My 10 yr old daughter was just diagnosed, & my entire family is still in a state of shock & feeling overwhelmed with the immense amount of information we have received over the last 4 days. We live in a very rural area & access to diabetes professionals or support is a good 2 hr drive away at a minimum. So glad this forum is here and look forward to diving deeper into the resources & knowledge posted by other individuals with wisdom gained from their experiences with T1D.
I have found a lot of answers here for my stepdaughter t1d. Just always ask and get her on healthy habits now for the long term…
Thank you. I will certainly do that.
I was a bit older than your daughter (~12) when I was diagnosed. Please reach out for any questions or problems you might be having. The first year can be tough but the first month can make your head spin. Hope you are doing ok.
Please check out the JDRF web site and see if there is a chapter location near you for additional support as well. There is a location search at the top of the page. There are Mentors, the ODST, and other support available to you.
Thank you Joe. That is really good advice, & you’re right my head is spinning & I wish it would stop.
Unfortunately the closest JDRF chapters are anywhere from 6-8 hrs away. My geography is certainly gonna be an issue. Thank goodness for the internet & access to online resources.
I have bookmarked a bunch of sites/pages & downloaded at least a half dozen different apps.
Fortunately my daughter is getting more confident every day & is actually helping to school me in things I am not sure about. Very proud of her.
Good luck to you Joe, & I wish you many blessings for 2017!!
My son was diagnosed a year ago at age 13. I know what you’re going through. My son is an athlete and was very healthy - or so I thought! That first month was a whirlwind for sure. There was and still is so much to learn! I was the designated parent who woke up every couple hours to my son’s BG. I think I called the Diabetic hotline every night for the first 2-3 weeks just to verify what I was supposed to do if his numbers weren’t within range. I think that helped me the most - I felt like I had had my own personal assistant. the first few weeks is all about levels and learning how insulin affects your child. After 2 months, my son was approved for a pump and continuous glucose monitor. We chose the Omnipod system because he is so active and Omnipod has no tubing. Liberating for sure! The Dexcom CGM is the game changer. I have the app on my phone so I can monitor his BG 24/7. When Luke goes low at school, I get an alert, too low I get an alarm. I shoot him a text - usually he texts me first to let me know he has taken care of his low/high. During basketball and baseball seasons, my son chooses to use pen injections (sliding with an Omnipod - not good) however the cgm stays on. That way we can monitor from the stands. So… I guess what I’m telling you is to take advantage of the diabetic educator nurses and their hotlines. That is what they are there for. I couldn’t have made it through the first month without them. Also, push for a pump and especially a CGM. The cgm alone makes this diagnosis doable. I read many websites and research on my own. I don’t push that on my son - he’s got enough to think about right now. I do share things on a need to know basis though, or about new things coming down the pike. Hang in there - it gets way easier? ️
I was diagnosed in 1945, when I was 6. There were no meters for blood testing, so I tested my urine for sugar. I used insulin taken from animals for almost 50 years. My only instruction from my doctor back then was to not eat foods sweetened with sugar. The odds were stacked against me, but I have survived, and now I am 77 with 71 years of type 1 diabetes. I do not have any serious diabetes related complications. There are many people in the US, and the rest of the world, who have been type 1 longer than me. The Joslin Diabetes Center in Boston gives medals to people who have lived with type 1 for 50, 75, and 80 years. More than 5000 have received the 50 year medal. I will be eligible for the 75 year medal in the year 2020. I am telling you this because I want you to know that young type 1 diabetic have an excellent chance of living long, healthy lives. With all the knowledge, the devices, and the insulins that are now available, newly diagnosed type 1 diabetics have a life expectancy that is almost as good as it is for non diabetics.
I recommend that you join some of the parents groups on Facebook. There are more than a dozen excellent groups there. “Parents Of Type 1 Diabetics” is one of the best. It has about 9,000 members. The activity, replies, and advice given there is outstanding!!
Good luck to you and your daughter!!
have you looked into any clinical trials for kiddos with new-onset diabetes? There may be some in your area! you can find out at clinicaltrials.gov participating in a clinical trial might be a good way to get extra diabetes education for your daughter for free!
Hi there! Just a note of support. My now 12 year old was diagnosed at 11 and half. It feels overwhelming at first, but then you realize you just have to take it one thing at a time. We have been really lucky - we are 15 months into this and he is still honeymooning. I am sure it will get more complicated after that is done, but we will take things as they come. Good luck and don’t be shy about venting or asking questions.