Discussion in 'Parents of Children with Type 1' started by mama2mm, Sep 10, 2011.
I'm so sorry. You're instincts were right on.
Hi! I don't know where in NJ you are, but we use Morristown Memorial Ped Endo. Jack was 2y when diagnosed and on a pump within six weeks precisely because he had such drastic swings in his BS.
I have found though, that the better educated you are, the better you are able to "state your case". My niece also goes to the same practice, same doctor and my SIL and I have different experiences. SIL does not belong to this forum nor has she read the recommended books. Her theory is it is the endo's job to decipher numbers and make changes. I disagree as I have learned what may cause changes in Jack's BS based on activity, mood, types of food
I learned 90% of what I know on this site and have been able to discuss that with my CDE and nutritionist.
I don't believe that counting carbs for a young child is "too much", it is part of D life and the sooner you learn, the sooner your child will learn and it becomes natural to do so (I decided to treat myself to ice cream the other night and actually measured out 1/2 cup)
Promise: it will all get easier and better.
I am shocked reading this. If your daughter is 100 before dinner and eats baked chicken, broccoli and a salad she gets the same amount of insulin as the next night when she eats spaghetti and garlic bread?
A breakfast of pancakes and syrup gets the same insulin as scrambled eggs?
It was so brilliant of you to figure out that this is wrong and come here to ask about it. You need to change this immediately, though. It cannot work.
Unless you somehow misunderstood the regimen (what do you mean by a "standard" breakfast?), your doctor should be turned in to the state medical licensing board. This is in no way the proper way to dose a child with type 1 diabetes. Very very dangerous.
I can't even imagine how dosage changes are made at your appointments. The numbers must be all over the place.
We were on the same sliding scale when my daughter was dx. We didn't have the huge fluctuation in numbers only because she had a very strong honeymoon for 5 months after dx. However, that abruptly ended and her numbers were out of control. The dr. wanted us to wait until her next appt. to learn carb counting but that wasn't acceptable. I went out on my own and got the info and figured it out. It isn't rocket science. A lot of it is trial and error.
I just saw that you are in NJ. I'm wondering if you are going to St. Peter's? That is where we ended up and were on the same exact sliding scale and calling in the numbers every day.
So a sliding scale but no consistency in carbs each meal?
We started off on a sliding scale too but we were taught to have a set number of carbs at each meal.
ETA: Maybe bringing up the doctor to a medical board is an over reaction since others have been using the same regemin. But I don't understand how could you ever expect 1 unit to handle 10 grams and 120 grams the same way? Even in a honeymoon.
We are almost 6 months since dx and are still using the sliding scale due to strong honeymoon. However, we have set number of carbs with each meal. If we go above or below the recommended carbs, we adjust. We also adjust for slow digesting meal.
Is it possible this what you have?
I think some people are getting a bit confused. A "sliding scale" with a set amount of carbs per meal is a typical regime, particularly for the newly diagosed. A sliding scale with no carb limits, where the same amount of insulin is dosed for 20 or 120 carbs is far from typical and just plain dangerous. I have never heard of anyone using such an insulin regime before and I have been on these boards since 2006.
I agree, bringing them up to the medical board may be a little over the top. It isn't uncommon for doctors to use the sliding scale initially. We were told that they feel that throwing carb counting at you when first diagnosed is overwhelming. I don't agree with that but I understand the thought. We were on the same exact sliding scale as OP (wondering if it was the same dr. I see we are both in NJ). But there were set carbs. I can't remember exactly but I want to say we were supposed to be around 30 carbs (which is ridiculous!) for meals and maybe 15 for snacks?
I see that the OP was dx in January though - so it is time to move on!
I seems what this system dtoes is correct bg at mealtime and give a unit of insulin for each meal -- any meal, ever.
The OP's daughter has been on this system for 8 months and there is no indication her endo would change it any time soon.
There's certainly a chance there has been a misunderstanding, but the tone of the OP leads me to believe that's unlikely. Also, even if the system was misunderstood, in 8 months the team should have detected that there was a problem and corrected it, especially as mom and dad are saying there's a problem.
So if everything is as it seems, I would not even be one to consider this a sanctioning moment. I find this criminal. New moms know absolutely nothing about diabetes and they believe their endo knows what to do. This child has been in unnecessary pain for 8 months, and the life of this family has been disrupted, because an endo is using a plan not used anywhere else or recommended by any organization that essentially guarantees bad blood sugar numbers (because it is entirely reactive -- this girl gets insulin only in reaction to bg rises, not in anticipation of them. If she goes to a birthday party and eats 200 carbs of cake and ice cream but starts under 100, she gets 1 unit of insulin. This would send Selah -- I don't even want to do the math on that one).
I don't want to beat this into the ground, I'll just sign off that I hope the best for the OP and look forward to her signing on here in weeks to come and telling us how wonderful her daughter feels and how much easier life has become.
We were given a sliding scale when Steven was first diagnosed but he was on a different insulin regimen. We did have to give him a certain amount of carbs say 35-45 for breakfast and 15-25 for 3 snacks per day. He also had a correction scale that we worked with. There isnt any way to keep blood sugars from bouncing around if carbs are not being counted. I would ask for a different endo or CDE to work with. This one sounds very confused or maybe is used to working with adults with type 2
well, the good news is that you can do something about it and now you know there's nothing "wrong" with her diabetes. There is something very wrong with how you were taught.
The very first thing I would do THIS MINUTE until you talk to your endo tomorrow, is pick an average meal that seems to work ok (no high or low after) and figure out how many carbs are in that meal (if you've never been taught carb counting then we can help or you can go to calorieking.com and get some rough estimates) Then, until you get your dr feed about that same size meal at each subsequent meal. That should at least get you a little more safety.
Typical sliding scale, like has already been mentioned, requires a set number of carbs at each meal - typical for little kids is about 45-60 at each.
Any good management includes the above, plus counting carbohydrates. The result is your daughter will feel better.
Good advice. I second doing this immediately.
In addition, you should test a couple hours after each meal to get an idea of whether or not your estimate is working. If you have a low before the 2 hours are up, then add carbs to the future meals. If the 2 hour mark is high, reduce the carbs each meal.
This is only a stop-gap measure for safety until you can get on a plan where insulin is adjusted to the number of carbs instead of adjusting meals to the insulin.
I have a question for all the posters above who said they are on a similar plan of sliding scale, is there anyone else who doesn't have a set number of carbs per meal?
I think the OP needs to know if what they have been prescribed is extremely unusual or even negligent. I believe that it is completely out of the ordinary and dangerous and they should be questioning the competency of their doctor.
Usually with a sliding scale theres a set amount of carbs to be eaten as well.. You are doing lantus and novalog which is what people use to do carb counting. I can't believe your endo says that carb counting is to hard for little kids.. We started at 2, almost 3yrs, with carb counting, trying to measure out .25u of insulin when we had to.. It CAN be done, the endo needs to give you the tools to do it. I would switch endo's asap, in the mean time I'd trying and keep her meals consistent in the amount of carbs and see if you can figure out a carb ratio on your own.. so if every meal she's getting 60 carbs, and she's consistently low or high afterwards, then you know she can have a few more carbs, or less carbs.
I can't even understand how the ENDO would make adjustments with nothing being consistent.
Yes! We are going to St. Peters. I fax in DD's #'s weekly. All they do to adjust is if her BS is too high they have me up her Novolog .5 units and "see how that works out."
And there definitely is no talk of set # of carbs per meal. I was just focusing on carb/protein balance and portion control like I was taught. They did mention that snacks should be between 15-30g of carbs. That's the only time they would mention counting carbs.
We have an appt in October, but I'm calling 1st thing tomorrow! Untill then, I'm going to do everything in my power to relearn everything. I'm already a kook when it comes to nutrition and reading labels. Even before DD diagnosis, I was pretty obsessive about nutrition. So, if given the proper tools I'm sure things will be different. I hope they will be!
That's great to hear - I'm glad you're getting things sorted. There are two main ways to make the BGs sort of work with T1, and that is to either give the same number of carbs and the same amount of insulin every day (with some adjustments based on BG) or to vary carbs and vary insulin accordingly. At the moment you're varying carbs but not insulin, which is.. bizarre. If your endo isn't happy to work to a place where you can adjust insulin to carbs, I'd be finding a new endo, quickly.
That said, don't expect your daughter to have flat blood sugars. She totally won't. But I literally can't even imagine what my BGs would be like if I was on your regimen. I'm still, as in my earlier post, completely flabbergasted that any endo would recommend it for an extended period.
And the whole thing about carb counting being too hard with a young child just shows the endo's ignorance, IMHO. Anyone who thinks that the difficulty of carb counting is good enough reason to put a child (and their parents) through unneccessary BG extremes doesn't quite have their priorities in the right order. I'm angry with your endo. Can you tell?
Once you have a new regimen worked out, come here with any questions. It's a great forum for constructive advice with a lot of support mixed in.
Are you seeing Skuza or Salas? PM me if you want.
I'm so glad.
May I also recommend very frequent blood sugar tests and, like Frizzy said, consistent carb numbers at meals until you can get some help.
Have you called Donna, the CDE there? She is a pain but she will help you out. You have to be very direct and tell her that this is not working for you.
This is the exact plan we were on. I was just looking through my paperwork trying to find the nutrition info they gave me in the hospital. There were fixed carbs for snack and meals. I don't know why 30 is sticking out in my head but maybe it was 60 (30 doesn't seem like very much). Did you speak with the dietician in the hospital? Did she give you a food list with approx. serving sizes and carbs for the serving size?
Anway, 8 months on this plan is too long. Call Donna and tell her what you need. They work for you.
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