Hi everyone, I’m new to all of this as our 8 year old son was just diagnosed two weeks ago. We’ve had wild BG swings since coming home from the hospital and are just exhausted from the nighttime checks we are doing. Life currently feels like a hazy dream of fear and finger pokes. 
My husband and I keep telling each other this has to get better over time, but the doctors never really told us that this could be so difficult to manage night time lows and there would be this many checks. They implied if our son was sick, or something was going on that day we may need to get up and check at 3a.m. but other than that not much focus on what night time life would hold going forward. In reality we have been up several times a night, almost every 3 hours checking and have gone from 317 to 68 in a matter of hours, so are glad we were up checking to catch it. At this point we are left with the feeling that we may never want to quit checking so often because what if we ease up and miss a low? The things I’ve read about CGM make me think that won’t be the magical solution to this although could help with trends, so for those that have dealt with this awhile, is this something we need to learn to live with and plan for long term? We don’t want to live with our hopes up that being up all night will end if in fact it’s just part of life with T1D kids. We’d rather just know and deal with reality…All of this is complicated by the fact that our son has Common Variable Immune Deficiency as well, so he gets sick often, which from what I’m learning can really wreak havoc on BG. So many new things to learn for us, so any advcie is appreciated in advance. As we cope with the emotional fallout of this new diagnosis, knowing there is a community like this to turn to is very comforting. Thanks, Becky
Hi Becky - I am so sorry to hear about your son’s T1D diagnosis. You are definitely not alone! My daughter was diagnosed at the age of 7 years old in 2013 (two days before Christmas). I felt like you and your husband in the beginning (completely overwhelmed)! I just wanted to know what to expect. Many folks from the T1D community told me that it would get easier to manage my daughter’s T1D as time moved along. They were right, it did get easier! Now that doesn’t mean there aren’t times when I feel like we are right back where we started. And like your son, my dauhgter has dual diagnoses of Celiac Disease along with her T1D. She is also a brain tumor and stroke survivor, so I get it! You just want to say, “Enough Already”!
Here is what helped us make it through this chaotic journey:
-
Get a CGM! That is what saved my husband and I from becoming permanent Zombies! Of course the CGM is not perfect, but it has made our lives less stressful. We also have the Share App that allows us to see our daughter’s blood sugar numbers when she is not with us. We feel more rested now that we have the CGM.
-
Find a family counselor that specialilzes in chronic illness. Our whole family started seeing a counselor who worked with families through the Joslin Diabetes Center. He has been wonderful. I realized how much I just needed to talk about all that was happening to our family with our daughter’s diagnoses. Our counselor has given us “tools” to deal with the stresses of this disesase.
-
Keep reaching out like you have done with this post. Find anything and everything you can about JDRF events in your community. Join a walk, go to a conference, join JDRF Facebook site.
-
Remember that this is a marathon not a sprint. Pace yourself. Take it one day at a time or sometimes one hour at a time. And give yourself a pat on the back. You are doing great. There is no perfection with this disease. Big hugs to you and your family!
With much hope,
Cheryl
Cheryl thank you so much for your kind words of hope and compassion! I’m so glad to know that despite all the difficulties you and your daughter have faced things are going better. I will certainly do all you suggested and really can’t thank you enough for the encouragment!
Thanks,
Becky
If your child is open to it a CGM will help to make life slightly easier. Just the idea of my daughter not wearing her’s overnight fills me will panic. I still will check her if the number seems off or too high/low just to be sure. I feel like sleep is just something that we sacrifice. You will get a little more some nights and less on others. They need us to make sure they are okay, so yes…this is now just part of our new normal. And yes, it will get easier but there will be days of struggle and days not so much. One day at a time is the best advice.
You will get through this. I promise!
Wendy
My son was diagnosed about a year and half ago, within 6 months we had the Dexcom and have since upgraded to G4 Share. I can not remember how I got him to “try” it , I think a trip to Lego store…;-). He was VERY scared at first insertion at Children;s hospital, she said leave the drama aside and think of it like pulling off a bandaide, just do it. We did and for the first few changes he was nervous, we now distract him with a magazine or Ipad, he likes the “Diabetic Danica” instructional video on YouTube, I think because she is all smiles so it made him worry less. Now with the help of “Tegaderm” bandaide we can get it to stay on for about two weeks. Also, we have showed him Nick Jonas, and American Idol had a contestant last season with a Dexcom, so we look for ways to normalize it more. I agree with all Cheryl posted, we are looking into a therapist just because I have heard the teen years can be tough and I want to be ready for that. Good luck
My son was diagnosed last January at 8 years old. It’s a big change, that’s for sure! He is still in the honeymoon phase…so we are always dealing with changes in carb ratio, etc. I still get up every night to check him. Every day is different. We are still learning as we go! We see the Endo next week so I am going to request that we start looking at CGM’s…I know it would be a bit of a relief to have that. I find a lot of comfort reading other peoples stories both on here & from T1D parents that blog. Hang in there!! It will get easier!