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New to the Board. Diagnosed today

Discussion in 'Parents of Children with Type 1' started by faithfaery7, May 20, 2014.

  1. hawkeyegirl

    hawkeyegirl Approved members

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    Well, my son was also diagnosed at 3. At first he cried for all shots and finger pokes. He eventually got used to the finger pokes, but cried for every shot until we started the pump, five months after diagnosis. I do think that most kids adjust to the shots more quickly than that, but it was one of the big reasons why we pushed for the pump so quickly. Numbing crème + one needle a day beat multiple shots a day, hands down. There are a couple of things you can try in the meantime. One is the Inject-Ease. You can buy one at most online pharmacies - try Edgepark first. It's a device that automatically inserts the needle for you. You still have to push the plunger down, but it hides the needle, and I think is "smoother" than doing it by hand. One other thing you can try is to "wake up" the nerve endings where you're going to give the shot by scratching that area with your fingernails right before you do it. Some folks have also had success using a spoon that has been in the freezer to numb the injection site before you give the shot. But with a 3 year old, he's probably reacting more to the idea of the shot than the actual pain, so the answer just may be time. While we were on shots, we quickly figured out that the best way to do it was to get it ready out of his eyesight, and then go find him, grab an arm or a leg, give the shot, and then give hugs and kisses. We tried letting him decide where he wanted it, and tried calming him down beforehand, and all it did was just extend the trauma. Most people find that it's best to be very matter of fact and quick, and then do the comforting when it is over.

    Yes, every 3 months is normal. We're now on an every 4 months schedule, but we've been at this a while. You should expect every 3 month appointments for the foreseeable future.
     
    Last edited: May 23, 2014
  2. Wren

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    Hhmm... I wonder what you were told the "proper foods" were. We were taught how different food affected blood sugar to help decide when and how much insulin to give. We were never given a number of carbs per meal or per day, and never given a list of food to eat or not to eat. Different practices handle this differently, but just so you know, you're not inherently restricted to "proper foods" the rest of your life!
     
  3. cdninct

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    Welcome! You have been given great advice. Things will be okay. You will not need to totally change your life or your son's. He will continue to eat what you choose to feed him based on your overall philosophy on nutrition. You will feel normal again.

    The beginning is rough, though, and it is totally normal to feel angry, sad, and overwhelmed. You do not have to feel like you need to work through or get past all of those emotions now. Just take things one day at a time, and feel the way you feel. This board is great for giving you some perspective when it seems like no one understands!

    As for crying during shots, K (who was diagnosed at 2.5) cried hard for about a week, then things started to get better. For a while until we realized there were better lancing devices than the one we brought home from the hospital (let me recommend the OneTouch Delica or the Accu-Chek FastClix or Multiclix), he cried more about checks than about shots. We got to the point where he fussed briefly but let us do the job without issue, then we would have a bad/sore shot, and he'd go back to crying for a day or two. He started pumping 5 months in, but when he had to go back on shots for a few days last summer, he didn't mind them at all. He was more than happy to get an extra shot if it meant getting an extra popsicle, for example!

    My best advice is to make it as fast and matter-of-fact as possible. Get everything prepared out of sight, let him do something to distract himself, announce that the shot is about to happen, and do it immediately, being as firm as you need to be to get the job done. Save talking, cuddles, and praise until after it is all over (but be sure to be positive after the fact!). I don't really remember how it worked with shots, but when he started on the pump just after he turned 3, he cried a lot during pump site changes. It took him a while to stop crying just because he was scared and not because he was in pain. We discussed how little it hurt each time after the site change was over and resolved to try not to cry so much the next time. One day it clicked for him, and that was the end of the crying (except, again for a site change or two after the odd painful one).

    Good luck, and keep reading and posting!

    Oh, and yes--endo visits are typically every 3 months.
     
  4. cdninct

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    You posted after I started writing my message so I didn't see this until after I was done, but we are clearly operating on the same wavelength! :smile:
     
  5. sincity2003

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    In her follow up post, she mentioned being on two insulins, so it sounds like they're on NPH and R. We started on those and while the endo and CDE didn't mention "proper foods", we were restricted to 45-60 carbs at each meal and 15 carb snacks, so maybe that's what she means? When DS was in the hospital, after the first 2 days of just IV fluids, we were then given "choices" for each meal..he was allowed 4 choices for breakfast, 4 for lunch and 5 for dinner, and each food had so many "choices"...I thought we were NEVER going to get the hang of it, until the CDE came in and went over carb counting and we dumped the word choices.

    Faithfaery, you will be able to do this. It will be scary and overwhelming, but you will do it and your son will be okay! I agree with others, though, don't single him out from his brothers. You might find that you already eat the way they are instructing you too. We found that 90% of what DS was eating fit right into his ratios that he started out on.

    If you need to cry, cry. If you need to yell, yell. Get it out. But know that you can and will do what's best for your son and he will be okay :)
     
  6. faithfaery7

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    That is exactly what I was talking about, sincity. :)

    It was the carbs per meal/snack. Right now he's on 50-60 carbs per meal, and snacks have to be 5 and under. It's difficult to find things that he can/will eat for snack, but we typically don't do much snacking anyways so I'm hoping it won't be too much of a problem.

    Most of his regular meals fit into his carb goals well (he sometimes even gets more than he normally would have gotten!). The only thing we've had to cut back with is drinks. We used to do 100% juice watered down or milk between meals. Now he's only allowed water, and can have milk with meals of course. I think that's the most upsetting thing for him. He's a milk addict!

    We've tried the water mixes, like Mio or the Crystal Light ones, but as of now he doesn't like them and won't drink them, so he's stuck with water. Fine with me! lol

    We're adjusting well. At least for now. I'm kind of waiting for the other shoe to drop. Even though he's only 3 I'm starting to get nervous about school. We had planned on sending both twins to a Christian Academy a couple towns over, but I don't know yet if they will make accommodations for him. I don't even know if they have a nurse on the premises .... So I'll be calling them this coming week just to do a little research. If they aren't willing to do what he needs, it will probably be public school. We'd originally wanted to homeschool but I know me and I just don't have the right brain for that.
     
  7. bamaboyd82

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    I'm so sorry. My son was diagnosed at 3, and I can relate somewhat to your family dynamic, as I also had a 4yo and 1yo at the time, so you're kind of swirling in babies and all of a sudden have a huge new responsibility. I've found it best for our family to have the same rules for everyone. So, my non-D children and my D child all get snack at the same time, and it's the same snack for everyone. They eat the same meals, as well. We don't have as many treats anymore because we have found the resulting BG's hard to deal with, but if there's a treat served, then everyone gets one and they all get the same amount. Sometimes (maybe 1/4 of the time), the non-D children even get a juice box or piece of candy when the D child is low and having one, because juice and candy are only given when he is low. But they understand that juice and candy are like his medicine, so they don't expect that all the time. I think the sameness in their routines has helped my D-child to not feel isolated, and has helped the non-D children to be compassionate about their brother's disease. Sometimes, they even ask that their BG be checked, and just last week, both the 5yo and the 2yo asked to have an (empty) injection to see what it felt like for their brother. I thought that was crazy, but also kinda awesome. This can definitely be something that draws your children and your family closer. I wish you all the best!
     
  8. Christopher

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    Hi,

    If he is on Humalog and Levemir, I don't see why they would have you on a fixed carb diet. Maybe they think it is easier, but it sounds like it is difficult for you. I have never had to deal with a 3 year old with diabetes, so there may be something I am missing, but I still think having him on a fixed carb plan like that would be harder than just feeding him as you normally would.

    Anyway, just something to think about and talk to his Endo about down the road.
     
  9. Sarah Maddie's Mom

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  10. faithfaery7

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    I think the fixed carb diet is just for these first two weeks so that we can see how the insulin works for him? As of right now we cannot seem to get his bg numbers into the right range. The only time they have been is first thing in the morning, before he's had anything to eat. Once he eats, his numbers are anywhere from low 200s to high 400s. They've upped the doses twice, but it still seems like he's just high all the time.

    I stopped calling in the mornings to give his numbers, because they said I only had to call three days, and I called in four ... But I really think I should keep calling in. At least until his numbers are under control? I didn't call yesterday or today and I just think that his endo needs to know what is going on. Or should I check in with our case manager first before bothering the endo? I'm just not sure what to do right now
     
  11. mamattorney

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    I would keep calling in until everything is working for you and he's coming back into range around 3ish hours after a meal. You've got multiple moving pieces (Levemir dose, insulin:carb ratio and correction factor) and they may want to pick one to change over the other. Let them do the thinking on this for now, but if you don't tell them, they won't know.
     
  12. sszyszkiewicz

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    The first month or so they try and dial in on his doses. They dont want to overdo it so they send you home wwith instructions that tend to lead to high numbers.

    Just keep calling.

    My son was diagnosed 11/26 and it took until 12/20 for them to figure it out. After a while you will be able to make adjustments, but for now call.
     
  13. susanlindstrom16

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    I will echo the advice to keep calling the numbers in! My daughter ran high for a while after we came home and I did feel panicky about it. We would send in a spreadsheet with her numbers every week for a long time. Eventually, we were giving her double the amount of Levemir we started out with. Its just so hard to wait while making little changes and then seeing if they work or not. You really do end up having a relationship with your endo, its not just like you have your appt and then see you later! Calling them is bothering them- they are expecting you to contact them if you have questions, especially so soon after dx.
     
  14. MomofSweetOne

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    We called in daily for the first two weeks, then every 3 days or so, and then gradually quit except for occasional questions. I found Think Like A Pancreas at the library, and reading it was a huge lightbulb moment for me as far as how they were determining doses. Call for as long as you need to. There are so many adjustments that it's ok to let them carry that weight in the early days.
     
  15. faithfaery7

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    Thanks, guys!

    I'll go call in his numbers. :)
     
  16. Andy'sMom

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    I'm so sorry to hear of your son's diagnosis. It's very hard (especially in the beginning) but I wanted to share with you that YOU CAN DO THIS and your son will THRIVE! It will be okay, it just takes time to adjust to the new normal. I know where you're coming from - Andy was diagnosed at 10 months old and I was in my first trimester of pregnancy at the time so it was a crazy rollercoaster those first months. Dealing with a toddler creates special issues, but you can do it and hopefully your team will give you good tools as you go along! Don't be afraid to ask questions and try new things if what you are doing is not working for you or your son. The thing I most wanted to hear when andy was diagnosed was that he was going to be okay as he grew up. He is turning 10 next week (living with diabetes for just over 9 years) and he is doing great! He is a typical 4th grader - he plays baseball and soccer and is on the swim team. He's very active and very healthy. We keep regular doctor appts (endo, pediatrition, eye doctor, dentist) to stay on top of any health issues (which there have been none), but I think his life is very normal! Just wanted to share our story so you know it gets easier and you can do this! Your son will grow and play and do all the things he would otherwise do. I know its very hard in the beginning so hang in there and remember that you are not alone!
     

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