how old is Jacob?
While I will say that my sons doctor is exactly what you are looking for with a doctor, I don't think this is always the norm. Unfortunately, the doctors don't always have that patient/doctor relationship you are hoping for. So you could move to a new doctor and still have the same situation. The practice we go to has 5 endos. After my son was diagnosed, the following 5 appointments we scheduled with a different doctor every time. From there we made our decision who was our best fit. I will say that most of the nurses lack that warm fuzzy feeling and its a hit and miss if we get one that I don't feel looks at my son as just a number.
What do you mean about a new thing with him is he has skinny genes?
Sorry your appointment was a let down.....
Hello, jacob is 13, i just meant that everyone in my family and most of my husband's is thin or muscular so he does not need to worry about being overweight, he is concerned about this for some reason, he feels bad about eating alot when he is hungry, i think he might be hitting the puberty hungry all the time and growing stage, so he feels bad for eating alot, he has always been pretty health concious but i can't help but feel it might be related to his D we always encourage him to eat pretty much what he wants and we bolus for it at least he comes out if his funk and isnt always so down i just worry....
I also have a 13 year old. Not sure about you, but in the past 6 months I have noticed major changes with my sons mood. They are right at that age where hormones are kicking in full force....their bodies are changing right before our eyes.....etc......the hunger....oh my.....my skinny boy is keeping up pretty much with my 6'6" husband. I am amazed in the last 6 months how much his appetite has increased.
First off I assume the doctors office also has a dietician on staff. I would request for your next appointment that you also have an appointment with her. She may be able to help a lot with his eating and feeling guilty afterwards like he is eating badly.
I am understanding that he is having difficulty with the whole being a diabetic thing, feeling like he isnt like everyone else? Maybe I took that part wrong. If that is the case, then contact JDRF and see if they have any monthly diabetic coffee house meetings. Typically this is nothing more then a bunch of moms (sometimes dads) who get together and discuss everything from A to Z. The person who organizes the meetings usually tries to have an educator of some sort at the meetings. In talking with her you could ask if anyone brings their kids. My son went with me shortly after he was diagnosed and has 2 good friends now from that meeting.
We dont see my sons doctor every appointment. It alternates between the doctor and the nurse educator. These doctors are busy and sadly the time we want and the time they can offer us are far apart. Usually we have more time on the appointments with the nurse educator.
I would RUN to a different doctor - diabetes is hard enough without having to deal with a disinterested doctor, both for you and your son. Maybe she had had a long hard day, but that is no excuse.
Our endo team includes a nutritionist and social worker to deal with some of the other areas of diabetes management, so the doctor can focus on the nuts and bolts of the numbers. That said, he always engages our sons and works very hard to connect with them.
We are on the pod too, and have the post change highs, but not as dramatic as what you see. Our kids bolus a tiny bit before they change the pod, and that seems to help.
Take care and hang in there.
So sorry your experience yesterday was bad. I don't think you are expecting too much, but I also think the type of endo that you are looking for is not the norm. From my experience (and I hope this is not most people's experience) many doctors are mainly focused on the numbers. If he is having difficulties that the endo is not addressing I think it is a good time to look for a new endo. I wonder if the clinic has a mental health professional they could refer you to that has experience with children with diabetes. They would be able able to devote more time to your concerns while you are searching for a new endo.
So sorry your visit went this way. With so much diabetes these days, I think the doctors are also overwhelmed. We see one of the best specialists and Diabetes researchers in Dallas who doesn't even take diabetes patients anymore - I only got my son in because I go to him for thyroid problems - and he only took me because I would be an easier patient. And, I have been on the same dose of meds since I first started seeing him and never in danger or crisis - just tired.
We wait hours to see him taking Greg out of school for half days at a time. He really tries to stay on schedule but I know that they are constantly adding in patients that are in crisis. He also has patients in the nearby hospital that he sees as needed. He is a good doctor - even coming to the office on Saturday and Sunday during my son's clinical trial because he could tell that my son would probably have a reaction by his increasing numbers. We usually get 15 minutes of his attention although if he is running late and we have no major issues, it is sometimes only 10 minutes.
With all that being said, he has tried to define roles in his practice. We see him or his PA for bloodwork and check up and general mood. After bloodwork and numbers are back, we see a Certified Diabetes Educator who reviews all of my sons logs for the period looking for highs, lows, problems areas and trends. She is great - always on time and really knows how to adjust his pump. She also spends a lot of time (almost an hour) addressing any social or logistical issues he is having with Diabetes at school, his sports regime, nutrition options, the pump, etc. Since he is older she has even started talking to him about alcohol when she could see his numbers drop after a party he attended - She wanted him to know that alcohol though it has carbs will lower your BS. We thank God for her - she has made such a difference in his care.
She is the one that we take the specific issues or situations to and we can even call her on issues between appointments if something comes up. May be what you really need is a CDE in addition to the Endo ?
sounds like you guys have a great team, so happy for you. i've decided we are switching, thanks for your input! amy
I am sorry about the dissapointing appointment. Does your endo only see diabetic kids? or do they see all ages? there is a huge difference when treating kids, and not all endos are good at it. It is important to be somewhere that you feel understood and heard.
My daughter also just had her first post pump A1C, and she was 8.3. she was the only one shocked, her endo and i both were thrilled that it wasn't any higher with all the changes she had happen the last 3 months (her honeymoon also ended and her insulin needs quadrupled in the last 3 months). I know an 8.5 doesnt feel like anything to celebrate, but it really isn't an awful A1C, especially during periods of lots of change.
One trick we learned for pod changes, is leave the old one on for about a half an hour after starting the new one, there is often still insulin in the canula, and leaving it on helps to ensure that all the insulin gets a chance to be absorbed. it is a pain to be wearing 2 pods for a bit (my daughter has actually forgotten to take it off for a whole day), but it does help keep the post change spikes from happening.
How long has your son had D? Dont forget that D kids go through various phases of grief in relation to their disease, it is normal for them to go through periods of anger, denial, depression and acceptance, and they may repeat every once in a while. As long as they are progressing through the stages and not getting stuck, then it is normal.
Is Jacob involved in any extracurricular activities? things that he is good at where he can feel like his D doesnt define him?
thanks so much for your concern, jacob was diag. 3 years ago, i knew his A1c was going to be in the 8's so i really wasnt devistated, it was just the apathy by the md that really bugged me, he goes to a pedi endo, i really do think i am going to bring him to Joslin we are lucky to live near boston, i was just dragging my feet thinking i'm his best asset in this anyway, but i really do feel we will get better care there. currently he is not involved with activities but is super excited to start at the local trade high school next year ( he wants to do drafting and be a civil engineer) and get more involved, he has been working out more at home and is ussually a pretty happy kid just has his down days, he is very happy today so that helps! thanks for the pointer on leaving the pod on for abit after putting a new one on, i'll see if i can convince him, receently we had done .5 pre and 1.5-2.0 post it worked pretty well until yesterday which was just a fiasco all around. so nice to hear others stories and support thanks again! amy
:( Sorry you had a bad experience. I don't expect much from our pediatric endo and I often see a different person (PA or Nurse Prac) each visit. We did see Sophia's actual "assigned" endo this last visit and it was the usual (as it is with the others). Circle some numbers on the pump log print outs, focus on a couple highs and lows but don't mention there was 3 months of pretty good numbers, RX refills, and out the door. And this is at the Barbara Davis Center. I was expecting a lot from them but they are experts at getting the newly diagnosed up and running. From that point I knew I had to educate myself. We are in the process of setting up with a new pediatric endo for our move to the midwest and that has been a nightmare so far.
Have you thought about sending him to camp? Sophia isn't old enough yet but that is something I am going to look in to when she is. Maybe that would help him out a bunch. Sophia doesn't dwell on it much but she's only 6 and her mind is busy with rainbows and unicorns. However, when she was first diagnosed she was having a horrible time with the shots and she saw the social worker at the endo's office to talk about her feelings, anxiety, etc and that helped her a lot.
BTW, we are having crazy numbers right now too and I think we have a defective box of pods. Seriously. One has failed on wear and one with priming not to mention the others that just don't seem to be working (HELLO!! Is there anybody in there?)!!! Took a pod out of a different box for the change this morning and working like a charm.....
Hi lori, sorry your endo experience hasnt been much different, honestly why do people go into pediatrics if they don't have the heart for it, ( i work for a cardiology group and the docs put 100% into all their pt's, esp the female docs, even the crazy patients) these are children with a serious condition. jacob is not a camp kind of kid, he really just wants to deal with it and forget it, we talked yesterday about how being on tudiabetes has helped me, i know anna banana would love to chat with him, have you come across her she is an awsome kid, but he is not there yet. i told him i respect him and know him very well and i know where he is at and i accept that ... what more can i do, he knows i've got his back so that helps, so sorry about your bad pod strech, we had to do that recently to, go to a new box grrrrhhh omnipod love it/ hate it hoping for better days for you two! amy