My daughter had this really strange rash and with many trips to the Dr and ER they determined that it was just an allergy to something and she was put on prednisone and claritin. She then started needing to go to the restroom a lot and soaking through her sheets at night and then it progressed into throwing up and being severely thirsty, then she became weak and lethargic and very dehydrated. We thought that she was just having symptoms from the predisone and the throwing up we figured was just a bug that she had caught from the many trips to the ER and DR.We then rushed her to the DR, and only then did they even mention Type 1 Diabetes. Obviously we were in shock and doubt and confused. We had no idea that she was struggling for so long and felt so guilty. She was DKA and so dehydrated that her teeth were starting to dry up and she lost 6 pounds in a week. After 2 days in the Pediatric ICU and 2 days in the Pediatric floor, we finally were able to take her home. This has only happened and become our new reality 2 weeks ago. It is all still fresh and I still feel like I need to wake up and get out of this awful dream that I am in. My head still can’t wrap around the fact that my healthy 5 year old all of a sudden became very ill and now has a lifelong disease. She has never complained or shown that she is mad or sad or scared, she just takes everything that has been thrown at her in the most graceful way. I on the other hand am sad and scared and mad and wish that my little girl could go on living her life without being poked and given shots and to be dependent on Insulin to keep her alive. I wish that she could live life without wondering if one day she will feel like she did those weeks before. I hate that I have to tell her no to certain foods at certain times because of her insulin schedule we are on. It makes me sad that she has to keep track of where she has been tested so she doesn’t get sores on her fingers. It makes me sad that she has to miss eating lunch with her class and has to eat at a different time than them. I do love that we have bonded over learning about how to take care of her and trying my best to answer her questions and looking up in our many handouts and books about why she is so special. I just wish that we could be bonding over other things. I am not going to treat her like she has T1 I am just going to love her through it and all of the ups and downs, highs and lows that this wicked disease throws her way. I have to be strong for her, even though I am a total mess, she will never see it.
Wow. Your daughter’s story is remarkably similar to my own; I was diagnosed (in DKA, having lost 15 lbs) when I was 7 after several weeks of the same symptoms. It was so terrifying and I can only imagine what my parents went through. The shock, the fear, the realization that this is your new reality… it’s all a slow and painful process, and I’m so sorry.
I promise–and I know it sounds impossible–I PROMISE things will get easier. I know it feels so overwhelming right now. But slowly you’ll find that it’ll just become another part of your daily routine. I’m really impressed that you’re already finding the little “bright sides” of life with T1; that’s a skill that took me a while to learn. You’ll find that as difficult and taxing as this condition is, it is also a blessing in some ways. As your daughter starts to adjust, let her help with the management of her own condition–I started by holding the meter up to my finger to put the blood on the test strip. Next I learned to “double-check” the insulin doses that my parents drew up. Little things like that taught me to be more responsible and feel like I had control.
You can only do your best. And it sounds like you are. There will be good days and there will be bad days; take them as they come and remember that the bad days aren’t your fault or anyone else’s. They just happen. You’re going to make mistakes; learn from them and move on and it’ll hep you do better next time.
And last but not least: This condition cannot stop your daughter from doing ANYTHING. She can follow her dreams, she can make friends and learn and grow the same as they do. Make sure you know that, and she does too. I’m a freshman in high school right now; I have a 5.0 GPA, I’m first chair flute in my school band, and I play singles on the tennis team. (Wow, that totally sounds like bragging, sorry…) I’m just telling you this to prove what you may already know: that T1D can’t limit your daughter or stop her from doing whatever she wants to do with her life.
I’m so glad that you’ve found this website. It’s a great place to ask questions, to get advice, or just to rant–because there will be times when that’s what you need. Please don’t hesitate to post about any questions or concerns, and feel free to message me if you just want to talk.
Kelsey @Mommybray09, you have been through a lot in just a very short time. I feel for you.
I suspect that your daughter is too young to know how serious her condition is, and that may be good as long as you are learning and you can be her mentor. A suggestion, if at all possible keep positive around her and shed your tears - there will be many - with someone else, and with the many caring and thoughtful people here. Your thought about letting her grow up as a “normal” girl are awesome - my moto, and I’ve had diabetes for 60 years, is live a full, active and productive life and manage [my] diabetes to fit.
You said that she has to eat at a different time than her classmates; that is because [you] she is attempting to fit meals to scheduled insulin doses - a very common practice prescribed for newly diagnosed when trying to get an idea how insulin affects her and what foods need more, or less, insulin. You are on a learning curve - and I’m still learning too. Eventually she will be able to have basal insulin levels / rates that match her body and then take a bolus insulin to cover meals; as a business executive I was able to travel cross country, attend meetings and dinners scheduled at ‘crazy’ times. I made it work and maintained an Hb A1c within a decimal point of 6.0.
I like your positive attitude - your attitude that you WILL do the very best for her and she will be fine. Yeah, the finger-sticks and shots are a real pain but at sometime all that stuff will be second nature to her and to you.
Stay in touch and don’t hesitate to post questions [I try to respond to most posts, not as a medical professional but from my life experience with diabetes; correct, I’m far from perfect and I’ve made mistakes but I’ve learned.
Please know that your story is similar to most diagnosis stories. If you’re not expecting T1 in your family, you don’t know to even ask the doctors about it. Don’t stress over it–just be glad that you now know what the problem was and that it is treatable.
Diabetes is completely overwhelming in the beginning. It may not seem like it now, but just know that everything you’re stressing over will become second nature to you (and eventually your daughter) with time. All of the testing, the shots, the carrying snacks, constant monitoring, etc. It ends up blending into the background of your every day life. I was diagnosed at 18 months old. I’m now 34 and married with the happiest 2 year old boy the world has ever seen. I can’t think of a single thing that diabetes ever stopped me from doing–hanging out with friends, competitive cheerleading in high school, going off to college, and becoming a mother were all accomplished with a little extra effort on the diabetes front.
You will be okay. She will be just fine. Just take it one day at a time for now. Learn as much as you can and don’t beat yourself up over mistakes. No one can perfectly control this disease, but we can all manage it. Hang in there mama–you got this!
Beautifully said @ksmerk12 !
… and I will try not to beat myself up over my many mistakes.
reading your post bought me back right back to just 2weeks ago for me aswell. My three year was life flighted on Oct. 21, 2017. it was the scariest thing in my whole life. I hope that you find all the help and support that you need. if you come across something or someone that gives you the help, support, and answers please share because i am still in that same daze that you are in