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13 y/o daughter is type 1

Discussion in 'Introductions' started by Lysa916, Apr 29, 2014.

  1. Lysa916

    Lysa916 Approved members

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    On Saturday April 19th I came home from work to find my 13 year Old daughter lying on the couch, unresponsive. She needed to be carried to the car and brought to the ER. The check in desk did not wait to have her seen. She was not even triaged. Within minutes a team of hospital personal were working on my daughter. Monitors, blood work. Very scary! Her blood sugar was 648! They asked me if she was diabetic. No, my daughter was not. At least I didn't think so. An ambulance took us to a children's hospital an hour away. My daughter was brought to PICU and connected to several iv's and monitors. She was so out of it that she did not respond to any of this. They kept asking questions. Now I see the weight loss, the stomache aches, headaches, peeing a lot, drinking a lot. We spent 3 days in the hospital. We learned how to test her blood and giver her insulin. My high metabolism child who is used to eating anything she wants, whenever she wants is now counting carbs and feeling resentful. She broke down crying and threw her meter across the room. She is sick of it all already. Our lives are forever changed and we don't know if we will ever get used to this.
     
  2. rgcainmd

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    I HEAR YOU! My daughter, 11 years old, was diagnosed and hospitalized 01/24/2014. We were lucky, no DKA, blood sugar only got as high as 630-something and not for very long. My daughter is like yours: high metabolism, eats all the time, a true grazer. (Unlike your daughter, we don't yet have puberty/adolescence in the mix, but that's just around the corner for us.). Continuing to graze in the way she used to before T1D hasn't really worked out very well for us being as how she is still on MDIs, but hopefully she will be transitioning to a pump tomorrow. While I understand that pumping will not be a breeze (and I fully expect it to be more difficult on many levels) it will at least return some of the control my daughter lost over her way of eating once T1D reared its very ugly head. In many areas of the U.S. (I'm not sure where you live) and depending on your health insurance, it is extremely difficult to get on the pump before the six-month mark, but with a great deal of annoyingly difficult work, it looks like we are on the verge of succeeding. I would be happy to share some tips and be willing to help you troubleshoot in the area of getting a pump. I am sorry that you and your daughter are going through this. If you have a thick skin (and I realize that your skin is probably a little thinner than usual thanks to T1D), this Forum is a G_dsend!
     
    Last edited: Apr 29, 2014
  3. nanhsot

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    My son was diagnosed at 15 and we're still dealing with some depression and rage issues, 4 years later. No idea if it's related to his diagnosis or if it would have popped up later, but I think being diagnosed as a teen comes with its own special difficulties, though of course no diagnosis is easy. It's a time of life where they are stretching their wings and making their way into adulthood and now, bam, they have this new problem that none of their friends have, it's just too much. Being a 13 y/o girl is tough enough without adding this.

    I'm so sorry. What I can tell you both though, is that it will get easier. For the next few weeks you'll live, eat, breathe carbs and numbers, it'll feel endless. But I promise you, it will get better and it will become normal. You'll always hate it in the dark recess of your brain but on the outside you'll accept it and your daughter will resume her normal life. I promise. Before too long she'll test like it's no big deal and carb counting will be done in her head without thinking too much about it. She'll go back to giggling with her friends and having crushes on boys, playing sports and otherwise resuming a normal teen life.

    You are not alone, glad you found this place, it'll help more than you can know. You will get used to this. You will have days where you barely even think of it because it's just part of life. It won't always be front and center and it won't always be horrible. I well remember being told in my early days that one day it'll just be an interesting part of your child, like a freckle. I thought that was SO weird, but now I totally get it. Diabetes is just one interesting part of my son, and not the most interesting part at all.
     
  4. glko

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    Welcome and sorry about your daughter's ordeal during diagnosis. I'm sure that it was traumatic for you and for her in many ways. I also have a 13yo daughter who is not Type 1 yet but likely will be soon. She is also a grazer and loves to eat, loves carbs in juices, fruit, sweets, and all of it.
    If your dd is open to it I would suggest getting on a pump ASAP. It has allowed my 10yo son to eat much more "normally" and yet maintain decent BG control. The only issue that your daughter may have is wearing the pump and body image issues. Only she can decide if it is worth it to wear a pump vs the MDI. But the good news is that there are options out there and she does have some control over this disease. So much of the struggle that we see with newly diagnosed kids is they feel everything is out of their control. they are told what to eat, when to eat, when to test, when to give shots. It is a lot of extra work! And at a time when teens are trying to get more independence now that independence is taken away.
    My suggestion would be to give her choices in anything that you can within reason. Let her pick what type of meter she would like to use, what type of a diabetes kit bag would work for her. Give her lots of FREE carb food options to pick from. Let her look at the pumps if that is an option (insurance, cost, etc) and have a say in which, if any, she would prefer. Above all try not to let diabetes limit her from doing the things that she did before diagnosis, including sports, sleepovers, days out with friends. Try to make it work if possible. This will help her to see that she can live WITH diabetes and that she still has choices and control over a lot of things in her life.
    It doesn't get easy but it does get easier.
     
  5. sszyszkiewicz

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    I am sorry for your daughter's diagnosis. The first few days are just horrible. Everyone on this board has felt what you are feeling. Some of us newbies are still feeling it (my son was diagnosed the day before Thanksgiving last year). There are lots of really experienced people on these boards and if you post a question you will get a ton of really useful information quickly.

    Did you get a good starter class? Did they send you home with a binder? There are two books that are really useful. One is an absolute beginners book called "A First Book For Understanding Diabetes" by Peter Chase (its called the Pink Panther book). You can get through the whole thing in 2 hours tops. The next good book is called "Type 1 Diabetes in Children, adolescents and young adults." by Dr. Ragnar Hanas. I have the 5th edition. It is more of a reference book than anything, but has lots of good practical information. There are other books that people recommend but for newly diagnosed people, those are the books you want.

    If you can work it out, and your daughter needs enough insulin, try and get insulin pens instead of trying to deal with vials and syringes. They are easier, and in the beginning cheaper because you dont waste as much insulin (once opened insulin has to be thrown away in 30 days).

    In the beginning, the first month or so, they will be adjusting your sliding scale to get the doses right. During that first month I called the emergency number they gave us at least a half dozen times. Once you get the ratiois working and the dosage for your diabetic daughter (DD) in shape your numbers will even out. They have to be careful becuase your daughter is still making some of her own insulin and they dont want to add to much extra because it can send her dangerously low.

    I do not have any advice on dealing with your daughter's frustration. My diabetic son (DS) seems to have acclimated OK. He was as sick as your daughter, if not more so. Out of utter and complete ignorance I missed all of the signs, and it lasted for two weeks (I am miserable thinking about that). The doctor said because of that he would know what would happen if he didnt play by the new rules because he experienced it and that would have an effect on how he accepts his disease. Out of curiousity are you near Childrens Hospital in Philadelphia? Your diagnosis story sounds almost identicle to mine....the IV's, the special ambulance, the training, all of it.

    So welcome. Sorry you have to be here, but here is not a bad place to be. Ask questions. Vent. Complain.
     
  6. Lysa916

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    My daughter has no interest in a pump and we are only a week into this so I doubt we will even entertain the idea for some time. I try to tell my daughter that this is new and it will get easier but I don't know if I believe that. She is consistently high and cries because she doesn't know what she is doing wrong. We are using three different apps for carb counts because they all say a little different numbers. She knows how to measure food. She is a math kid! So frustrating for her. And me. I don't think we have had a tear free day yet .
     
  7. Sarah Maddie's Mom

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    Is her endo providing feedback on the numbers?

    One thing you'll soon realize is than managing Type 1 is as much art as it is science and that it's never, ever static. The first year is the hardest, and the first 6 months have the steepest learning curve, but you just have to get through it - it really will get easier. Really.

    I highly recommend Ragnar Hanas' book http://www.amazon.com/Diabetes-Chil...=sr_1_1?s=books&ie=UTF8&qid=1398862656&sr=1-1. It's a straight forward, easy to understand basic reference for all things Type 1.
     
  8. Christopher

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    Hello and welcome. As has been said, the early days are VERY tough, but as time goes by you will both adjust and things will be much more manageable. I know that is a fact from my own experience and just about every other parent on this forum. You just need to weather this initial storm. If she is not ready there is no need to rush into getting a pump.

    As for the high numbers, you need to help her realize she is not doing anything "wrong". It is very typical in the early days to have a wide range of numbers. Part of the issue may not be her calculating carbs "wrong" but that you don't have the correct insulin to carb ratio figured out yet.

    As for counting carbs, get rid of all the "apps" and do it the old fashioned way, look at the package and just use those numbers. If you have to use an app, just pick one and use that. calorieking.com is a great one. If you don't have a scale yet I would suggest getting one and using it to measure amounts of food. This will give you consistency in the amount of serving sizes.

    Finally, I could be wrong but it seems like she is trying to do most or all of her care. I understand being 13 and wanting that control. But it seems like she is really putting a lot of stress on herself. You may want to see if she would let you take over some or all of it, just for now, till things settle down. It would relieve her stress and allow her to not think about it so much. It is important for our children to learn how to manage this illness on their own and to become independent, but that will come in time. In my opinion, there is nothing wrong with us taking on the burden for our children and letting them just focus on being a kid. Hang in there.
     
    Last edited: Apr 30, 2014
  9. nanhsot

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    If I'm not mistaken, did I see in another thread that you guys are on a sliding scale? If so, please please call your MD today and ask to switch to a ratio. This allows your daughter to eat what she wants and fit the insulin to the food (vs what's happening now where you are fitting the food to the insulin she's taking). It's so much more normal and it's how she'll eventually eat, it's what all the kids here at this website do (exceptions are really only the newly diagnosed).

    Our endo started my son immediately on a insulin to carb ratio, and I'm so grateful because I read here all the time people whose kids are simply miserable because of the rigid food counts and the highs from not doing proper corrections.

    There's a better way, and if it were me, I'd be demanding it happen sooner than later. She's not doing anything wrong; she simply is not getting enough insulin. It's the regimen that's wrong and it needs to be updated, now. Just my opinion, but seriously, these early days are stressful enough without adding on a fixed meal schedule and lack of corrections.

    She will see highs, just so you know, but consistently high shouldn't be happening, your endo team needs to be contacted and things need to be changed.

    As to the pump, my son wasn't interested either, but at the end of the year when our insurance was about to start over with a new deductible, our endo encouraged him to just order it and sit it on the shelf until he was ready. He ended up giving it a try and hasn't looked back. Give it time. MDI is a fine delivery method, there are too many changes at once happening so I wouldn't push it. But as the mom, I'd be doing research on pump and cgm options when you feel ready.
     
  10. rgcainmd

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    Right after diagnosis, I was told to call the endo daily, and did so for about the first 6 weeks. She and I looked at the logs I kept of all BG checks, insulin doses, carb counts; every entry also listed the time. Based on these records, our endo began adjusting insulin to carb ratios and doses of basal (long-acting) insulin immediately, then every few days as indicated. Despite this, BGs were pretty erratic, but not consistently too high or too low. After a few weeks, I became more proficient at spotting some trends and could do adjustments myself. Even with adjustments, checking BGs frequently, and counting carbs meticulously, BG levels are going to be all over the place regardless, especially shortly after diagnosis--it's the nature of the beast. Just know that your daughter's levels would likely be much worse without all the work you two are putting in. If I were you, I'd start calling your endo or diabetes educator or whoever they told you to get in touch with every day or every other day for awhile and report your daughter's numbers (all the data I listed earlier) and say something like "Can you suggest any adjustments in my daughter's dose or insulin:carb ratio that might bring these numbers closer to a target range?" For us, sometimes relatively small adjustments like changing her insulin:carb ratio for one meal a day was helpful. But please know that you two could be doing everything "perfectly" and her numbers will be all over the map in the beginning. And like everyone is saying, it actually does get easier. Never easy, but definitely easier. Hang in there!
     
  11. susanlindstrom16

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    Sorry about your daughter's dx. :( My daughter's numbers ran high in the early days as we worked on getting her ratios set. One thing I have noticed with my daughter is that when she is high, she gets frustrated with things quite easily and is more quick to break down in tears about whatever is upsetting her. I'm guessing your daughter is still not feeling that great which makes it harder to deal with things, especially something like this. In time it will get easier!
     
  12. KatieSue

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    Mine was also 13 at diagnosis. Tough tough age. We've tried to approach things as a team, she and I. So it's not all her responsibility but we check each other. That seems to have worked for us. She's 18 now and does do things mostly on her own but she'll still ask for opinions and I still keep an eye on things.

    When she gets very frustrated with diabetes I just let her vent. She knows it's not going away but she just wants to be heard. And I tell her I'm sorry and that I know it sucks.

    When she gets up into the higher 200's she does get very emotional and weepy. Just this weekend I was out of town for the day and I got an "I miss you Mommy, please come home text." Yep she was 290. Once she came back down she was happy I was gone again :)

    Once you start getting through all the "firsts" things do get better, not always easier but better. You have an idea of what's going to happen and you know what worked or didn't work the last time. First time eating out, first sleepover, first day of school, first "HI" on the meter. All stressful but as you get more experience under your belt they do become easier.
     
  13. Lysa916

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    Thank you! I didn't mean to come off as I was leaving my child to fend for herself. She wanted to learn how to test her own blood. I allow her to choose food that she would like to eat. If she chooses a treat then she needs to know that the rest of her meal will be protein and produce. She is adjusting. It is also helpful that a classmate also had T1D.
     
  14. Lysa916

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    It is a very emotional time in her life. High school next year. 13 is tough all on its own.
     
  15. Lysa916

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    Sorry that I sounded daft. I know how to read a product label. I was referring to fresh produce. None of the site agree on the number of carbs in a cortland apple(for example).
     
  16. nanhsot

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    The only way to be truly precise with things like that is a food scale. Carb factors, weighing the food. There are several great threads here on this subject and many who can help you (I'm not one...we do have a scale but use it rarely these days).
     
  17. Christopher

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    That is what is so great about a food scale. All you would do is take your courtland apple, put it on the scale and it will tell you how many carbs are in it. I use the Salter 1450. It has a huge database of different foods built into it.
     
  18. Lysa916

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    It would never have occurred to me that a scale would give carb count also. Good stuff!
     
  19. MomofSweetOne

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    Welcome....and we wish you didn't need to be here. You've joined at a really rough age for management. My daughter was 11 at diagnosis, and looking back, that year was so calm, though it certainly didn't feel like it at the time. The hormones do wicked things to the BGs and insulin needs in a girl in puberty rise and fall very quickly. If your daughter is open to it, a CGM helps tremendously and gives the kids freedom to relax from being focused on D so much. My daughter wears one 24/7 and doesn't like the two hour start-ups without being monitored. The hormones do calm down; it's getting easier here bit-by-bit as the growth slows.
     
  20. Lysa916

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    I have to admit, reading though some of the different thread kind of freaked me out! I was optimistic about managing my daughters diabetes. And then I read all the problems. My daughter is going to Washington DC with school. We go to Six Flags several times a summer. We spend a lot of time out and about. Carnivals, fairs, the park, the beach. I need to buy a suitable bag to carry all her supplies. What if I forget a supply? what if a place doesn't allow us to bring supplies in with us? There is so much more involved then I initially acknowledged.
     

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