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So here we are...

Discussion in 'Introductions' started by njswede, Feb 9, 2015.

  1. njswede

    njswede Approved members

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    Hi!

    It feels like a year ago, but it's actually only about 10 days ago my 7 yo son got diagnosed with Type 1. We had him checked out for a bedwetting issue and we didn't think much was going to come out of that. I was even away on a business trip and let my wife handle it. After all, a little bedwetting isn't the end of the world, right? Well, they found elevated levels of sugar in his urine and off to the ER I went. By the time I got home from my trip, he was already admitted to the Children's Inpatient Unit.

    Of course this was a HUGE chock! Other than the bedwetting, we haven't had any real health issues with him. And maybe the bedwetting was a blessing in disguse. It allowed to catch it early without the initial DKA scare and such.

    Now the good news is that our little guy is a trooper. He doesn't mind the constant pricking and injecting (so far at least) and he understands that we need to change our routines a bit. I walked him through the science behind what's going on (at a level suitable for a 7 yo) and he seems to get it. The other good news is that my wife and I have always been a strong team when it comes to dealing with challenges.

    Actually, my main concern is how smoothly things have been going. OK, the carb counting and constant pricking is annoying. OK, the fact that it's going to be a lot harder to do playdates and birthday parties is a bummer. OK, it sucks to wake up at 4am and check him. OK, we've had some pretty scary lows (how does a 23 reading sound?), but we've been able to handle it so far.

    We're probably in a serious honeymoon phase. So because things have been going fairly smoothly so far, I'm asking myself "When will the proverbial crap hit the fan?". Does that happen when the honeymoon is over? When he's a teenager?

    I think we're also helped by having a great team at our disposal. But I've noticed that they dodge the question of "OK, so what's next for us?".

    Therefore, lay it on me! I can handle it! What's next for us? Why am I feeling like I'm on top of this when you're supposed to be depressed and feel hopeless? When will the big pile of crap be dumped upon us?

    Thanks!
     
  2. obtainedmist

    obtainedmist Approved members

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    It's okay to feel like you're on top of it! It's great that you are carb counting already and not on a sliding scale. You sound like you have a great team working with you and that's a huge benefit and relief. I'm not going to gloom and doom you at all! :) You just need to be flexible when things change a bit or when you have the same exact meal with different results. It going to happen. There is an intuitive part to managing this disease and everyone's experience is a bit different. Eventually, you'll become the expert on how to treat your kid! One great thing about this board is that if you ask a question about a specific situation, chances are there is a parent out there that's dealt with it! That's comforting and a great resource...so use it! Also, don't be afraid to call your endo with questions...whenever!

    I can tell you what was next for us...first we switched to insulin pens, then we pushed for a pump as soon as we realized that those morning numbers weren't going to go down on a safe dose of Lantus. Then we spent around 3 months scratching our heads trying to trouble shoot pumping until we got our technique down (mostly how to insert an infusion set and how often to switch it out...2 days worked best for us!). Then she moved across the country to go to college and she hasn't missed a beat yet! The crap doesn't have to hit the fan! T1D will be a passenger in the car, but it doesn't have to always pick the radio station! Your son will learn to be more organized and will be able to do practically anything he did before with just a bit more preparation in advance.

    Keep up that positive attitude! It will serve your son well!
     
  3. sszyszkiewicz

    sszyszkiewicz Approved members

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    Welcome njswede.

    First of all make sure you tell your team about the 23, when it happened, and the circumstances prior to it. You dont want to see those all that often, if ever.

    Its great that you are adjusting well, and its also great that your son did not have to deal with DKA.

    Hopefully you will have a long and strong honeymoon. Use this time to learn as much as you can. When the honeymoon is over, the training wheels come off, and the proverbial crap hits the fan. The crap in this case are hard to control numbers.

    It is not a sprint. It is a very long race. Every day will be something different.

    if you can look into a CGM (dexcom specifically). It completely changes your relationship with Mr T1D. It will make the game you play with Mr T1D quite a bit more fair.

    Are you in Nj? Do you go to CHOP?

    If you ask questions here people will provide tons of useful practical advice.
     
    Last edited: Feb 9, 2015
  4. Sarah Maddie's Mom

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    My kid is 17, dx'd at 4. I've come to view Type 1 as the obnoxious house guest who just won't leave. Yes, he's a pain in the ass but eventually you just corral him in the dark corner of the living room on the ugly couch and feed him a sandwich now and again. You really just get on with it. Yes, it's more complicated and yes, things take more planning but eventually it becomes routine and you just live your life and let your kid live their's and the D stuff gets done without hogging center stage :)
     
    Last edited: Feb 10, 2015
  5. njswede

    njswede Approved members

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    Oh yeah, the endocrinologist was all over the 23 and ended up cutting the lantus dose in half. It's much better now. He's hovering around 100 with a dip into the mid to high 60s just before lunch. I heard someone say the "honeymoon phase" is a bit of a misnomer, since the insulin doses are so tiny that it's very hard to get it just right and easy to overdose and get lows. But our team seems to be fine with where we are right now. We're beefing up his morning snack a little to try to carry him over the late morning low.

    No, we're not going to CHOP (I know people who do). When he went to the ER, he ended up at Morristown Memorial/Goryeb. They'ver been great so far and we live not far from the hospital. We tried to get him back to school right away and it's been working out well so far. Turns out his teacher has a T1D kid, so she knows the drill.

    And, oh by the way, another thing I noticed is a change in sleep patterns. He used to be a very light sleeper and had problems falling asleep. Now, since we started treating him, he sleeps like a rock. And no, he's not unconscious from hypo. :) Is this change in sleep patterns something you've noticed or is it just coincidence?

    The main pain point is really all the well-meaning people making idiotic comments. Here are a few:

    "You need to see this naturopathic homeopath holistic doctor! He can cure it".
    "Oh noooooooooooooo!!!! What kind of life is he going to have??? Pooooor thiiiiiing!!!!" (From my MIL who probably thinks the diabetes care of today is the same it was in the 50s)
    And my personal favorite: "Diabetes? What? He's not even obese!" (Yup, someone actually said that).

    But I guess idiotic comments are just another thing you'll have to live with?
     
  6. namegirl

    namegirl Approved members

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    Honestly we felt similar to you when our son was diagnosed (dx at 20 months, now 5 years old). I might have had a brief cry on the day of diagnosis, but other than that we have had a very "roll with the punches" attitude. We caught it early and never were inpatient at any time--just went to the ped who sent us to an endo's office and came home with insulin and needles. He never had a honeymoon. There's been many MANY ups and downs over the years but we just ask for help, make the necessary changes, and move on.

    There's nothing wrong with having a more emotional response or feeling somewhat traumatized by the diagnosis, but that doesn't happen to all of us. Sounds like you're doing great!
     
  7. mamattorney

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    I also felt similar to you when my daughter was diagnosed. In fact I think I asked a similar question in my introduction thread "am I too relaxed?" It probably has a lot to do with your child's reaction. If you've got an accepting child, then doing what needs to be done feels like an inconvenience and time suck more than anything else. If you have a child who is very upset and emotional, it likely adds a tremendous stress on the parents who know that, tears or not, these things need to be done.

    I say, keep doing what you are doing. One day and one fingerstick at a time!
     
  8. aprilodell

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    My son never could fall asleep and would stay up super late or sometimes all night long. Now at 930, he is super ready for bed and is out like a light.
     
  9. aprilodell

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    I also have just taken it with stride, but I think a lot of it has to do with my relaxed child. He has always just gone with the flow and that is how he is now.
     
  10. susanlindstrom16

    susanlindstrom16 Approved members

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    Sorry about the dx, but sounds like you are taking it in stride and that is a good thing! Diabetes is so variable, no need to get worried about things that may or may not even be an issue for you guys.

    And yes, you just have to live with the idiotic comments :smile:
     
  11. njswede

    njswede Approved members

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    Yeah, I think a lot of it is because he's such a cool kid and just goes with it.

    The other thing is that I'm hopeful, no strike that, I'm convinced that by the time he starts college, diabetes care will look a lot different than it does now. The doctors keep telling us that there is progress made on a daily basis. Can't wait for the fully automatic pumps ("artificial pancreas")! We've been told to stay on the pen for a few more months and transition to a pump and maybe a CGM.

    BTW, what's your policy on telling the kid's peers? We asked him if he wanted to keep it a secret and he said no and actually went ahead and told his friends. I figured the more people who know and can alert someone if they notice something weird, the better. His friends seem cool with it so far.
     
  12. obtainedmist

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    This is so true! Try not to anticipate the problems, they don't have to be part of your reality just because someone else has gone through it. Just be ready to do a lot of trial and adjustment when issues come up!

    I don't worry about the idiotic comments that come from ignorance. What gets me is when a nurse at the ophthalmologist's office acts as though she knows more about T1D than our daughter! Nurse: "Do you get blurry vision when you are high" Daughter: "No" Nurse: "You will!" Fortunately, our daughter is savvy enough to do an inner eye-roll and dismiss the comment. The saying "Your Diabetes May Vary" is ingrained in her!
     
  13. BarbDwyer

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    Hi :)

    My son is only 8mos in to his diagnosis. We are just beginning to see some of the crazy or hard to control numbers. Since it is still so new in our house I don't have any specific diabetes advice but my life advice is to not borrow trouble. :) If things are rolling along smoothly today - than that is a thing to be thankful for! Perhaps your family is blessed with personalities that roll with the punches and that will be a great asset.

    My son is 13yo. Any of our 'stress' is mostly teenager related. It is a fine line sometimes between giving him autonomy and imposing parental authority. Of all the things he has to do for the T1D care - carrying a bag of supplies is at the top of the list of things he hates. For real. All negatives of T1D seemed to be wrapped up in a needing to carry supplies.
     
  14. njswede

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    Just got back from the endo and we got great grades! His A1C is already down to 6.3%, which, if I understand it correctly, would be a respectable number even for someone without diabetes. We were told we're doing everything right and should just continue what we're doing. They even told me he doesn't have to be tested at 4AM unless he did strenuous activity the day before. Yay!!!

    Having a team who gives useful feedback and gently corrects when you're going astray and praises you when you got it right is so reassuring! Go Morristown Memorial! :)

    Yes, I understand we're honeymooning newbies and the real challenge is yet to come, but it's great to know we're no the right track at least.
     
  15. sszyszkiewicz

    sszyszkiewicz Approved members

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    keep up the good work!! That is great news. I bet he feels so much better.

    What little boy doesn't have a strenuous day? :) They are CONSTANTLY moving.

    There are as many different strategies/philosophies for checking. From my personal experience, I would just say that after i started using the CGM on my DS, i was stunned at how often he could drop below 70 and I would have missed it with a single check once he went to sleep.

    Logically speaking, would you go 8 hours during the day without checking? Mr T1D does not care it is the middle of the night, the scoundrel that he is.

    One thing I often noticed in my DS is that about 4 hours after his Lantus the numbers trend down/drop. We administer Lantus at night (10PM) so I have gotten used to the fact that he sometimes does get these drops a few hours later, but then evens out. So I am not sure when you dose lantus, but it does have a bit of a peak a few hours (3-5?) after the dose. something to consider as you are deciding if/when to check at night.

    While in the neighborhood, generally speaking, the short acting insulin is typically "finished" about 4 hours after the dose. So if you dose at 8 that insulin has done its job by 12. One of the things I hate most is seeing my son dose 5 units at 10PM because he is having a snack (he is 12, and is a bottomless pit these days). that means I am on guard until at least 2. The CGM helps tremendously in this regard Just realize that relatively tiny amounts of insulin can make big differences, particularly for little guys.
     
  16. Christopher

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    I understand you are new to this disease, but one thing I would caution you about is seeing the A1c (or any number really) as a grade. This is not a test that you or your child have to "pass" everytime you go to the Endo (although some Endo's will make you feel that way). The A1c number is not "good" or "bad". It is simply a 3 month average of his bg numbers. His A1c is going to go up, go down and all around over the course of his life. Use it as a tool to help refine your management of his diabetes. Try your best not to attach any emotion to it. MUCH easier said than done, I am speaking from experience because I used to do the same thing in the begining.

    I am not sure who told you this, but 6.3 is not a "respectable" number for someone without diabetes. It would be a cause for concern for someone without diabetes if they had a 6.5 on two seperate A1c results. A "normal" A1c is in the 4.0 or 5.0 range.

    As far as testing at night, each parent must decide what makes sense for them and their child. I believe testing at night is very important and I have been doing it every night, multiple times a night for the past 7+ years. I have caught hundreds of high and low numbers that I was able to deal with overnight. Please remember that "strenuous activity" is not the only factor that effects overnight numbers. Food, illness, hormones, long acting insulin effects, etc all play a part.

    Good luck.
     
    Last edited: Feb 11, 2015
  17. njswede

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    Thanks! Yeah, I looked up the A1C-range after I wrote my post and I realized I was a bit off on it "being respectable". That being said, it's within the range of what the doctors told us to stay within.

    I also understand that A1C is not a grade. It gives you a general idea whether you're on track, but it's not part of a contest who can get the best number. I get that.

    About the 4am test, I think I may reconsider it based on what you guys are saying. He's been very stable during the night. Only drops a few points between midnight and 4am. But then again, I think it wouldn't hurt to keep testing him for a while just to make sure that the stability of his numbers last. The last thing I want is a crash during the night!

    I realize that because we've been doing well for the first two weeks (give or take), it doesn't mean that we're home safe. What it does mean to me, however, is that we've been successful in the initial change of routines and habits. It also help us gain confidence that we can learn how to handle this.
     
  18. BarbDwyer

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    Yay for a good appointment. I think it is OK to celebrate that first good appointment. It felt empowering to us - to know that we could do it. My son's A1C in the hospital was 11.something and the first time they checked it at the clinic it was 6.something. We were like - 'Yes, we can do this!' A little momentum was a nice thing.
     
  19. DavidN

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    Welcome. I'm sorry you've joined our rotten club. It sounds like you, your son and your family are doing great.

    For us, the progression was a bit like what Phil went through in the movie Groundhog Day.
    - Shock. What the hell just happened?
    - Sadness. My son's world is permanently altered for the worse.
    - Hope. Hey this isn't so terrible. And the bionic pancreas is right around the corner.
    - More sadness and anger. Yesterday we did great. But there's tomorrow. And the next day, and the next day, and the next day ... Jesus!
    - Acceptance. It is what it is. Move on. (about the 2 year mark for me).

    Through all of the above, I've always had moments of complete joy. My son is healthy and he can do anything he wants to do. I feel very lucky.

    My son is almost 12 and we're getting a taste of teen rebellion. He wants his freedom and has little respect for the connection between high BGs and longer term consequences. But at age 12 this is not shocking. I don't see an easy fix here. All I can do is stay involved and help shoulder the load as much as I can.

    If you have questions about anything, fire away. Lots of smart, helpful veterans around.

    David
     
  20. njswede

    njswede Approved members

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    Thanks! I'm feeling we're doing all the phases at the same time here. But the fact that my son moved to acceptance right away helps a lot. The conversation when he was diagnosed went something like this:

    -Am I going to die?
    -Not anytime soon. As long as you do what the doctors tell you. You'll probably end up being an old grandfather.
    -Can I still play football?
    -Yup, in fact, there are NFL players who have Type 1.
    -OK.

    And he hasn't missed a beat since then. I know we're only two weeks into it and he can turn around and start hating the needles tomorrow. Either way, him being so accepting and dealing with it so well made the whole thing so much easier on us as parents. I'm amazed every day how cool he is about it and what an awesome kid he is. Again, I realize it may not last, but let me savor the moment!
     

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