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concerns about new endo

Discussion in 'Parents of Children with Type 1' started by steph, May 1, 2012.

  1. steph

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    I am fairly new to T1D as my daughter (age 22 month) was just diagnosed at age 18 months. Her endo left the practice last month, and I have huge concerns about her new endo. At our first meeting she talked about switching us to the pen, gave us a pen, cartridge, and 10 pen needles, but then never called in the script. Even after I called the office twice and called the emergency on call line twice. Thankfully I had syringes at home to use. Then three weeks later she calls in the wrong script. Lately my daughter has been high, so we figured she needed to go back on Lantus (she has been off since late Dec) I called to discuss this, and she said to start her with 4 units. My daughter started off with 1 unit at diagnosis and was having major hypos even with 1/2 unit. I told her I refused to give her that amount, that her last dose was 1/2 unit. And she said "fine, then give her 2 units" If she was sure about her dose, why would she change it? I decided to go with my gut and give her 1 unit, and it dropped her to 55 within 2 hours. Imagine if I gave her 4 units of a 24 hour insulin. We would be pumping her with sugar all night and probably end up in the ER. I feel that this is negligence, and if I had been the type of person that just blindly follows doctors instructions, my daughter may have ended up in a coma. My question is, is this something that I should report or make a complaint about? I am worried that she could hurt someone's child. I am asking to change doctors, but should I do more? Or am I overreacting? Right now I am just making adjustments very slowly and letting her numbers tell me when I have it right. I don't trust the endo, and feel like I am on my own.
     
  2. Amy C.

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    This ought to be reported. I contact the head of the section she is in. I know this office and suggest you work on switching to Dr. P and communicating with the excellent nursing staff for dosage advice..
     
  3. swimmom

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    Agree. The PAs are very good (love Pam). Haven't met the new doc. Good for you for thinking things through and asking questions.
     
  4. TheFormerLantusFiend

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    Minimally, you should let the doctor know why you are switching doctors; I think it would also be appropriate to make a complaint.

    That said, I once had a doctor who gave me an inappropriate dosage of a medication, I got sick, and he didn't call me with the blood results ever- I called a month later out of curiosity, he was out of the office on vacation, and my labs were awful (the nurse I spoke to on the phone was appalled when he read me the labs, the note that said that the doctor had read them, and that the doctor had not followed up or made any other note). I switched doctors but didn't report him.

    Later on, I found out three things. 1) I found out that the doctor is an egotistical guy fond of praising himself in the press- a few weeks ago there was an article about him in which he says he's a great doctor in a local newspaper. 2) He was let go from the clinic at which I saw him, although he is still working full time elsewhere. 3) At the time I saw him, he was receiving chemotherapy for cancer, which I did not know about at the time.

    Anyways, I think an endo who suggests a starting dosage of 4 units of Lantus for a 22 month old is kind of crazy. I mean, normal weight at that age is about 10- 17 kilograms. Normal insulin dose by age and weight for a 22 months old is therefore 3 to 17 units (see this chart). And that's total dose, not Lantus dose.
    All things considered, I don't see how more than 1.5 units as a starting dose of Lantus is reasonable in a child under the age of 2 unless there are other factors you're not telling us about (for instance, if the kid is currently getting 10 units a day in other insulin).
     
  5. steph

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    i think maybe she's just ending her honeymoon phase. she typically gets 1/2-1 unit at breakfast lunch and dinner with uncovered low carb snacks(under 5). Her carb ratios are around 1/40. my husband also pointed out today that her numbers started going up after this last endo visit where the Dr changed her from novolog to humolog. could that have any effect? I thought they were pretty much the same.

    in my city there is only one pediatric endo practice, so i don't want to make waves or be seen as a troublemaker bc i have a long way to go with them. but i also dont think i should allow substandard care to go unaddressed. i am at least switching doctors and letting them know why, but not sure about reporting to the board.
     
  6. steph

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    She gets 1/2 to 1 1/2 units per meal. Her average carb ratio is 1/40. My husband mentioned today that her BS statred going crazy after this last endo visit where the Dr switched her to humolog from novolog. Could that make a difference? I thought they were the same thing. should we try going back to novolog?

    Also in Austin there is only 1 pediatric endo practice, so i dont want to be seen as a troublemaker or anything bc i have a long way to go with them. But i also dont want to allow this to go unaddressed. i will def request a new dr and let them know why, but still not sure about reporting to the board.
     
  7. selketine

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    I'd tell the doctor than the only thing worse than having my toddler dx'd with type 1 is having an unprofessional, uncaring (incompetent fool) for a doctor. Four months into this and to leave you hanging like that - and you're so early in that I can see that you're not really into the period where you feel comfortable making decisions. Worse than that - the doctor was flippant with you. You cannot turn to a professional for the help you should be getting.

    Definitely switch doctors - and tell the practice why you switched.

    My guess on reporting them that nothing will happen because no harm was actually caused - fortunately you are smarter than your doctor.:rolleyes:
     
  8. nanhsot

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    I would definitely complain and let them know why you are requesting a new MD. They have a pretty flaming email on file from me, I specified that a certain MD would never treat my child, ever again and told them why. It was dealt with professionally and I was given a new MD for my next visit.

    As far as how to manage at this point, I mostly deal with the CDE's and the NP's for changes, is that not possible for you at this point? I use the same practice and truly never talk to the MD, ever! We see her at the required times (once a year, maybe twice) and the rest of the time the CDEs are the ones I turn to for changes and input. I email or call with questions and hear back within that day. Only time I have talked to an MD is if it's after hours, and that's been rare, thankfully.

    Don't feel like you are on your own, that's not a good place to be, lean on the experts in the office, they are really good, or have been in my experience. Email them numbers and they'll help you spot trends, etc.

    Good luck, I have no experience dealing with diabetes in so small a child so can't be any more help that way. Good for you for trusting your gut, that's one of the toughest things about this disease I think, the fact that we parents have such a heavy burden day in and day out, but you'll find out very soon that you are your own best resource (well, that and CWD!).
     
  9. MamaBear

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    I agree about switching and letting the practice know why. I would also complain. You pay good money to these people to provide care for your child, you should be receiving the care you pay for, not halfway care that is given if and when the doctor feels like doing so.

    Switch, and complain.
     
  10. caspi

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    I would find out who the managing doctors are in the practice and then send them a letter requesting a new doctor and the reasons for your request. It is important that it be put in writing. I understand your not wanting to report the doctor since this is the only practice in town, however you do need to document what occurred, i.e. a "paper trail", so that it is in black and white and will put the practice on notice that this happened.
     
  11. Becky Stevens mom

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    I absolutely agree with this! Im concerned that your daughter is so young and this endo doesnt seem to be the type that is easily reached and she doesnt seem to be thinking about your daughter's particular case. If she didnt have the chart right in front of her she should have said that she would call back after she had a chance to review her case. Do you also have a CDE? I always prefered calling her in the beginning. She was much more compassionate and understanding and seemed to think things through before giving advice which the endo often didnt
     
  12. Amy C.

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    Steph:

    I sent you a private message with the contact information for the endocrinology administrator for this clinic. You can access your private messages in the upper right corner.
     
  13. steph

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    thanks

    I just wanted to thank everyone for their input. It feels great to know that there are other parents out there I can talk to. I talk to my friends but it takes so long to explain exactly why I am upset, and I think the talk about BS and doses confuse them. I did make a complaint today, and they said they will follow up and get back to me. our next 2 visits are with a NP who I like, so I will keep those and probably switch to Dr P. Cassie was the CDE at our first visit, and we loved her. I don't know if they are assigned to people or if you just get whoever is there, but if it is possible to talk to the same nurse each time I have questions, that would be ideal so that I have a relationship with someone and feel like they at least know who my child is. On a happier note, my daughter has had good numbers today for the first time in a week.:)
     
  14. steph

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    anybody know of a diabetes hotline or something i could call to get advice. i've left messages with the nurse line but no response. and the endo on call all this week is the one who I have been having issues with. i want to scream. i just want someone to help me figure out what i should do about her doses. i'm just a mom. i do the best i know how to do, but i'm not a doctor or a !@#$ pancreas. i want to do the right thing for my baby. :,(
     
  15. nanhsot

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    Do you email them as well? I get a fairly quick turnaround with email, quicker than phone calls usually.

    If not let me know, I will pm you the email to the CDEs.

    It's too late tonight of course, the email won't get read until tomorrow. Anything we can help you with?

    edited to add: I know it seems nutty to rely on a group of internet strangers, but quite frankly I come HERE for advice before I call the MD. When I need the MD/CDE I'm happy to talk to them, but for real life/useful information the parents here are top of the line. If you post your questions here it'll be better than any diabetes hotline in the world. CWD IS a diabetes hotline!
     
    Last edited: May 2, 2012
  16. caspi

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    I agree with this!
     
  17. steph

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    i would love the email to the CDEs. they never even told me I could do that.

    about a month ago at our last endo visit, the dr switched us from novolog to humalog bc they didnt have any novo pens on hand. so i started giving her the humolog. she had already started going high at lunch before that. after the switch, she started going high randomly, then after a week or so all the time. i figured it was just the end of the honeymoon and was time to do lantus bc the correction factor wasn't even doing much of anything. so we started at 1u, then 1/2, now back up to one. But i looked on line and read that novolog is stronger and faster acting in most people... so now i am wondering if she needed lantus at all or if her crazy numbers were just because of the humalog? i switched back to novolog today bc i still had a vial left and gave one unit of lantus last night, and used her old ratios of novolog. she had good numbers all day 104-180. Better than the 50-450 range she has had over the past week. Before her last endo appt, her numbers have been pretty darn close to perfect with a high or low outlier here and there. i suppose I will give her 1u of lantus again tonight and continue with novolog tomorrow and hope for the best. unless anyone has any other suggestions.
     
  18. Deal

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    One recommendation I see repeated on these forums is to move the lantus shot to the morning. The reason is that it does have a bit of a peek 5-7 hours after giving it and can be the cause of lows at night if not careful. We, and many others, find dealing with this potential during the day is easier to manage.


    One thing you can be sure of is that if you ask for advice here, you will get it. There are also so many experienced parents posting here that any questionable advice will be challenged pretty quickly. So if you get a bunch of support for an idea you can be pretty confident in it.
     
  19. steph

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    thanks. does anyone think that the switch in rapid acting could have caused her to start going high? i was also thinking of doing 1/2 u Lantus tonight and none tomorrow and see if she is back to normal on novolog. or because she was in the high 200s several nights does that mean that she def needs a 24 hour insulin? or should i stick with 1u for a while and see what happens. i just hate giving her that extra shot if she doesn't really need it yet. i know she will at some point.
     
  20. Amy C.

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    A lot of time, the saying: if it ain't broke don't fix it applies. I think going back to the Novalog is a good idea. You can contact the CDEs at the office for them to fax a script from Novalog to your pharmacy.

    Humalog and Novolog are very similar in how they function. I don't know if using Humalog caused the highs or not. They may kick in at different rates.

    How often are you testing? Your daughter may be going high with Novolog, but just when you aren't testing.

    Don't panic with the big swings in sugar. It isn't the desirable state to be in, but it isn't life threatening. Treat the lows correctly and keep records. Some of your daughter's highs could have been because you gave her too much food for the low. A young child doesn't need much to get her sugar up.
     

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