Hello. My son 5 1/2 year old son was just diagnosed with type 1 on Sunday. He was hospitalized with diabetic kenoacidtosis. Since this is brand new and no family history I am quite overwhelmed. Right now he is on a fixed carb ratio. At meals it 50g and snacks is only 5g, which has been probably the biggest challenge. At meals he’s fine, but the snacks at only 5g is pretty difficult. He has tolerated us giving his shots pretty well.
The doc and nurse have changed his ratio about 3 times so far. His blood sugar ranges from 90’s-300’s. Is that “typical” response? I just worry when it goes so high. I have tested his urine and no ketones.
Hindsight is always 20/20, so was wondering if anyone has any advice on what I need to do?
Any apps, cookbooks, books etc?
The doctor has already mentioned the pump. Any advice?
I had a long time where I did ok controlwise but really flew by the seat of my pants until 2008 when I got a pump. It is very helpful both because the dosing is more precisely controlled and it also did a great job keeping track of everything for me as I totally loathe logging. As part of it, I also got a scale, which was very useful to measure stuff like cereal and things like that more precisely. 30G/ serving is easier to measure precisely for a carb count than 1/2 C. Since you're kind of running a feedback loop, the more precision you can get in your measurements, the better your calculations and adjustments can be, although it is also a wild and crazy sort of science when you mix life into it.
That is a very typical response to have BG all over the place, particularly at first, as it takes time to get used to it and I think that the non-diagnosed stage sort of trashes your body so some recovery might also be built into that. I agree with worrying about high and it's great you're on top of it. D-parenting is one of the hardest things I can imagine!
My favorite food app is "Lose It" which is sort of a weight-loss tracker but has a really handy interface, you can scan bar codes, etc. to get good carb counts. It also has had all sorts of stuff I was suprised it scanned, e.g. Old Chubb Scotch Ale (34G of carbs, although junior won't want that...). I like the portion part of the app more than MyFitnessPal although I haven't tried that for a while.
Good luck with everything! Finding a message board was really helpful for me to get my act together!!
My son was diagnosed in 1975, at the age of 4. Thankfully treatment of type 1 has come a long way since then.
The pump is a great idea. I use the OmniPod pump, which is tubeless. Also the continuous glucose monitor (CGM), which gives a readout every 5 minutes of the interstitial fluid, which is a close reading of the blood sugar. Dexcom makes a great CGM. There are also other good pumps and CGMs out there, so check them all out before deciding which one to go with. Once he is using a pump, it should be easier to let him eat what he wants and the pump will dose accordingly.
A great book to get is Think Like a Pancreas, by Gary Scheiner.
Another good forum for you to check out is Children with Diabetes.
I'm so sorry this as happened to your family. The best things you can do, you are already doing. Stay on top of it. Learn as much as you can. It takes a while to settle down, and spikes will probably always be part of his experience, but you/he can decrease them greatly. I was on shots for 25 years, and on the pump for the last 12. I would never give up my pump. There is so much to learn, and this is a great place for support.
You may want to join and check out the discussions in the group for Parents of Kids with T1. http://www.tudiabetes.org/group/parentsofkidswithtype1
Also check with your local ADA/JDRF to find opportunities for your son to meet other local kids with T1D.
I was diagnosed at age 5 over 45 years ago. Things are much different now in terms of treatments, but I'm sure the emotions are the same. If you are calm and handle things as best you can, your son will pick up on it.
Hopefully you were told that in the early stages, you may find your son will go into a 'honeymoon' phase, where he will produce his own insulin again, but maybe not quite enough to go off shots. So it's reasonable to expect fluctuations in the beginning as his body recovers from DKA. So yes, 90-300 is somewhat expected. It's very helpful to keep a log, and then look for patterns that surround the 2-300s. Logging sickness and activity level will help, as it's not the food alone that drives the BG level.
It's important to not refer to high BG as being 'bad', or disappointing, but rather just a number to use as input to your decision making.
Think Like a Pancreas and Using Insulin are the 2 books I found most helpful.
Pump, utterly brilliant. Wish I had it when I was your son's age :) Biggest advice coming from a kid who had parents interfering all the time, don't pressure him! And please don't ever use the "you can't do/eat that because you're a diabetic". I still get it these days off my mam and it's something which get's me wound up no end. Food wise everything is possible (a handy book is Carbs and Cals) but just needs a little thinking, and the book here is very handy just to learn eye balling of things and show he can eat anything and everything any other kid can. But as said, we can do anything on or off this planet (there's a Spanish T1 test pilot/astronaut for example).
Hugh…I know. I don’t want to be a “helicopter” mom, but I’m always going to worry. Even if he wasn’t diagnosed. Unfortunately, I have to tell him he can’t eat things right now because of the fixed carb ratio. Hopefully soon that will change. Thanks for the advice.
The term helicopter mom and D-mom are often interchangeable, your level of attention is very normal. Yours is one of the most difficult jobs in the D world.
If you haven't found it already I recommend this group on our site Parents of Kids with Type1 it is a great resource for parents.
People have given you a lot of good advice. I just want to answer the question about how typical blood sugar ranging from 90-300 is for someone newly diagnosed. At the beginning, it is very typical. You, your son and your medical team are experimenting and trying to find the right plan. In time, his blood sugar should become more stable. But he is probably going to see at least occasional 300s for a long time. If they aren't too too frequent and you catch them quickly he'll be fine. It get's better.
Dear Sahamel Welcome to our wonderful site.
I already noticed that you are doing great, researching and collecting as much information as possible. Keep it up!
I agree with most of the comments above, it will get better.
Regarding the foods:
You mentioned that your son is on a pretty strict carb ratio. I do not really know what therapy he is on, but today there are surely better treatments than a fixed carb ratio. i am not sure if your doctor set this up because your son is only recently diagnosed and therefore wants to know how he reacts, but with MDI or a pump it should definitely be possible that your son can eat "whatever he wants".
Talk with your sons doctor about this, and find out the best treatment for your sons Diabetes.
Take care, you are doing a great job!
SC
Hello Sahamel, I was diagnosed in 1945, when I was 6. After 68 years with type 1 diabetes, I have good diabetes health, and no diabetes related complications except for some mild nerve damage. With your help, and his taking good care of himself in the future, your son has an excellent chance of living a long, healthy life. In the US, young type 1 diabetics have a life expectancy that is almost as good as that of non diabetics.
I agree with what the others have said here. I will add that my control is much easier to maintain with a pump than it was with injections. Your son is very young, but I know moms who have started their children on pumps at an even younger age. You can talk to them on the website recommended, at
Just believe in him and give him the strength really :) The ups and downs of the honeymoon period are going to be bumpy but it'll settle down eventually and you both will learn how his body works for whatever he's doing. Keep the faith in him and it'll be a great pillar for him :)
Hi Sahamel I was diagnosed in 1955 at 4 years old. For the first 30 or so years we had no BG monitoring except for twice a year doctors visit. Some how we survived. I would strongly suggest that you consider getting your son on a pump. Personally having been on both a Minimed and OmniPod I would highly recommend the OmniPod for a child your son's age.
BG fluctuations are common even at my age. Good luck and don't hesitate to ask any questions you have. Andy
