Type 1 Diabetes

[ProspectiveBum]

My 10yo son was recently diagnosed with Type 1 Diabetes. We're adjusting to the new reality of multiple finger-sticks per day, and a minimum of 4 daily insulin injections. He's adapting quickly to carb-counting and recording his blood glucose levels, and we're fortunate that we can absorb the costs of his treatment without significant financial stress (although admittedly we don't yet know the full extent of what those costs will be).

Obviously, we're most concerned about his health. He's already improved significantly since we started him on insulin, which is great. From an ER perspective, it seems likely that I'll need to continue working until he's at least 26, so he can stay on my insurance. Things could certainly change over the next 10 years with regard to the laws, so we'll adjust our plans as needed.

Anyone have Type 1, or a family member who does? I guess if you're insulin-dependent, Type 2 would be the same. I'm curious about annual cost of supplies. Also, anyone using a Constant Glucose Monitor (CGM) or pump? Pros & cons?

Any input is appreciated.

 

[avgguy]

Hello
My son is also type 1. I agree insurance is more important now than ever. We plan on keeping him on ours also until 26. Fingers crossed the laws do change. Supplies costs vary alot based on your insurance. Our insurance has a clause called a diabetic kit rule that allows us to get 3 months of supplies and max out of pocket is $150. My son has the Omnipod pump and likes it due to no tubing. He has used a CGM in the past but not currently. It is overwhelming at first but do not let it control you. Manage it and keep everyone engaged so you control it and continue to live your life.

 

[ProspectiveBum]

Thanks avgguy. Your insurance sounds great. Unfortunately, my plan just renewed at the beginning of July, and I have a high-deductible HSA. I'll most likely change plans next year to keep my costs down.

Luckily, he's adapting quickly, and seems to be taking it in stride. He was most upset that he can no longer eat 3 lbs of fruit a day. He was never a big sweets eater, so that isn't too much of a struggle.

 

[Bamaman]

Those that have choices for insurance have serious decisions to make with diabetics in the family. I'm a Type II diabetic that chose to get on insulin--and specifically using a Medtronic insulin pump.

My doctor suggested I go with a pump when on regular insurance as Medicare doesn't like to pay $6800 for the pump. But if someone's on the pump and 65 years of age, they'll pay for all supplies, etc. on Medicare Part B. I have to see the doctor every 3 mos., however.

On the pump, my blood sugar levels are much more stable. They say the lifespan for those on the pump (long term) is 2 years longer. And those on the pump are generally healthier and take care of themselves better. Every time I order little insulin vials @ $255 each, it's about $2000. My pump supplies are about $90 a month.

What's so tough about a young diabetic, especially Type I, is properly maintaining their blood sugar levels and eating the proper foods. Those that live right can have a long and productive lives. Diabetics have a 66% chance of heart surgery in the future. The worst of all diseases related to diabetes is nonfunctioning kidneys. Just about every person you run into at a dialysis clinic is there because of diabetes.

Good luck to you and your son. I know what you're going through.

 

[Meadbh]

I endorse everything Bamaman said. Plus.....the highest risk period for young diabetics is the transition to "adult" services. This is when young diabetics typically rebel against "authority", become noncompliant with their treatment, and end up in the hospital. If your son has started his diabetic care with pediatric services, he may experience much weaker support once he moves to the adult clinic. Preparing for this requires learning to take responsibility for his own health and health care. He will need your well-informed support. I wish him a long and complication free life.

 

[ProspectiveBum]

Thanks Bamaman and Meadbh, I appreciate your input. We've been reading the statistics about the health complications and shortened lifespans that many Type 1 Diabetics experience. That's part of why I'm interested in pumps and CGM units. It's good to hear that they may improve outcomes.

Meadbh, good points about transition of care, too. While he was in the hospital, one of the nurses there told us that her own son was diagnosed Type 1 when he was 2. She said the only time he ever experienced ketoacidosis was during his first year away at school. She said it scared him straight, and he shares his A1c numbers with her now and they're excellent. I'm sure those rebellious teen years will be an issue for us, too.

 

[Silver]

You didn't mention the type of physician/practice caring for your son's type 1 diabetes, but I would strongly encourage you to use a pediatric endocrinologist, preferably one associated with a large university.

There is a lot of research involving transplantation of Islets of Langerhans which could have a significant impact on type 1. Because your son is so young, it may be possible that this process becomes available before he is an adult, which would change his life significantly. A university-affiliated pediatric endocrinologist will be most knowledgeable about these advancements, and provide the best possible position for your son to be considered, if that is what is appropriate. Here is one site I know of talking about this; https://www.diabetesresearch.org/islet-cells

In addition, a pediatric endocrinologist will manage your son's care in keeping with the latest research on insulin use which can only benefit him long term. I'm not always convinced that medical care requires a specialist, but this is one disease that can be really damaging if not cared for correctly long term.

 

[Meadbh]

You didn't mention the type of physician/practice caring for your son's type 1 diabetes, but I would strongly encourage you to use a pediatric endocrinologist, preferably one associated with a large university.

I agree with this, and would add that the pediatric endocrinologist should be one member of a high functioning team dedicated to the care of children with diabetes. The team should include a dietician, a diabetes nurse, an educator and a psychologist, and ideally should be actively engaged in diabetes research, with publication of outcomes. Living in SoCal, your son should have access to some excellent care teams.

 

[ProspectiveBum]

We're just a few days out of the hospital, and haven't had our first appointment with the endocrinologist yet. We do have an excellent children's hospital here, and the care thus far has been excellent. Sounds like we've got some research to do to identify the best possible caregivers going forward.

Good advice, thank you!

 

[azphage]

My daughter (now 12) was diagnosed at 9 with T1D. We went on a pump as quick as we could. The pediatric endo from the hospital was very adamant that we could not get it before 6 months- 1 year of MDIs. We switched endos and got the pump approved by insurance at ~ 4 months. The pump is so much easier for kids. We have been trying to get her to use a CGM but haven't demanded it yet. A couple of things from my experience:

Be careful around transition times (starting sports, back to school), puberty especially. The dose of insulin that have may worked well for awhile can suddenly change. DD started softball, had a high intensity practice and the next morning went into seizure (I had to inject glucagon).

HD insurance may sometimes be the best option. You have to crunch the numbers. When DD was first diagnosed I worked for a big corp that had several choices, because prescription meds were 20% co-pay after deductible for all the plans it made more sense to go with the $12K deductible and $13600 OOP max rather than higher premium lower deductible since we were going to max out anyway.

Best wishes. Take care of your kiddo.

 

[dadu007]

Our now 17 year-old son was diagnosed at age seven, so 10 years ago.
(The cost of insulin has risen several hundred percent since then...)
We started him off on syringes with one basal injection per day and bolus injections for meals/snacks as needed.
After moving to MN, which is home to Medtronic, we put him on a pump.
It worked fine, but he HATED having something attached to his body.
Also, pump supplies costs are VERY dependent on your insurance. My company healthplan changed 3 times in 4 years (company buyout) and the costs were all over the place. They were averaging about $200/month for us (not including insulin); I know other people who had BC/BS and their costs were ZERO $! For one year I tried the High Deductible, which did not work out well. I ended up stock-piling insulin.
Then he went to a popular summer camp here which is ONLY for T1Ds. They encouraged kids to go pump free for that week, which he did (lots of physical activity, very little insulin needed!). He begged us to let him go back to syringes, which we did. We have saved a TON of money using syringes, and his A1c is around 6.9. Very regular meals and schedules help. Plus, fortunately, he's a routine eater and doesn't mind eating the same thing day in/day out for breakfast and lunch.
He's currently in a study at the Univ. of MN, testing a new fast-acting insulin. They pay for all supplies for 10 months! He wouldn't have been admitted to the study if his endo was not a pediatric endo associated with the university. So there's a plug for a pediatric endo.
He'll start college next year; At a minimum he will have to add a Continuous Glucose Monitor to his regimen (sorry, bud, attached to your body). We need to know his BG numbers from afar when that starts.
For syringe T1Ds, I can recommend the "RapicCalc" app for iPhones for managing/tracking insulin dosing.
We will keep him on our insurance until he is 26; this has DEFINITELY affected my ER plan. We're in the middle of testing his younger sibling for antibodies...could be TWO T1Ds in the family very soon. Ugh.
Hang in there...lots of technology already in place and coming down the pike.
I do bite my tongue, however, when people tell me about articles talking about imminent cures for T1D...I'll believe it when I see it. Pharmaceutical companies will milk this disease for profits for decades to come. Just my own admitted conspiracy theory and sorry to rip the bandaid off on that one. YMMV.

 

[eroscott]

Anyone have Type 1, or a family member who does? I guess if you're insulin-dependent, Type 2 would be the same. I'm curious about annual cost of supplies. Also, anyone using a Constant Glucose Monitor (CGM) or pump? Pros & cons? Any input is appreciated.

So sorry your family is going through this. Both of our kids have T1D. Younger one (who was < 10) got it first and older one 3 years later. We went to Medtronic pumps at that point. Having a pump is very useful for kids that like to eat, don't like the same thing every day, etc. In your case, fruits have a fairly consistent carb count based on their size so it may be useful for that.

We have high deductible insurance and max out his individual of $2600 quickly with insulin and pump supplies in the first 3-4 months of the year.

We are looking at CGM devices. Medtronic has their news model but very popular and will be hard to get for a while. Our endro recently told us their sensors in the previous CGM models were not as good/accurate/consistent at Dexcomm's.

It is possible to use, for example, a Medronic pump but a Dexcomm CGM to get the numbers to adjust the schedule in the pump. The dexcomm could even be worn for 2 wks of the month as an example to save cost but provide numbers for adjusting. We are looking at this.

Having your kids on your health insurance until 26 is a big big deal unless they get a great company job with good healthcare. Also they can still be on your healthcare then as secondary (I'm almost 100% sure of this) even if their jobs healthcare is primary. I'm very aware of these situations.

 

[pedidiva]

Can you talk to the social worker to see if your child qualifies for medicaid, based upon his income and diagnosis?