4am and two weeks in


#1

It’s 4am. My 5yo son was diagnosed with T1D two and a half weeks ago. We check his blood sugar every night at 2am. Today it read 54, so 15/15 raised him to 67, another 15/15 got him over 100. Another hour and it’ll be time to get up and ready, but I

can’t seem to fall back asleep. My nephew was diagnosed with T1D about one year ago. It was a big shock to our family, and now without any other family history, 2 out of 5 kids between us have been diagnosed. We took my son to the hospital a couple days after Thanksgiving. He had been exibiting the three polys (polydipsia, polyphagia, and polyuria). The night before we took him in, he had wet the bed for the first time. I ran to Walgreens early that morning for supplies to confirm what we hoped to deny. The glucometer read 274 fasting blood sugar. My wife fell to the floor in tears. We got him up and checked his ketones…large. We stood in disbelief. How could this be happening again? I called my brother and took him to the same hospital where my nephew had been treated. We were taken straight back at the ER where they confirmed his diagnosis and sent us up to the pediatric unit bypassing PICU. I’ve been amazed at how quickly life can change. Priorities, goals, life expectations…all changed. The little annoyances in life that used to get to me really don’t anymore. I was so worried that my son would fight us every step of the way, with every prick and shot. He has really grown up quickly, and accepted his new way of life better than I could have imagined. There are times when he tells us that “Jesus doesn’t love him, because he made him get shots”, or that he “doesn’t want to eat ever again” to avoid getting shots. Every day it gets a little bit easier though. We try to encourage and lift him up and embrace and grow as a family. He needs more wins right now because I don’t think he could take any more losses.


(joe) #2

@JonGates I am sorry to hear about your son’s recent diagnosis.

as you probably already know, after a few days of insulin therapy, newly diagnosed children will temporarily start making insulin on their own again, many go off insulin completely for a few weeks to a few months, and this is called “honeymoon”. the overnight lows kind of point to “too much insulin” I urge you to stay in touch with the endo or CDE and make the required adjustments.

Your son’s description of having a feeling of being punished brings up my own diagnosis, 40 years ago, I was strong in front of my parents too, because I could sense the anxiety and the pain they were going through. I, however, took their anguish as something I caused because I got sick, and it was the seed of many years of depression for me. From my perspective, to see my heros break down because I got sick, put something in my head that took 20+ years to figure out. The toughest guy in the world, the guy who helped me with everything, was unavailable and angry and sad… all because of me.

I put on a good show, and as a result, I could see that it made him happier. Please be very careful, we sometimes forget how terrifying the world is when you are small.

I am sure you’ve heard it before, but I’ll reiterate, 40 years with T1, I have a family, a job, and I can take care of myself. The only thing T1 changed was they wouldn’t allow me to be a commercial pilot, so I had to find other things I wanted to do. I don’t survive because I am super tough, or extremely smart, gifted, brave, or even strong, I survive because I have no other choice and because I want to. The world doesn’t stop because of my pain, there will always be more losses and sadness, but there will also be the gifts and the joys that make life worth every minute of it.


#3

I’m with you Jon. 9yo daughter, similar dx story 2 months ago. She breaks down about every 3-4 days saying she doesn’t want this and can’t handle it. We just tell her it’s okay to feel that way and she doesn’t have to do any of it alone. We hold her and let her cry and then we get up and start again. It’s so much harder than the carbs, monitoring and injections. It was more often in first month. My heart goes out to you.

@joe I’d love to hear more of your perspective. What can we do to avoid the situation you experienced? Is there anything else, beyond not letting our kids see our distress, that you wish your parents had done for you emotionally when you were first diagnosed? My daughter has already seen some of our anguish. Looking back, how might your parents have assured you it wasn’t your fault?


(Andy) #4

Tell him he’s not alone. I’m a 55 year old man that has had the same exact thoughts. as recently as last Sunday.


(joe) #5

@Gemstone,

such a difficult question. I’ll do my best.

every kid is different, but try to put yourself in a position of being 100% fully dependent on your parents. I know, it’s in the wayback, in the before time. If you had no trauma at all to mark that time it might be difficult to think back - but try.

for me, I didn’t have to get cold before mom put a jacket on me, I got fed before I was hungry, at that age, blissful ignorance to the “how the world is”. at that age, immortality: it will be like this forever. My parents muted the news when I wandered into the room, and I was only really frightened by the dark.

When you got sick you went to the doctor’s office and then you were better. All problems went to triage, and then got fixed. My dad was Superman only better, he was my Dad.

After diagnosis, I could sense his fear and anxiety. Something was really very wrong. What do you mean I am not going to get better? What the hell do you mean by “from now on”? “I swear I am sorry - whatever I did I will never do it again, please fix this”. but those words made him cry. It made my mom cry. I have made it worse. Why are they scared? Why won’t they talk to me (why won’t they say what I need to hear)? Why are the g-damn doctors sticking needles in me. It hurts. I am sorry. Just tell me what I did and I will never do it again.

<to be completely honest, I have had to stop typing to take a break 2 times now>

I think I get it, when I am not complaining or asking when I will get better they don’t cry. I will never ask again. When I am strong, they are strong. I saw my Dad smile when I told him it’s not that bad. I will never ever mention this again, to anyone. It’s something I did, so I will not ever bring it up and maybe they will forget.

Look - I am a Dad now. Nothing puts you in so much risk, nothing can compromise you as much as when your whole heart runs around outside your body. There is no right answer here. They just absorb everything you put out there. everything. They see - everything. They hear - everything.

Among me, my 4 siblings, life in general , and my Dad’s polio, he developed a denial and work-your-ass-off system to deal with all things emotional. He did not take very good care of himself, he never, ever complained, and that became the life model for me,

I don’t know if I had a wish for him to act differently. I am pretty sure that I could spot a fake as well - and that’s also a problematic model. The only thing I can recommend is to not let lines of communications close. you want and need your kid to get better after a diagnosis of t1: they will not. This causes grief. There are stages of grief that need to be worked through, and not “work” like banging in nails, I mean work in talking it through and true empathy. Work like reaching into your heart to grab a handful of the most painful thing in your experience and talking about it, acknowledging it for what it is: not good, not bad, but just how it is I guess I could have used reassurance in my life that I didn’t cause this, that it can’t be cured, but I get to decide when to do something about it.

Emotional stability comes from directly addressing the uncomfortable stuff. I simply don’t know how to tell others how to do it. I can tell you if you are smart and stubborn, it will take a very long time. I know how bad you don’t want your child to have pain, but the truth is they have pain, it’s not the what anymore it’s the how. More importantly is how you get through your grief, without projecting it… because they will see it and they will internalize it. for me, once I shut it out, it had to get very bad for me in my life, before I was open to a different way. maybe and hopefully it can be more graceful in your story, and your daughter’s story.

maybe it would have helped if there were more open and honest dialog. Don’t get me wrong, My Superman could not help me, I was going to suffer a lot in the journey to realize that my Dad was just a man, just a man that I loved very much. But we all gotta grow up and that particular loss, even if it is just a loss of innocence, is part of every childhood. I am rambling. Sorry for the long bit.


(Cathleen) #6

Wishing you all the strength you need to get though these early months.

It’s so hard not to have to solution, the answer, or to be able to take away the pain and challenge. We walk alongside our children, listening to them, being present with them and supporting them with all we have to give.


(Lorijo) #7

My dauter who is 6 was just diagnosed on Nov 27, and its been a real by adjustment all around. My niece is also a type 1, who was diagnosed at the same age as my daughter (she is now 20). My daughter cries sometimes because she thinks she can’t do things now because of her diabetes, and she thinks she can’t eat something, etc. Luckily, shes adjusted well to the shots, and finger pokes. Honestly, I think its harder on me than on her! I try to reassure her that shes not alone, and she can still do ANYTHING!! Luckily my niece has been super supportive, and my daughter have bonded over their shared disease, and Zoey was super excited to show her all her “stuff” like the glucose moniter and syringes! She amazes me. Hang in there, its all so new for us, but each day will get a little better!!


(wadawabbit) #8

Hi Gemstone. I was diagnosed at 3 yesterday of age (back in 2963). I don’t recall having the feelings you describe your daughter having but I did attend diabetes camp a few summers during my childhood. She’s at what I guess is the typical “summer camp” age so this may be a good time to start looking into some in your area - perhaps her pediatrician or diabetes specialist could recommend some. Under the watchful guidance of trained counselors, etc kids have the total camp experience and interact with other kids who also take shots or pump, do fingersticks, etc. so they learn they aren’t alone and can “do this” - whatever that means for their particular age range. I went through the typical teen years, got my driver’s license, went away to college and work after that - the same as most people. Hopefully she’ll find she has a life that rivals her friends’, even if she has to make some adjustments.


(Denise) #9

I’m in the same boat, my daughter dx at age 9, 4 months ago.
I try to to let it get to me, as she has it harder. She often says “ you don’t know how my shots hurt” … and she’s right. I also reinforce if I could switch places and take the shots for her …I would each and every shot. But again, we move on.
I think as a parent …the most helpful thing is to identify the mood swings and overall trauma her body just endured . Her sugars were 800 on diagnosis.
So she’s still adjusting to lower sugars and restrictions that apply and extra thought into everything and as a mom remembering that is so overwhelming for me as an adult… that the exhaustion and mood swings she has and huge fluctuations of blood sugars in just an hour or two … is uncomfortable for her and probably scary.

That’s my only retrospective thought Is to be able to understand some of the above and remind myself everyday of this


(Tracie) #10

My daughter was 4 almost 5 when she was diagnosed. She is the only diabetic on either side of the family. It was tough, and scary. I don’t even remember the first 3 months. One of the doctors doing rounds told me that the first few month would be like taking home a new born for the first time. And he was right. I didn’t sleep, I was a awake every few hours, I was sleep deprived and kept going. But then one day, it clicked, and it was just our normal. It wasn’t above and beyond, it was normal. When she asked me why God did this to her and not her sister or someone else, I told her that he just made her a little sweeter than the rest of us. Now she laughs when I tell her that. At first she cried over every shot and finger prick. Now they don’t even phase her.

Fast forward 6 years, we still have days that are bad, that she doesn’t want to deal with it. I take those days. I will do all of her figuring, all of her corrections, I try to give her a little break.

She is on the Dexcom 6 (which is AMAZING!) she only has to prick her finger once or twice the first day and sometimes I have her do a random one to make sure the calibration is correct, but it lasts for 10 days. And the T-Slim pump which also gets readings from her Dexcom and if she is dropping too fast it will suspend her insulin and not restart it until her BG is back up. I now can sleep through most nights knowing that she isn’t going to go too low. The technology has improved so much in just the few years that she has had this disease and it seems to be getting better! Another thing that I’m sure you do is no carb snacks. One of her favorites is pepperoni chips (pepperoni microwaved to get get crispy) and fresh mozzarella chunks. Know that how he feels about this will come from how he see you and your wife dealing with it. We told our daughter it is part of who she is. And when asked to describe herself she will say that she is Bailey, she has diabetes, brown eyes, and curly hair. This is who she is and it is her normal. :slight_smile: Nothing to be ashamed of or embarrassed by, it is who she is!!!


(Tom) #11

Our son was diagnosed at 12, now 17 and plays on his high school hockey team and a travel hockey team. All State and All Star team last year. Looking back the first few years were tough, didn’t sleep a full nights sleep for 3 years, checking numbers every 2 to 3 hours. During hockey seasons his numbers would drop every night, was just a matter of when, then we got a CGM and everything improved. We learned the patterns. Then our oldest son was diagnosed at 20. It’s an odd blessing, as they now have each other for support. All of their friends are supportive and our youngest teammates too. I guess I’m trying to say it gets better and became part of our life, “Dig Deep”.


(Louis) #12

He will live a good life , keep at it I got type one at a young age I’m 52 now no side effects and I’ve lived well , keep good control, I wouldn’t let him go to bed unless he was 120 ish , you don’t need him to go to low ! Good luck and I will pray for you and your family !


(tedquick) #13

I can understand the problems of getting your 5 year old to understand diabetes because that’s when I started learning, at age 5. I even looked something like him, a small, bright blondy.

Mind you that was 62 years ago, April 9, 1956 to be precise. It took them 6 weeks to release me from the hospital to go home, since they had NO idea how to train Mom, me or the rest of the family to help me.

What focused me way back then was when Mom told me the "everybody has at least 1 problem, such as constant headaches, a bad leg or any other problem I could name. YOU have diabetes, and always will. That’s YOUR problem, and you need to deal with it now and always.

SInce then I went through almost every kind of problem that T1 brings day to day, but I always return to what she said, and refocus on handling whatever is happening. A high or low bg isn’t something to be offended by or feel defensive about, it’s just the latest minor problem that needs to be solved in a reasonable amount of time. I believe that’s the best approach to living with Type 1.


(Diane) #14

The first few weeks are tough, but it does get better and it will become your new routine faster than you ever imagined. My daughter was diagnosed at age 10 (2.5 years ago) and there are a few pieces of advice and experiences that I had that might help:

  • First the physical part - see if you can figure out if the pain is from the needle or if it might be the insulin. My daughter experienced “burning” with Lantus, and switching to Levemir made a big difference - we went from nightly tears to no problem. Also talk to your doctor about getting on a pump as soon as possible, which will mean just one “shot” every 2-3 days. A CGM will also help give you more peace of mind and more sleep.
  • One of the best pieces of advice I got was from the doctor when we were still in the hospital. He insisted that my daughter not only could but “had to” do everything that she did prior to diagnosis. For her this meant figuring out how to manage her blood sugar for swim team practices and meets and a camping trip (in the middle of nowhere with no cell phone service) 4 days after being released from the hospital. It was hard for me to figure all of that out, but keeping things as normal as possible for her was really important and helped her accept her diabetes and not feel like she was being punished.
  • I agree with Ted’s description of everyone having at least one problem, and that diabetes happened to be to be his. This might still be difficult to understand for a 5 year old, but I took a similar approach with my daughter. There were kids at her school who had cancer, serious eye diseases, life-threatening allergies etc, so being aware of what those kids were dealing with helped her accept her own situation.
  • Look for diabetes resources in your community. The summer camps are amazing and I highly recommend them. 5 may be too young, but many also have family camps. Many communities also have support groups or JDRF sponsored family events and just the experience of meeting others with T1D makes a big impact.

Finally - hang in there! It’s a rough ride in the beginning but it does get easier. Your goal right now is just to keep him safe and adjust to the new normal.


(Basim) #15

it get’s better. He’s such a powerful warrior and I just want you to know it get’s better. Start reaching out the 50 year medalion elders from back in the day. Let me know if you need moral encouragement my friend


(Vanessa) #16

Hi there, I totally understand where you’re coming from. My son was diagnosed with type 1 9 months ago he just turned 4. I would agree that you need to keep in contact with the doctor and adjust his insulin if he’s getting those kind of lows in the middle of the night night after night. My son used to say similar things, used to say he doesn’t want diabetes anymore. It’s so hard to hear him say that. Reassuring him is all you can really do. And I promise it does get easier over time for both you and your child. Sending the good energy your way


(Vanessa) #17

Very well said. My son has been on the Dexcom G6 for about a month. He’s 4 years old and it certainly does make all the difference. He was a little resistant about wanting to wear it. We ordered some tiny cars from Amazon and he gets 3 toy cars every time he gets a site change it seems to make all the difference for him.