Lost, 1 week post T1 diagnosis

For the past 6 months or so we have noticed that Aidan has been "off", that this was not normal 3 year old behaivor. Drastic mood swings, he kept say "My engine is slow" and when he would get up-set his feet would get hot, then the constant thirst started along with the fatigue. I have a friend who has 2 kids with T1 and she offered to test him (so I would have a leg to stand on if I took him to the doctor) his blood sugar was 176 3+hrs after eating. I took him stright to the doctor and they tested him there....down to 90. A moth later (last Wed.) I took my daughter in for a follow up and they wanted to check his blood again....241! They pulled full labs and he was sent to Childrens National in D.C. After a night there they confirmed that he did have T1, but we have yet to start him on insulin because his number are so scattered. I know about the "honeymoon" but has anyone else not been put on insulin after diagnosis? They said it's because we caught it so early? I Feel like were just waiting for something to happen!!

Hi. So sorry to hear about your struggles. We've been there. When my son was diagnosed the endo literally said: "I'm not sure we really need to send you home giving insulin but I can't bring myself to do it." So we came home giving tiny, tiny doses. The honeymoon brings frustrations of its own but take advantage of it to learn more about management and dealing with the many emotions that come with diagnosis. Good luck.

I am interested in what others say about this. You must feel like you were left hanging a bit. I would wonder if a very small amount of a long acting insulin (lantus) might be a strategy. I am so sorry you are dealing with this- along with diagnosis comes so many emotions as a mom! Hang in there- and push your doctor team for answers. Second opinions are never a bad thing.

My son was dx'd at 18 months with a bg of 695. He was on insulin right away, but also with teeny tiny doses. (long and short acting insulin. He was a lot farther along than your son it sounds like. He did honeymoon but not for very long.

I've heard of others who aren't given insulin at first. I've also heard (from the TrialNet Study) that in some cases adding a small dose of insulin can take some of strain on the pancreas and might increase the honeymoon period.

I think getting a second opinion is a good idea.

Maybe you could ask to do a trial with a continuous glucose monitor so that you could get a real idea of what is going on?

Sorry you have to go through this, but the good news is, you and your son don't have to spend a week in the hospital with diabetic ketoacidosis — three cheers for that!

Here's what it sounds like to me: you caught his diabetes WAY earlier in the process than most people do. What's probably happening is, he is in the process of losing his beta cells, but he still has quite a few that function. So they are right not to put him in insulin because you're more likely to overcompensate and put him into a low than keep him stable.

The biggest stress factor on his pancreatic cells right now is going to be having to respond to rapid increases in blood glucose, which are caused by simple carbohydrates. So your goal is to prevent such increases whenever you can. You can do that by making sure that his carbs (sugars, breads, anything starchy) are balanced with protein (meat/dairy/eggs/beans) and fiber (non-starchy vegetables). These will slow down the absorption of the glucose so that his blood sugar rises more slowly. Also, make sure that he has something just before bed — peanut butter crackers or something similar, composed of carbs + fats + protein, because that will help keep his glucose levels up overnight. One of the issues in diabetes is, it doesn't just make your body unable to process glucose from food, it also makes it less able to release stored glucose when you really need it, during sleeping hours.

So then the other thing that helps is exercise — this is the reason they tell type 2 diabetics to get lots of exercise, because it allows insulin to work more efficiently. Meaning (and I got this straight from a physiology text I'm currently editing!) each insulin molecule can handle more glucose transfer during/after exercise than it does when you're sedentary. We see this all the time in the "big blue test" — even 15 minutes of moderate intensity exercise will drop sugars down substantially. So if he is high, he needs to do some jumping jacks or something. It only takes a short while to bring blood glucose levels down, and the good news is, since he's still producing his own insulin, he a) won't develop ketoacidosis and b) won't go low.

I would also check with TrialNet to see if you are near a center that is doing any trials in regard to inhibiting the autoimmune response and/or prolonging honeymoon — it may be that you can get him into a clinical trial where you can keep his still-functioning beta cells going for a while longer. He's a little younger than most people who enter clinical trials, but who knows — it's worth a shot.

Wishing you the best of luck!

So sorry to hear you’re joining the club, but know that you and Aidan are going to be OK :slight_smile: We didn’t have a similar experience, although my son diagnosed at age 2 quickly went off lantus for 6 months until the honeymoon started to come to a close. I wonder if now is a good time to start checking BGs before each meal, just to get on the habit?

I’m also writing b/c we, too, are in the DC area and my t1 son Jake is 3 years old. If you want to get together, let me know! We’re in Silver Spring MD.

Hugs to you!

Thanks everyone! I do feel like we were left hanging and to make matters worse he came down with a stomach bug the this past sunday and an upper resp. infection. I'm not sure where I would get a second opinion from, we go to Children's National in Washington D.C. It's a teaching hospital so there is not just one doctor seeing you, there are 6! (we are lucky to be so close to a hospital like this). I do think the diagnosis is right, but we do need more answers and a better plan.

I must emphatically echo Elizabeth's point about exercise. For many years before starting insulin, exercise was the only method I had for quickly correcting a high. Twenty minutes of aerobic exercise causes my BG to drop like a rock.

Oh, and all the advice in this thread is valid. Lots of good points.

Right now you're in the very beginning of dealing with this, and that's the hardest time in some ways; the flood of new information to absorb can seem overwhelming sometimes. Don't try to assimilate it all at once -- take small steps and learn one thing at a time. The picture will come into focus quicker than you think.

And welcome to the community!

I am checking his blood sugar levels before and after every meal. They only wanted us to do it twice a day, that didn't sit well with me. We are in Lusby, MD.

We are still trying to get his diet under control, we eat pretty healty already (no sodas, we use splenda, sugar free jelly that sort of thing) but he is 3 and all he wants to eat is mac n cheese and fruit loops! Trying to get him to eat anything he doesn't want to is pretty much impossible (he is VERY strong willed). The exercise thing is not an issue, especially now that it is getting warmer out. He just gets tired faster and now with this stomach bug he is not eating ANYTHING and is exhausted. I'm thinking what you do, that we caught it before it was full on diabetes not the honeymoon like the doctors want me to believe. Thanks for breaking it down, it's a lot to take in!!

Meant to say and forgot -- this does have the classic telltale signs of a honeymoon. Hard thing about honeymoons is that they are so erratic. Things will settle down and become more predictable (hence, controllable). It just takes time. Like so many things in life. :)

You're handling this exactly the right way. You and Aidan will be just fine in the end.

I am not a doctor - but I have never heard of a child not being put on insulin. Also checking bg only twice a day seems very...hmmm non pro-active. I recommend getting a second opinion. As in all things ymmv.

child with D Malcolm dx@2, 1996

We switched from endos at Children’s in DC to one at Johns Hopkins Mt Washington Pediatric Hosp in Baltimore, just in case you want another opinion. We found the vibe, attention, and progressive nature of Mt Washington more to our liking, although we know lots of people who just love Children’s in DC. Just holler if u want contact info :slight_smile:

My son was diagnosed at one year old by a random blood test with a 268 blood sugar and an A1C in the 5's. He was put on insulin right away, because his blood sugar was all over the map, and I am glad that he was. However, with the little ones they do modify the insulin doses depending on how the child and BG reacts. I do know of people with little kids that are put on two long acting shots a day, and then move to MDI with short and long. We tried that with my son and it didn't work, so then went to MDI with short and long within a week. Note we were caught very early and my son honeymooned for almost 18 months, which is more frustrating than not because we got random unexplained dives due to a sputtering pancreas. Note you can not get a CGM without support - they are not approved for anyone under 18 - so you have to get help from a pediatric endo to write letters to get it "off label". Also if you know another T1 family with a CGM, well, it's not legal to borrow a CGM, but you know. ;) You know what's best for your child - your guy means more than anything - just keep advocating - and you'll get the answers you need.

to me it sounds like you caught this real early and he is honeymooning, did they test for antibodies, i would not get any false hope up, you are just lucky to be checking frequently and have the opportunity to see when to add insulin when it is needed keep in mind most are not diagnosed until they are in or near DKA so you do have the upper hand in some way. be vigilant his body and your endo will know when to add in insulin, you have found your way to a great supportive community we may not have walked the same exact path as you are now but still have lots of advise, experience and most importantly support to offer. hang in there, dont get to crazy about his diet within reason he is 3, please treasure all that you always loved about your boy,diabetes is very challenging but treatable, with your help and support this will be part of him but will never BE him. nor will it BEAT you! we are here ask away! many blessings, amy

I called Johns Hopkins this morning after I did MORE research, and found that they are #8 in the nation for endo. I left a message for someone to call me back. Thanks for the info!!

Hi...My daughter was diagnosed in the honeymoon phase..we found out by accident when they took a routine urine sample at a well visit...We had the option of not doing insulin at first and to maintain good #s with a carb counting diet and exercise or starting a little long acting insulin once a day in the hopes of prolonging the honeymoon. After researching, we went with the insulin dose. It is now almost 2 years later and she is still honeymooning! She does now need insulin with her breakfast and dinner but not at lunch or snacks. However, we avoid high fructose corn syrup, and make sure every meal has protein and fiber with it to "give her pancreas a break". Our doctors can not believe she is still not "covering" all her meals. Perhaps you too could prolong the honeymoon; it gives you time to get used to all that good diabetes control entails. Good luck!

Awesome! If you're in Lusby, Mt Washington will definitely be a hike. It's 45 min drive for us. But, they're just amazing. Hope it works out! Our endo is actually leaving that practice, but it's really the incredible nurses who we meet with anyway (and we'll get assigned to a new endo this month). Our 3 year-old has an insulin pump and a CGM, Complete enthusiasm and support on their part when we expressed interest in both. - Jen

So sorry your little one was diagnosed. I am glad you are changing endos to get the best care possible care for him. It is very good you caught this early as he will not go into ketoacidosis as often happens. Not sure how long the honeymoon lasts; our DD was diagnosed at eight and looking back there was a six week period when the symptoms appeared; she had lows or shaky legs before diagnosis; onset was relatively quick. It does give you a little more time to get your bearings and adjust to this new life. The news is always quite a shock and you have a little more time to learn the basics, as well as look into any clinical trials that may be out there for honeymooners. You may be able to prolong the honeymoon further. I would remove the Fruit Loops from the house as well as most simple carbs so as not to put further strain on his remaining beta cells. When meeting with the new endo team, I would immediately talk to the nutritionist who will be able to help you with this. Once on insulin, he will be able to handle foods he should not eat now. Though cereal is Satan in the mornings; she does snack on cereal sometimes after school when her system can usually handle it. Good luck; you are doing a great job. I'm glad you have a close friend with children with D who can help guide you. In another year or two you'll feel like an old pro.