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New state, new rules?

Discussion in 'Parents of Children with Type 1' started by Jennifer126, Sep 17, 2013.

  1. Jennifer126

    Jennifer126 Approved members

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    The past few months have been hectic. Since diagnosis so much has gone on in our lives.... Unfortunately I still feel Joe's numbers are all over the place because they are.... In August we moved from NJ to AR. Hubby's Job. We moved at the 6 month mark and couldn't get in to our NJ endo before we left.... then we needed to see a PCP here to get them to do the referral to the endo's office..... not for insurance reasons, just because it's the way they do it. Since we are new to the office we were only able to get an appointment on the first Friday of the month and we had to go to a 9:00 am class (2.5 hours long). If we missed the class we would lose the appointment. The appointment was at 1:30 later that day. The whole process of just getting there was crazy. We arrived here in AR on 8/11 our pediatrician appointment was on 8/14, then it was up to them to make the appointment so I ended up having to call several times to get them to do it for me so I wouldn't miss this month's appointments!! It was so stressful to be in someone else's hands with no control at all! The class was useless.... We were just diagnosed in January! There wasn't much we didn't know already. They said it was so we could learn the way they handle things here..... which are different! First scare is that if we ever use the glucagon it's not an instant trip to the ER! They said once he is up and about that he is fine and there is no need to be seen. I haven't been in that situation and hopefully I won't but it's scary to think there is no safety net when things get rough. They run things a bit lower here but I knew that was coming anyway since it would have been the same in NJ. The last change is that the only access to the Nurses is during regular business hours!!!! I had my nurse?s cell phone and we would text if there was an issue!! Now I know why people come on here late at night with questions! :)
    The only change the Dr made was to his basil.... we raised it and she explained that the liver is a stupid organ and basically right now we are probably fighting it and that is why we have such swings in his numbers. We are adjusting to the heat here as well. We have seen his numbers go down but not enough.... he only dropped a fraction on his A1C.
    I know there are various opinions on the numbers being high but the original plan was to slowly get us lower and lower so as not to end up in the hospital treating lows.... so I am comfortable with higher numbers. (Low 200's, high 100's) I hate that my son doesn't feel anything and can't help out.... it's frustrating and scary. Now I am trying to be comfortable going back to sleep and leaving him at a 120 or lower... so far so good and he hasn't been lower than maybe 69 when we got up in the morning. I know I have to get used to seeing these low numbers. My fear is that most of the time in the past when I would catch a low it wasn't hanging out there... it was on the move in the wrong direction!
    Anyway, I think I strayed a bit but I have so much going on and not many places to talk about this part of my life.
     
  2. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    If it makes you feel any better, I have never been instructed to go to the ER post glucagon. Perhaps if there was a stomach virus and dehydration involved but not otherwise.

    I imagine that Drs sometimes start out new patient relationships from a sort of cynical perspective. They don't know you, they don't know if you are competent so they put you through their "system". Not nice, but not insane either.

    If you think you're going to get less support than you are accustomed to them make sure they give you everything you need to feel safe ie in the event of a hospitalization, where to go, who to call, print out of their sick day plan etc etc.

    You're most likely feeling sort of hyper-sensitive with the stress of the move. :cwds:
     
  3. Beach bum

    Beach bum Approved members

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    I can only imagine how stressful a new move, new school and fairly new to diabetes could be!

    If it helps, we were told only to go to the ER if we used glucagon and she couldn't recover from the low (ie. she came to but BG's were still low), if she had a stomach bug or other illness, or she came to but was incoherent. Obviously, use your own instincts, don't let anyone's rules deter you from seeking care for your child if you feel they need help.

    I'd be frustrated to having to go through their program, especially when you have so much on your plate. But, they probably have seen some doozies over the years and need to make sure that you are capable of providing a certain level of care for your child. I'd ask your former practice to send your files over and along with it a note from the nurse or endo giving background info on your care plan with them.

    If you feel that you aren't going to have the same tools that the previous practice provided, I'd make sure that I have every piece of info I needed in the event of an emergency (ie. after hours number, emergency protocol). I'd also ask if it's acceptable to contact them via email. The only time I ever contact our practice via phone is if it's an emergency where I cannot for the life of me get BG's down and she is pushing ketones and we are possibly looking at an ER visit. Otherwise if I need to run something by our nurse, I find email is best. I can upload our meter/pump readings and have her access them, I can ask a series of questions and she can look at them and think about it and get back to me with a plan of attack. But, if they aren't keen on that, then I'd find out the best way to contact them for important, yet general questions (ie. ratio or dosing changes) that need to be answered in a timely fashion.

    Best of luck!
     
  4. momoftwingirls

    momoftwingirls Approved members

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    I know how stressful it's to move to a new state and on top of that deal with a new endo. I really didn't love our new endo team but I asked them tons of questions and asked for the emergency contacts and what I have to do in case I have to go to the ER. We have a class next month they said we have to learn the way they do things. We are 7 month post diagnosis and couple month a go we got cgm the dexcom and it has made life so much easier. I don't know if you have one but you should look into it. It doesn't fix everything but it catches all the lowes dd has and I am able to correct before she gets too low. Good luck!
     
  5. Jennifer126

    Jennifer126 Approved members

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    Thank you all!

    I think I am just overwhelmed with the diabetes and the move in general. I just got off the phone with the nurse since I had sent the updates from his pump to them last night and they emailed me back the basil changes they want me to make... I am just so confused all the time with this and I am tired of the constant thinking!!!! Probably because most of the time I am wrong! LOL I think they are pretty good though, just different. We are working on his basils now to get that tightened up and then maybe, just maybe we can tighten up the rest.
     
  6. Mwills27

    Mwills27 Approved members

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    I completely feel your pain. I just made a move across Canada with my 10-year old son as my co-pilot. We're just over 2 years into his dx. Just trying to find a new doctor is hard enough, but getting used to all the differences in how they manage things is really rough. Getting set up in a new school and training everyone is also a Herculean feat. I know all the worries behind getting this all done and what if it doesn't work out and what if something goes wrong.

    But you know what? In the end it seems to have worked out for you. It did for us too. So, I guess we're lucky, when you look at it. It could be so much worse.:)
     
  7. Beach bum

    Beach bum Approved members

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    Well, this is a good thing. You emailed them last night and they got back to you via email in a fairly timely manner. The fact that they want to use email is a good sign!
     

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