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Never would have dreamed...

Discussion in 'Parents of Children with Type 1' started by tandjjt, Dec 9, 2011.

  1. tandjjt

    tandjjt Approved members

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    Its taken me a few days to even be able to talk about this incident... My ds woke up Sunday with a stomach bug and full blown puking :rolleyes: YUCK

    We went into sick day mode and his BG (which was fine the night before) was up around 350. Grabbed the precision blood ketone meter and was floored to see a 4.1:eek:

    Per guidelines, called endo group for help. Callback got me an unconcerned endo who said not to worry about the ketones, give correction and push fluid (right, fluid pushing to a puking 14 yr old works really well). Was very put off by his lack of concern over the ketones. Luckily we had Zophran on hand and I was able to get the vomiting stopped, give fluids and insulin. Monitored BG and they lowered to around 250 but had used my last blood ketone strip and went back to urine test sticks. Never had I seen those sticks just immediately turn black like those did but I knew ketones in the urine lag 2-4 hours behind blood readings so it would take some time to see a change.

    Several hours later, when the urine sticks were still turning black I called every pharmacy around until I found some more blood ketone strips. Ran and got them and tested - 4.3 :eek:

    Gave shot with correction plus a little extra and gave it 1 more hour (had already changed site, insulin and been doing shots in addition to doubling basals). One hour later blood ketones = 4.5

    I had no doubt we were in big trouble and would land in the ER. Called endo group for help and went ahead and loaded up in the van to head to the ER (40 minutes away). No callback from endo after 25 minutes so I called again. Was transferred to the doc on call that time and was the same one from the morning call. He proceeded to yell at me, talk rudely, not listen, tell me to "forget about" and "quit worrying about" ketones at all - He also informed me of his high ranking title in the group and said to me "it is Sunday night!" I pulled over and burst into tears after that call. Headed home with my mind racing trying to figure out what to do.

    God was truly watching over us - I had put out a facebook status earlier that said we might be headed for the ER... When I got home I thought that I would log into CWD and get some advise but when I opened my laptop, there was a comment from our original endo from dx (who we loved, but had moved away to be closer to her parents) complete with her phone number and she said to call her. I melted down when I heard her sweet voice on the phone. She was floored by what was going on and the reaction of the other endo. She then said "OK, where are we right now", started giving me directions and we talked and texted every 1-2 hours all night long until we got him to a much better place. She told me later that with numbers like he had, he would likely have been admitted to ICU... I am so thankful for that sweet precious angel endo!

    Now about the other one -- don't get me wrong - I love our Endo GROUP and have always got wonderful care from them. This is about 1 doctor who needs to be straightened out. I have a plan of action but wondering what other parents of CWD think - what would you do?
     
  2. Christopher

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    You mean what to do about the rude doctor? Honestly, I doubt he is going to change. I am sure you could write a letter or call his supervisor or something like that, but is it really worth your time and energy? It wouldn't be worth mine. I think a better use of your time would be to tell people here what your old Endo instructed you to do that worked in your situation.

    Also, if it were me and I was already on my way to the ER, I would not have turned around and gone home just because some Dr. was a jerk to me on the phone.

    Not judging at all. It sounds like a horrible situation and you did what you thought was best. I am sorry you had to go thorugh it, but you have an opportunity to turn it into a positive learning experince for the parents here, so I would focus on that and less on the negative Dr.

    Just my 2 cents.
     
  3. StillMamamia

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    I'd be very tempted to write a letter to the hospital direction about the non-chalance (sp?) of the rude doc. Perhaps he'll be informed that his behaviour was out of line, perhaps not, but in any case, it may help improve his manners in the future.

    Glad you had the angel endo finally.
     
  4. Butterfly Betty

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    First, I'm glad you were able to get him better with the help of your old endo. I'd love to know what she told you for future refence.

    Second, I wouldn't have come home if I was on the way to the ER.

    Third, I'd write a letter to your Endo group explaining what happened and that you felt the doctor you dealt with was rude. It may not help, and as Christopher said, it might be a waste of time and effort, but if he sees how his behavior was taken, just maybe it will help the next scared mom who he needs to help.
     
  5. mandapanda1980

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    I just wanted to say I'm glad everything turned out okay! The angels were with you guys :)
     
  6. Becky Stevens mom

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    Oh dear Lord! that must have been so scary for you! Your boy was very sick and very close to being in fullblown DKA:( I cannot even begin to imagine what is wrong with that endo!!!! Not worry about the ketones at all?!?!?!? What is he talking about?!?!? Does he not understand what ketones are or what can happen if a child is ketotic for several hours? Where did he get his liscense to practice? Cracker Jack box maybe?:rolleyes: I am fearful of what could happen to a young CWD who is fairly new to diabetes getting very sick like this and having this moron tell the parents not to worry about high ketones until their child is gravely ill:mad: Im hoping that since your former endo knows the situation she can speak to someone and make sure this doctor takes these situations more seriously.

    So glad that you were able to talk to your former endo and that all is improving now:cwds:
     
  7. VinceysMom

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    The hospital or groups Ombudsman office should be able to help you, I would think. Those are the folks to call if you have complaints, etc.

    I am so sorry this happened to you... So glad all is well again...

    Kathy
     
  8. MommaKat

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    I am so glad you reached your old endo and that you were able to get things straightened out. One thing in particular that really sticks our from the rude endo - It's Sunday night... That he told you not to worry about ketones is not in keeping with standard of care, and that phrase - he should not be a specialist and responsible for taking after hours calls if that's his attitude. Also, given the way on call works, he is also the one who did not return your call after 25 m. Whether it's worth your time and energy to pursue, it should at least be brought to the attention of the endo group as it constitutes unprofessional and unethical behavior on the part of a doc, and he could cause serious harm as a result of his attitude about call on a Sunday night. I'd contact the office manager or ombudsman about the situation to get it documented. Maybe he had a bad night and it will end there, but if not and he continues, then it will ultimately be handled - but only if people report these kinds of run ins. Just my .02
     
  9. JaxDad

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    Wow - that's terrible, so sorry for you. I can "almost" understand the doc saying to not worry about the ketones in the morning. Particularly since you two don't know each other and he may have thought you were new to D-life and were over-reacting at the first site of a ketone. That's not to excuse his rudeness and not listening - which if he had done, would have avoided what may have been his false impression of your experience and knowledge.

    The fact that this went so long, and he's still telling you that and saying "it's Sunday night" sounds more like he just couldn't be bothered and was annoyed to be disturbed on a Sunday - more than once - by you.

    As far as what I would do; in an instance like this, where you are too far to visit first, I would write a very nice, self effacing, almost apologetic letter to the doctor explaining why you were sorry to bother him on Sunday, thanking him for the time he did take to talk with you but that you were unhappy with his advice because you are concerned about other children. I wouldn't bring up that he was rude, just that even with your experience you were worried and needed guidance, and that a different approach by him would be beneficial to you and any other patient in the future and that a new D-caregiver, who took his advice literally and "didn't worry about it", could have ended up with a much different outcome. I would copy the group's director. If he is the group director, then I would copy the hospital chief of staff. If you really want to get their attention, put a CC: to your attorney or, if you don't have one, to Joe Anyone, Esq. at the bottom. While I agree with Christopher that this won't change this doctor's attitude, I never agree with letting incompetence by people with such critical positions go unreported. In essence I feel I have a duty to report to the people who should be performing oversight.

    We had an incident where my son went hypo and a bit lethargic while visiting a friend for the first time, the woman panicked and called 911, then my wife. My wife and the medics arrived at the same time. They refused to give my wife custody of my son because he was at 55 bg and vomited the OJ they gave him. They then transported him to the ER (unlawfully). I won't go on with the whole story but a letter to the director of emergency care, and copy to my attorney friend, resulted in a very cordial meeting with all, a "training refresher" to all the medics over patient rights, and all resultant bills being dismissed. I'm not one to start a battle but I have no problem firing a shot across the bow when that's what's needed to get attention. Then again, I'm from NJ and can see NYC from where I live. LOL
     
  10. Style mom

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    I agree that you could write a letter to the hospital omsbudsperson, but I wouldn't expect it to do any good.

    I do worry a bit about your old, nice endo. She really probably should have told you to continue on to the emergency room. If she knew that your son was sick enough to be in ICU, she really shouldn't have taken on the liability of talking you through his care over the phone, especially since she's no longer his treating physician. Like I said, it was nice of her, but professionally not very wise at all, and really, potentially harmful to your child if things would have gone south quickly.
     
  11. tandjjt

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    No worries on that front - She told me right away that if he didn't respond quickly she wouldn't hesitate to send us on to the ER. After we had made very good process she told me that if she hadn't known me well enough to trust I would do exactly what she said she would not have taken any chances. Also, the fact that I had a blood ketone meter came into play as we could tell fairly quickly if we were making any real progress. She also lectured me about letting the other doctor bully me into coming back home - she reminded me of days when she told me that I should always follow my instinct... even if it was her on the other end of the line.
     
  12. tandjjt

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    Yes - the Sunday night phrase really infuriates me. I didn't realize that we were restricted from being sick or needing help on Sundays...

    I do intend to write a couple of letters. Anyone who would say that to a patient needing help should not be on call.
     
  13. tandjjt

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    Yes guys - ya'll are correct in that I should have just gone on to the ER. I was just caught so off guard by his reaction and it caused me to begin second guessing myself. I was also concerned because our ER is not in the same town as our Endo group and we have no pediatric endo around here. If the ER doc needed any guidance, he would have consulted the "on call endo" from our group who would have been the same guy. I wasn't sure what I was going to do when I got home, but there was no way I would have sat around and done nothing - One of the reasons I thought of CWD was because I knew you all would help me get my head back on straight :)

    I'm happy to share what we did but remember that you should always get guidance from your endo when dealing with ketones... She had me look at his total daily insulin averages (which was around 40) and we added 10% of that to each correction... It was a lot of insulin to push and was scary but it worked... I believe the first correction calculated to require 1.8 or so by the pump - we bumped that into 5.8 - then at the 1.5 hour mark his ketone level had dropped from 4.5 to 2.5... When we hit it again with the same formula, we came down to 1.7 - hit again but only with 2 extra units and came right down to .6. Then went to normal corrections. All that extra insulin and only had 1 low bg later that next morning and it wasn't a bad one at 60.

    I do believe that my son and other children are worth the time and effort to do what I can to bring the matter of how the bad endo treated us to the forefront. It may not help, but at least I did something... It wasn't the fact that he was rude - I certainly don't like rudeness but if he had given me any real help I would have overlooked rude... My problem is that he was unwilling to listen and give help when it was his job to do so - the fact that he threw his title in my face (I believe in an attempt to scare me or shut me up) - went against everything that his own people taught me about ketones and warnings in their official written "sick day guidelines" by telling me to stop worrying about them - and then the Sunday night comment is just the cherry on top :mad:

    What if I hadn't had the good fortune that we just happened to have by getting support elsewhere... What if we were newbies and I had not realized how much trouble we were in... What if other parents and kids suffer because of the same kind of treatment (or non-treatment) by this guy and don't have any other support???? My son and all the other T1D kids out there are CERTAINLY worth a little time and effort on my part. Of course, I know it may not do any good - but doing nothing certainly helps NO ONE... I always make sure to brag on our group for the wonderful care they provide and am well known for sending gifts and treats to show our graditude - I believe in being thankful and showing it... The other side of that is harder for me to deal with but I would go toe to toe with that fellow if it would make any difference whatsoever in making him think twice about his advise and "on call" attitude - I don't care if his title is "MASTER OF THE UNIVERSE" and I certainly would take him on any day of the week, day or night. He will not bully this Mom ever again.

    I absolutely plan to be very professional and address the matter with courtesy, concern and tact but should Mama Bear be called upon then I assure you that her claws are quite sharp, her teeth are long and when it comes to protecting her cubs, she can hold her own... ;) I don't want it to come to that at all (I tend to cry) but I do want to do what I can to hopefully prevent anyone else from the same experience. Writing a letter or two and maybe making a couple of calls is certainly not what I consider to be time and effort consuming...

    I will spend quite a deal of time and effort picking out and planning a very special gift to send to our guardian angel endo :)
     
  14. sarahspins

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    I find it really almost impossible to deal with ketones while sick... it's really not about the risk of DKA, but it sets up a viscous cycle where it's almost impossible for me to self-regulate and stop it, I know I'm dehydrated, it only gets worse with the ketones causing nausea and vomiting and I'd much rather go to the ER for zofran and IV fluids and feel a million times better 3 hours later than to deal with 24-48 hours of misery because of the high ketones. Every time I have chosen not to go to the ER in that situation, I wish I had. I always present myself in the ER with "I'm sick, I'm dehydrated, and I want IV fluids and zofran" and they're usually happy to help. At that point D is really somewhat secondary.

    YMMV on this one, and that first doctor is stupid for not wanting to treat for the ketones.
     
  15. MelStan

    MelStan Member

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    I would complain about the Endo. His response wasn't only rude, but dangerous in my mind. His next patient may not be so lucky.

    I've been quite shocked by how quickly the DKA tragedies have happened, since I've been privy to details :rolleyes::( And not just to teens who have moved away from home, but to kids who's parents are very on to things.

    I'm really glad your son is ok Teresa, no thanks to your own Endo, unfortunately. His reaction disgusts me to be honest.
     
  16. tandjjt

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    We were lucky to have zophran on hand and able to keep drinking. Absolutely ydmv hence the lecture on following our instinct
     

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