Newly diagnosed---worried

Very interesting. We often see "small" amounts of ketones and in the last two days we've been getting really close to the moderate level. I've been interpreting the level of concern over ketones along with magnitude of bg...e.g., a lot of ketones and a smaller high would warrant more concern...

could you provide some context around bg and ketones and when you'd think you'd seen enough to make a change in the basal?:cwds:

 

I heard that you get ketones with a rebound as well.. Maybe from the Hanas book?

 

yep, that's what our CDE always told us as well - it was a way to tell if overnight you've been low and that waking number was just a normal high or a rebound.

we should find some reference for this though.

 

I m glad you are getting a CGM to help figure out what is going on....and you already received great information from many experienced parents.

In the beginning I was reluctant to just go by what was posted online, but after reading "think Like a Pancreas" and "using Insulin"....I started to see not only have the parents on CWD done their homework they live with D 24/7.....
which motivates us more to be accurate in treating D...


I hope you get some sleep soon....I hope the test lab results come back soon

 

just a thought
there are so many variables with Diabetes

and until you know what is going on with your child's health you may have unusual BG numbers with thyroid issues, stomach issues, or even illness.

I know you posted TDD, some carbs, and a few Bg numbers...its just a snapshot of what is going on....and you see the whole picture....

Hopefully your Endo or Dr is going over the bigger picture...with you.

I was intrigued by the responses...and still getting higher numbers,
problem solving is one of the biggest challenges with Diabetes...because of all the variables...for example high Bg can be caused by ...growth hormones, illness, medications, underlying medical condition, and even some really simple stuff as unwashed hands *(sugar-coated), sugary fancy soaps, child giving the shot or NOt giving the shot, and not rotating the shots, inaccurate carb counting, expired insulin, and ect.
(I know you are still new to this , but I am impressed how much you know and honestly...I think your doing a great job...investigating....just remember...there could be a factor we aren't seeing...)

Your corrections show that the insulin is indeed working....and then increasing again....I was debating the rebound effect too...how much can the liver rebound?
It almost appears that it could be the basal...but that conflicts with the weight of the child. Honestly I would be curious to see if there is something else to factor in...hopefully your last visit will cue you in to why the hair loss and stomach issues....it may just be a small part...but could effect everything.

 

Sure. First you should know that we have a blood ketone meter, which reads up-to-the minute. Urine ketones are lagged by a few hours, but also show an average over the last few hours behavior.

Ketones means the body is burning fat, and it almost always means more insulin is needed.

My son gets ketones VERY VERY easily. I've probably cleared out large ketones (4.0 on the blood meter) 50 or so times. Of those 50 times, only twice has he been on the low bg side, and it was due to sickness.

Every other times, his BG was very high, and the ketones were because his basal was too low. Not by a lot - often by 0.05u/h, which is 1.2u a day. Alex never got ketones at all until he pumped, and then suddenly he became very prone to them.

He never had ketones on Lantus, since it's such a good, stable insulin. I'm very surprised, and why the ketones in your case worries me a great deal. If are on Lantus and honeymooning, the chance of ketones should be remote.

Now, we don't worry about it too much. Sure, we are quick and serious, but we don't sweat. They clear very quickly, and we know how to do it.

If you're on Lantus, all signs so far are pointing to need _more_ of it, despite the large amount. I hate to harp on the obvious, but this stuff does happen. I would ask you to check for the 50th time... are you sure you are giving in the butt so it lasts all day, sure that's it's not spoiled by heat, cold, or frost, sure you are not mixing it with other insulins types, sure that it's not contaminated by air, air bubbles, sure you have the right syringe markings (Alex's schoool NURSE thought that surely 1u isn't that small, 1u must be "10" and was prepared to give him a 50u shot once!!!) proper injection technique, all that stuff.

But you're clearly smart, so I doubt the above is case. I wonder if there's something else, some other condition, causing unusual insulin resistance here.

A lot of folks here know we had a rough pump start precisely because of ketones. Those 50+ ketone episodes were not fun. It turns out we were not aggressive enough in basal changes. Once I got on the ball and learned how to adjust basals, hourly if needed, our ketone problems pretty much disappeared. Now I see them only once in a while when we have a pod failure, but can get rid of them quite easily.

 

Definitely will ask the endo for a blood ketone monitor next opportunity.

We're on Levemir--I'm glad you asked for the 50th time because we weren't told to give the long-acting insulin any differently than her Novalog---we're giving it in the back of her arm...its the only spot on her body other than her butt where she has ANY cushioning these days. Everything else is solid; many years working in a laboratory so those kinds of checks and double-checks are second nature to me. My husband, on the other hand, is not so crazy about my watching his techniques and handling...

That's a new sax photo. Its nice.

 

Try switching to her bootie, it might make it last longer. Might be part of why you see better numbers at night, and high numbers in the day. :cwds:

 

We had the exact same problem for the first 3 months after dx, except our difficulties also included severely symptomatic hypo's on the same days as BG's in the high 300's. In your case it sounds like more insulin is needed, but understandably it may be difficult to increase the insulin.

If your endo thinks that the only reason for random extreme blood sugar is due to carb counting or insulin administration errors, your endo is one of those who may have gotten straight A's in med school but who knows little about the actual management of D. The idea that blood sugar stays in line when you "do everything right" is rarely the reality (glad the endo approved the CGM, and hopefully the CGM data will be educational for both you and the endo).

To answer your question #2, I recommend getting an insulin pump and CGM as soon as possible. If you can not get both, the CGM is priority. The CGM lets you see the BG at all times, including the trends and slope of the rise and fall at any moment. From there, managing is pretty straightforward. Some lucky people can manage without one. If you can get a pump too, you can administer insulin precisely in small increments, but even shots will be more effective if using a CGM.

We started the pump at 3 months after dx, and the CGM a month later. For us, this was way too long of a wait after dx. Since we started with the pump and CGM our daughter has maintained an A1C in the 5.3 to 5.6 range for all of the past 2-1/2 years, without any severe hypos. Not everyone does as well as we do, as our daughter attends to her CGM alerts at all times and makes very frequent adjustments to keep her BG in a tight range. However, most people using CGM's do very well with BG control, and have fewer worries as a result of knowing the BG at all times.

While you are looking at the options, there is no need to bring a child with BG 350 to the ER (assuming there are no other symptoms). They need more insulin and you can always try starting with the smallest doses or increases to your long-acting insulin, and testing frequently to see the effect.

There are many ways to manage D but this is my recommendation. Good luck!

 

This makes sense when thinking of a newly dx child, but what if she is one of the kids who have no honeymoon? Is the amount still to high then? Our daughter weighs 90lb, around 40kg, and takes up to 70+u/day, so her ratio is almost 2:1.

 

Thanks for the perspective---I'm very pleased to see that your endo didn't make you wait very long for the pump or CGM... I'm with you on the priority for the CGM and I hope that it happens soon. Does anyone know what the standard of care is in that regard?

I've heard that many endos like to wait until kids in this early school age period are able to demonstrate some understanding of the relationship between insulin and carbs. Frankly, I think Lindsay is doing GREAT but it will be longer than I'd like to wait for her to show much competence with the nitty gritty....

Then again, I'm sure when bg is extremely challenging that the age doesn't matter so much. I'm ready for CGM.

 

Celiac

I don't mean to scare you but your description of bloating hair loss and low percentile and constipation sounds just like my daughter with Celiac. She is not diabetic my son is but celiac often goes hand and hand with diabetes and causes absorbtion issues. I would ask to a biopsy to rule out Celiac

 

Darryl your daughter is working through puberty, needing more insulin than she ever will again in her life.. :cwds:

Kathy, note that you really shouldn't be seeing ketones on MDI, if your daughter is eating all those carbs and getting all that insulin. I'm glad you're getting her checked out.

 

You're rght: it does sound that way. We're dong lots of testing next week. I'll be sure to update all the kind and concerned folks who have taken time to offer support and nsigh. Thanks so much.

 

There isn't really any one standard of care for T1, there are many. Advances in medicine (anything more complex than a simple new "pill") can take many years to propagate through to doctors. All I can tell you is that insulin pumps have been around for a long time, and CGM's were approved for use in children down to the age of 7 around 3 years go. Even though FDA approval starts at age 7, doctors routinely prescribe pumps at any age, and CGM's for children as young as 1-2 year old. Age 4 is fine for either a pump and a CGM, although it will seem at first that it's a lot a technology to apply to such a small child.

Not sure which CGM you are trying, but the Dexcom has the smallest needle. We use the minimed due to a feature called ISIG that we like, and are hoping that minimed comes out with a smaller needle soon. But for now either CGM will tell you what's going on and help you fine tune the insulin ratios and basal rates.

Since you're getting the CGM next week, please keep us posted on what you find and if you have any questions. You can also post the CGM plots here by uploading them first to a site like Photobucket, then clickihg the "insert image" link. Good luck!

 

That's probably true. And I hope you're right because changing a pump early due to going through 200u in less than 3 days is something I hope won't go on forever!

 

Looking back at the first 2 weeks following diagnosis, we had frequent numbers ranging from 40 to 400 on the same day. However, after a month into it, numbers above 200 were infrequent. We had a very strong honeymoon, with waking numbers usually no higher than 80. It doesn't sound like you are honeymooning at all. You sound like you are very capable of learning the many different aspects of pumping and cgm's. But, I would like to caution you about the danger of burnout with all of the micromanagement that is possible. Your new endo will hopefully give you the support and tools you need to care for your little one. Just don't forget about caring for yourself, as well.

 

me, too!
I think I've misled everyone: next week we will do the 72-hour CGM study. We're not (so far as I know) adding it to our daily management although I will be prepared to support a request for one. Any hints from anyone?

If nothing else, I've seen that T1 patients having trouble staying in range 50% of the time are priority candidates. I also saw a statement on our new endo practice webpage saying they don't start pumps until 4 months post dx... Still: that's better than waiting a year ...

 

Sounds like a blind CGM. These can be handy to find out problems like this.

As for pumping, there's no medical reason that someone can't start pumping the day they are diagnosed. It's a question of whether the people are ready to handle the difficulty of it. It seems that here in the US, you can get one early if you put your foot down and do your homework.

 

Your daughter is new diagnosed so it is sometimes hard to adjust insulin, or perhaps she has (I don't hope so) an unstable diabetes. BG pattern are really different from a day to another.

I hope you'll find a new endo soon but in between you can adjust yourself the doses. (Endos could be bad in adjusting doses)
Diabetes is a so personal disease and each diabtetic has his own reaction to food and insulin.

You need to follow and correct the BG when needed, don't be afraid about high BG till there's no ketones !