My husband and I found out today our 3.5 year old son has type 1 diabetes. In a way it doesn't come as a shock because he was hospitalized last weekend with a blood glucose level of 350 (he was on Orapred for his reactive airway disease, the endocronologist said it can raise blood glucose levels). They did a slew of blood tests while he was in the hospital, including the antibody marker to see if it would tell us one way or another if there was something going on (it came out positive). His endo. said his beta cells are still producing some insulin and he does not need insulin yet. We are nervous and scared, because our son is such a sweet kid and we feel terrible that he will have this for the rest of his life. He is in preschool right now and we were thinking about sending him to camp because we both work, but now we are rethinking camp for him (I work part time and thankfully we have family in the area who would be willing to help us out). Right now, any advice can help. We are so nervous right now.
If it hasn't been mentioned yet, I hope the medical professionals have suggested putting him on insulin, long acting, to give his islet cells a chance to get their function back on track.
The age and the condition you describe sounds like a prime candidate for the insulin treatment. The science behind it is to take a load off the remaining islet and beta cells to give then a chance to regrow. The Artificial Pancreas study and many other studies of newly diagnosed diabetics, has shown that the treatment is affective at helping the body fix itself.
I have had T1D for 40 years and have been fortunate enough to have been able to manage it and avoid any diabetes related complications. I wish you the best and hope that you son will come out of this for the better.
You should talk to the endo about possible getting involved in clinical trials. There is a lot of neat stuff happening for people who have recently been diagnosed. I've been a diabetic for 17 years, so I don't really keep track since it doesn't apply to me, but I see signs when I go see my endo and you can find info online too.
Here is the link to the JDRF Clinical Trials web site:
http://www.jdrf.org/index.cfm?page_id=101984
I had some much going through my head when I spoke with his endo., I am not 100% sure if she told me she would, but I am pretty sure she did mention something about putting him on a long lasting insulin for now. We don't have an appointment set up for him yet, someone from her office will call me to make an appt. (and if I don't hear from them by 2/3pm, I plan on calling them). Since he wasn't officially diagnosed with type 1 when he was hospitalized, he had no diet restrictions since they weren't sure what was going on (they did tell us to stay away from juice and other foods that have a high concentration in sugar), we didn't meet with a nutritionist, so until we do, I am so nervous about what to give him to eat for meals and for snacks. She said to stay away from certain foods and do research on low glycemic index foods until we are able to meet with a nutritionist. I'm nervous that I'll end up giving him the wrong food that will make his glucose levels go too high.
After living with T1 since 1982, I'd say that no matter how hard you try, you'll make mistakes. So, just do the best you can with his food for now until you get in w/ a nutritionist and don't beat yourself up for making a mistake!
Foods with fewer carbs include proteins (e.g., cheese, meats, fish, nuts) and vegetables. Fruits, juices, and starches tend to have more carbohydrates (esp pasta, rice, baked goods, crackers). If you start looking at packages of prepared foods, look for the total number of carbs (not just sugars or fiber), and ask the endo what a good range would be. Something that is 15-20 grams is pretty low, and something over 45-50 is pretty high. He'll need some carbs to function, so you don't want to cut them out completely. If you search this site, there's a thread on "free foods" which have little to no carbs, which can give you TONS of extra snack ideas that won't make is blood sugar jump.
In general, food you make at home will have fewer carbs than food in restaurants.
I hope you can get in with an endo soon! If you post any of your questions here in the meantime, I'm sure there will be people around to help. (: Hang in there! You'll get through this time and feel more confident once you have more medical support and experience!!
Here's the link for the thread on low-carb foods:
http://juvenation.org/forums/p/5314/57970.aspx#57970
Thank you so much for the list!
I agree with what Sarah said but try not to look at theses as mistakes but rather as learning oprotunities. We are all different and what effects one of us may not effect the others the same way. Pasta for me is not so bad but it does take longer to obsobe the carbs in it than it does in say white bread. We are all different but you will learn.
My 6-year-old was diagnosed in January of this year, and this forum has been a tremendous resource for me. While we're not medical experts, we can share our experiences, and you will know that you're not going through this alone. The experiences of everyone on the site will help give you peace of mind. I know it has for me. As for mistakes, my husband accidentally gave my son Lantus (long acting) instead of diluted humalog when we got home after diagnosis. We learned quickly that we will make mistakes, and most can be easily managed.
I was diagnosed at 3.5 years old myself, and am now 26 with no secondary complications as yet. It's definitely something that can be fought over many many years, whether it is full-fledged Type 1, or if he's fortunate enough to retain the use of some islet cells.
I wish you the best, and definitely keep an eye on these forums, as they provide valuable resources for people in all sorts of situations and dealing with all manner of difficulties.
My son just turned 3 last week and was diagnosed at 15 months. Figuring out what to feed him was the biggest challenge...but unfortunately with a toddler that is not always your choice. We have been on shots for the last year and are going on a pump next week. To me we were chasing lows with the shots because toddlers are such picky eaters and we ended up giving him junk food to counter act the insulin.
Im excited about the pump so we can get into a healthier eating pattern. You will get it though...its just another task to add to your everyday and become part of your routine. Feel free to message me with any questions I know how scary it can be.
Jennifer
Thank you. We just got the results of the antibody tests that were done, and the 3 that were done all came out positive, I was hoping there was a chance of a false positive. In a way we're lucky because my 3 yr old is the one who will eat the healthier foods without a fuss (what kid gets excited over having grape tomatoes for a snack at preschool and prefers fruit over cake?). We're okay with the snacks, my sister in law is type 1 so we went to the supermarket and showed me how I can tell if a snack is okay or not, but right now it's the meals we're having some trouble with. I have been in touch with the dietician at his endo.'s office and she mentioned how many carbs we need to aim for with his snacks, but she forgot to mention about the meals, so I am waiting for a response about that.
Don't give up on the insulin therapy. There were T1D participant who were pregnant in one of the Artificial Pancreas studies who had there islet cells replenish themselves..and I believe are still off any insulin. The assumption is that it had to do with the diminished autoimmune system to protect the growing child and tight control of BGs during he test, which took a load off the participant's own islet/beta cells.
I was diagnosed at about the same age. I've had diabetes now for 33 years and I don't have any complications. When I was first diagnosed in 1978 my mother and I stayed at Joslin Clinic in Boston for two weeks. I don't know if they still offer a program like this but my mom felt it was the best thing she did so I'll tell you a little about it. We stayed there together where we had a room with two twin beds and our own bathroom. There were other parents and children there also. During the day time my mom would sit down with a nutritionist, the doctors, nurses etc... and be educated on all aspects of parenting a diabetic child. They did one on one and group session with the parents. I went with the other kids and got our own education. We did testing as a group and our injections as a group (positive peer pressure - I couldn't cry in front of the big kids & If they could do it I could do it). I can remember the nurse trying to get my mom to give me an injection - she was so nervous and I was flipping out but with time my mom got it. The nutritionist also spoke with the kids to teach them about food (remember I was 3 and I did absorb some of the information). So anyway this program was great. In 1978, no hospital came close to providing this standard of diabetic care - so we made the trip there. Now there are more and more hospitals that can provide excellent care and can provide the education you need although I believe Joslin is the best. Once I was 5 I started going to the camp run by Joslin (Clara Barton for girls / Joslin Camp for boys). I loved it and went there every year then eventually became a couselor for one summer after I graduated high school.