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New here, any advice would be great

Discussion in 'Parents of Children with Type 1' started by Dcdsktd, Aug 20, 2012.

  1. Dcdsktd

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    My son was just diagnosed with type one on the 11th. I have only received a crash course to diabetes and his treatment. He came home on the 15th and I'm still very confused. Every night and day has been scary. I know learning everything is going to take a long time but I would greatly appreciate any advice that is offered. Right now he is on a sliding scale of humalog before meals. He eats 5 meals and 2 snacks with set amounts given by his team. He is on lantus at a dose of 24 at night. He has had several highs and lows since he has been home. Any advice would be great. Thanks
     
  2. Sarah Maddie's Mom

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    Hi and welcome. First I'd buy Ragnar Hanas' book, Managing Type 1..."

    Here on the forum you might want to go the the introductions forum and read a bunch of those. Christopher usually posts a list of reading materials for newbies there.

    Your question is pretty broad, so the best I can suggest is: read - here and Hanas and othres. Log - everything - food, exercise, sleep, insulin, stress for a week or so to being to see what's happening. And sta in close contact with your endo or CDE. You've got a lot of food, a lot of insulin ( not sure how old your child is), the stress of a new school year, etc., etc., so his dose will probably change quite a bit in the coming weeks.

    See you round :cwds:

    ETA Oh, see that he's 14... still, his dose will likely change
     
    Last edited: Aug 20, 2012
  3. DadTheImpaler

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    How's Daniel handling it? Coincidentally enough, I just met and spent the weekend with a teenaged friend of my niece, who was diagnosed in the last couple months. He's taking it pretty much in stride - I don't know that I would've been so brave at that age.
    If you're gonna be a diabetic, better now than when WE were teens - there are so many great products out there - pumps, CGMs, teeny-tiny needles...
    Try not to be overwhelmed by all the information you're going to be getting - it'll be second nature before long.
    You'll make mistakes, and it doesn't make you a bad parent - just makes you human.
    Show him some pics of Ryan Cochran, the diabetic contesant on American Ninja Warrior - it doesn't have to slow him down.
     
  4. Dcdsktd

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    Thank you, I will have to read that book and many others. I know my question is generalized and I apologize for that. Right now I don't really know much on everything. I've been reading in here and realize just how new to this we are. I don't understand alot of the terms used yet.

    Daniel seems to be handling it well, he hasn't really talked much about it even though I have tried. He was very sick when he went to the hospital so I think he is happy to be home and is taking it one day at a time. He is involved in every step from the diet set for him to the injections. With school a week away doesn't leave alot of time for him to adjust.
     
  5. sooz

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    I'm sorry your son was diagnosed. I remember how heartbreaking and overwhelming it was for me. My advice is to take the time you need to grieve privately. I personally cried every tme I took a shower. I don't know if it helped any, but that's the way it was, so if you're there, know you are not alone. Also know that perfection in his numbers is not possible and that mistakes will happen. Try not to be hard on yourself.

    There is a thread here titled Things Your Endo Never Told You, or something like that. There are some good tips there.

    http://forums.childrenwithdiabetes.com/showthread.php?t=68171

    Your son will be able to go wherever his dreams take him.

    If you don't have them already, a food scale and the book, app, or website Calorie King are invaluable tools.
     
    Last edited: Aug 20, 2012
  6. wilf

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    Sorry to hear about the diagnosis. There is lots to learn - get a good reference text or two and make use of the abundant resources on this site.

    Go easy on yourself. It's ok to be sad and it's ok to be mad and it's ok to be scared. Know that it will get easier as time goes on.

    My one word of advice about the diabetes management would be to chat with your team about whether it is possible to move the Lantus to the morning.
     
  7. DsMom

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    Hi...and sorry you have to join us.:( You made a great move in coming here, however, as I've found this to be the best place for advice and support, bar none. People here will get what you are going through, and will have great tips as you move through the beginning of this journey.

    My advice at this point is to not be surprised if this diagnosis feels like a grief process to you and your son...because it really is.:( You may experience emotions similar to those of losing a loved one...denial, anger, depression, etc...as you adapt to this new situation. And these feelings may come and go through the years...it's important to learn to roll with the punches with T1!

    Keep the communication lines open with your son...this is a tough age to go through something like this. Even if he appears to be "fine" continue to touch base with him (while trying not to smother;)). Encourage him to google famous people with Type 1....actors, athletes, singers...this may help him to see how people live perfectly normal...and sometimes extraordinary...lives with Type 1.

    Although his D may feel huge to you both right now, it will shrink in importance to you both the more you learn and experience. As the years have gone by, I've tried my best to put diabetes in it's place...which is as small as we can make it. Some days it is big, but we try to keep it small as much as possible.

    Hold on to the fact that you will not always feel the way you do today. It may be hard to believe, but all these terms and facts that are so new to you today will become part of your daily life...so that you won't even think twice about them one day. Managing diabetes will become just another part of life for you and your son...a sometimes annoying, sometimes frustrating, but necessary part of keeping him healthy and happy.

    You will survive....you will thrive...and life will feel normal again one day. Hang in there...keep reading! Take care!:cwds:
     
  8. mom2Hanna

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    Just wanted to say hello and say this website has been my best resource since my daughters dxs. I'm sorry you have to be here, but you're starting off in a good place, there is also a board for parents of teenagers.
     
  9. emm142

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    Hi there, just wanted to let you know that I was diagnosed at 14 as well. I'm 19 now, studying at university and living alone. D is tough, especially at first, but your son can still grow up to be happy, well-adjusted and successful.
     
  10. Pauji5

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    so sorry you had to join us....I have a 14 year old son as well.....He's very physically active, plays lots of sports and is doing a great job managing his insulin..... I would be glad to talk teenage boys if you ever want to send me a PM.....Good luck....it does get easier......
     
  11. Williamsville mommy

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    And just know, you have saved his life. Now that he is diagnosed he will begin to fel better physically. Remember that, is life has been saved!!...it will get easier and things will become more familiar to you. Be patient with yourself , take time to grieve, and just take it one blood sugar check at a time....
    Linda
     
  12. nanhsot

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    There is never a good time to get diagnosed, but the teenage years have their own special challenges, there are many parents of teens here so please reach out and connect with any of us.

    My son was diagnosed at 15. Do you have any specific questions, is there anything you need to talk about? Please feel free to send a PM if you need someone to talk to who has been in your shoes. It does get better, but this is a stressful, overwhelming time for everyone.

    Good luck, glad you found this place though I am so very sorry you needed to.

    Ask your team about switching from a set amount of carbs to eating with a ratio of carbs: insulin, that alone does make life easier in a teenager. We can talk more about that when you are ready to make that switch.
     
  13. Dcdsktd

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    Thank you all for the support here. This is definitely overwhelming. He doesn't talk about his diagnoses at all. He treats it like its no big deal. We are struggling with him wanting to eat even when he isn't suppose to. He has had quite a few lows. His team keep adjusting his dose on a daily basis. We are learning a little more each day. He was low tonight while sleeping, which scares me more then anything as I'm sure everyone here understands. He starts school Monday an I'm freaking out about it. I don't want him out of my sight as I'm afraid something will happen. His reaction to this is that I'm overreacting. How does everyone cope and handle the nighttime lows? And the school?
     
  14. Dcdsktd

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    How does the carb to insulin ratio work? It may be too soon for us as he is on a sliding scale, but I'm interested in hearing more about it.
     
  15. emm142

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    When using a insulin to carb ratio, you know how many grams of carbohydrate each unit of insulin will cover. For example, my I:C is 1:10, which means that 1 unit of insulin covers 10g carbs. This means that if I have 5g carbs I have 0.5 units, if I have 60g carbs I have 6 units, etc.

    Corrections for high blood sugars are worked out separately. For me, 1 unit of insulin lowers my BG by 120mg/dl, so if I'm 220 and my target is 100 then I take 1 unit, if I'm 340 then I take 2 units, etc.

    The good thing about having corrections and I:C ratios as a separate thing (rather than merged together, as they are in a sliding scale) is that:

    1. Meal sizes can vary. When on a sliding scale which gives insulin depending on BG, it kind of assumes a 'standard' carb amount per meal.
    2. Food can be eaten between meals, even when there is still insulin in his system. If you correct for a high BG while insulin is still working, you run the risk of 'stacking' doses and causing a low. But when there is insulin working it is still fine to bolus for carbs, so you can just use the I:C ratio to cover snacks.
    3. You can also get better accuracy with an I:C and correction factor, although this is less relevant on MDI (multiple daily injections) as you are restricted to using whole/half unit increments of insulin.

    In all I'd really recommend the eventual move to an I:C ratio and correction factor, but if you are overwhelmed right now with the new diagnosis you might be as well to stay on a sliding scale whilst you get your bearings - as long as you can stick to predictably sized meals.
     
  16. nanhsot

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    Em described it well; each person is unique in their ratio and your team will help you tweak it when you guys are ready. It can even vary by time of day, for example my son needs 1 unit for every 5 carbs for breakfast and 1 for every 7 the rest of the day. You get good at math and at first you'll have calculators all over your house!

    The advantage is that he can eat whenever he likes, and in quantities he chooses. Taking the insulin before the meal is important though (prebolus), helps prevent highs after the meal, the food starts working before the insulin otherwise.

    The other thing to know right now is that it's very normal for him to be STARVING just after diagnosis. His body has some work to do to replenish things, remember that there was a time when his body was literally fighting for nourishment and he's probably lost weight and such, so it's common and expected now that his body has insulin again for him to need to eat and eat and eat...the trick is to find lots of no carb options that fill him up: lean meat, cheeses, olives, celery, slim jims, pork skins, etc. Once your team has him on a ratio then you'll have more freedom to eat whatever, but for now find no carb things and let him eat his fill.

    The starving phase lasted a few weeks here then it settled into normal teenager starving!

    As for night time lows, I'm glad you are testing overnight! How low has he gone and at what time of night? What are you doing for his long acting basal? Be sure to treat night time lows with some lasting type of sugar, not just glucose/juice. At night when my son was on shots we always used chocolate milk or gogurts, it brings up the low but then sticks around the body longer than plain glucose does.

    edited to add that I see he's on 24 of lantus at night; definitely ask your team about lowering that, changing the timing, or even splitting the dose (half at night and half in the morning) if the lows continue. My son started at 24 initially too and eventually came down to 13 during honeymoon, so it's pretty normal for that dosage to change radically.
     
    Last edited: Aug 23, 2012
  17. DsMom

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    Although some people are better at adapting to things than others, I am guessing this may be a case of a teenager just trying to act cool. If I were diagnosed with D today, even with all I know about it's management, it would still be very traumatic and scary for me. Something like this falling in the lap of a young teenager...well, I can only imagine what that must feel like. You of course can't force him to talk about his feelings...I'm sure he'd prefer it to remain no big deal;)...but I'd just make it clear you're there for him if he wants to talk or has questions. He still may be in a bit of shock...the questions and emotions may come later.

    As for night time lows, the majority of parents here do check BG overnight at least once...some people do it multiple times every night. Personally, I do a check before I go to sleep every night (but my son is only 8...your son may check himself), and then do a re-check later in the night according to what that number is. I am in the minority that I do not check every night if that bed-time number looks okay and there are no other factors such as a lot of exercise that day or illness at play. But, there are many nights I am up multiple times at night checking. You and your son will find a plan that is comfortable and effective for both of you.

    Have you heard about continuous glucose monitors (CGMs)? Your son would wear a sensor that provides a continuous reading of his BG on a tiny monitor (some are integrated with insulin pumps), and they have alarms (that I understand are not all that loud) if he should go too low or high. There is a wealth of info on CGMs on this forum...something you can look into if you are interested.

    As for school, as I mentioned, my son is young and is still cared for by the school nurses...who call me if they have any questions or concerns during the day. I am guessing your son is doing his own BG checks and shots? In the beginning, if I had an older child, I think I would have him go to the nurse's office at first until he really got comfortable with his own care...and I would have the nurse call me with updates and to get my recommendation. Eventually, though, a 14 year old is usually capable of doing their own care at school. I think a lot of the parents here have their teens check in via text at times during the day. This is something you will have to have written into his care plan at school...I know our middle school does not allow texting in class, and my son will have to have special permission to do so. Thank God for cell phones. He will really be able to contact you whenever he needs to from school with his questions...so he really won't be completely on his own. I know it's hard to let them go physically...but you will still be in touch, so you can have some comfort in that.:cwds:

    Good luck...it will be tense and scary at first, but trust us that you will eventually feel comfortable about this and sending him to school will one day be no big deal.
     
  18. DsMom

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    Also wanted to add that you should search this forum for info on 504 plans..for which you get together with school personnel like the principal, nurses, guidance counselor etc. each year to sit down and discuss your child's medical needs and how different situations should be handled. For younger kids such as mine, we outline what should be done for recess, lunch, gym, what to do if he needs to test his BG during standardized or timed tests, field trips, etc. For an older child who does his own care...you'd probably want to do your research here to see what other parents do. You'd definitely want to add in that your son must be allowed to text you during the day regarding his D management needs.

    Having this plan in place before the school year begins can also give you lots of peace of mind as both you and the school personnel will be on the same page regarding your child's care. These plans can also be tweaked as you go and you realize what it is or is not working for your child.
     
  19. MamaC

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    Feel free to PM me. My son was dx'ed at 13 (6.5 years ago).
     
  20. lgouldin

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