Does this ever get better?

We are 4 months post diagnosis for our 4 year old and thought that someday we’d get in a groove and get on with life. However, I feel like I spend all of my time fighting with insurance, on hold with Dexcom, treating lows at night despite basal iq and filling out ridiculous school paperwork even though our kiddo is remote. This week we had 3 sensor failures from a manufacturer defect, a site infection that had to be drained, and a cannula fall out despite all the adhesives in the world. Seriously I could pull my hair out! How long until we get in a groove?

@Hmgrunst. Holly, there are some other posts about all of the sensors with a certain lot number failing.

As a mom, you are right to be nervous about the course your child is on. Check with the CDE (Certified Diabetes Educator) in your child’s doctor’s office and see if the CDE has contact with the local DexCom representative in your area. There may be a backdoor to getting you new sensors. The CDE may have other helpful ideas also.

Please share what happens as your sharing will help us all learn.

@Hmgrunst. Holly, I misread this post and thought it was the same post in a new category, so I duplicated my reply hoping you might see it sooner.

Yes, being just 4 months in with a 4 year old child is scary. There is a groove or rut (like an old country road). Bumps in the road do occur. They are frustrating. There is a learning curve.

I have some suggestions:

  1. Keep great notes when dealing with insurance. Note the repersentative’s name, extension #, call reference number, and details. When you are wrapping up the call, call the representative by name and continue with something like, “Julie, I want to make sure I understand what we just discussed. I understand X, Y, & Z. Is this correct?” Representative Julie will need to answer YES or NO. If the answer is no, then hash it out, and repeat, “Julie, I want to make sure I understand what we just discussed. I understand X, Y, & Z. Is this correct?” until you get a YES that you have understood. If your insurance is like most insurance companies, everything is recorded. People will get tired of listening to ‘LONG’ calls.
  2. Learn the difference between an IEP and a 504. Basically an IEP covers children who have definitive diagnosis and the 504 covers children who don’t necessarily have a diagnosis but still needs assistance for a covered reason. Look at any forms and then write your own summary of what the form is trying to address in your own words. Then, on the forms write, “See attached”. The biggest caution is addressing all of the points on the forms.
  3. DexCom has undulating on hold times. I am not sure what to say there.

Please, Holly, share what you learn. Sharing is how all of us learn here.

Wishing you and your daughter the best.

Hi @Hmgrunst. I’m so sorry you’re having to fight so many battles at once. Depending on the nature of your insurance issue, some insurance plans have switched certain equipment benefits from durable medical equipment (DME) to pharmacy coverage. From some posts I have read the change may not be automatically recognized when a claim is processed, and when the person calls their insurance the update is noted so they items are covered again.
Sometimes it’s a matter of the way other things are documented. I’ve found the pump or CGM company typically run your coverage and will tell you what to expect to pay. If you are billed for more (once deductibles and co-pays are met) have them pump/CGM company run the interference. It may be something was coded in error. Sometimes additional documentation of a statement of medical necessity from your doctor is what’s needed.
There are over patches that can help keep your Dexcom sensor in place. Dexcom will send free ones if you ask, or there are ones you can find on Amazon. I use a cover shield as well as a patch for mine - they have neutral as well as colorful ones.
There are different types of infusion sets, and you should be able to switch them up with your supplier (I’ve found my prescription does not lock me in to a particular style). There are soft cannulas that go on at 90 degree and 30(?) degree angles, and steel needle ones that work better for some users.
Check with your doctor on the CIQ settings. I’ve been having the same issue with going lower than I would like. Typically I think of changing basal rates or my carb ratio when I’m having consistent lows, but correction factor and insulin duration could need to be tweaked as well.

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I’m wondering if a medical social worker might be able to help with the 504/IEP? Parents on the forum refer to putting one in place - I’ve never done one myself so I don’t know if it’s something you can do “easily” on your own, or if a professional might be helpful. In my mom’s last years (she passed at 94) I took care of her needs myself. It wasn’t until one of her last hospitalizations that I was put in touch with a worker who knew how to put things in place - and did! - taking some stress off me.

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Holly @Hmgrunst, please try to avoid pulling out your hair.

And yes, it will get better and you will get into a grove - but that grove will not last forever. Believe me, I’ve lived with diabetes since the 1950’s and I’ve had lots of really wonderful, active, and very productive times. As far as geting into a grove, last night at supper I said to my wife - she has been married to me for the last 54 years of my diabetes - that I’ve had a hole weel where my BGL remained in a very narrow range - she said wait another day and things will go wild. She has that right, just when I’ve thought I’ve been in the grove, my bubble bursts.

The devices, tools, insulin formulations, you have for your son are really awesome and easy to use, and reliable for the most part. I now rely on a fully automated insulin delivery system, but I know that a faulty sensor does happen, so my suggestion for you is have a back-up and just be observant. I don’t envy you with the challenge place on you and your need for watching your son - it is tough.

It will be better! I didn’t need to care for my children or grand-children with diabetes, but I did live with a 22 week-premi without an immune system - and things did get better with this great new world of medicine. Your son can and will have a wonderful future.