Discussion in 'Parents of Children with Type 1' started by Mellaril, Aug 17, 2012.
Ok, thanks Wilf, that is good to know.
From what I have seen on this site, when people talk about a rebound it is a high not a low. The theory is that the rebound is a very high number in response to a very low number. So when you said rebound low I didn't know what you meant.
Thanks, I have already read it.
I agree this is a derail and I was only responding to something that sooz started talking about and you responded to.
Back to the topic at hand.
Ok, sorry for the confusion. I was concerned about the OP's son.
No problem, just trying to get some clarity. Never said you were not concerned.
My son has been in a nice honeymoon since his diagnosis in April 2011. He gets 2 units of lantus and 1:40 ratio off humalog with meals. The insulin lets his pancreas rest and continue the honeymoon. I don't restrict carbs at all, he is a very hungry 9 year old. He might eat 100 carbs at one meal sometimes, but usually 50-60. Besides playing at the park, riding his bike, and other normal things kids do, I don't require him to be extra active to keep his blood sugars down. Keeping him healthy is first , but I also want him to feel as normal as possible.
This was our approach with our daughter as well.. :cwds:
Ok, I know this is not protocol, but why on earth don't they put kids like this on pumps where they could be given tiny amounts of insulin to keep them in range without severe lows like with the .5 units that were the littlest we could give?
To the OP, you're doing well to want his honeymoon prolonged as long as possible. My daughter still appears to have some beta cell function, and I hope to preserve that as long as possible. Tight control contributes to a prolonged honeymoon. I've seen a study that using a CGM also benefits the honeymoon lasting longer.
I was told by one CDE that it's better when the honeymoon ends. Huh? That also means in addition to insulin, the amylin is gone, the c-peptide is gone, and the roles they fill in our bodies is gone.
We had a nice 2+ year honeymoon, but I know some folks here had a nightmare of one with many unexpected lows from the body kicking out insulin. We had a few through the two years, but never anything crazy. But I have heard some parents say they were happy when the honeymoon ended because their child was easier to control.
I get the impression you don't like insulin or you don't think insulin is needed in your child's situation. Which stand is it, if I may ask, and why?
I'm also curious as to how your child was dx at the routine exam. Were there any signs or is there a history of Type 1 in the family? Thanks.:cwds:
This is exactly why we got the pump, (that and we had met our insurance deductible for the year). When we got it our son did not need any basal, so we just used it for carb coverage. It wasn't long though before he needed a little basal throughout the day, but none at night. Now he needs it all the time. It really comes in handy to be able to give a 0.05 correction to nudge him down. We couldn't do that even with the diluted insulin we were using, at least not with much accuracy.
My son was Dx at age 5 in Jan 2012 and has not had any insulin since March - his A1C the end of July was 6.1 and the Endo team was very happy with how his honeymoon stage is going and don't want to change anything until starts waking up in the 200+ range. Then we will figure out his insulin needs as when he was on insulin even the smallest doses would would crash him midmorning and afternoon. He weighs 45 pounds and is a very healthy and active little boy. He will eat about 45-70 carbs at each meal and a 15 carb snack twice a day.
I disagree. There is a social and emotional cost to a child to teach them that even though they have a medical condition, all they have to do is take medicine and no other lifestyle changes are required. There is a cost to sheltering a child from truth and reality- trying to tell them that life is fair and everyone can act identically regardless of any circumstances.
We are attempting to raise our children using truth and trying to avoid some damaging fallacies that have cropped up in our culture in the last century. The truth we will attempt to teach our type 1 diabetic son is that he isn't like other people and he can't eat like other people.
What's more damaging to someone and to society? Telling him that he can do whatever he wants and there are no consequences? Telling him life will be always be fair and whatever anyone else has, he can have too? If I have a lactose intolerant child am I harming him if I don't give him milk? What about restricting peanuts from a child that is allergic?
I believe the idea that insulin alone is a treatment for type 1 diabetes is wrong. Carb restriction along with paying attention to the glycemic index of foods are as important as insulin in my opinion.
So our whole family eats different. My other 4 boys don't get to eat bread or sugar. Oh the horror! Child abuse! How can a child survive without certain foods! I'm sure you are appalled and there's no doubt in your mind they will be scarred for life.
I believe that our children will grow up to to men that will already have a working knowledge about love, sacrifice, and what it means to put others need before theirs. I believe that our son with type 1 will completely understand and embrace that staying healthy and living a long and fruitful life will require sacrifice in the form of diet restriction. I believe those children that are told there are no hard decisions, no sacrifices, and life is fair will be the ones that will suffer the costs and they will continue to cost us as a society.
I worked with a CDE I respected who said that kids caught very early in onset can be put on very small amounts of Lantus that can extend the honeymoon.
My only suggestions are:
1. If you can delay full onset with one shot of Lantus a day, that will be a great benefit. Test often to make sure the Lantus is not driving a low, keep on the conservative side until you see how things can swing.
2. Test regularly and check for ketones -- this is imperative, because diabetes can "kick in" any time and you don't want to be sideswiped by DKA after months, or even years, of an intense honeymoon. One advantage of adding Lantus into the schedule is that it can help -- help -- in preventing DKA, which is a big risk right now since you can't see inside to tell when those beta cells are and aren't being assaulted.
3. I think it's reasonable to trade some lifestyle changes for a delay in onset -- frankly, no matter how hard a parent tries to keep life "normal" for a Type 1 kid the lifestyle changes involved with diabetes management are going to be far greater than adding activity and reducing carbs right now are. However, I would consider the following:
a. Carbohydrates have some impact on growth and development -- if Selah were an adult in my care, I would consider a drastically low or no carb diet, but since she is a child the nutritional needs can be different. I'd look into that for your son.
b. There is a huge differential in diet and activity in this country, and I think it's reasonable for your goals to choose the place on the spectrum that works best for your child and not worry about where other kids are on the spectrum. The one thing I'd caution is that doing things unconventionally can be very time and energy consuming, and you don't want to make food the center of your child's life -- as someone who has been there, I sincerely believe the healthiest approach to eating is for food to not be something you are always thinking about -- a marathon approach to Type 1 should, I think, downplay the importance of food in your life, not enlarge it. Hard to do, but a thought.
c. I'm sure you're already doing this, but do keep in mind the speed of the carbs he eats. I suspect your attempt to prolong the honeymoon would be as well served by giving him 50 carbs per meal of slow carbs as by giving him 20 carbs per meal of fast carbs. In Selah, the fast carbs spike her bg and the spike is going to provoke a faster, harder insulin response which seems more likely to get "noticed" by the autoimmune condition.
d. Fat can convert to glucose, also, so don't be surprised by that.
4. I'd make sure he is Type 1 -- has he had an anti-body test? Type 2 is also a genetic condition and not "caused" by lifestyle, although it can sometimes be kept under wraps by it. I don't know the age of your child, but I believe some folks with Type 2 probably have had it since childhood, they spike over 200 after meals for years and years, they don't "see" the diabetes until symptoms develop. These early tests could have caught your son's Type 2 decades before it would have been caught before, with the result being a vastly healthier and longer life. Of course, if you have reason to be certain it is Type 1, then ignore #4!
Oh, and regarding your actual question about the endo, it's very hard to find folks to help with these out of the box questions. You can try setting up a number of appointments and doing interviews, but ped endos often are pretty full up with all the new onsets. You could also ask your current endo if there is someone she can refer you to that would be willing to try to add Lantus in, maybe someone in her practice.
I would recommend reading Hanas's book on diabetes as well as Think Like a Pancreas and Using Insuin, then detail for the endo that you are keeping good records, watching ketones, testing frequently, prepared for lows, and then once she has confidence in your abilities and your level of caution she might be more willing to work with you in a more complex way.
this is exactly what our happened with our son...we already had one child with D, and spotted the signs quite early.....with 10 units of Levimir, his honeymoon lasted 10 months, and his diet was ever restricted.....when his numbers started jumping up, that's when we increased the long acting and started on Novolog for carbs/corrections.
Insulin is your friend......
Like Lisa mentions, determining accuracy of the Type 1 diagnosis is a good idea. Besides Type 1 and Type 2, there are other forms of diabetes. Both T1 and T2 are felt to have a genetic component, as well as environmental triggers. Monogenic diabetes, much less common than T1 and T2, is caused by a genetic mutation. MODY, one of the two main types of Monogenic Diabetes, is usually diagnosed in childhood and young adulthood. Testing for MODY may be indicated when the diabetes doesn't quite fit the more common types. It is usually antibody-negative however, so if your child is antibody-positive it may not even be a consideration.
I agree with those who've stated modifying carb intake seems like a helpful part of the plan. Easing the stress on the pancreas, no matter what type of diabetes is involved, can only help!
Are there some deleted posts I missed? I don't see what you seem to be responding to.
Don't think so. Responding to post 10 I believe.
It's all right there.
The second post in over a year ... you have to wonder ... pumps on amusement rides and this one ...
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