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Hi, new here.

Discussion in 'Parents of Children with Type 1' started by mcphelster, Feb 27, 2015.

  1. mcphelster

    mcphelster Approved members

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    Hello, so glad to have stumbled across this site. My son is 14 years old and was diagnosed this past Friday, Feb. 20, 2015. He had lost weight rapidly, 21lbs in a month, but 14 of those pounds were lost in 2 days. When I took him into his pediatrician his blood sugar was 287, she sent us straight to the hospital where his blood sugar tested at 800 and his A1C was 11.6%.He spent 2 nights, 3days in the Peds ICU and then a night and day on a regular peds floor.

    To say we were shocked at this diagnosis is putting it mildly. We have no history in our family and we just thought he was still feeling the effects of the series of illnesses he come down with following Christmas vacation. We'd returned from Disney World on Dec. 28th and he immediately came down with the flu, followed by ear and sinus infection, then followed by walking or atypical pneumonia. He was struggling horribly with grades in school, the worst it's ever been but he takes meds for ADD and his doctor for those thought, with all his growth recently, that the meds had stopped working for him. We were scheduled to retake the TOVA test yesterday actually...that got cancelled with the diabetes diagnosis. I really think now that all his school schedules for the past few months had everything to do with diabetes and nothing at all to do with his ADD. He's always been and A/B student unless his meds need to be changed due to a growth spurt, but the past 2 to 3 months have been horrible. I'm so hopeful that will change now that we know what's been wrong and it's being treated.

    Right now he is taking 14 of Lantus and 8 of Humalog in the AM, 8 of Humalog at lunch and 12 of Lantus, 8 of Humalog at dinner and checking his sugars 5 times a day. To say we are overwhelmed by all this would be an understatement to say the least. He is really doing well and feels so much better. He has his appetite back and could eat and eat and eat, if we'd let him. He is on a carb meal count of 75 for bfast, 105 for lunch, 15 afternoon snack, 120 dinner and 15 pm snack. He will be going back to school tomorrow and is very anxious about it. He does not want anyone (outside the nurse and teachers) to know he has diabetes, he's afraid he'll be made fun of.

    Well, I know this is rambly and probably doesn't make much sense, but there you have it. New diagnosis of Type one...not sure we wanted to be part of the club, but here we are. :)
     
  2. Sprocket

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    Sorry to hear you have joined us, but glad you did. Welcome. I am a relative newbie here too, my DD is 13 and diagnosed a year and a half ago. I can tell you that it gets easier with time and practice. You are in the right place to gain tons of information.
    My DD felt the same way about not wanting anyone to know at first. That was concerning to me from a self esteem and a safety point of view. That passed also. After a month or so at school she began to test in open view of everyone, and now she injects in class and loves to tell whoever is interested all about diabetes. Hopefully your son will feel the same soon. It's a hard age, but I think he will find that his piers are more supportive than judgemental.
    Diabetes also came out of nowhere for us. My daughter had a lot of tonsilitis/strep throat when she was younger. I often wonder if that didn't have a bearing on how this came to be.
     
  3. suej

    suej Approved members

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    Sorry that you have had to join us, but glad you found this forum so quickly and welcome. There are so many wise, kind people willing to support and share their experience here.
    It is such a tough time, especially at the beginning, wishing you strength and take it hour by hour, sugar reading by sugar reading and slowly it becomes manageable. I often repeat one of the posters here - (I think Kiwikid's ) mantra to myself - Don't panic just treat the number.
    My son was younger than yours (9) at diagnosis so did not have issues about letting people at school know, but his school and friends have been so supportive of him and are a "safety net". I am sure with time he will be comfortable to tell his friends and will be supported by them.
    I have found Gary Scheiner's book "Think like a pancreas" invaluable as well Ragnar Hanas's book Type 1 Diabetes
    Hope school goes well
    Kind regards
     
  4. Sprocket

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    I'll second that for sure - Don't panic and treat the number is a really valuable tidbit to keep in mind and those two books are the bible. I refer to both of mine often.
     
  5. jenm999

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    Sorry to welcome you to our little club. :( I can already tell that you're going to be great at this - you're reaching out, learning at lightning speed and you love your boy. Hang in there and ask lots of questions.
     
  6. nanhsot

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    Welcome always seems an odd thing to say, but glad you found this place, it will help so much. Reach out to the wisdom here and realize you are not alone. Your story is almost a mirror of ours, my son was diagnosed at 15 on Feb. 5...but it's been 5 years now. We blamed it on a combo of holidays and livestock show (we are a 4H family). My son has ADD as well, though he was not put on meds for that until AFTER his T1 diagnosis. So, lots in common.

    I'm not around as much as I used to be as my son is now in college but it's a great place to get help and support. Hang in there, these first months are a roller coaster but you'll find a groove and life will resume a new normal.

    First bit of advice: When he was undiagnosed, his body was not able to use the food he was eating; he was literally starving. So you actually do need to let him eat and eat and eat right now. His body needs to refuel. Just stock up on no carb options (there are several threads here with no carb ideas) and let him go to town. My son ate an amazing amount of meat and pork skins (blech) in those early days. Don't limit food, just try to find foods he can eat at will right now.

    Talk to your MD about getting on a carb ratio, I can't imagine trying to limit carb counts with a teen. With a carb ratio you count carbs eaten and dose accordingly, so it's kind of backwards of what you were given.

    Edited to add a link to an old thread with low/no carb options. This was invaluable in the early days.
    http://forums.childrenwithdiabetes....etes-and-would-like-some-help-with-free-foods
     
    Last edited: Feb 27, 2015
  7. msschiel

    msschiel Approved members

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    Unfortunately, welcome to the board. This is a great place for information and support. We caught my ds's D early, because I knew what I was looking for due to having father diagnosed around the same age as my son, so things weren't as bad as I am sure they could have been. It is a lot to learn and take in, but it will become routine very quickly. Definitely get a carb counting class asap. It is so much easier counting carbs than trying to fit the carbs into the diet plan. We are just now dealing with growth spurts and a hungry preteen Diabetic, so I can only imagine what you are going through with your 14 year old (I have a 14 year old non-D son).

    Hopefully his honeymoon will last for a while. My ds was only on 4 units of Levemir for almost 9 months before we started to see the need for more. The more support he has from peers and adults the easier it will be. My son went on a sleepover a few months after diagnosis and all his friends were interested to see how he took his shots. I am sure your son will get more comfortable with it once he gets used to his new routine.
     
  8. Christopher

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  9. KHS22

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    Welcome!
    He will be HUNGRY for the next bit - I think most of us on here can second that. He hasn't been getting his nutrients the last while, and now that he is with starting insulin, his body is playing catch up! Its tough when they have a big appetite plus carb targets. So helping him load up on the carb free stuff might help!
     
  10. Melissata

    Melissata Approved members

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    My son was diagnosed just after a trip to Disney-world too at the age of 15. It is odd how many times over the years I have read that! He was also very private about his diabetes back then, but we just encouraged him and before long he was doing everything and not the least bit self conscious. That was 20 years ago. He is still on shots, but uses Dexcom and manages very well. He is a successful engineer, no complications whatsoever, has traveled all over the world, and doesn't let diabetes stop him from anything, including skydiving. My advice to you is to take one day at a time, read a couple of the good diabetes books, and teach him what you learn about managing his diabetes. And yes, make sure you tell the endo he wants to carb count, not stick with a set number of carbs per meal. He is very hungry because his body is trying to regain the lost weight, so don't hesitate to call the endo and let them know.
     
  11. Mish

    Mish Approved members

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    don't worry - your post makes PERFECT sense. We've all been there.

    Just take a deep breath, and it will all come together sooner than you know. My son is also 14, so while he's had diabetes since he was 5, he's still not interested in "the whole school" (as he puts it) knowing that he has diabetes. He's getting better about it, but it's really not anyone's business. In your son's case though, you really do need to make sure the teachers understand what's happening at this point - just for his own safety. So I'd arrange a meeting with his guidance dept and principal and nurse, and just go over things, and make sure people who need to know, are told.
     
  12. aprilodell

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    Hey there

    Similar story no family history. My son had been losing weight but nothing crazy until the weekend before diagnosis. He was diagnosed on 12-24-14, yes xmas eve. He had come home from school for the break and was just wiped out, by Sunday he just looked awful on Tues we took him to the ped as he was throwing up, complete labs and the next day we were instructed that the endo team at Children's Hospital was expecting us. We had a BG of 619 on Tues and on wed we had a BG of over 400. We spent the night and the endo team from The Barbara Davis Center did a lot of teaching, sent us home xmas day with supplies etc. I am not sure they would have, had I not had some experience with this. My step dad who has been around all of adult life has had type 1 for 50 years and I am a social worker in a hospital, where i have clients with type 1. So it was new and not new at the same time.

    My son is also a good student and has ADD, takes Concerta. He has been managing fine, we are on MDI and honeymooning. We test alot sometimes 9-10 times a day, this way he is more independent. He tests when he wakes up before breakfast, at 10am, at noon, at 2 then again when he gets home off the bus, he is alone with his brother then. Then if he feels icky..dinner, before shower and before bed. He has been great and sometimes like last night a few times in the middle of the night, when he wants me to usually. Our insulin has gone down a lot since diagnosis. We are on 21 of Lantus at bedtime. Then we are on a 1:35 ratio for breakfast and dinner and 1:30 at lunch. We are in the process of ordering a dexcom and a tslim pump. I think that the hardest thing is classes where they are having a treat or an event after school where they serve pizza. Initially I would have said don't eat it, now I will say eat it and we will correct it at the next meal, both of us are excited for the pump, so that this will be more flexible.
     
  13. Dad_in_Canada

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    Similar story here, lost weight, thought it was an illness, etc. When we brought him to clinic, not knowing what was wrong, the doctor almost sent us home without any tests. I shudder to think what would have happened if we had left that easily. More discussion led to a lab blood test. I'm sure the blood test result the next day shocked him as much as it did us.

    I learned 2 important things from this group early on:
    1. You manage this thing, and as best you can.
    2. Needing more insulin isn't a bad thing. It just is. His diabetes isn't getting "worse". His pancreas would be making that much insulin if he didn't have diabetes.

    You'll learn a lot in here. Visit often, and ask lots of questions.
     
  14. mcphelster

    mcphelster Approved members

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    Thank you everyone for making me feel so welcome here! I agree that it's not exactly someplace we were looking to be, but if I have to be in this situation, then I'm glad to be surrounded by so many kind and supportive people.

    Thanks so much!
     
  15. BarbDwyer

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    Hello.

    My son is 13yo diagnosed 9mos ago. We had no inkling of diabetes when we went to the doctor. Such a shock.

    Oh yes the eating - holy cow - making up for all that weight loss! We do the carb ratios like others mentioned. Seems like that must be easier.

    Hopefully your son will get more comfortable around others soon. It was hard for my son too but it was summer so he saw one or two friends at a time over a couple months and it wasn't 'new' when school started. He's also having an easier time with the academics this year than the end of last year (pre-diagnosis).
     

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