- advertisement -

Newly diagnosed-What do you wish you knew in the beginning?

Discussion in 'General Discussion' started by gkwzcohen, Feb 17, 2016.

  1. gkwzcohen

    gkwzcohen Approved members

    Joined:
    Feb 17, 2016
    Messages:
    10
    My son (12) was diagnosed 12 days ago on 2/5/2016. I am still trying to process everything. There is so much information out there but I just want the basics right now. I'm not familiar with all the diabetic lingo. I was giving him is first dose of insulin 30 minutes after being told he had T1. What is the one thing you wish you knew in the beginning that you know now? I'm overwhelmed and exhausted! Thank you for any advice you may have :)
     
  2. njswede

    njswede Approved members

    Joined:
    Feb 9, 2015
    Messages:
    385
    That you never going to get it 100% perfect and that it's OK.

    Hang in there! We've all been there. Things will go back to "normal", albeit a new normal. Make sure your son understands that he'll be OK and his T1D won't stop him from being happy and successful in life.
     
  3. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
    482
    Welcome! I'm glad you found this site so quickly

    Two things: big picture, know that you will figure this out, and that, while diabetes is hard, it's also manageable.

    As for what I wish I knew about how to manage T1: I wish that we'd been sent home from the hospital with a dexcom continuous glucose monitor. Once we got that, I gained peace of mind, and I also learned a huge amount about her blood sugar fluctuations. Many doctors don't mention it right this option right out of the gate; in our case, we learned about it on a Facebook group and pushed for an rx.
     
  4. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,367
  5. sszyszkiewicz

    sszyszkiewicz Approved members

    Joined:
    Dec 24, 2013
    Messages:
    842
    Your life is going to be different. Not horrible. Different. Most people will not understand.

    Insulin is not asprin. It is something to be taken seriously.

    Throw yourself into the education. With T1D information is power. Let it consume you.

    When doing fingersticks make sure the finger is clean. Be really particular about cleaning the finger. Damp washcloth. Not alcohol. Clean fingers make it so that you get reliable readings and you will make better decisions.

    If you are able, and your son will wear it, get a Dexcom. They should not send us home without one.

    You will get through it.
     
    Last edited: Feb 17, 2016
  6. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Read and ask questions, if there is a term/ idea you don't understand ask.
     
  7. quiltinmom

    quiltinmom Approved members

    Joined:
    Jun 24, 2010
    Messages:
    1,188
    Hmm...I can think of a huge list of things. I will try to pick the best ones. :)

    1. Blood sugar numbers are just numbers. Usually it's nobody's fault, so don't blame yourself, or your son. Just correct and move forward. You can't take it personally. (So often I find myself saying, "the good thing is, tomorrow is a new day.")

    2. Pumps and cgms seem so very expensive. At first I wasn't sure we could afford it. We started pumping after over a year and a half--total game changer. I waited way too long (6 years) to push for the cgm. Move forward at the pace you are comfortable with. But don't shy away because of the cost, like I did. It is well worth the cost.

    3. Take what your friends say worth a grain of salt. Unless they know type 1 diabetes from first hand experience. You'll probably start to get all kinds of comments and articles from well meaning friends and relatives. Just be kind, smile and nod. They are doing their best, too.

    4. Take it one step at a time. You don't have to know everything all at once. When you are ready for the next step, you'll know. There are many good books about diabetes, but don't feel like you have to read them all at once right now. Call your health care team any time you have questions, day or night. That's what they are there for. :)

    5. Your son is 12. This can be a hard age to be diagnosed with a life changing condition. Try to keep things positive. Tell him often what a good job he's doing, and a little reward (not to be confused with a bribe) now and then isn't a problem, in my book. :). But don't let him use diabetes as an excuse. He can still do everything he always wanted to do, just now it takes a little more preparation.

    Last, feel free to ask any and all questions here (no matter how basic they may be), or vent, or share your little successes. We are a unique group of people who really understand what you're going through, something that may be hard to find among your loved ones. It's so important to have support.

    Diabetes camp is Ds's favorite, second only to christmas. I highly encourage you to see if there are any camps that are feasible for you/him. But looking into that can come a little later, after the ground has stopped spinning.

    Ok,I'll stop now. I hope I haven't said too much.


    You will get through this. It won't always be so overwhelming. We are here for you.
     
  8. MomofSweetOne

    MomofSweetOne Approved members

    Joined:
    Aug 28, 2011
    Messages:
    2,739
    I wish I'd asked for a Dexcom immediately. We waited a year, but like others have said, it's a life changer.

    Discovering Think Like A Pancreas at a library was a banner find for me. I'd been told at dx that "you'll figure it out" (about how to adjust insulin doses). To have a manual that explained step-by-step how to adjust ISF, I:C, basals, etc. was beyond a relief. I suddenly understood what the CDEs were seeing in the numbers, and it launched me into quickly and comfortably analyzing and adjusting as needed.
     
  9. gkwzcohen

    gkwzcohen Approved members

    Joined:
    Feb 17, 2016
    Messages:
    10
    Huge help! Thank you
     
  10. DiabetesMama

    DiabetesMama Approved members

    Joined:
    Sep 4, 2015
    Messages:
    258
    I totally wish we had the Dexcom system when we left the hospital. We waited until about a year before we even started to think about pumps or cgms, but looking back now I should have at least asked for the cgm sooner. The group we are working with wouldn't allow new patients to start pumping until you had done MDIs, (or multiple daily injections) for a whole year. So we did that and then we were ready for a change. I was kind of upset that we had to wait that long at first, but now I realize that they wanted us to be able to figure things out without a machine first, that way we KNEW what we were doing. Now it is just second nature to us. The sleep thing is the hardest. I always said that the hardest thing about having babies was the lack of sleep. Well, little did I know just how little sleep I was eventually going to get. The Dexom does give peace of mind though. Eventually, your body does get used to the lack of sleep somehow and you just function. I ALWAYS try to get a nap in the late afternoon and that seems to help. I would also say that reading several good diabetic books is a great thing too. They sent us home with the Pink Panther book and I read it cover to cover, ordered the bigger one and finished it, ordered the one about pumps and cgms and read it. I spent a lot of time reading and staying on this site. Now I feel pretty confident with his care, but every now and again, the D-monster throws something new at me and I start asking a lot of questions again right here. This is the BEST site there is for support. Take care, don't give up, take deep breaths and just know it is going to be ok. It does take time to find your new "normal", but it does happen. I promise. You and your son will be in my prayers as you battle this thing out. Hugs for you and your family. :triumphant:
     
  11. susanlindstrom16

    susanlindstrom16 Approved members

    Joined:
    Nov 29, 2012
    Messages:
    371
    That eventually, you really will get to a point where everything is completely second nature to you and your son. It's so much to learn at first and very overwhelming, but it won't always be that way.
     
  12. dshull

    dshull Approved members

    Joined:
    Sep 24, 2012
    Messages:
    114
    There are a lot of things I wish I knew in the beginning; there was so much to learn. The one thing I want you to know is that it WILL BE OK. And that someday, your son will simply amaze you with how aware and responsible he is. I don't know how old your son is. Ours was 7 when diagnosed and is 11 now. And he simply amazes me everyday. With how much crap he puts up with and takes it in stride. A sub nurse complimented me the other day on how impressed she was with his level of responsibility and I had to take a step back for a second and say, yes, HE IS AMAZING.

    At the beginning, I thought he would never be able to take care of himself, that my husband and I could never leave him with a babysitter. He now rides his bike to school and around town without us. He has sleepovers at friends houses. He goes to camp (both D and non-D), plays travel sports, has tons of friends. Your son will also be able to do all of these things, and more. Hang in there. It ain't easy!!
     
  13. gkwzcohen

    gkwzcohen Approved members

    Joined:
    Feb 17, 2016
    Messages:
    10
    Thank you to everyone. I'm becoming more relaxed so a bit better. My son is taking it so much better than we are :) Everything started off so bad that it took a while to even start to process. Son has been seeing a ped GI for several years for Celiac. 6 months ago he started to lose weight-even on a very high caloric diet. 6 weeks ago he was down to 1% BMI and 3% body fat. GI sent us to ped Endo in same building. They sent him for so much blood work we had to schedule for 2 days. 2 weeks later they called and told me everything was normal-all his labs and bone growth xray. So back to the GI we went. She asked me what endo told me and I told her everything was normal. She by chance looked at the lab results and noticed his BG was 240. So she sent us the next day for fasting BG. She was so worried she called to make sure we had it done. She called me at home at 6am and told me it was 395. Told us to head over to hospital and endo would meet us there. On way over endo called and told us to go to their office. We were put in a room and then nurse comes in and asked me why we were there. I told her we were told to come in and she then said "Oh yeah he as Type 1." That is when my head was about to explode. Asked her why she told me all labs normal and she told me to move on!!!! Next the educator came in and proceeded to tell me all about Type 1 like I was in medical field. He thought we knew a long time ago he had Type 1 and was there as a refresher. We proceeded to be "educated" for the next 4 hours in their office and I had to give him 2 shots before we left. This was a Friday afternoon with no information other than to give him shots when he ate. On way home I called a friend of mine who has a dd with T1 and she told me to see our local endo. Everyone was shocked he wasn't put in hospital. Needless to say we started with new endo that following Monday and love the doctor and his staff. They started us from square one to make sure we were as comfortable with it all as we could be. We are now 2 weeks in and I'm still overwhelmed but getting a bit better. This forum has helped so much so Thank you again.
     
  14. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
    482
    I've read a lot of stories about pediatricians missing obvious symptoms of T1 like extreme thirst, but this takes the cake and runs away with it. I can't believe an endo looked at a lab with a 240 bg and said everything was normal! This sounds worthy of a complaint to the licensing board!

    I'm so sorry that your family had such a rocky road to diagnosis, but I'm glad you finally have a diagnosis. The early weeks are overwhelming, but it does quickly become routine. Come here with questions, and, now that you have a good endo, don't be shy about peppering the endo's office with questions either. We were on the phone with our CDE all the time in our first weeks after diagnosis! :)
     
  15. DiabetesMama

    DiabetesMama Approved members

    Joined:
    Sep 4, 2015
    Messages:
    258
    So glad you are already feeling a bit better about things. Kids really do surprise us. Our son was diagnosed at age 11 the second day of July 2014. We were so shocked because no one in our family even has diabetes. All I could remember that fourth of July as we sat next to our fireplace in the back yard as we watched fireworks was how everything was so different, and how I made sure he didn't have "too many" marshmallows. I was a wreck. He started to feel much better as soon as he began to get his insulin shots and I was so surprised how resilient he was and how he bounced back from such a horrible diagnoses. He has always been my inspiration after that July day, and he always will. Just wait until your son just amazes you with his knowledge! Hang in there, it does get much better.
     
  16. StacyMM

    StacyMM Approved members

    Joined:
    Oct 22, 2010
    Messages:
    1,039
    I wish someone at the hospital had said, "Let me tell you about the Dexcom system..."
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice