My son was diagnosed with Type 1 this past week. We are in the early stages of figuring out insulin doses and trying to level off his blood sugar counts. This is still very new and overwhelming.
I'm wondering if there are any journals, websites or apps you'd recommend for carb counting and keeping track of blood sugar in one place? The log we got from his endo. is not very user friendly.
my husband came up with our own data base utilizing Access 2010. it has been helpful. i cannot recommend too many others seeing that we have been diagnosed for 5 months and we are still adjusting ourselves. zachary is 8. it has been tedious, but not impossible. i make it an absolute rule to read and educate both myself and our other two sons on the dynamics to this disease. sometimes a good pen and paper and a 3 day food log to correlate with his sugars to see when (and what) tends to make him spike.
i really really really wish you and your boy peace. it is a long road for us all, but i believe that a little hope (and lots of organization) really helps. zach was 819 in the E.R., and our first A1C had him at 7.2%. not bad for our first four months with the 'glucose goblins'.
I'm very sorry for your son's diagnosis. I know that it is overwhelming right now, but hang in there...it does get easier!
In the beginning, I personally recommend keeping a paper-and-pen log and/or journal. It will be easier for you to "see" the data you need so you can easily see where his BG is too high or too low, and see what adjustments are working for him. Also, a food log with carb counts is very helpful in the beginning. If he tends to eat a lot of the same foods, you can just flip back a day or two to the last time he had that food and see what the carb count (per serving) was.
The log sheet I use for our son, William (12, dx 5/13/09) is a hybrid of two different logs our Ped Endo uses. Because he does not go to school and we don't really keep to a "schedule" as a family, meals can be somewhat erratic. So, my log sheet has a column for each "awake" hour to track data on an hour-by-hour basis. If your son's meal are more regular, you can just use a column for each meal. The information I track for each entry includes: time of BG test, BG, #carbs, bolus (how much insulin for the meal), and correction (if his BG was out of range, how much additional insulin was given). I also tend to use highlighters for "out of range" BG's so I can more easily see where adjustments may need to be made (orange for high, blue for low). If I'm considering changing a carb/insulin ratio for a particular segment of the day, I'll make note above each entry what carb/insluin ratio I used. I also scribble notes to indicate if he's eaten a "difficult" food (one that makes him high), if there's been unusual activity (we've been camping and traveling a lot), extended exercise, etc. which might effect his BG. If you would like to contact me privately I can send you files with a couple of different logs I've used...maybe one of them will work for you. Hueyhome@msn.com
I tried out a few diabetes management apps this past spring, but was not completely satisfied with any of them. It's probably a little early for you to be looking at apps...you'll want to get a better feel for what data is most important for you to track, how you like to see/review the data, how your endo wants the logs reported, etc. Once you get to that point, you'll have a better idea what apps may work well for you. I personally want one that not only captures BG, doses, activity, and has a food library, but also captures carb/insulin ratios used and correction factors used. And it has to export and be printable in a format that makes sense for us.
Okay, that was a lot. Sorry. Please don't hesitate to contact me privately if you'd like to chat, or want to see some sample logs.
Hang in there!
I agree with Mo that at first it's good to keep a paper log. The best I've seen are from Medtronic Minimed. Ask your diabetes educator or doctor's office if they have one for you to try.
I use the Track 3 diabetes app on my iPhone. It has a carb counter and you can enter in foods/meals commonly eaten. I like that it gives an overall picture of how blood sugars are at certain times of day. However the reports it emails are difficult to read so I don't think the doctors office would find it helpful.
Sorry you're having to go through this. Your son will start feeling so much better though, once his blood sugars are more normal. You'll understand the basics soon and then can just add to your knowledge as you go. I've had type 1 for 34 years and still learn new stuff all the time.
When things calm down a bit, take a look at this book list. Any that are highly recommended are especially good choices. Starting out I'd suggest "Think Like a Pancreas" by Gary Scheiner and "Using Insulin" by John Walsh. Your library may have them or Amazon definitely does.
T1 since 1977 Minimed pump since 2002
I am sorry that I have taken this long to thank you all for your support. Believe it or not, with all the websites and forums, I could not remember this all important one and my password! What is becoming of me? One month down and we are so much more educated, but no less overwhelmed. We have a few good days, then, like this am I get a call from the school nurse that he was 48 after gym. He seems to dip fast with any amount of exercise, and this is a 10 yr old boy, he is active. Other than lowering pre-exercise insulin, do you have any tips for gym class or soccer games? Im reading that small sips of gatorade throughout helps. We are still doing injections, by the way.
Well, thank you again and now that I know where this forum is, I can make some use out of it!
I sounds like you are getting a handle on things and noticing patterns, which is very good. When our son swims, I have to check his BG about every 30-40 min, and usually have either snack or drink some juice with each check. He burns through glucose very quickly during this particular activity, so needs to keep a steady stream coming in. The book "Think Like a Pancreas" has a chart in the back that gives you a pretty good idea of how much glucose is burned during particular activities. It may help you figure out what type of pre-exercise snack/drink to give him before he starts, and whether he'll need to break for more glucose during the activity.
Hang in there, you're doing great!
Thanks Mo, I just downloaded that book!
Good rule of thumb is to let bs run a little higher on active days and for your son to eat a snack before or during, if possible. Sporting good stores sell jogging wallets, that are little pouches attached to shoe laces that are big enough for a few packs of sugar. I wore them throughout my childhood and it was pretty handy for lows.
A great book is "The Diabetic Athlete" by Sheri Colberg. She's a longtime type 1 and an exercise physiologist. Exercise is the toughest thing to figure out as a diabetic.
We also use a SPIBelt for our son. It fits snugly around his waist under his shirt without bouncing around, and fits a glucose meter, test strip container, alcohol wipes, pricker, and a tube of glucose. They come in kids' sizes, and I think they now also make them to accommodate insulin pumps (with a gap for the tubing to go through). store.spibelt.com/.../22.htm
My daughter was diagnosed in Aug 2011. I know exactly how you feel and what your going through. I am so sorry for you as you are me. I will find the addresses and pull out the books we have been using and get back to you. You can do this and you will do well at it beacuse your a mom. Its amazing what we can endure for our children. Were you able to go to a childrens hospital? They have many classes and seminars for parents.The book think like a pancreas is awesome. Also if you call the diabetes association. they will send you a list of resources, games to play that teaches you and your child more about diabetes and they send a new fun bag every month. Its cool.
oooops, I left the message above I was on my daughters page. Sorry.
We are now in our third month and are so much more educated, yes our diabetes team has had education classes and I've hooked up with our local JDRF so Will got his little backpack, and Rufus etc. The hardest challenge we have had (putting aside the emotions, mostly mine) are managing his bg when active. He drops quickly even with giving him uncovered carbs and gatorade. I am reading everything I can get my hands on and appreciate the recommendations. Thank you!
You know what I find very frustrating? When people think you can just change your daughters diet and make her exercise and all will be well. Or did you feed her wrong when she was little? For goodness sakes shes only 8 and I wanna punch them in the face. some people act like its no big deal. I want them to see what my daughter has to go through. 8-10 finger pricks a day. 4-6 shots a day. The tears the hurt the anger. The whys. Abby my daughter is getting better at the shots but we still have a hard time getting the BS at a stable point. Im glad I can come here and vent because I have noone else who understands. I always get some funky answers on how to cure her or comments on what I did wrong when she was a baby. Thanks for being here.
My 11 year old was diagnosed just two months before yours. Get your Dr. Pancreas (that's what we call his endocrinologist) to ask Eli Lilly company to send an education kit that comes in a white box, the outside labeled "First take a deep breath.". I swear everything I was given at the time he was in the ICU could well have been written in Arabic for all I know, but this box really was something very approachable. The paper logs in there were what we started with. I tried iPhone apps but they were all just a profanity that rhymes with app.