Hi,
As I’m sure you can understand, I am swimming in information and only have a second to post, but I wanted to say “hi” because I feel like I will be here every day very, very soon!
On Monday night we rushed my 8 old year old son to the ER and received the news. BG was 769. He has type 1 Diabetes. We have had 4 full days in Boston to learn everything we can. Right now I’m freaking out about him going back to school in 4 weeks. I’ll check back once I have some time to meet with everyone. Excited to find this resource:)
Take care all!
~Kimberly
I am very sorry to hear about the diagnosis. Your family has a lot to learn, but just know that your son can still lead a very happy and healthy life. I wish you all the best, and hope that his school has a great nurse/team that can make sure he stays healthy and safe while at school too!
Sorry to hear about your son Kimberly. But I also wanted to assure you that you are doing all the right things, gathering as much information as possible, and using tools like this forum to connect with other people will pay huge dividends in the long term. This is truly a great place for information, but also being able to talk with people that are going through or have gone through exactly what you are dealing with.
The technology and advancements that have been made over the last 5-10 years in diabetes management is truly incredible. I’m confident that we will see a cure in our lifetime.
Hello
I am so sorry to hear about your son. I have two children who were diagnosed with Type 1. Over time you will be a pro at dealing with the day to day trials and tribulations as will your son. One thing that was very helpful to me early on was setting up a 504 plan at school for my kids. You can look it up on the JDRF website. They have sample plans and you can incorporate anything else you find pertinent to fit your son. I also found belonging to JDRF through yahoo very helpful. Many caring and knowledgable families to gain helpful information from. Best of luck and be patient with yourself - it’s especially hard on us moms but we are fortunate diabetes is a controllable disease - things could be a lot worse!
Just wanted to post and say not to get discouraged. You have a lot to take in, but in time it will be totally doable and even 2nd nature. My advice would be to not let every single meter reading throw you for a loop. Meter readings are simply data points that tell you how to move forward from there–DO NOT let yourself or your son feel like you “failed” if you see a number you aren’t happy with. Also, help your son learn to take care of himself as soon as he’s able (doing his own testing, injections, carb counting, etc) to do so one step at a time. Although it will take time, it will be easier as he grows up if he doesn’t have to question you about what to do every time he eats (especially if he is out with friends, etc).
I am 31 years old and have had T1D for 30 years, as well as currently being complication free (despite years of much worse control than I have now). You and your family can handle this. Good Luck!
Hi Kimberly,
I’m so sorry to hear about your son and this sudden diagnosis. What everyone has written is true and encouraging. We are on 1 1/2 years now since our 14 year old daughter was diagnosed. It’s just so shocking and overwhelming. Give it time. As was mentioned before things will get easier and become a new norm.
Our daughter has since excelled in sports, we have traveled overseas, and she is enjoying all that teenage life has to offer. Your son can still go after his goals and dreams.
Again, the numbers are data. Just follow the data. You guys will get the hang of it. Hang in there.
My daughter was diagnosed at 14 and I remember very well the whirlwind of information and fear. But the people at her endocrinologist’s office were great and are a still a wonderful source of information and assistance. I also have learned a lot from this and other online communities about T1d. My daughter has traveled overseas, spent a week in the wilderness on an outward bound trip rafting down the Colorado, and just finished her freshman year of college. With your help and support your son will live his life fully with diabetes. I agree with the other responses, that the numbers are information, not a sign of failure. Be well!
Your daughter will eventually adjust to her life with type 1, and then she can have an almost normal life. I was diagnosed in 1945, when I was 6. After 69 years with type 1, I have very good diabetes health. The life expectancy of type 1 people in the US is almost as good as it is for non diabetics.
My son was diagnosed 4 years ago ( age 11). I remember where you are right now. An experienced T1D parent told me to remember that I could do this and that my child could live well with diabetes. I thought he was so much more experienced than me and I was so overwhelmed that this could never be true for me. Well, we are still standing! We have all learned a lot, we are learning and getting better at it every day. You can too!! This is a treatable, manageable condition and your child will go back to school, sports, hobbies, and fun. Take it one step at a time and give yourself the gift of time and patience.
Hi Kimberley, We were in your shoes a year ago, in the Boston area too, it does get more manageable but it is very overwhelming at fist. My son is now 9 and very happy, plays baseball, went on overnight with his cub scout pack twice since dx., so it is all possible but you need to plan everything out and my husband or myself go to everything still with him. We have Dexcom for last 6 months and it has been a live saver for us.
In regards to school, we had some challenges at first b/c at first we were told by the school nurse, and his teacher that he did NOT need a “504” He did, we were put in the unfortunate position of being newly dx’d and also having to push the school for that, and we have it now. A 504 and and I.H.P are a MUST. We have that my son must be checked before he gets on bus to come home and that he needs to be a certain glucose number or he has a glucose tabs. It needs to be that specific and you can change it as you see fit throughout the year. There is great info on the JDRF, ADA websites, and for me, other parent groups like this are key, Facebook has many and there are a few for Massachusetts that are easy to access and you get mostly great feedback.
For field trips law states you get to attend any field trip you want, nurse has to attend if you don’t.
Also for insurance, BlueCross was good to us, they assigned a case manager and they helped with advice on how to write a prescription for extra glucose strips or how to get a “vacation override” (we went on vacation 3 weeks after diagnosis b/c it was already planned), so if you have them, they likely will do the same, use that resource if you can. Push back and ask questions if and when things to not make sense. Best of luck
I am a mere 4 months ahead of you. My 10 year old son was dx in March. Do contact your school and partner together to develop a 504. The school district nurse will be familiar with the content. Here is a link from ADA of what you can expect to include:
6 days in on my 11 year old son’s diagnosis. My head is swimming like Kimberly’s. I hear and am grateful for the 100% affirmation that we will soon be champs. I hang on tightly to this until we get there. The inevitable EMOTIONAL BREAKDOWN happened last night. Please share your comforting words for Kimberly and me. Specifically, give us the words that our T1Ds want to know when they say:
My sibling says she wants attention too but I have diabetes. She isn’t the one getting shots all the time and having to wait and ask for food all day.
I have to do this forever!
Mom, you get mad at me for asking for more food. (as you suspect, I am not mad, although his perception IS his reality. I am anxious that I will make a mistake. Although I remain calm I am frustrated that food, counting, calculating, is my new reality too. Is he really hungry again or is he wanting to find his freedom in this sucky situation?)
What words do you have for me to give my 14 year old big sister?
Thank you in advance for your words. My mind, and I suspect Kimberly’s, are too crushed with numbers, safety concerns, and logistics of creating a system to think very straight right now.
Karen, We started with NPH for lunch and morning/afternoon snacks. We mixed it into his morning Humalog shot so he would only get 2 shots in the morning - one Lantus and One mixed with NPH and Humalog. My son was did not want to tell his friends and did not want an injection at school, this along with the Dexcom CGM (sensors last two weeks for us) really helped us a lot. We are considering Omnipod (tubeless pump) but endo said may he may be too skinny for it, we are going to try it soon. I tell my son we can try different things and see how it works.
Also, find food your son likes and he can eat and does not spike him, “Skinny Pop” popcorn is 9 carbs and free snack, and every now and then we might skip a coverage, like afternoon snack today, and he came in a little for supper and we corrected and he was fine. We use 22 carb “deli thins” for lunches and that does not spike him much either, so you will find certain foods will make a HUGE difference in his numbers. We can not go near pizza and bagels and breakfast cereals without spikes, but now we KNOW it and we add a bit more insulin and correct sooner than we did at first. Dexcom also helps here tremendously. You can see what you are correcting (still have to do blood check before dosing insulin - a must!) and see the food is doing. I have a 5 year old so I get the sibling thing…he starting carb counting at 4 but he will be ok and looks out for his brother, there is are a lot of groups on facebook and online resources like “children with diabetes”, they may have some older sibling advice, I know teens are moody without anything extra like T1D in their house! - maybe do something one on one with your older teen a special outing, etc.,not sure
This site is run by a guy who has T1D is a therapist and a nurse, I LOVE him, saw a video of him on children with diabetes website and now follow him on facebook. He has a lot of good advice. http://amileinmyshoes.com/about/
Books recommended to me" How to think like a pancreas" also written by person with type one and DNE
“Raising teens with type one”
My advice get him asap on pomp and dexcom … It will help you a lot. Omnipod has cordless pods that are small. He can swim with them etc… you can get free demo kit from their website… Dexcom will help you monitor his BG and will alarm you when he is falling low… What is best you can see it on your iphone from work home etc
I do bake with stevia just substitute with it by using a pinch or two, depending on how sweet you like things. As for agave nectar I would use no more than a quarter cup for a substitution. I also am wary of other sugar substitutes. I'll try to measure those out next time and give you some recipes. Good luck.
Hello everyone I am a single working mom of a 7 year old and during the summer and some evenings during school year I find myself relying on frozen dinners to get something done in a jiffy. Looking for ideas on lunch (besides the standby pbj and ham and cheese) and quick or make ahead recipes that would be diabetic diet friendly. Any and all recipes would be welcome.