Also sugar free jello with redi whip was a popular snack for mine!
We saw the nurse today and mentioned the pre lunch 64 level. We pretty much did what we were supposed to with one error. Instead of giving the normal dosage based on his level, which went back up to 119, we should have given him the lowest dose of his current scale. This should be done if the low is within a 1/2 hour of a meal. It was a difference of two units so his level was a bit lower in the afternoon.
We didn’t really learn much about handling the lows outside of the rule of 15s. Maybe that was because his levels were so high and they didn’t think he’d get low/low in the near term.
Anyway, we learned something today!
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At our next visit, we are going to be discussing technology and the nurse told us today that there are no time limits on what he wants to use and when he wants to use it. I think Dexcom is in the near future at the very least.
I don’t know about the outpatient endo team yet. We still don’t have answers on the navigation of suppliers and pharmacy. My wife has called everyone we can possibly think of and we’re still questioning. We just want to know what is covered by our insurance and what we will have to have a supplier for, what supplier to choose, etc.
Overall, I guess I don’t really know how to tell if they are a good endo team or not. Today was the first visit and that was with a nurse. She looked at his numbers and reviewed the diabetes education with us. She checked with the nurse practitioner who reduced his scale based on his numbers.
I have to pick up some stuff from our local Walgreen’s. I’m going to take all of my sons information and see if they can lead us in the right direction with insurance coverage/suppliers. It’s worth a shot.
Congratulations! I’m so glad you had your first visit and some guidance on what to do for future pre-lunch lows (perhaps pre-meal less would be a better term. As far as the lows, you can always call the nurse you meet with and get some guidance for just in case. You probably already know to keep some fast acting carbs handy. I was told that liquids work faster than solids, so I keep some juice or a sweet drink on my nightstand and carry some in the car. That will start raising his numbers quickly but he’ll need something a bit more substantial to stick with him and keep them from dropping.
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I’ve found major pharmacies tend to participate with most insurance programs for medications - at least that used to be the case. I’ve used CVS - my local store or mail order - with no problem. Pharmacy coverage for durable medical equipment (DME) such as pump supplies (tubing and reservoirs) and CGMs is relatively new so I can’t give any guidance on that. I just continue getting mine via Edgepark, a major supplier.
I’ve been going to my pharm for years and have befriended my pharmacist via friendly chats as a tech pulls my stuff (the pharmacist stands right next to the register). They’re a great resource, and I’m not sure but they might be able to run your insurance in advance even if you don’t have an RX to see what your coverage will be. I highly recommend though that for your DME, once you choose the one you want, you should let them do the work. Come to think of it, with my Dexcom CGM and perhaps with my Tandem pump (this might apply to Medtronic and Omnipod as well, to be fair) their website has a button you can click if you’re interested in getting started. From there you type in your info and they reach out to your doctor for a prescription and work on insurance verifications.
Insulin should certainly be covered at your local pharmacy, or your insurance may have a mail order provider. I’ve gotten mine by mail in the past and never had a problem, even in the hot and humid area where I live. It’s come in insulated Styrofoam packaging with chill packs so it stays cold but doesn’t freeze. It takes me about 10 minutes to pry it open (okay, that’s a slight exaggeration) but the bottles are safely tucked inside. I’ve always gotten it with time to spare but you may feel more comfortable getting it locally. Speaking of which, if you pick it up at the pharmacy take it home right away and store it at a safe temp. I’ve made a couple of stops after the grocery store and come home to wilted lettuce and curdled yogurt 
. Minor losses. Insulin on the other hand - well, let’s not go there.
By the way - you might be using pens for injections but will need bottles of insulin to load pump cartridges. Insulin is truly liquid gold - a couple of hundred bucks for a bottle if you have to pay out of pocket, which you probably would have to do if you got clumsy and dropped it. I found some padded sleeves I slip my bottle into when I remove it from the box. They are available on Amazon and there are different sizes for different types of insulin so make sure you direct the right one. Here’s a sample:
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Thanks Dorie! Yes, she told us that if the low occurs outside of the 1/2 hour before meal, treat then have a 15g carb snack once the level comes back up.
We treated with a Capri Sun and like the juice tool tool. We also have some small tubes of frosting gel.
I said at the time we should have called into the office to see about using the meal time insulin dose, but we got through and will next time there’s any question/hesitation.
I’m going to have a chat with the pharmacist today as I have to pick up some other stuff.
I like the padded bottle sleeves and will check those out!
It took me some time to figure out supplies as well, I know every insurance is different. Our pharmacy covered the insulin, the pen caps to go on the insulin pens, the ketone test trips and the glucagon. Supplier covered everything else- new meter, test strips, lancets, alcohol wipes, Dexcom. The medical assistants that put in our new and first supply order from the endo office were quite versed in this, they also had a contact person/manager at the supply co. they dealt with so whenever I have an issue I can contact him directly and things get resolved pretty quickly. Your endo office may have a company they deal with on a regular basis. It will all fall into place but can be frustrating at first.
You will be surprised how much you learn in the coming months on managing lows/highs, etc and it will all be okay. We are 6 months in and feeling much better about things. Sounds like you will be diligent like many parents and your child will thrive. Best of luck!
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Way to go! You learn as you go - both by experience and by medical advice. Frosting gel is a neat idea. I found something called Bloks Energy Gels at a sporting goods store and they have been my treatment of choice ever since - I like the flavors and the texture. Everybody finds something they prefer, whatever it may be.
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@mawa316, couple of suggestions…
- if possible, go straight to manufacturer for CGM everything, order, supplies, replacement parts, etc. same for Tandem the pump manufacturer. It cuts out the middle man unless you have insurance issues.
- make sure the cake icing is clear or white. Colored icing like blue could lead EMS to oxygenation problem quest (cyanosis of lips). Cherry red points to carbon monoxide poisoning among other things.
Just ideas after reading post from others
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On checking at night: our doctor didn’t tell us to, so we didn’t, and it was fine. She wakes up if she’s low, has some quick carbs, waits for her sugar to come up, then peanut butter crackers or something to make it stick, and back to bed. I’m not minimizing the risks — not everyone feels their lows, and hypo-unawareness can come and go, too — and I definitely like having the Dexcom now, but we were tech-free for four years, remember, and we all slept well most of the time, which is hugely important.
I was surprised to learn some families get up every night, some multiple times a night, and to me, that sounds unsustainable. Sleep deprivation has health consequences, too. But I can totally see some people not being able to sleep if they didn’t wake up to check, so YMMV.
Oh, and yes, our endo wanted her higher before bed than the rest of the day, to allow a bit of wiggle room. Yogurt is good, as has been mentioned, and ice cream works well, too. 
For us, mostly 120-140 before bed worked well, but you’ll learn what works for your son.
And it’s an ever-changing target, since exercising more v. less earlier that day will change his needs overnight, as will hormone changes and growth spurts, and whether he’s fighting off a cold, and if he’s anxious about a test or excited about tomorrow’s game, and whether dinner was fast-release like white rice or slow-release like lasagna, and even the weather (higher temps make insulin more effective than colder ones; hot showers and hot tubs will drop BG fast).
Not to overwhelm you, but to liberate you. There really IS only so much you can control. So you do your best, follow the numbers, and remember: you’ve got this!
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Just Matt @mawa316, are you still scared???
I’ve noticed in the last few days, that you are beginning to feel more comfortable, and that you are learning now how your son’s body reacts - or doesn’t react - to insulin and a variety of foods. Lots of trial and error, and this is what your son will learn to accept as a part of life.
Whew, luckily I got the white! Thanks for the heads up!
I’m sure things will get better, but trying to workout the supplier and pharmacy is really getting frustrating. I’m learning more about it here than dealing with the people directly involved. I understand there are other people on this earth and the med folks are busy, but my wife has been trying to get this figured out for over a week and still no closer.
I know you’ve shared your frustrations in general. Do you mind if I ask you to be a little more specific about what you’re having issues with? Where to get his insulin? Pump and CGM? Something else?
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Surly, a nurse care manager at the insurance asked early on if we have picked a supplier. We had no idea what would be covered and what is usually gotten from a supplier. Everyone says it depends on our insurance, but we can’t really get any answers.
I would think the insulin to be the only thing pharmacy related and all else would be through a supplier, but again, that all depends on the insurance. Maybe syringes are covered, lancets, etc. I guess test strips will be covered too. The way it sounds right now, sans any technology, is that everything should be covered by our insurance. I’m not sure how rare that is, but I guess we’ll find out.
I would just think this part of it should be easy. We just can’t get anyone to explain our options. Insurance says check with Doc, doc says depends on insurance. As all of you know, there’s more important things to worry about and this will all fall together eventually. It’s just frustrating how difficult this part of it is.
A lot of replies mentioned that their Endo office takes care of everything. Ours seems to be guiding us in the right direction with our son’s care, but what do I know. Maybe there’s better care out there. There is another large hospital in my area with a very reputable pediatric Endo. Maybe we should try to switch.
If the decision was up to us, we probably would have gone to the other hospital, but when our pediatrician said jump, we jumped of course.
So here’s another question, say sugar levels are on the low of normal and you usually have a snack between dinner and bedtime. Would that be considered the bedtime snack or is it better to check levels and if on the low side, have a yogurt or other 10-15g snack.
I didn’t think to ask this yesterday while visiting with the nurse.
I’m sorry - it seems we have been sending you in circles since your doctor had been telling you to look elsewhere.
It’s been a while, but when I have shopped for insurance I’ve checked their Summary of Benefits documentation. Although I take medication for a few different things my main interest was their diabetes coverage. You may recall your policy in generating covers a certain percentage of your costs following a deductible: the benefits summary should tell you more specifics about what they cover; what brands are their preferred formulary (which cost less) and other brands for which you might have to pay more, etc.
You may need to check online for their preferred pharmacies although I believe national ones such as CVS, Rite Aid and Walgreens (to name a few) should be pretty good bets.
The benefits summary will have a section on DME. Now that some pump and CGM supplies fall under pharmacy benefits you may need to check both sections.
Going to the websites for the pump and CGM you are considering may be the easiest way to find out what will be covered for those items. There’s usually a button you can click to indicate your interest and start the process. You might get a call from a rep, and the companies will contact your doctor for prescriptions, run your insurance, let you know if you’ve met your deductible and what the initial costs will be, as well as what you should expect to pay for supplies.
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No you folks aren’t sending me in circles at all. It does seem that you have the benefit of a good team to work with. I just can’t believe its this hard to get answers from the insurance company.
Like I said, it will fall into place at some point. It has to!
Oh, I believe it. Dealing with the insurance company can easily be a full-time job. I’d give advice if I had any, but the best I can do is empathize. It’s not you. Getting straight answers about what’s covered and what it will cost is often impossible. Just expect that you’ll need to make multiple phone calls, you’ll get conflicting answers, and everything will take longer than you think it will. And try to keep a sense of humor and your eye on the ball of ultimately getting your son what he needs.
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