Child newly diagnosed with Type 1 diabetes

[mrsnamemustache]

Hi all. I just learned that my 6 year old has type 1 diabetes (like, yesterday). There is a lot to process, and financial aspects are not the top one for me (thank you MMM), but I am starting to think about it. We have great health insurance (cheap, no deductible, low copays) through both mine and my husband’s job, but I imagine there will be some out of pocket costs. More notably, I feel like this means we should probably keep our good insurance for longer than We might otherwise—by not retiring as early—but I haven’t really gotten to point of looking at other health care options to know the cost (we are still probably at least 5 years from FI).

Questions for those with experience with T1D:
1. any things I should be thinking about in terms of future expenses or other financial implications?
2. I’d also love to just hear more generally from parents or adults affected with T1D. Bonus points if you tell me how it is all going to be ok :) Any suggestions or experiences appreciated.

Thank you!

[ixtap]

You will be overwhelmed with both information and emotions for some time to come, but T1D is very manageable these days, with the whole process becoming more and more automated for many individuals (ie, continuous glucose monitors and insulin pumps, rather than several finger pricks and insulin shots a day). It is indeed a wonderful time to be alive, and to stay that way with limited complications for those whose pancreas doesn't do its job.

I suggest you look for a support group, either online or in person (perhaps both, while you are processing everything).

You will have a clearer picture of the financial implications as you work through your insurance and your child's care plan. One of the advantages of a continuous glucose monitor is that the insurance company can't tell you how many times a day you may check your sugar. Unfortunately, you can also go through extra sensors for the new monitors, as each one has its own trick for actually keeping it place - again, check the forums if you didn't feel your health care team gave you enough information.

Good luck. It can be really hard to impress on people, and especially a six year old, that this is serious, but if taken seriously, it doesn't have to become a problem any time soon. There are a lot of new things to learn and new habits to form - and we all know that new habits is one of the hardest things to build!

[Metalcat]

One thing a lot of parents don't think about is therapy.
There are even therapists who specialize in supporting diabetic patients.

I've seen a number of adults with type 1 diabetes carry a fair amount of unresolved trauma even if their diabetes was generally uneventful as a kid. It takes a slow, emotional toll, so some early psychological support can be incredible valuable for their long-term capacity to cope with their illness.

I can tell you from experience, it's hard being a sick kid, but the good news is that the emotional challenges are generally *very* manageable with the appropriate supports, especially with kids who are do adaptable and resilient.

[Bird In Hand]

2. I’d also love to just hear more generally from parents or adults affected with T1D. Bonus points if you tell me how it is all going to be ok :) Any suggestions or experiences appreciated.

I have a close relative who has had T1 for > 50 years.  He is around 70 and in excellent health (not just for a diabetic).  Only in the last couple years have there even been any hints of retinopathy, and his vision is still close to 20/20.

The vast majority of his years as a diabetic involved multiple daily finger pricks to manually test blood sugar, and multiple daily insulin injections with a syringe.  Was that fun?  No, but it instilled in him a strong sense of self discipline, and IMO he's a very strong person because of it.

That said, modern glucose monitors + insulin pumps certainly make managing the disease much less onerous.

One thing to bear in mind: the disease management boils down to modulating blood glucose levels via diet, exercise, and insulin.  By focusing on diet and exercise, the need for insulin decreases; and a huge side benefit is that the diet and exercise required to keep the supplementary insulin levels low are very good for your overall health and longevity.

Meanwhile...ongoing stem cell and other research looks increasingly likely to offer new and far superior treatment options (to restore pancreas insulin production), hopefully in the near future.

[mrsnamemustache]

Thank you all for these thoughts and stories. I really appreciate them.

[Khaetra]

First, check with your insurance to see what is covered and what isn't.  There are many T1's who have to pay out of pocket for everything, including insulin, because many plans cover nothing related to diabetes.  Expenses can pile up quick.

The advice about therapy is spot on.  Depression is a huge deal, so is burnout.  Being a kid and not being able to eat things that others kids are, not being able to do some things others can, having to deal with highs and very scary lows...it takes a toll.  Even as a T2 I get those days.  Therapy helps.

You will be bombarded with info, some very helpful and lot's of it not.  This forum, even though it's UK, is a good resource and gives you an idea of what other parents of young T1's are going through..

https://www.diabetes.co.uk/forum/category/parents.16/

[Metalcat]

First, check with your insurance to see what is covered and what isn't.  There are many T1's who have to pay out of pocket for everything, including insulin, because many plans cover nothing related to diabetes.  Expenses can pile up quick.

The advice about therapy is spot on.  Depression is a huge deal, so is burnout.  Being a kid and not being able to eat things that others kids are, not being able to do some things others can, having to deal with highs and very scary lows...it takes a toll.  Even as a T2 I get those days.  Therapy helps.

You will be bombarded with info, some very helpful and lot's of it not.  This forum, even though it's UK, is a good resource and gives you an idea of what other parents of young T1's are going through..

https://www.diabetes.co.uk/forum/category/parents.16/

Another aspect is that many kids won't show the psychological wear and tear, it will only show up later.

One of my closest friends has type 1, his parents were incredibly diligent and he seemed to handle it quite well as a child. Basically everyone did everything right, and he responded very well to his parents' excellent support.

Except...he didn't.

How this has manifested years later is that he is horrible at regulating his diabetes, and has profound, deep issues around diet and exercise control that he responds to with compulsive negative behaviours and impulse control problems.

This has far reaching impacts on his relationships and career because his mood is perpetually unmanaged along with his blood sugar. Along the way, he has internalized this as "who he is".

It's plain as day to me that the challenges of having diabetes in childhood went untreated because children are *highly* adaptive, but as he aged out of childhood, he lost that adaptive capacity and then retroactively, all of the trauma hit him like a freight train.

He needs fairly intensive therapy to unwind years of maladaptive coping responses that have built up, when proactive therapy would have addressed this along the way. More importantly, he would have been more open to therapy along the way.

The scary thing with kids is that they'll almost never show you that they're building trauma. The signs are subtle, and ironically can even manifest as really happy, good behaviour and lack of acting out.

So make sure you have support, make sure your kid has support. This is tough, awful shit to deal with, it would be weird if everyone involved didn't need at least a bit of therapy to get through it.

[SimpleCycle]

A friend of mine has T1D, is in her 30s, and is doing really well.  She’s had two healthy pregnancies, which necessitated tight diabetes control.  She has a CGM and an insulin pump, which is very standard for T1D these days.

I had insulin-dependent gestational diabetes, which is very different, but means I’ve dealt with insulin and insurance and a few of the issues the two have in common.

I think you’re probably getting way ahead of yourself thinking about the impact on ER. A lot depends on your child’s treatment plan and what options you qualify for post FIRE, but PP who said diabetes is excluded from health coverage is wrong, at least in the U.S. context.  Some insulins can have high copays, and most insurance has limits on diabetes supplies, but the basics should be covered.
 
I have a few pieces of advice.  First, most people’s understanding of diabetes comes from knowing a non-insulin dependent T2D, and therefore most people think they know something about diabetes without having any understanding of T1D.  So just be aware all the weird misunderstandings and know it all advice you will get.  You probably want to do some education of those close to your child, so they understand the basics of what you’re dealing with.  And probably ignore lots of well meaning advice if it doesn’t apply or just isn’t helpful.

Second, just be really careful of issues around hypoglycemia.  Most people are able to tell when their blood sugar is low, but some fraction of people have hypoglycemia unawareness, which can be dangerous.  I personally was aware of hypoglycemia but didn’t realize how much hypoglycemic episodes were affecting my well-being.  When I started on insulin I was low all the time but because I didn’t always write down the lows (since they weren’t happening at the test times in my diary) my doctors didn’t know how often it was happening.  But frequent hypoglycemia is not good for you just like frequent hyperglycemia.  Basically, just over communicate with the docs even if you feel like it’s too much.

Finally, the needles are hard at first but people adjust to it pretty quickly, and it’ll feel routine before you know it.  It’s a ton to take in but you don’t have to be perfect all at once, and you’ll get the hang of managing it.

[SimpleCycle]

Oh, re: out of pocket costs, it’s much easier to speak to that once your child’s treatment plan has stabilized.  There are options for affordable test strips, but what is most affordable depends on how often they need to test and what your insurance covers.  Similarly, how expensive insulin is depends on if they are using a pump or injections and the specific insulin brands.  I’m not sure how soon after diagnosis those decisions are made, but it could take a bit to find steady state.

[reeshau]

First, check with your insurance to see what is covered and what isn't.  There are many T1's who have to pay out of pocket for everything, including insulin, because many plans cover nothing related to diabetes.  Expenses can pile up quick.

The advice about therapy is spot on.  Depression is a huge deal, so is burnout.  Being a kid and not being able to eat things that others kids are, not being able to do some things others can, having to deal with highs and very scary lows...it takes a toll.  Even as a T2 I get those days.  Therapy helps.

You will be bombarded with info, some very helpful and lot's of it not.  This forum, even though it's UK, is a good resource and gives you an idea of what other parents of young T1's are going through..

https://www.diabetes.co.uk/forum/category/parents.16/

Another aspect is that many kids won't show the psychological wear and tear, it will only show up later.

+1 to psychological support / therapy.  I have a 2 cousins who have T1.  Both had very supportive parents.  One did fine, but the other struggled in her teens, and fell into substance abuse--doubly dangerous for a diabetic.  She is fine now, and a very spiritual person having gone through the experience, but even observing from a distance it was a scary time.

One thing both cousins, now adults, both remember fondly is "diabetes camp."  Whether you do that or have something closer / on a more regular basis, having a community of people their age, where they can feel "normal," is extremely positive.  They have lifelong friends from that experience, and I am sure some of those feelings are because of how lonely they felt dealing with a chronic condition.

[PepperPotts]

I see parents adapting to T1D in different ways: hypervigilance, or denial, or indifference, or (or yo-yo between, like being on-again off-again on a diet).  Certainly seek therapy to help maintain your boundaries with your child.  Your child will adapt and you have to learn to manage the disease and help your child learn to manage it as they grow older.  I sometimes see parents get overwhelmed initially and respond by micromanaging and then get burned out and let things slide. Then things get bad--an ER visit, a hospitalization, a stern talking-to at the endrocrinologist--then back to micromanaging and repeating the cycle. As for the financial side, your insurance will cover some things, and you need a line item in your household budget for other things that are not covered.  Your insurance or endocrinologist may want injections at first, but keep pushing for the pump, even if you pay for part or all of it, including the supplies.  CGM devices are also worth the extra expense.  While it would be lovely for all of this to be at no cost to you, it probably won't be.  But understand it's important, and budget for it. 

[Car Jack]

My son was diagnosed T1 when he was 16.  Now 25.

A pump can eliminate most injections, but you always want the supplies ready to do injections when the pump fails.  Pump companies will ship overnight under warranty but you need to do injections while waiting.

CGM (constant glucose monitoring) will certainly reduce the 8-16 times a day finger sticks.  These fail too and when they do, get on the phone with the company and they'll send you a replacement.

Sites fail.  So you can't expect that the pump or CGM will always work.  Look at the signs and understand what your child looks like with a too high or low blood sugar.

Have a good supply of glucose tablets.  And glucogon.

Blood sugar can be controlled but with T1, there is no insulin production, so it's important to keep on top and think about results you see.  A CGM will send false data.  If in doubt, do a finger stick.

If you have a moron of a supply distributor like we had, complain to your employer early, loudly and often.  Stress that this really is life or death.  Our employer went to the insurance company with a stick with a nail sticking out of it and the moron distributor was fired because of our complaint.  The employer also thanked us because they really do care about the quality of who the insurance chooses.

Things can work out fine here.  I'll add that I'm a T2, diagnosed in 1994, and have stuck with finger sticks and injections.  I just don't like stuff stuck to me.  Things are working out fine for both of us.

[APowers]

One thing a lot of parents don't think about is therapy.
There are even therapists who specialize in supporting diabetic patients.

I've seen a number of adults with type 1 diabetes carry a fair amount of unresolved trauma even if their diabetes was generally uneventful as a kid. It takes a slow, emotional toll, so some early psychological support can be incredible valuable for their long-term capacity to cope with their illness.

I can tell you from experience, it's hard being a sick kid, but the good news is that the emotional challenges are generally *very* manageable with the appropriate supports, especially with kids who are do adaptable and resilient.

Came here to say this. My younger bro (18mos younger-- we did nearly everything together) was diagnosed with T1 when he was about 14-15, and he has had mental health issues nearly the whole time, and never really got much help for it. It was...not good for him. He didn't manage his blood sugar very well for a good number of years, and still isn't 100% (though he seems much much better mentally now than even 5yrs ago!).

Please please normalize some ongoing therapy for mental health for your kiddo.

[TrMama]

I don't know much about T1 in kids, but DH and I were involved with MIL's care. She'd had most of her pancreas removed and therefore didn't produce insulin. I also have a child with a bunch of quirks that require special treatment.

Ditto the advice to have lots of glucose tablets on hand. Keep them in a designated spot and make sure if you leave DD with anyone that they know where the supply is. I wish we'd been able to find MIL's supply when she started crashing regularly. Also leave a supply with DD's teacher, daycare, etc with reminders set on your phone to refresh those supplies periodically.

When my kids were small, I had a medical issue and almost needed to be hospitalized suddenly. DH was deployed, of course. I wrote up a 2 page "instruction manual" with the kids medical info, names of doctors, daycare name and address, school info, emergency contacts, etc and taped it to our fridge. If anyone new ever needed to take over the kids care, they could easily at least figure out the basics and keep the kids safe.

Ditto again to the advice to normalize therapy early, although I'm sure it's not an urgent need right now. Six is pretty young for therapy, but I'd definitely take her before she's 11-ish so you can participate in sessions with her. This will help her feel more comfortable with the therapist. Older kids typically go by themselves and if they're not used to it, they can refuse treatment. Both my kids have seen therapists and the one who started younger (with me present) was happy to go. The one who didn't start till 12 has been a bear.

She may qualify for an IEP (Individual Education Plan) at school. In your case, I'll be limited in scope but should guarantee her rights in case she ever gets a teacher who's an ass about giving her time to test, eat, or skip an activity that's harmful to her.

[DaMa]

I have a friend with a daughter who was diagnosed at age 4.  They went to an annual conference type event on Marco Island, FL for T1 children almost every year.  She found the connections they made with other parents and kids to be incredibly valuable.

[shelivesthedream]

I hope things are going OK for you. I have a friend who was diagnosed Type 1 diabetic around age ten. She is now a thirty-something successful barrister. I'm sure it is a pain in the neck for her, but it hasn't ruined her life.

When she was about 25 she went on a DAFNE course: https://dafne.nhs.uk/ I don't know much about it, but she said it significantly improved her diabetes management and reduced the amount of insulin she required. She was already sensible about diet and exercise and was generally well-controlled, but it seems like it was some next-level information that helped her a lot.

As someone with awkward dietary requirements (no onion, no garlic, no milk), I have greatly appreciated my family adapting to eat the same way I have to most of the time, so I don't feel left out with separate food. I have different "milk" on my cereal and occasionally Mr SLTD treats himself to some onion on the side, but I feel like a fully participating member of family meals. Elsewhere, this isn't always the case, and it's very lonely sometimes to have "your special portion" even when you're eating at the same table as everyone else and even when it has been lovingly and thoughtfully prepared. It will be a real kindness to your son to modify your whole family's diet so that as much as possible you are all eating the same foods.

Also, expect some jackasses to give him "treats" because you're "so mean" to want him to have a functional body. He won't always have the willpower to refuse, so try to get advance advice on how to handle that with the jackasses but also productively with your son.

[Dr Kidstache]

I'm sorry that your family is going through a new T1 diabetes diagnosis. I hope that it was caught before your kid was critically ill and that this is as scary as it's ever going to be.

If your child is inpatient, are you at a children's hospital? Most have a week-ish long introduction course on how to manage diabetes before you're discharged. And then they have pediatric diabetes clinics with social workers and nurse managers to help with management during the early months while glucose levels can swing and you guys are learning what works for your kid. If you're either inpatient but not currently at a children's hospital or outpatient, I would make sure to either get transferred or get into an outpatient pediatric diabetes clinic run out of a childrens hospital if at all possible. Children's hospitals aren't always available but you want as specialized as possible for the initial education and treatment. (Side story: I did my pediatrics residency in Seattle and every child with new diagnosis of type 1 diabetes in Alaska was flown to Seattle for initial treatment and education!)

As far as management goes, it's way too early to know how your child is going to respond to treatment. Many, many kids have type 1 diabetes and are well-adjusted and participate in all the same activities as other kids and aren't traumatized. Diabetes events and camps where they can get to know other kids with diabetes is really helpful for some kids. It's good to be aware of the possibility that you or your child may benefit from more psychological support but know that's not the most common outcome. Insulin pumps are great for young children because they can be controlled by the parent and are often started really early nowadays. Very physically active children will need a trial-and-error period of pump settings to keep from getting hypoglycemic while running around the playground like crazy (just like older kids who are competing in sports) but families get pretty good at managing the nuances.

Bottom line: You guys got this!