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Daughter just diagnosed-scared!

Discussion in 'Parents of Children with Type 1' started by Melanie1216, Jun 5, 2013.

  1. MomofSweetOne

    MomofSweetOne Approved members

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    Her insulin needs are probably dropping because of the most unromantic honeymoon imaginable setting in; as her pancreas gets support from the injected insulin, it is able to produce more by itself again for a while.

    Probably the biggest mis-information I walked away from the hospital with at diagnosis was that soon we'd get her insulin levels adjusted and she'd be stable. HAHAHAHA! We constantly adjust. These days (puberty) I define stable as whether we're playing with her insulin fast enough to keep her in range on the CGM. Last night, she went up another 100 points in the hour after I gave her a correction dose, so the challenge continues...

    In the early days, most people are in daily or frequent contact with their CDEs. I would highly encourage you to read Think Like A Pancreas while letting them carry that weight for now. Our hospital didn't really teach us how to adjust the doses on our own, and when I read Think, I felt so much better understanding what they were seeing when they changed doses. I disliked the vulnerable feeling of being dependent on someone else to know how to care for my child; it was one of the hardest parts of diagnosis for me.
     
  2. Sarah Maddie's Mom

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    Let me echo the earlier poster who suggested you get and read Ragnar Hanas' book. I think that folks often aren't really taught how insulin works, how long and with what peak and all the critical timing issues that one really must understand if you want to be able to understand and to some extent predict your dd's blood sugar numbers.

    http://www.amazon.com/Diabetes-Children-Adolescents-Young-Adults/dp/1859593372/ref=pd_sim_b_37
     
  3. nanhsot

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    It irritated me when people would say "it'll get better" or "it could be worse", because right now, you just need to grieve and wallow a little bit. Unfortunately you don't have that luxury, because you have to keep soldiering on, and you will. It's a weird image we project, on one hand we want everyone to see our kids as no different than anyone else, on the other hand we're behind the scenes dealing with a 24/7 struggle. It's a weird dichotomy there.

    Get used to the strange comments, and learn to just let them slide off your back. I had an EMT last night ask me if he'd outgrow it! He asked if he had the gestational or the juvenile type (I have a son!). Even within the medical community it's not always understood!

    What you are seeing with the lows is very normal. There is a period called honeymoon (I'd really love to know who named it!) where the body is so relieved at getting some assistance (via injected insulin) that those beta cells start working again and start spitting out insulin. You'll see her insulin needs drop, sometimes dramatically. Just know what to do when she is low and be in regular contact with your endo so you can lower her insulin. Her body will particularly try to regulate at night, so it's good you are checking. It sounds like she definitely needs to lower her basal so be in contact with your endo team.

    I've never dealt with D in a child that young but even for an older kid they do learn to sleep through night checks. Mine never did learn to sleep through treatments though (shots or glucose) I typically take in a little book light or head light thing so I have just enough light, I get everything ready and just ask him for his hand, he wakes enough to give me access but is still basically asleep. You'll find tricks that help. Try using the toes if the hand remains problematic.

    You're doing all the right things, asking questions, pursuing time off, taking care of yourself mentally. Hang in there, it will get better, not overnight, but gradually. You'll have good days and bad, you'll cry unexpectedly, but then you'll wake up and be brave with your daughter and the two of you will be OK. It'll be OK, soon.
     
  4. mamattorney

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    I think everyone has given you great advice and that you are doing all the right things. I'm glad that your school nurse is supportive and knowledgeable, that helps a lot.

    It's funny because when my daughter was diagnosed, people came out of the woodwork to give me names and numbers of people who either have type 1 or whose kids have type 1 and while I was appreciative, I didn't call them either. For some reason, this type of forum seemed like a better choice for me.

    One thing I remembered that I felt and someone else touched on it too - is in the very beginning, I felt very dependent on the nurses. I felt like I was just a record keeper and a rule follower. I would take my daughter's BG, count carbs, apply the formula and record the information. Then, at the next check I would do it again. I knew that it wasn't always working (she was high for almost every check the first week), but I was not knowledgeable enough to DO anything about it or to know why they were doing what they were doing.

    Knowledge is power (of course experience helps more, too, but you can't do much about that),and I think you will feel a greater understanding of the process after you've had your educational classes. And after that, it helps me to read a ton of literature, both educational, inspirational and things like blogs - just to see how people live "a day in the life".

    With your comment on past depression though, I would make sure to keep close tabs on yourself, too. If you feel yourself head back around that "bad" corner, get help!
     
  5. momoftwingirls

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    Sorry you had to join this group! I am new here myself my dd was 21 month old when she got dx about 4 month ago. I think it's normal what you are going through. I know you don't wan't hear it now but it does get better over time and day to day. Your dd is older is in a way it might be easier and in other ways it might be harder since she knows there is something wrong.
    Hang in there and this forum is great don't hesitate to ask questions they have helped me so much:)
     
  6. Mish

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    It's not that you won't see lows, you always will. But it won't feel like it does right now for you.

    Each time there is a low like this you're building up knowledge as to what happens and how to handle them. In a year or so, you'll have your child yell "I'm 65." and you'll yell back "take a juice" and neither of you will really stop what you're doing, and that will be the end of it. So it's not that you won't see them -you will, sometimes more than one a day, sometimes you'll go a week without. They just won't freak you out the way they do right now. :)

    I remember soon after DX I didn't want to hear from family or friends that it was going to be all right. How did they know? That's what I wanted to say. But it did help to hear it coming from other parents of kids with type 1. I really needed to hear it from others who have been there and come out on the other side in one piece.
     
  7. KatieSue

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    The first highs/lows are scary. Once a few happen you know what to do, what worked last time, what didn't and it makes it much less frightening.

    The first time we got a HIGH reading on the meter I had a heart attack. I grabbed the back up meter and literally ran down the block, she was at her dads, to retest. Called the on call Endo in a panic etc. The second time we both just looked at each other and said "crap". But we know what to do so it wasn't so scary. Not that you want it to happen but you don't feel so helpless when you know what you can do to fix it.
     
  8. TheFormerLantusFiend

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    CWD does a poll every year asking who's seen a counselor or therapist in regards to diabetes.

    Most of the people haven't been in therapy to deal with diabetes, but of those who have been in therapy to deal with diabetes, the vast majority found it helpful.
    http://childrenwithdiabetes.com/poll/poll20120627.htm
     
  9. missmakaliasmomma

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    What you're feeling is so completely normal, take it from us who have been through it too. We've ALL felt this way. Sometimes we still feel this way time to time, at least I do. It's been over 3 years now since my dd was diagnosed and there are some days I'm at my wits end with it, but it really does get so much easier as time goes on. You'll still have your good and bad days though. It's never perfect but it's important to relax and realize you're doing the best you can with what you have. As someone else stated, and I will second it- the drs tell you what to do in the beginning- when and how much you child should eat. That changes and you'll have more flexibility.

    I'm pretty sure you said you don't know the names of the insulin she's on but when you get a chance to look.. I'd recommend that if she's on NPH- switch to lantus or levemir eventually. I personally think it gives more freedom. We were like slaves to NPH and it's very unpredictable. Switching to lantus was awesome, then switching to the pump was even better although we're still trying to figure it out.

    It's alot to take in. I can honestly tell you I really don't sleep. The most I sleep is 3 hours in a shot. I get up to test her like crazy. I've gotten so used to it though I function better on less sleep lol. There are times when I cry- sometimes it feels so overwhelming. I also have no one to watch my daughter if I need because I don't feel comfortable with other people in charge of her health. I don't really think any of my family really "gets" diabetes.

    I personally commend you for being able to go back to work and I really understand you not wanting to. I was in college at the time of my dd's diagnosis and couldn't finish the semester because I just was not comfortable (like I said before) with ANYONE else taking care of her at that point.

    I know a lot of you are saying that you hate when people say it could be worse but seriously, it really could be worse. Diabetes is something you can live a full normal life with and is not a death sentence. Of course I wish my daughter didn't have it but I'm thankful it's all she has and it's not worse.

    I don't mind " it could be worse". What I absolutely can't stand is when someone says " omg how awful it is for her to have it at such a young age" in FRONT of her. Like, shut up!
     

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