Seeking advice from seasoned T1 adults

Newly Diagnosed
1

We are a little over a month into our journey with my 10 years old’s diagnosis. I look at him and think about his future. I think about the additional financial burden he will have when first venturing out into his adult years and I think of my uncle that was diagnosed at the same age but did not care for himself. (died at 42 diagnosed at 11 yrs old) Thoughts I have are to increase his college 529 contributions to keep him at a full-time student status longer to be able to keep him on insurance longer. But emotionally…

For those of you that were diagnosed at a young age but managed T1D through the teens and 20s successfully, is there anything your parents did that you think made your success possible?

2

Hello–I was diagnosed at 18 months old and am currently 31. A few comments that are hopefully helpful:

First, I realize your uncle’s experience has probably scared you but realize that the medical community’s understanding of how to care for diabetes AND medical technology has come a long way since your uncle was diagnosed. Meters only came to be mainstream/standard care for diabetes in the 1980s. Insulin pumps have become more and more common in the 90s and 2000’s. CGM technology has really taken off in the past decade. Your son will have a lot of opportunities to make diabetes easier for him than I’m guessing your uncle had in his day.

Second, realize that over the course of your son’s life he will likely go through good and not-so-good seasons of diabetes management. The teenage years are notoriously bad for most people because of puberty, along with major life changes during those years and gaining more independence, not to mention general teenage rebellion. Personally I can say that I only REALLY became decent at managing diabetes in my mid-20s. Prior to that, life just got in the way and I did the best I could but quite honestly didn’t care as much as I do now. I am lucky to be able to say that I currently have no signs of complications (or any other health issues) and am currently expecting my first baby :slight_smile:

Third, although I’m not yet a parent (let alone a parent to a diabetic child), the only advice I can offer is to try not nag him about diabetes care or get into arguments about it. It will only make him resent it more. If he’s having trouble with his control, try to (calmly) work with him to figure out why and how to fix it. Also, please remember that he is a child first and a diabetic second. If there is something he wants to do (for example, play a sport), help him figure out how to fit his diabetes management into the activity. Do not let him give up or not even try something new just because he has diabetes–make diabetes work around his life, not the other way around. There is a good chance he will have it for the rest of his life and he has to learn to live the life he wants with it.

3

@abakcuh

T1 for 43 years diagnosed @10 y.o.

I think you are over thinking. Insurance? Let’s see - even if he’s not in school he can stay on yours until age 26. My parents did NOT have insurance and they saved no money for college for me, but I went on to get a Masters and a culinary degree.

I could not even check my blood glucose …

Instill the following:

Test often and manage highs and lows (get a pump if you can)
Exercise
Be normal – if he wants cake - he just need to take more insulin - so you have to find you carb ratio which will change as he grows.

I was no angel, and probably lucky too. My parents were concerned which caused me a lot of anxiety. For some there should not be too much more of a financial burden if he stays healthy and tests BG 8-10 times a day. I would recommend therapy if he sto become depressed or does not want to take shots.

Stay Strong - have him go to diabetic summer camps. Get him involved with the JDRF.

Best,

Scott

4

Scott - thanks for writing that I think it’s great.

abakcuh - controversial but helpful in our case; the open market insurance system give your son access to insurance without penalty for being diabetic. he won’t be able to get great life insurance, but health and prescription is now available and unless it changes he can get insurance. When I was diagnosed in the late '70’s, my father had to pay a fortune for life insurance through blue cross and blue shield, first because he was self employed, second, because my dear friends at BCBS had a huge premium multiplier for us diabetics.

My parents suffered quietly. they did not become diabetic police, they let me make my own mistakes and gave me guidance on things that I may encounter, but I was encouraged to pursue my talents and interests that might take me in or out of college. There were 5 of us, we were treated pretty much equally and 3 of us decided to go to college right away, 1 opted to go to a trade school and I drove a truck for a couple years before going to college.

Once I joined the work force, I was able to get both life and health insurance at “normal” rates by working for huge companies. I have been fortunate and lucky, but I did work pretty hard as well.

5

Insurance right now is not an issue and I’m thinking very far ahead when it comes to that. We have been very blessed with great coverage and I want him able to be covered like this for as long as possible. I remember really well when I was in college with no health insurance coverage, every sniffle was a source of stress.

Yes, I over think and worry too much. I just see so many other parents either over managing keeping the kid from living & so many giving too much responsibility and wondering why there are issues. I’m avoiding both as much as I can. He seems to be taking on more and more as he gains comfort.

I have taken the cake advice seriously. Nothing beat the smile this week when CFA nuggets are only ten carbs and I suggest filling in the meal with his pre-diagnosis favorite of milkshake. (1:20 ratio) I’m working very hard at being positive - well actually it is not work just a way of life.

Thanks so much - I now feel like I’m on the right track of keeping the resentment at bay. Kid first - make it work

If you guys could see him throwing snowballs at his teenage brother right now! Such a fun kid.

Thanks,
Jennifer

6

Hello!

I was diagnosed when I was 9 I’m 27 now. My parents were in the same mind as you. But even though I was kick out there Insurance when I was 23… I was able to find help with the local health department for insulin and testing supplies. I now had amazing insurance. The best thing my parents did for me was always let me know they where there to help me. I didn’t come form a family that had a lot of money, but they always helped me. The one Thing I will said is… I feel so extremely guilt that my parents sacrifice, so much to make sure I was ok. Even when I told them I was ok, and I did everything possible to not ask them for help. Being that he is so young, (like I was) he will see everything you are giving to him. And hopefully he will take that and use that in his life for himself. Cause this biggest thing you need to know, is he will hate what is happening to him. He will hate the difference he is to his friends. But hopefully he will see the love, time and effort you are giving him. Be patient, with him. Give him time to grow into this disease. Insurance with be there, hospital will be there. But the love and support won’t always be there from his friends. That’s what you need to be there for.

7

Thanks Chrisda.
Glad you were able to find coverage. My dad dropped me from his when I was 19 and there was no option for me that I could find (purely his money saving choice no other reason). I didn’t have something like this to financially cover, but just the stress of paying tuition and possibly getting sick was a lot. So that in my past weights on how my son would handle things. That is why I brought up keeping a student status, I know the new law says parents can cover much longer as long as there is a student status. I also plan to keep up with the legal requirement of Health Savings Accounts which may benefit him in the future.

More than anything I don’t want him to give up and be one of those that doesn’t care for himself then ends up with those yucky complications.

8

For what it’s worth, your son does NOT have to be a student to remain covered under your insurance plan until the age of 26. Even if he got married and had a job with an insurance option at the age of 22, he would STILL qualify to be on YOUR insurance.

The passage of the Affordable Care Act eliminated the ‘must be a student’ qualification for young adults to remain on parents’ coverage. Simply put, the ONLY qualification now is that the individual must be under 26 years of age.

9

Here is more info: Health Insurance Coverage For Children and Young Adults Under 26

10

Greetings,

I have T1D, diagnosed at the age of 5 years old in 1983, now 31 years of diabetes, with zero complications, even though I had quite a few years of poor control. I agree that it is premature to be worrying about his insurance coverage 8 years from now, especially when you’re only one month into this journey. And so many things could change with insurance laws in those 8 years… But I understand your concern. Take a deep breath and cut yourself a little slack ;-)!

The best advice I can give is supervise him closely, but from afar. It is so important for kids with T1D to learn independence. He needs to know how to solve his own problems and also to know when he needs to ask for help. If Mom and/or Dad do every little thing, make every little decision, then he will not learn. You have to give him space to make some mistakes. I was very unsupervised as a child, which was not a good thing, but the silver lining is that I learned how to completely take care of myself. For that, I am eternally grateful.

As for the insurance, let it go for now. I was on one or the other parent’s insurance off and on as a child (they were divorced.) When I was 16 I got a job that had good benefits, even for part-timers. At 17 I began working full time and had my own coverage. At 17 I began college and continued working full-time throughout in order to keep my insurance. At 21, I graduated with my BA, and moved 1500 miles away for graduate school. Since I would have no job at first, I took out more student loans in order to pay the COBRA for my insurance from my previous job. I paid COBRA for the full 18 months I was eligible to. By the end of that time, I had another full-time job and therefore had my own insurance again. I worked full time (to maintain insurance) and went to school full time for the remainder of my Masters program. While, yes, every month that student loan payment sucks, it was worth every dime. And while my journey is not typical, and I wish your son an easier time than I had, I am telling you this to make a point. Where there is a will, there absolutely is a way. It is impossible to predict now, what his insurance options will be in 8 years. Many universities even have student insurance options that are now surprisingly more comprehensive. It really just all depends. Take the utmost advantage of the coverage you have now and get him on a pump and CGM, if possible. Let the future take care of itself.

And note, I make an effort to say I have T1D. He is a child WITH T1D. I try not to use the word “diabetic.” This is my pet peeve, but we are people WITH diabetes. That is only part of our story. It is part of what makes us who we are, but it does not define us. I am so much more than “a diabetic.” I am a woman, an educator, a crossfitter, a scuba diver, a girlfriend, etc. WITH diabetes. He is your kid, and an amazing one, I’m sure. Who just happens to have diabetes.

Ciao,
Malliett

11

Hi,

My daughter was diagnosed February 12th five days after her 16th birthday…What a gift. She is an amazing person and quite stoic. This however has thrown her for a huge loop.

She, we are having our ups and downs. The hardest part is accepting her new identity, her “new normal”. People mean well but they can be really clueless at times.

Her body image, the obsessiveness surrounding her diet that lives around the daily monitoring and basically feeling like a human pin cushion have been the most difficult to digest.

12

Your wanting to help your child is a lot of help. Just don’t become too overbearing with the child. I was diagnosed at 16 in 2000. It will be 15 years this October and I be 31 in April. With today’s technology there are so many advancements that will help T1 live long lives. There are those out there that don’t take care of themselves and they do pay for in the long road. My step dad dropped me off his insurance as soon as he was able to due to costs. I paid for everything with assistance programs and out of pocket. My mom would help here and there but didn’t seem to really care.

13

Hello abakcuh, welcome to Type 1 Nation. I was diagnosed in 1945, when I was 6. After 69 years with type 1, I am very healthy and have no diabetes related complications except some mild nerve damage. It is much easier now than when I was young. The information available, and the devices that you can use give your child a much better opportunity to have a long, healthy life. The life expectancy for newly diagnosed individuals in the US is now almost as good as it is for non diabetics.

There is a wonderful diabetes support group for parents of type 1 children. See the link below. You can talk to many other adults there, and get advice as you wish.

There are also many great support groups for parents on Facebook. If you have a Facebook account, use the search bar at the top of the page to look for them.

14

I was 6 when I was diagnosed and there are couple of things my parents did that helped me the most. One was to get involved with the local T1D community -camp and support groups (like others have said). I remember less about the actual groups and more about the social outings the families organized outside -lake trips, play groups, meals together. Playing with the other kids was a blast for me but now I realize how crucial the groups and events must have been for all the parents. If you have a group in your area, it might be worth checking out. Going to camp and being around kids made Diabetes a pretty spectacular part of my life (some of the best childhood memories were at camp. It’s a way for kids to get together and be kids while doing their tests together, gain some independence while having their Diabetes monitored constantly, AND give parents a break. Don’t get me wrong. There definitely were/are hurdles, but being around others w/T1D helped so much - what did or didn’t work for others; new resources, research, information; where to find new gear; about the different Endos and diabetes health educators; school scholarships/financial aid; and that blood tests, carb counting, insulin and backup supplies could just be another part of everyday life. It’s also invaluable to find a doctor (or even nurse, diabetes educator, med team) that you and your child connect with. My junior or senior year of HS, I asked to see a new Endo bc I just didn’t feel my childhood doctor was “hip” on the latest info. Now I’d say it was more me trying to find my own independence and my parents were good enough to support me in this which helped me to take my Diabetes more into my own hands. While it may have taken more research, phone calls, and planning, they encouraged me to do all the typical kids activities. That sense that I could attain any goal I had while living with Diabetes is surely one of the most important gifts they gave me. All of this of course took time and there were highs and lows (har-har), but now at 35 I’m healthy, have a supportive spouse and live abroad with a career I love.

Imagine it’s pretty overwhelming at this stage but it’s great you’re reaching out. That is just the kind of thing that will help your son.

15

My son is 8, and was diagnosed the year he turned 7. He is amazing, and he inspires my wife and I and his younger brother (5). We worked hard from the very beginning to show our love, support and care and we will continue to do so.

At this stage in your journey, don’t worry about your child being able to get insurance, etc. That is many years away. Personally, if my son has no other option then we’ll pay for the costs until he’s fully employed (whatever they may be). We’ve been able to successfully get into some public assistance programs in our state, which helps with all the testing & treatment supplies we could need. He is never made to feel like it’s a burden on us.

Like others have said, you’re still just a month into this. It’s overwhelming, and sometimes it seems like such a daunting task. Just take a minute to breathe, and realize everything can be taken in steps…just remember to actually start with a step! I didn’t know, when my son was diagnosed, just how great it would be to help him with a pump and a CGM. It took us 8 or 9 months to work up to a pump, but once we did, it made an enormous difference based on his lifestyle. Adding the CGM also helped a lot to reduce the number of finger-sticks we are doing.

We periodically ask him what he would do in different situations, just to see how he’d handle things and listen to his level of independence. We take that time to also remind him, no matter what, if he needs help to ask us and we will always be there for him.

16

Wasnt DX till 25 but that was 27 years ago.
I scuba dive, have sky dived, take a 4000 mile road trip almost every year by myself. There is nothing your son cant do if he sets his mind to it.

You are overwhelmed with the stages of grief and are likely blaming yourself. Thats normal, it gets better.

Take EVERYTHING You read in the general media with a huge grain of salt. Most is either complete non sense or applies to “Diabetics” which to 99% of Drs and most Media people means type 2s. Which means it doesnt apply.

The scary statistics you are reading are mostly out dated. Ignore ANY information or statistic published more than 15 years ago. Times have changed.

Get a good Dr and dont be afraid to interview new Drs and get recommendations of Drs from other Type 1s.
Make sure the Dr is an Endocrinologist.

Watch out for the Type 1 device sales people. ( specifically targeting Minimed sales here ) they will fill your head with fear to see a product. Get a second or 3rd opinion.

DO what you can to establish a healthy relationship between your son and test strips. Help to show him that when his BG numbers are better he feels better. And when he is high school / college age make sure he doesnt take any extended insulin or test strip vacations, while he feels invincible.

Hope this helps

17

HI Crisda,

Your statement:
“Cause this biggest thing you need to know, is he will hate what is happening to him. He will hate the difference he is to his friends.” Is Perfect.

I hope this is not too much self-disclosure, but time and again I had to remind my husband and my son’s teachers at school of this fact.

Without this level of understanding, empathy, and insight, young people with T1D struggle more than necessary. It’s already hard enough. Now that my son is older and we can talk a bit more about the difficulties, we have a term we call TEGO (the eyes glaze over), which is what we see when we try to talk to others about T1D… Even the PhD therapist recommended to him, as well as Social Worker, said things like: "diabetes…that’s when you can’t have sugar isn’t it?"
I mean, these were professionals at major medical centers and still getting it wrong.

Thank you

18

Hi abakcuh. I tend to agree with Scott T - let your son be normal. I was diagnosed at age 6, and my parents let me be a kid as much as they could. I went to friend’s sleep-over parties, played lots of sports, went to summer camp (diabetic camp, to which I highly recommend you send your son), competitive swim camp, and I went away to college, all with no trouble, and really no worries. In fact, it never even crossed my mind that these were things that I couldn’t do, or should be afraid to do, as a diabetic kid. Until I was about 14, diabetes was no big deal to me, and as far as I knew it just meant I had to check my blood sugar, eat at certain times, and take some shots. Now that I am in my 40s, I am very glad that my parents treated me like any other kid, because I got to grow up knowing that I could do anything I wanted to do. And my diabetes? Well, it was just coming along for the ride.

Presently, I am on an insulin pump, which this makes things infinitely more flexible, and why I agree with Scott’s ‘let him eat cake’ idea. My food advice is this: don’t make food the enemy. If you do, your son will find ingenious ways of sneaking it. Between ages 14 and 17, I was terrible at sneaking food, and somehow in my adolescent brain, I thought that the faster I ate the foods I snuck, the less they would impact my blood sugar. This of course is ridiculous, and resulted in a lot of anguish on the part of my parents.

The thing that probably impacted me the most as a diabetic kid, was being made to feel like all of my high blood sugars were a result of something that I did, and that consequently, I was a bad diabetic. If the emphasis had been on ‘here’s how we fix this’ rather than ‘you are bad for having caused this’, I think my self-care as an adult with T1D would be better. Since I was always feeling under attack, I got very good at lying to protect myself, and to protect my parents, who expected me to eat right and have good blood sugars. No kid wants to disappoint their parents, but unfortunately high blood sugars are going to happen, whether it’s due to a candy bar, hormones, stress, illness, or whatever. When this happens with your son, just let him know it’s okay, and work out a plan to correct it. Of course the overall goal should be good blood sugars, but when he has highs, try not to treat it like it’s the end of the world.

As for the insurance concerns, in my 35+ years with diabetes, I have NEVER had any problems getting or keeping my health insurance. Your son will have to make smart choices and take jobs with companies that have good benefits, but it is not difficult to accomplish. Also, I believe most, if not all universities offer student health insurance, should he not be covered by your policy for some reason.

And to shapannie - I’m so sorry that your daughter is having such a difficult time. It will get easier. Getting her online, talking with other diabetic teen girls might make her feel less alone, and provide her with people who can truly understand what she is going through. Also let her know that one good thing about T1D is that no one can tell you have it, just by looking at you. :wink:

19

I was diagnosed at 9. I’m now 64 without complications. I think that qualifies me as “seasoned”. I didn’t get a glucometer until I was about 35. I don’t use CGM or a pump because I don’t want to “wear” anything. Is my control perfect? Nope. Is it good? Yes. My A1c (avg, 6.5-7.0) is higher than my doctor would like, but I like red wine and I hate lows.
My parents reacted to my diagnosis quite differently. My mother was obsessed with my diet, my exercise, my urine (yes, urine) test numbers. She was what we now call a control freak and I shudder to think of what she would have done with access to CGM and carb counters.
My father was more interested in helping me learn how to manage my own disease. He figured, quite correctly, that I would grow up and live my own life. I credit him with encouraging me to be independent, to learn what worked and what didn’t and to take responsibility for myself.
My advice? Be my Dad, not my Mom.

20

I don’t know where to start - BIG THANKS to you guys. I hope this also helps other parents in my shoes.

So - Biggest thing - Let him eat cake. In other words, don’t change life for T1 adjust/dose and keep going.

I wish I remember where I read kcmst7’s advice. Be very careful about how you react to the numbers. I took that one to heart right away. It was an article about a child’s life being about numbers with school grades, standardized test scores, college entrance test… and to not have the “test culture” apply to BG numbers. They happen. When he has been high we’ve discussed what the reason could be. We have figured out that when he has a high protein snack that we have to throw the two hour out the window and not get over concerned until after the third.

wlwilliamsjr - he feels the same. No wearing a machine, no depending on a machine and battery. I guess he took the "we are smarter than your pancreas ever was to heart. Oh, the GCM to much information to stress over. As long as he listens to his body and catches those lows and highs there really is no need. I’ll be your dad definitely.

Insurance was a small concern - there is lots of time for that and lots of changes that may happen.

About those that don’t understand diabetes; I have learned to not say he has diabetes. I say he is Type 1. If they ask what it is I answer with a clinical definition. “His pancreas doesn’t function properly.” If they know enough to ask if that is diabetes I say “Yes, juvenile diabetes.” Adding the older term seems to help with the confusion between the types. Folks just can’t handle the difference between two numbers really well. But oh boy, when he was diagnosed the spam I got from such loving caring people full of cures and special diets. That made my head spin more than learning the carb counting and what to do if something happens. But I do keep in mind 95% of diabetics are T2 and they get more “air” time because of that, so deep breath and be happy that they at least know something.