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Mom to newly diagnosed 5 year old

Discussion in 'Introductions' started by MCO222, Dec 11, 2016.

  1. MCO222

    MCO222 Approved members

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    My little 5 year old was just diagnosed a few weeks ago on thanksgiving. It had been difficult to adjust to our new norm but to make things worse she came down with a cold this weekend so her sugars have been high. I'm having a difficult time today, it's tough feeling like you no longer know how best to take care of your baby! I'm feeling overwhelmed by all there is to learn and the added stress and work needed to keep my girl healthy and happy. I know we will get to a place where all of this is routine but tonight it feels like that point is forever away. I'm so proud of my daughter though, she is adapting like a champ! She has already started doing all her own blood tests and knows how to read labels to find the carbs. She is adjusting much better than her mommy is!
     
  2. Sarah Maddie's Mom

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    I think a lot of us can attest to feeling particularly sad, not at dx, but a few weeks or months later when things had calmed down, the adrenaline worn off and the magnitude of the dx had sunk in. There are times when you just have to admit that it's made you sad/mad that it's unfair and not deserved and that you'd give anything to make it go away, but most of the time you just do it and feel less under siege. It's "normal" - probably a bit worse around holidays with family and friends around and the emphasis on food - hang in there, it will get better.
     
    Last edited: Dec 12, 2016
  3. MichelleW

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    Hey MCO,

    Looks like we are in this together with our kids diagnosed around the same time. I probably can't add much other than my empathy and company. Is she already looking and acting healthier than she had been a few weeks ago, even despite the cold? I keep telling myself that my child didn't just get sick but that he's been sick for a long time and that now he's getting better. It's a slight change in frame of reference that helps me. I'm also really excited about the next 5 years. There's so much great research with promising improvements in treatment and management: the blood pressure med to inhibit beta cell loss, the beta cell transplants in a protective mesh, the smaller CGM Dexcom G6 with a tiny m&m size transmitter, the bionic pancreas. So when I feel overwhelmed I think 5 years. I think that when these kids are starting high school, not college, they will have a much easier time of it than they and we are. We are in the hardest part right now: learning, adapting, and using the most basic tools. It's going to get a lot easier.
     
  4. rgcainmd

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    I'm sorry you have found the need to join our club, but I'm happy you found us! There's never a "good" diagnosis day, but Thanksgiving?!?!? NOT FAIR! As Sarah and Michelle have said, it will get better. D is a constant pain in the butt that is always there, but it starts to make less noise as you learn its sneaky little tricks.

    Hang in there and visit here often. The most helpful things I've learned (and continue to learn) were/are here, on tudiabetes.org and from books, especially Gary Scheiner's, Hanas's, and Ponder's.
     
  5. WestOfPecos

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    MCO222, your post urged this long time lurker to join:)

    We would not be parents if we were not filled with dark sadness at the thoughts of our children bearing a burden we cannot take on for them. And I am not sure how quickly it goes away. Like the pain we feel about people dear to us we have lost, it seems, at least for me, to periodically come back, when a evil diabetic sequence visits.

    But, of course, our kids need us, now and for many more years. And there will be moments, when they go through diabetes rejection, puberty, can't-deal-with-it and who knows what else, where they will *really* need us. So, imho, it is pretty important for us to be a rock to them, and to compartmentalize this feeling from them at all costs. In the same way as we need to avoid with them the perennial "the cure is around the corner" line which they quickly don't buy, we need, I think, to avoid giving them any impression that this is a doomsday disease. As many diabetics will tell you, they can have a GREAT life and do anything they want, except flying commercial planes or being in the military - a pretty small restriction when you think of it. The quality of life for T1Ds is so much better than it was 20 years ago, and will be so much better 20 years from now.

    As for our own really bad moments, after the first few months I find that a good cry with my wife behind a closed door typically takes care of several months of accumulated angst:)

    Being overwhelmed on sick days: do you have a good handout for sick days that gives you a simple decision tree? Do you have a 24 hour phone number for a pediatric diabetes line? Are you worried about some specific issue?
     
  6. MCO222

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    My daughter was actually diagnosed before she had ketones. I have an adult step daughter (25) who was diagnosed when she was 14 so I was aware of the symptoms of diabetes so after about a week of my girl soaking her bed overnight my step daughter used her meter to test her when she came over for thanksgiving. She was at 540 so we all went straight to the hospital. Through all of it she has been my normal healthy girl, so far she has not been sick. It definitely helps seeing my step daughter manage type 1 successfully, I am so grateful for that support. I also know that it's not the easiest road to walk. I can't wait to get a cgm and pump to help manage all this, I know how much better that can make things! I also really wish diabetes dogs weren't so darn expensive!
     
  7. MCO222

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    I'm most worried about nighttime lows, I cannot get a cgm soon enough!! She actually has never had ketones, we caught it and got her diagnosed before she developed ketones. I have a great team who I check in with and email logs to weekly and they have provided me with tons of good information I'm just stressing about being able to actually translate all that info to real life and make the right decisions. I'm also trying to find the line between being diligent and being totally intrusive and restricting.for example, when I put my little one to bed tonight she was at 180 and it had been 3 hours since her last insulin dose so I know that logically that i should not worry about her dropping too low tonight and I should just let everyone sleep and not do a middle of the night check but I still don't have enough experience to trust that so will probably end up going in and needlessly waking her up to check her again. We made it though this cold at least so that is making me feel more confident!
     
  8. obtainedmist

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    Welcome to the forum, MCO222,
    I think the best advice I got was to look at this whole thing as a science experiment you are trying to get good at conducting. Lots of trial and adjustment. There is no good or bad...just more information and tools to use in getting better at it! And just when you think you've got it all solved, it changes again due to hormones or exercise or stress! You are going to do great as long as you stay flexible in your thinking and analytical with the information! It's awesome that your daughter is doing as much as she is for her own care. That's truly fantastic! Nothing will take away the worry...but as you've learned there are tools out there that will partner with you to ease the concern (CGM!!!!). And your step-daughter can be a fantastic resource and role model! Have courage...the anxiety of these early days will lessen and you and your daughter will feel empowered with the knowledge that comes with more experience! Remember to take good care of yourself, too! :)
     

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