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My 7 year old: Diagnosed Today

Discussion in 'Introductions' started by MichelleW, Dec 2, 2016.

  1. MichelleW

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    It's been 8 hours since his pediatrician walked back into the room with the referral card in his hand. My son is sleeping restlessly now. My eyes are burning with exhaustion and my mind teetering between disbelief and depression. Will he be able to have a wife and children? Will he be able to go away to college? Will he cry and ask how much longer? What quality of life will he have to have to fight for survival every day? I'm just heartbroken.
     
  2. Mimikins

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    It sounds like you're going through a really difficult time. Diabetes is tough, but both you and your son will learn how to overcome its hurdles.

    Though having diabetes at all is awful, being diagnosed now is so much better than a few decades ago. Many of us use technology like insulin pumps (which make taking insulin as easy as a few pushes of a button) and continuous glucose monitors (so we can see roughly where our BG is and hopefully prevent severe hypoglycemia/hyperglycemia), and the internet has given many of us the opportunity to connect with others on support communities like this forum. Many of us are thriving with diabetes (a US Supreme Court justice has T1, so do many actors/actresses, athletes, and musicians), have gone to college, are married, and have delivered healthy children (one of our more active members just posted an update on her pregnancy on another thread).

    The first few months are the hardest. I cried so much those first few weeks that my CDE joked that during my next meeting my goal is to only use two tissues instead of seven. I'm still fairly new to the diabetes game, but it gets so much better once you overcome that huge learning curve. I still have my bad diabetes days, but the vast majority of days are good, and ultimately diabetes has forced me to become much healthier than what I was before my diagnosis.
     
  3. Snowflake

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    Hi Michelle, Welcome and I'm so sorry you and your family have had to join our club! I want to put your mind at ease that, while diabetes is an incredibly difficult burden, our kids with diabetes THRIVE. My daughter is a precocious, happy, highly social 6 year old. She plays soccer, does gymnastics, and collects American Girl dolls and Junior Ranger badges. She is a totally normal kid. We parents spend a lot of time thinking about diabetes, but she really doesn't -- if we have to change a pump site or treat a low, she pauses for a few minutes, handles it, and moves on. Diabetes makes some things, like playdates, a little more complicated, and it makes family life a little less spontaneous, but your kid can and will have a great life with diabetes!

    It's totally ok to grieve. I was beyond shocked when my daughter was diagnosed -- I truly could not believe I was being asked to inject my baby 6 times a day! -- and it took months to get past that. Diabetes is mostly part of routine and the fabric of our lives now, but I do still have moments where the amount of work it takes to keep our kid healthy and happy seems a little unreal and unfair.

    Please keep coming back here with questions as you navigate the first weeks of life with diabetes. I know it all feels terrifying and overwhelming but it's totally manageable. Good luck!!
     
  4. Cheetah-cub

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    Yes, he will be able to have a wife and children. Yes, he will be able to go away to college. Yes, he will probably cry..., and yes, with good management, he will enjoy a quality of life as any other boy.

    My daughter was diagnosed on Dec 4th 3 years ago at the age of 10. It was totally shocking and traumatic for the whole family. I cried everyday for at least a month, couldn't sleep and eat, I lost a lot of weight. But we bounced back, my daughter is doing well at school, doing sports, participate in school musicals, we continue to enjoy traveling, and she is happy and even healthy.

    It will take a while, and it is okay to give yourself time to grieve and time to learn to manage the disease, but your son and your family will be fine too.
     
  5. MichelleW

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    It's better today.

    My son's BS is down from 560 to 272. He already looks better and is doing his own meter readings. The tools the Endo provided (after spending 4 hours with us this morning) are much easier to use and less painful than what the pediatrician had last night. Seeing my son less sick so soon eases the distress we all felt.

    I was really worried about school too but his school has already reached out to share that there are other Type 1 students and that the staff is trained.

    Thank you for the responses. Day 1.
     
  6. Snowflake

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    I'm glad to hear that! The hospital equipment is practically medieval compared to what's available at your corner Walgreens. :)

    I'm glad your son is doing better and hope you check in periodically to let us know how things are going!

    p.s. When you have a chance to catch your breath, check out the JDRF Bag of Hope for newly diagnosed kids, http://cc.jdrf.org/bag-of-hope/
     
  7. MichelleW

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    We've gotten through 2 full days of treatment now. My son ate 2,400 calories today and went on a play date to look at Christmas lights and get an ice cream cone. He explained to his friend what Diabetes is and showed her his testing and insulin kit. On the way home in the car he talked about writing a diabetes cookbook (he loves cooking) so that he could help other kids. It was sweet and consistent with his personality.

    Over the last 48 hours he has also made a couple sad comments. He has said 1) he wants to go back to his old life and 2) he just wanted a happy life and not this. On reflection I think those comments were a direct reaction to one test we struggled with which resulted in 4 failed finger pricks and to our visit with his grandparents on day 1 to share the news.

    Something that has helped has been my sincere employment of a superhero analogy. I tell him that watching the insulin's effect on him will be like watching a superhero's, like Spiderman's, transition. He'll be getting stronger, gaining weight, have more energy and a sharper mind. We also picked out a Spider-Man themed dog tag medical id which he is excited about.

    My other strategy is to find ways to minimize the amount of time we actively manage and discuss his Diabetes. That means we should do the reading/calculate/count/shoot as quickly as possible then move on - my goal is getting the total time down to 30 min/day, today it felt like we spent more than 4 hrs on it. I think key to that will be a consistent meal plan, adding in better devices, and staying busy with his activities so that Diabetes comprises a smaller fraction of his life.

    So that's where we are at right now a couple days in.
     
  8. MichelleW

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    Thank you - I signed up for a bag and a mentor through the link.
     
  9. rgcainmd

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    To add to the excellent advice and support you've received above, I'd recommend that, once the dust has settled a bit more, you look into the ADA's resources RE management at school and get a sound 504 Plan in place.

    It sounds like you and your son are doing an excellent job!

    BTW, welcome to the club no one wants to join! Hang in there...
     
  10. MichelleW

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    I just wanted to thank each of you - these responses and the entire forum have helped launch us up the learning curve.

    Our Endo agreed to order the Dexcom G5 for us next week and then the Omnipod a couple weeks after. Right now my son is getting a finger prick or insulin shot a bare minimum of 56 times per week. That's at least 56 times per week Diabetes is jabbed into his consciousness and with that we are only getting minimum monitoring. I'm really optimistic that within just one month with the CGM and tubeless pump we will get that down from 56 to 25 with the added assurance of continuous glucose monitoring.

    Meanwhile he's getting healthier every hour let alone day. He's gained a pound after just 72 hours of insulin and his BS last reading was 250. He won't stop eating either. For the last 3 days he's eaten an average of 2400 calories per day. We've been on 2 play dates and his previous social moodiness has abated. Even better, we met with his school nurse last night. She is a former ER RN and is at the school full time. She assured me the school would get him caught up when he comes back and not to worry about absences or homework. She also got me through all of the logistics and shared that another student his age is also T1D and will show him the ropes at school with lunchtime checkins. My son seemed interested in making this new friend and it helped him feel more normal.

    Today we meet with the dietician and I should be receiving a big box from Amazon with the books you've all recommended. What my son is excited about today is receiving the 2 new medical alert dog tags we ordered.

    Life goes on.
     
  11. quiltinmom

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    My son was diagnosed at age 7. I think it was the easiest age to have a diagnosis. He was old enough to understand what we were doing, but young enough not to resist all the changes. It's hard with 3 year olds because they scream and cry, and teenagers are, well, teenagers. They feel the life interruption a lot more. So if you're counting blessings, there's one.

    One really important thing to know, that I wished I had understood much sooner: his attitude about diabetes will mostly come from your cues at this point. If it's a huge burden to you, it will be for him too. If you can be upbeat and positive around him (which you have already done a great job at, I can tell) he will do much better. Keep pointing out all the good things. Make them up if you have to. Lol. Just tell him you love him every day. Cry when he's not around, if you have to, but never, ever, never blame yourself for any diabetes related thing. Never beat yourself up over a missed bolus or bg check, high or low bg. You're doing so awesome already!!! We all make mistakes.

    One more thing. Don't feel like you have to learn everything right now. Focus on what your Endo tells you to do, and don't try to run before you walk. You will know when you're ready to step up your game a little bit. Slow and steady! He is a superhero and so are you! You can ask us anything. We are here for you!
     
  12. rgcainmd

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    My daughter has been utilizing the Dexcom CGM (G5 currently) and the OmniPod pump for over 2-1/2 years give or take, and I can't even begin to sing their praises. True game-changers, both of them. If we could only have one (pump or CGM) we'd choose the Dexcom, and I'd be surprised if the vast majority of parents didn't agree.

    You and your son are definitely ahead of the curve at this stage in the game! Wonderful!
     
  13. MichelleW

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    I don't know how to multiquote my replies but I've reread each word of your responses multiple times. Thank you!

    It's now been 1 week since that first urine test at the pediatrician's. Last night my son's BS finally broke 200. I saw that 195 on his meter and was just jubilant. My son thinks I'm a little weird but that's ok. He's doing great! Maybe it is the perfect age to be diagnosed because the adjustment has been smooth. He'd been so sick for so long that I think this resurgence of energy and high spirits with the insulin has made the news easier to take. Before bed last night he was giggling and telling fart jokes.

    He went back to his Krav Maga class last night too. I'd talked to his coach earlier and brought everything I'd need for a low. My son had a great time: enthusiastic and chatty. It left me with more confidence about his return to school tomorrow.

    The diet changes haven't been too hard either. He's so hungry now that it's easier to feed him than it had been. We stocked up on heart healthy foods, recommended by his amazing dietitian, like omega 3 eggs, fish and nuts. He has a free food trail mix we made together: nuts and sunflower seeds which he eats in half cup portions. I'm using the LoseIt app to track his food. I keep telling him this is how elite athletes eat and that's all it's taken to address the detailed tracking.

    All that said I do sometimes feel overcome with worry, fear and grief. I keep it to myself and I remind myself that this is just our life. What we need to do is make the best of it. I'm really hoping to find some local T1D friends and will look for support groups and sign him up for the summer camp.

    Week 1 Complete.
     
  14. Snowflake

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    I'm so glad to hear your report! One of the silver linings that we delighted in after diagnosis was that our daughter started eating again. Even the first night in the hospital, within hours of her first insulin shot, she wolfed down a hamburger and really seemed to relish her food after weeks of barely touching it. Even though we were devastated by the diagnosis, it was great to see how quickly insulin turned her back into her old self -- almost like magic!

    Since you mentioned that your son likes superhero comics, I have to plug the children's book "Even Superheroes get Diabetes," https://www.amazon.com/Even-Superhe...sr=8-1&keywords=even+superheroes+get+diabetes I would hold off giving it to him till he starts pumping since it has a plotline involving a super pump. It's one of the more charming, whimsical kids books about T1D.

    Good luck with Week Two!
     
  15. MichelleW

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    Thank you, Snowflake. We read the Superhero book yesterday and even though he doesn't have a pump yet, he really enjoyed it.

    I'm having a really hard time tonight/this morning and can't sleep. I'm just so worried about him and what the future holds. It isn't about finger pricks and shots. It's the fear that he will have extreme lows or highs. It's the fear of how this will affect his quality of life. Ive read through so many threads and forums and I'm overwhelmed with grief.
     
  16. rgcainmd

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    I think a lot of parents feel this way for awhile after diagnosis. Highs and lows are par for the course with T1D no matter how expert one becomes at managing this disease. But, when motivated, parents of CWD can learn more every day about how to minimize the frequency and severity of these highs and lows. I just think it's important to realize that, no matter what you do (and especially once your child is no longer honeymooning) highs and lows happen. You correct and move on. You learn to find a balance (and learn to continue adjusting that balance point over time) between staying within whatever BG range you decide upon and living your life. Everything will be OK as long as you respect the fact that D doesn't always follow the rules, and that you need to keep an eye on it. The Dexcom CGM goes a very long way in helping you keep a watchful eye on things.
     
  17. Sarah Maddie's Mom

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    Well, I'll just throw this out there because I noticed that your son's dx date is close to my now 18 year old's and I realize that I let December 4th roll by without so much as a second of remembering that lousy day 14 years ago when we landed in the hospital after a routine visit to the pediatrician. Now she off at college 6 hours away, majoring in Chem, playing her guitar, making friends, driving, planing to study abroad at least one semester, maybe two. Your son will be fine :) It's not easy for them, or for us, but your kid can have a perfectly normal time of it.

    One day at a time.
     
  18. Cheetah-cub

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    Your diabirthday is Dec 4th too?! My daughter was diagnosed on Dec 4th 2013. I don't think we will ever forget this day. My daughter makes us take her to her favorite steakhouse to mark the anniversary every year. We were just there last Sunday.
     
  19. MichelleW

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    Since my last was so full of despair, I wanted to make a quick update. By the way I think he's going to love the idea of going to his favorite restaurant on his DX- anniversary.

    Friday was his first day back at school. His numbers were all over the place, between 79 and 220. The 79 came after lunch and recess because he only ate half the lunch his insulin bolus was calculated for. It's a small school with a full time RN, 3 other Type 1's (in other grades) and great families. I think school is going to be a great place for him. I had several parents text me last night to say their children were happy to have him back and that he was happy to be there. In this respect, we are lucky.

    Tonight he has his bestfriend coming over for a sleepover at our house. Another step towards normalcy.

    This morning before he woke up, I opened up Excel and set up a workbook with extensive graphs to track everything. It was therapeutic for me but also helped me see some early patterns from this first week of tracking. I'm only a third of the way through Think Like a Pancreas but have gotten some useful ideas from the author. If any of you have time to reply I'd be interested in what metrics you track in addition to carbs, BG, and dose. I've added in activity minutes and am wondering if body temp or pulse would help predict metabolic changes around the time of sports activities to anticipate lows. I'm convinced there has to be a formula to unify everything. ( I know what you're thinking but i need to believe this.)

    One last thing, we received our Bag of Hope from JDRF last night, delivered priority mail. He was so excited about getting a package and opening up the backpack. The teddy bear was a hit. He hugged it immediately, was fascinated by the patches where shots are given on the bear, and slept with it last night. I am so thankful for that box. JDRF has my enduring support and gratitude.

    And now time to convince a 7 year old to clean his room.
     
  20. sszyszkiewicz

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    Hi MichelleW,

    My son was diagnosed just a little over 3 years ago, and as I read your posts it all comes flooding back. The first few months are the absolute worst. The kids do better than we do!

    You are doing all of the right things!

    My advice/observations
    1) Learn learn learn. Knowledge is power withT1D. It truely is.
    2) Respect T1D but dont fear it
    3) I have found it useful to develop an attitude.....me vs T1D...and I intend on winning. Bring it T1D. You will not visit any further harm on my child.
    4) The technology available to us is amazing. Armed with yiur Dex and Omnipod you will be able to do great things for your son.
    5) Better tech is on the way. There is an amazing amount of progress being made on tech that will allow the pump to communicate with the Dexcom and automatically dose the appropriate amount of insulin. You can find tons of info about artificial pancreas or bionic pancreas.
    7) My son ate us out of house and home once he was diagnosed. That is normal. His bidy was starved and was catching up.
    8) You have already noticed how much healthier your son looks since insulin started....it gets better!
     

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