A little background: in April of this year my son was having a lot of accidents (b/w 3-5 daily, months after he was potty trained). He ended up not having a UTI, so his doctor wanted us to take him for blood work to see if anything else was going on. He was on prednisone for his asthma when we took him, and his blood sugar ended up being 350 so his pedi. sent us straight to the hospital. He was never put on insulin because apparently his pancreas was still working and was able to lower his blood sugar. He tested positive for 3 antibodies and his endocronologist (who is absolutely amazing) told us to monitor his blood sugar several times per day. SInce April he's had highs (the highest we saw at home was 325 at night when he was sick, but it eventually went back to low 100's by the morning) and the lowest we saw was 51. We've been trying to make sure he ears a balanced diet, but with a 4 year old it's not always easy!! This past Sunday we went to a party and he had a few treats, and when I tested him before lunch his BG was 250. SInce then his numbers have been running higher than usual and we're scared about him being hospitalized and starting insulin. His morning numbers have been around 110 (not terrible) but his before dinner numbers have been over 150 (tonight he was 170 and it was more than 2 hours after his after school snack, which was a graham cracker). I'm scared of diabetes, what his life will be like, if he will take good care of himself when he's old enough, low blood sugar and high blood sugars. We have no family history of diabetes except for my grandmother and her sister, and I don't even know if they had type 1 or type 2. My sister in law is type 1 (brother's wife) and she's been such a tremendous help with answering our questions. Thanks for listening, I just need to vent.
You must be feeling so stressed -- I know I worry about *everything* with my son b/c as a parent, I feel like I should be able to protect him from everything bad. I was diagnosed when I was four. I know it was very painful for my parents (and esp Mom) -- they also knew nothing about diabetes.
It sounds like the endo is fairly sure he'll end up on insulin because of type 1 antibodies? Maybe you can think of going on insulin as a positive -- something to make him feel better -- rather than a failure of his body?
Obviously, some of us have had better and worse times with this disease b/c it's not easy. But over my life, I've never, ever wished I wasn't alive b/c of the D. I've always been grateful for insulin b/c even if it's hard with T1, I feel like my life is full and meaningful. It's definitely changed my life in some ways, but in many ways, I'd say my life has been normal (probably even boring these days, lol). Also, science and research is constantly moving along, so by the time he's an adult, who knows what treatments may be out there?
If/when he goes on insulin, it's totally normal to have some BG's that are out of range even if you do everything "right." I hope you'll be patient with yourself and know you're doing your best. Let us know what else we can do to help!!
His endo. said that eventually he will end up on insulin, but she hasn't seen many kids in this stage before so she doesn't know how long he can be in this stage for. She won't start him on insulin unless his numbers are consistently above 200, and especially if ketones are present. I know at times he could definitely use insulin, like when his numbers are above 200 and he acts irrational- crying, cranky, tired, irritable. But it could be dangerous since it does lower on its own. I know it's eventually going to happen and I know what to expect, but I don't think anyone can be prepared for something like this even though I know what's going to happen.
I know a few people who have type 1 and they're all happy and healthy, so I know type 1 diabetes is manageable and people with type 1 can live long and fulfilling lives. But it's scary to think what can happen if it's not managed properly.
When I tested him 2 hours after he ate dinner, I was expecting a number in the 200's because that's been the norm lately, but I was so relieved to see a 150.
The period he's going through is called the "honeymoon" phase. His body is still producing some insulin, so he has numbers that are higher than normal, but doesn't need insulin (yet) to help him lower them. There are quite a few newly diagnosed people on here who are still going through their honeymoon phase. Hopefully they will read this and respond to talk to you about it.
We completely understand your fear and panic. Even those living with diabetes feel that way on occasion. The most important thing you can do is just take things one day at a time. It gets too overwhelming to look ahead into the future when so many things are uncertain. All you have is right now, so focus on helping your son through today.
There are also quite a few people on here who have lived with diabetes for 30, 40, 50, even over 60 years and are completely healthy with little to no complications. Living happily and healthy with diabetes is very possible. I have had diabetes for over 20 years and am healthy. I've accomplished every goal I have set for myself so far and just continue to work on the rest.
Every diabetic will have numbers that are out of their own personal goal range. It's impossible to always keep numbers in control; there are simply too many factors out of our control that have an effect on blood sugars. It's important to remember our blood sugars are not a reflection of us as people. We do what we can, and even have days where we don't do anything, but people aren't perfect so we can't expect our blood sugars to be either.
I'm very glad you came to us here on Juvenation. This is the best place to come for support, information, and friendship. Here we are all equal and will do whatever we can to help you and your family through your hard times. We're also here to celebrate your triumphs with you. Welcome to the site. Keep joining in on the various conversations and let us know how we can help you :o)
Sounds like you're already learning about the numbers and what foods do what, too them. I am sorry to hear of another new member to Club 1. Finding Juvenation will help you a lot. The people on here are the best!!! Starting insulin isn't so bad. There is a lot to learn though. One question, do you know his a1c??? Just wanted to say Welcome and I am afraid I won't be much help on young stuff. LOL I was dx'ed at 52.
I have 3 boys who are T1. My last two who were diagnosed, were diagnosed very early, like your son. They went many months without insulin. With both of them it was a virus that gave them the final push to start the insulin. Your child will feel awful over 200, because to him, it isn't normal. It is good that you check often, his pancreas is confused and lows can happen as easily as highs.
I know the entire process is stressful, and when his numbers are good for a long stretch you wonder if maybe all this will go away...I want you to know I have SO been there. But I also want you to know, that all is well! He will be able to live! He will play sports, and go to school and play with his friends! Sounds like you have a good endo, and let me tell you, that is priceless!! Good luck! And if you ever have questions, we are all here for you!
is he still on prednisone... I mean I have asthma and I was on high dose prednisone for a while... it can cause your sugars to skyrocket and once you are off the prednisone (or taper) they tend to go back to normal after a while.... for me that wasnt the case but you can always keep your fingers crossed... but if not he seems like a strong kid and you seem like a strong mom :)
I was diagnosed at 18 with type 1 diabetes and I went thru the honeymoon phase also. I started out on a small daily injection of Lantus. Lantus is a basal insulin, meaning it gives you very small increments throughout the day. So, I was on Lantus for a couple months and steadily my numbers began to climb, especially after meals. Eventually I was put on Lantus in addition with Humalog. Humalog is quick acting (or meal time) insulin. You take Humalog with everything you eat AND if your BG's are high and you need a correction dose. Personally, as a type 1 I understand that when I have children they MAY be able to get it also (though Lord knows I pray they never do!). If they were to get it though, I would have them on an insulin pump. I know I have been through needles and syringues, pens, and a pump. I prefer the pump anyday rather than the 6 daily shots I used to be on. Everyone is different. You or your child may not like the idea of a pump, and if not, that's Ok. Lot's of type 1's are not on pumps! But it's something you should at least look into. Most pump companies will let you wear trial pumps to see if you like them. And I understand you are scared! That is perfectly normal. Both for a type 1 and for relatives/parents of a type 1! But, keep in mind with tight control he will be OK. And with time he will literally be a PRO and an expert about diabetes. He'll be teaching YOU stuff! Just wait and see! I have T1D and I live on a farm with over 100 animals. I lead a very active life! My BG control wasn't the best when I was first diagnosed. It did take a couple months to really get the hang of everything. But now I am on a pump, I test my blood about 6 times a day, I try to eat healthy, and I try to get about 30 minutes of cardio in daily. I may have a lifelong disease, but I am pretty healthy!!!
Meri-
How long were your sons in this stage for? So far it's been 8 months for mine. Unfortunately it's cold season and I think he's coming down with something, he's coughing and congested. Whenever he goes a while with good numbers, I think to myself maybe the dr. made a mistake. But then he'll start having some higher number, which makes me go back to reality. At what point did their endo. decide to start? What were their fasting numbers like? I know he will have a (mostly) normal life, but I feel terrible about it even though it's not my fault or my husband's fault. I know things happen that are beyond our control, but it's scary when it happens to you.
He hasn't been on prednosone since April, his endo. thinks the pre-diabetes (I guess that's what I can call it since it's not full blown type 1 yet) may have been triggered by the prednisone. He normally uses a nebulizer when his asthma starts up, but he was on the prednisone because he was coughing and wheezing for 2 month and nothing seemed to help so his doctor prescribed a 3 day course of prednisone. Ove the summer he was sick for a few days and he needed the nebulizer, and his blood sugar shot up after the albuterol/pulmicort. I know the pulmicort is a steroid, but his pediatrician didn't think it would cause his numbers to go up since it's inhaled not ingested. His BG went up to 325. We were scared! But his endo. said as long as ketones were negative and his number ends up coming down on it's own, that's what matter.
He is a tough little cookie, he's been a champ with the finger pokes since the beginning. He does resist once in a while but so far he's been okay with it.
My daughter is out of her honeymoon phase now. One thing that really helps lower her glucose is exercise. We bought a small mini trampoline that she likes to bounce on for a few minutes when she is a little high. Her brother loves it too but he doesn't have type 1. It has a handle on it so it is fairly safe. He might be able to lower his glucose from those highs fairly quickly and feel much better by getting some vigorous exercise for a little while.
Both my boys lasted less than 5 months, but there is a little girl at my boys elementary school that went through this phase for almost 8 months. If my boys hadn't got strep throat, or the stomach flu, who knows how long they would have gone. Their fasting numbers were spot on. The lows came with the swings after high carb meals. It was a crazy ride! One boy needed insulin in an instant, the other just needed insulin when he was high every once in awhile. Then the background insulin and then we began giving insulin for meals. It was a slow process for him. I know how heartbreaking the process is, but it will be ok. My boys are thriving...your son will too!