Honeymoon or Study drug?

My son was diagnosed at the end of Oct 2010. For the first six weeks of weeks he was taking an average of 15 units of humulog throughout the day and 12 units of lantus at night. Then he participated in the Defend-2 study (dec 10-18) with 8 days of infusions. We have seen a slow decrease in insulin requirements. In fact two weeks ago we went to the endo for a study follow up and the doctor changed his ratio from a 1:15 to a 1:20, then yesterday he changed it again to a 1:30. His average insulin usage since Jan 1 has been 10 units during the day and still 12 lantus at night. Today is the first day of 1:30 and it is looking like he will take only 5 units.

So my question is; is this a typical honeymoon? He’s only been diagnosed for 3 1/2 months. Of course I want to believe that he got the study drug, but don’t want to get my hopes up (he did not have significant side affects like some others). If this is typical of a honeymoon, I’d like to know. :slight_smile: thanks for your help.

My son is 12 years old. Diagnosed October 6, 2010. His breakfast and lunch ratio is 1:45 and dinner is 1:35. He average 5-6 units of humalog per day and his lantus is 7 units. He weighs 105 pounds…based on all of that, I was told he was 1/3 of the way through the honeymoon stage. Not sure if any of this helps.

Some kids do require less insulin after a few weeks of use. It’s almost like the body gets the support it needs and then it produces a little more of its own insulin. Your son is doing well whether he got the study drug or is just honeymooning. He’s had a pretty significant drop though, so maybe it is the study drug. Will you ever get to find out for sure?

Thanks for the replies. Jerodsmom, based on what you son is doing, it sounds like this is definiltey a honeymoon. I just didn’t realize the honeymoon would be so good. We thought the drop from 15 to 10 units a day was great, so when it got so much better we started to wonder if it was the study drug. My son’s blood sugar is typically in the 80’s before meals, unless he goes low first and has a snack then it may be 110 or so. We talked to our endo about decreasing lantus, because we thought that may be the issue. Because my son wakes up at about 100 every morning, he wanted to keep it the same, and adjust the humulog instead. He said he wants to preserve beta cell function. We were in a huge hurry at that appt, so I didn’t have time to ask alot of questions, but the impression I got was that the higher dose of lantus must taking the stress off of his pancreas to produce his own insulin, and the process of overworking his pancreas is what could lead to end of the honeymoon… ???

I think if I understand it all correctly…at first they are going to require more insulin because their bodies need to adjust to a normal blood glucose. Then once they get there, because they are honeymoooning and their pancreas is still producing insulin, they won’t need as much insulin injections to keep at a normal range.

How old is your son?

He is 12 and 110 pounds, his A1C in the hospital was 8.4, so I think we actually had similar situations.

lol similiar situation and similar boys. My son is 12…109 pounds!

We have his 4 month check up on Monday and I intend to nicely fight for the pump. I know a lot of doctors want to wait until they are out of the honeymoon stage but I cannot find anything that shows me why this is a better way to go. With the pump it will put him at 1 shot every 3 days instead of 4 shots per day. He is a 12 year old boy and the strict eating schedule is getting to him. With the pump eating is less structured (for a lack of a better word). I talked to our nurse and she said that she thinks I have valid points and that because we have nailed this so well up until this point that personally she thinks it would work well for us. But unfortunately she doesnt call the shots. I am pleased with the doctors in this practice, but when they all started practicing, things were quite different and it seems like they dont move to the year 2011 as easily as others.

Where are you located lindanu?

We are in Raleigh NC. Our endo is young. I briefly mentioned the pump at the last visit, but my son actually said maybe he should wait since his insulin usage was going down. My son has no problem with the schedule. He eats breakfast, lunch and dinner and if he wants he has a big snack (a fourth meal) before bed. We have done that since the beginning. He often times has 50+ carbs before bed then 1/2 of a nomal dose of insulin to cover it. We are also flexible on his meals. Typically he has about 60 carbes for breakfast and lunch and 75-100 for dinner, plus 25-60 before bed, however, if he wants waffles in the morning and it is 100 carbs that is what he has. I’m not sure how i would feel if he wanted a 100 carb breakfast everyday, but luckily I don’t have to worry about it. I think my older son would have a much harder time with diabetes since he grazes all day long.

Talking to our dietician and I know they all have different ideas…if my son wanted 100 carbs for breakfast every day, no big deal as long as he counted the carbs and compensated with insulin. With that said…his breakfast is usually under 60 carbs…he is not a big morning eater. Lunch is usually around 75 carbs…dinner can go between 80-120 carbs, but typically right around 100. He can have a snack between each meal without insulin as long as it is 30 carbs or less. Weekends are rough because like any typical 12 year old, he wants to sleep in. When he gets up he isnt ready to eat and we have him test and as long as his BG is good, we let him wait a bit. Only problem with this is that each meal is consumed later so a lot of times we are eating dinner on a Saturday at 7-8 pm. I think the problem with my son is that his snacks arent always filling and he is left wanting more. We tell him he needs to make better choices with snacks, but again…he is 12 years old and coming home from school and munching on celery and carrots isnt going to fly.

We are in the same situation. Normally my son is on the bus at 7:30a. Today he woke up at 7:30am. I don’t make him test first thing since I know he can feel his lows. He is typically 100ish at 7am. So this morning I had him test/eat at 9am, he would have been happy to wait another hour. When he tested his BG was 80. I know alot of diabetics eat on schedule but we don’t find we need to on the weekend (perhaps when the honeymoon is over this will change). My son never asks for a snack unless he feels low. Sometimes is isn’t really low, Maybe 80-90 and in that case he would still have a snack because he was hungry. He still does an under 15 carb snack. If he is still hungry he would have slim jims, string cheese or eggs, but that doesn’t happen as much anymore. My son eats the 100 calorie pack of brownies or chocolate covered pretzels, so it’s kind of a treat too. No celery or carrots in our house either. Although it may seem he eats alot of sweets, he does eat some healthy stuff too like fish, spinach, broccoli and banana’s. Unfortunately our healthy list isn’t as long as our junk list… The main thing is that he doesn’t feel cheated or deprived and never complains about having diabetes at all. The only thing he doesn’t like is the lantus shot. Additionally, he refuses to give his own shots, so he has his issues.

we do the 100 calorie packs too. Its nice because he gets normal kid snacks yet the carbs are counted and the mind over matter thing sets in and when he can eat the whole bag I think it makes him content. His snacks are probably the unhealthy part of his eating. If your son likes yogurt, Krogers carries Carb Master yogurt…only 4 carbs for the container. My son says it does have a different texture then normal yogurt but still likes it.

See how different doctors are. 80 we would have to treat him for a low. My son typically wakes up and is around 125…I dont think we have ever seen under 100 for his morning BG.

My son had a similar pattern and is not participating in a drug study. He was diagnosed in Novembef of 2010, so we aren’t quite at the 4 month mark. When he was in the hospital after his diagnosis, he was on 21 units of Lantus and a ratio of 1:15 of Humalog for all meals. 3-1/2 months later, he takes 12 units of Lantus and his ratios are 1:40 for brrakfast, 1:35 for lunch, and 1:30 for dinner. His snack ratio varies depending on time of day, activity level and bg before his snack. For instance, during basketball season, he would be in the high-70s to mid-80s post-practice in the morning. We experimented with different ratios, and he woud always go low before lunch. Finally, our school nurse asked if we could try no insulin with his morning snack, and that seems to work. With about a 25 carb snack and no insulin, he is usually around 80 before lunch (3 hours post-snack). Other than a week or so when he had to take a course of a steroid, he hasn’t been high since he got out of the hospital.

I know things will get harder to manage when his honeymoon is over, but right now, our biggest issue is keeping him from going low. He has more lows than I think he should (never crazy low, just enough to make him feel shaky - usually low 70s, high 60s, a couple of high 50s and one high 40s). In all cases, he has been fully able to treat the low without intervention.

When he went into the honeymoon, the endo said it could last a few weeks to a few months. I prayed it would just last through the holidays, so he could have one last “normal” holiday season. Thankfully, we’ve gotten even more time than I hoped and prayed for. I’m trying to keep that in perspective for when this easier time comes to an end.

I hope your son’s decreased insulin needs mean that the drug is working wonders for him and that his participation in the study proves to be what you hoped.

Best wishes!

Normally we are at 100, he was 80 this morning because he had been up for over an hour when he tested. I’m sure our doctors would not like to see an 80 every morning. His average on his meter is about 100, of course he only tests immediately before meals, after school and before bed. Never one to two hours after eating which would give him higher numbers I’m sure.

Okay, so now I’m sure this is just a honeymoon.

Yes my son only tests right before meals, after school and at bedtime too, unless he feels “funny” then he will test to make sure he isnt having a low. I just did his average on his meter Thursday and his average was 137…I would think anything between 80-150 would be good as an average.

You are trying to estimate if he got the drug, not the placebo, and if the drug worked? I would say the results seem promising. Don’t think it is usual to go from ICR of 1 to 15 up to 1 to 30, and he is using so much less insulin. But there are some kids who have a very strong atypical honeymoon. I would go on the assumption that you think he did get the drug and time will tell if it has extended his honeymoon, for how long. P.S. It really does not matter how much insulin he takes, it’s the BS numbers he has. First year or so, she did take less insulin (not a long honeymoon, maybe four months) but her blood sugars were really good for a year and a half, rarely going over 200. Because there must have been some residual beta cell function, however slight. If he got the drug you may see this effect for years. Fingers crossed for you! P.S. Her ICR was 1 to 20 and in four month’s time 1 to 15. Strong honeymoon effect could be caused either because he has a strong honeymoon or the drug pushed him into honeymoon status for a very long period of time to come. Time will tell. Stay positive!

Today has been an interesting day. His BG was 80 at 9am and he ate 100 carbs for breakfast and had 2 units. Just last week he would have had 4 units for this same breakfast. So I was really interested to see what would happen at lunch. He was slightly low at 67. That really suprised me. He had 89 carbs for lunch at around 1pm and had another 2 units. then at 5:30 he tests and his BG is 77. He has a cheese stick and a 5 carb chocolate. At 6:30 he tests again for dinner and his BG is 86. Obviously really happy with those numbers especially since he is having a BIG carb day. Typically he has 185-285 carbs in a day, so were leaning towards the higher number today.

Hi there. My son was dxed Nov 17th. He is 15. My son just finished the trial and has had a major change in his bolus intake. His A1C was 10.5 in the hospital and was 6.9 this week. I am so hopeful that it is the clinical trial drug. He did get the bad headache as the doses went up by the 3rd day. He is not covering any of his food during the day and staying between 80 in the AM and 130 all day w NO insulin cover. His Lantis has been dropped from 16 to 10. We have to work hard to get him up to 140 for his lacrosse practice and games. My sons endo. did not do the trail and does not seem interested in what he went through. Kind of disappointing, but we really like our trail physician. This could be the crulty of a prolonged honeymoon phase, but I am keepin the faith that it is the clinical trial drug that is working for him. I will pray for your son as well every day. I know how hard it was to decide to do the trail and the hopes you have for him. Please lets keep in touch about any changes. Either way our boys will be great people w great lives. Hang in there mama!

My daughter was diagnosed June 24 2010 at the age of 9. We put our son in the trial net study and he tested positve for the 3 antibodies. Yesterday he was diagnosed with type 1. His A1C is 4.6, we are told he is a very rare case to be diagnosed so early. They put our son on 5 units of lantus in the morning, with no other short acting insulin. Our doctor said he can be in the honeymoon stage with just the lantus for months or years!!! Our doctor has one patient that has been on only lantus for ten years. I think everyone’s honeymoon period is unique to them. Hope this helps.

Hey Julie, how much bolus was Cole taking prior to the infusions? Did you infuse at the end of January?