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Frustrations...Drama...Meltdowns...Long...

Discussion in 'Parents of Children with Type 1' started by danielsmom, Aug 27, 2011.

  1. Michelle'sMom

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    We drive 7 hrs one way to our endo. There is a clinic a little over an hour away but they weren't a good fit for us.

    As for the info/advice given on this site...if not for what I learned here in the weeks after my dd was dx'd, I truly believe she would've ended up having a severe hypo...or possibly worse. Endos don't always give the best advice.
     
  2. jbmom1b2g

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    I am so sorry to hear what you are going through. Definitly do what your gut is telling you. Heck I wish I had a 45 min drive to our endos office but unfortunatly I dont. We have a 4 hr drive to go see her. Which makes it for a day trip and kids missing school and everything. I live in the middle of nowhere though. The closest town is 4 hrs away
     
  3. Sarah Maddie's Mom

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    Really insightful post. :cwds:
     
  4. nanhsot

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    Personally I think you need to back up and regroup. If this is the endo group you like, it fits into your schedule and you feel like it's a generally good fit, make it work. Make an appointment by yourself with this MD and talk things over.

    I'm hazarding a guess that perhaps this endo wants to help you become more structured, wants to help you find your center and give you a firm foundation upon which to work. There's a lot of changes going on for your family, and that can make finding balance difficult. I'm not sure what's happening in the endo's head, clearly, but I just wonder if perhaps one of the goals is to give you some unbending rules since you are so new to this....to give you a firm foundation to then build upon.

    These are early early days, and you have had lots of growing pains and lots of changes, opinions, etc. I agree with the person who said that perhaps you need to step back a bit. See where you are and stop trying to fix everything at once.

    Life is a journey...not a destination. I feel like you are ready for the destination (and I get that, I do!)...but the journey has a lot to offer as well.

    My advice at this point is to take a step away from all of it. Follow your MD orders but more importantly follow your instincts. I do think it's silly to make an issue of a waffle...if 1 more waffle would satisfy and one less would irritate, just give one more and adjust insulin. Basically I would follow the endo initially and then begin to venture outside their advice.

    Truth is that our kids CAN eat all they want, as long as they match insulin. But further truth is that in the early days it's hard to learn to match insulin, and sometimes the journey is very rocky and difficult and we need a guide to get us there safely. Let this endo be your guide while you continue to learn and experiment in small little chunks. Don't try to bite off the whole thing at once.

    Add in little healthy changes to his diet here and there. Add in little changes to his insulin schedule here and there. Follow what you know and temper it with what you believe.

    Right now I think it's a mistake to change too much, and I think that perhaps you should stop trying to be the master of all and just work on being master of one if that makes sense.

    This disease is overwhelming at best. I'm a year and half out and still feel like a newbie. It's OK not to have all the answers. It's OK to trust your endo. Once you get your sea legs under you, you will discover that you know a lot too, and you'll begin to question your endo and feel confident doing something on your own. For now though, I think you need to just work on taking the next step, doing the next right thing, rather than trying to bite off the whole problem in one bite. Rather, begin the slow chew....little by little you will realize you DO know a lot!

    This endo may end up being an advocate or an enemy. I think it's too soon to know, and I think it's easy from sitting here to second guess. But if it were me I'd just go with the flow. Sure, let him eat another waffle, that's just plain silly. But I wouldn't advise another endo change at this point. You need some consistency to get your solid footing.
     
  5. nanhsot

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    p.s., it's very common in the early days for kids to be STARVING. He may still be recovering lost body mass and storing up for the future. If you have not, I would search here for the threads on free foods, and I'd stock up lots and lots of free foods that he can just eat at will, and remove yourself from that process.
     
  6. cm4kelly

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    Good grief!

    We experienced similar after diagnosis. The dietician told us to have 30 carbs for breakfast, etc., etc. WHAT A STRESS! My then 3 year old when eat and eat and eat - he would cry, I wouldn't give him any more food because he was over his carb limit. It was horrible!

    I finally called and talked with the diabetes educator at the ENDOs office. She said she understood, and to let him have whatever he wanted (the only problem area would be if he had weight issues, which he doesn't).

    Then my world became easy again! I don't really understand this. The other STRANGE thing was the changing of the breakfast

    ratio. My son who is ONLY 4 has a breakfast ratio of 1:12 while the rest of the day is more like 1:24. Many kids need higher breakfast ratios - it took us a LONG time of adjusting overnight basals and breakfast ratios to get this ironed out.

    Does the endo think all of the meal numbers are supposed to be the same? THAT is wierd! And not checking overnight - we'll do it as you see fit or needed.

    I would be concerned that this endo doesn't know what he or she is talking about - not a good start. I doubt I would be comfortable there. Is there another DOC in the group you could "interview?" I interviewed pediatricians before - just an idea.
     
  7. frizzyrazzy

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    wow, that's just so supportive. Telling a new parent esentially "get off the site, we don't want to hear your questions anymore. " Lovely.

    Danielsmom. don't listen to the negativity. You've got a lot of helpful people here.
     
  8. Flutterby

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    I have to agree with Karla.. your endo is a moron. Don't let distance make the choice for you.. we travel at leave 45min, can be longer, depending on traffic.. food battles are NOT something you want to get into with your child.. dealing with diabetes is tough, so much has changed already, add in the food issues, its a disaster in the making.

    Use the ratio they gave you and let him eat what he wants.. you can certaintly figure out what changes needs to be made with ratios.
     
  9. nanhsot

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    While I don't think she should quit posting, I do think she should step back and just regroup. I can so clearly recall those early days and being SO SCARED to make my own decisions. I think it's difficult to come here and get such conflicting information and not know what's right and what's wrong and to feel so overwhelmed.

    This place has saved me, more than once and I am forever grateful. But I do believe that when you are establishing your foundations early on, you really should follow the advice of the person who is examining your child. If that person is a quack, definitely move on, but I think there is danger to begin to experiment and listen to lots of voices early on in this journey. After a while you do develop a bit of a 6th sense and you know when to tweak this or that, but that comes with time and can't really be taught.

    Shirley, don't read this wrong, I think you are doing great and we're all here to support and help answer questions. I think your endo is a nutter for bringing up the weight issue. I don't agree with his limiting carbs and putting him on a set carb schedule, but I think that perhaps he's doing it to help give you guys some structure. In the beginning some structure is a GREAT thing because it really does show you trends and overall pictures that you can then grow off of.

    If your daily carbs fluctuate hugely and you don't yet have the eye for spotting trends, it quickly becomes overwhelming. To have a bit of a set carb amount allows you to easily see the problem areas. Now, I personally wouldn't follow a rigid set amount, I mean, one more waffle, a bit more insulin, eh, no biggie. But I actually can see the logic of the endo wanting to give you structure in order to spot and teach trends easily.

    I hope I'm making sense. I remember one time when I was going nutty in the early days, my CDE advised me to go to the store and buy packaged foods with known carb counts and low fats. She said to just try those for a day or two. It allowed me to easily learn and spot his issues and make changes. It was such a simple concept but worked really well. Learning to carb count + add in fats + fiber + activity + picky eater + stress. Well, anyone can see that's overwhelming! Better, in some ways to add structure to what you can control (foods) so the trends are clear, THEN venture outside of that into the whole world of food.

    Now, if he doesn't bend from that structure after you have spotted trends and made adjustments, yeah, he's definitely not a keeper.
     
  10. danielsmom

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    (((((To you all!)))))
     
  11. bnmom

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    Wow, you poor thing. While you and Daniel are trying to take all this in and adjust, you're also battling to find a good fit with your care team.

    I absolutely agree with others on don't limit his carbs, just dose accordingly. As long as you dose for whatever he's eating, the endo (and someday you!) can figure out if I:C ratios need adjustment. So limiting his food is only going to cause stress for you and your son.

    Have you called your endo or CDE and told them how the limits are causing problems? You may be surprised to find that when you call they now say "oh, well if its causing problems...don't worry about it. Let's do X instead." They might have given those instructions as more of a baseline or desired goal, but may back right off of it when they find out its not working well for you in real life.

    That would be my next step with your new endo...if you call and tell them about a problem...do they fix it, or do they insist you stick with their plan no matter what? If they inflexible with helping make things work for your son, then it's definitely time to try the other doc in their practice or search elsewhere.

    Good luck!
     
  12. miss_behave

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    From this thread and your previous one, I agree with others. Your endo is a moron. I don't even know where to start. I am appalled that he criticised your son's weight and eating habits in his presence. That and the eating restrictions are setting the stage for food issues. I for the life of me cannot understand an Endo who would tell a parent they are testing too much and to not test at night. I feel such Endos have little idea in what it is actually like to live with D. In the real world. Not text books. :rolleyes:
    Many parents drive much more than 40 minutes for a good Endo. Your son is obviously struggling with his diagnosis even more now with this new Endo's ridiculous rules. I urge you to re-consider this new Endo practice.
     
  13. sugarmonkey

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    This is great advice. You may find they're willing to try something else if you tell them you're having problems.

    As far as the carbs go, that would never work with my son. He only eats breakfast on school days because I insist on it, then only a piece of toast (15carbs). He rarely eats lunch, and when he does it's nearly always eggs, so carb free. Then from about 3pm he doesn't stop eating. He'll easily have over 100 carbs for afternoon tea, and dinner is easily 150. There's no way I could get him to eat 60 for all meals. Luckily our endo and dietician understand this is how he is, and are fine with it. He's grown 6 cm in the last six months, so he must be getting enough.
     
  14. Midwestmomma

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    All I am going to add is we drive 2 hours ONE way to see our Endo. There is NOTHING else around that is closer for us. For our family, the 2 hour drive ONE way is worth it...

    Good Peds Endo's aren't always close by...
     
  15. danielsmom

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    I need to toughen up and make sure in the long run I do what is best for my boy and he's nappy!
     
  16. Helenmomofsporty13yearold

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    Shirley knows I have all the time in the world for her and any questions she may have. You twisted my statements and are the one being unsupportive!
     
  17. frizzyrazzy

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    yeah, don't think so.
     
  18. fredntan2

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    Hi and welcome,

    I must admit i just skimmed through the threads

    but just to let you know its totally normal to be pissed off about a dx like this. I myself am totally PISSED off about my breast cancer dx.

    I've got to get this anger out somewhere.
    here's a tip-you know all those extra meters you have recieved? well take them and let him smash them in driveway. Diabetes sucks!
     
  19. Beach bum

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    No, it's ok to be sensitive. You are going through the mourning process. Cry, scream do whatever you want. I remember crying in the grocery store because I thought my kid couldn't eat anything anymore. Turns out that all I needed was a little guidance from those with experience. Some D families in our town heard about our diagnosis and reached out to me.

    Talk to your endo about the challenges you are facing with your son being on a set carb plan and his dietary challenges. He's been through a major change, trying to say you have to eat x amount of carbs, and change how you eat all at once is a lot for him to handle. Baby steps.
     
  20. CAGrandma

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    OK, stop, breathe.
    Remind yourself that this is a very, very complex disease. If only the human body responded like a robot - add this many carbs, this much insulin, and blood glucose numbers will be this. Sure, that never happens. There are just too many variables. And if you change just one thing at one time it is going to affect everything else.
    Remind yourself that this is a marathon, not a sprint. Try not to freak out over one number. The reason you do BG tests is to gather information to make changes - but the real clues are in patterns. And it takes awhile to really learn about diabetes, and how it affects your child - longer than it takes to learn how to count carbs or draw up insulin.
    Try to think of the carb requirements for each meal as goals - not mandates. If he's not hungry he may have less for that meal. If he is really hungry you can try offering a non-carb, but it is rarely worth yelling and fighting.
    The good news is that you are testing! And giving insulin! And your son is allowing that! The most important thing you can do is try to make diabetes treatment a no-fight, no-drama zone.
     

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