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Thread: My 7 year old: Diagnosed Today

  1. #1

    Default My 7 year old: Diagnosed Today

    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. #2

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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.
    Type 1 diabetic since November 6, 2013 at age 18. In DKA at diagnosis; Glucose 560's; Diagnosis A1C 11.7
    Current medication: Pumping Novolog with TSlim

  3. #3

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    Quote Originally Posted by MichelleW View Post
    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.
    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!!
    Snowflake
    Mom to
    DD TR, age 7. Dx-ed with T1 04/04/2012. Omnipod & Dexcom user. Dx-ed with celiac 12/23/2013.
    DS1, age 5.
    DS2, age 1.

  4. #4
    Join Date
    Feb 2014
    Location
    Bay Area, California
    Posts
    237

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    Quote Originally Posted by MichelleW View Post
    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.
    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.
    Mom to a sweet 14 year-old child, was diagnosed at age 10 on 12/4/13
    Started with Humalog and Lantus.
    Diagnosed with Celiac on 2/18/14
    OmniPod since 3/26/14
    Dexcom G4 since 4/11/14

  5. #5

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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. #6

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    Quote Originally Posted by MichelleW View Post
    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.
    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/
    Snowflake
    Mom to
    DD TR, age 7. Dx-ed with T1 04/04/2012. Omnipod & Dexcom user. Dx-ed with celiac 12/23/2013.
    DS1, age 5.
    DS2, age 1.

  7. #7

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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. #8

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

  9. #9
    Join Date
    Feb 2014
    Location
    Pacific NW
    Posts
    1,314

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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...
    Mother of two wonderful daughters:
    *T age 14 - dx'd 01/24/2014 at age 11.5
    MDI: Humalog & Lantus 01/24/2014 - 06/04/2014
    Dexcom: G4 05/02/2014; G4 with Share 03/11/2015; G5 10/07/2015
    OmniPod with Humalog 06/05/2014; Apidra 09/12/2014
    *C age 27 - reactive airway disease; married 08/30/2014

  10. #10

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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.
    Mom to T1D 7-year old son
    Diagnosed: 12/01/2016 at age 7; A1C at Diagnosis: 14.2
    Prescriptions: Humalog and Tresiba
    Devices: MDI, CGM: Dexcom G5
    Diet: Low Carb High Protein
    Current A1C: 5.7

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