Bummer: My little bro is developing diabetes too

General
1

My 12 year old brother has been in the TrialNet study that assesses family risk for T1D.  He's been doing glucose tolerance tests for the past 9 months, and the result of his last one in March came back with his BGs going into the 300's.

It's surreal.  I can't figure out my emotional reaction to it yet.

My pediatric endo doesn't want to start giving him insulin yet until he starts being symptomatic (peeing, thirsty) b/c he's not showing any signs yet as far as we see. 

Brother has no idea yet.  That's what breaks my heart.  My mom, dad, and I know, and he's totally in the dark about the bomb that's about to be dropped on him in the next few weeks.

I want to talk to him to ease the transition, but I'm at a loss about how w/o outright telling he's gonna be diagnosed very soon.  Any suggestions would be helpful!

I can't speak to friends/fam about it till we tell him.  But I need to get it off my heart b/c when I'm alone and think about it tears me up.

I'd be grateful for any prayers/happy thoughts for our family as we add another member to the T1D team.

2

Being the second child diagnosed in my family, I can say that it's going to suck for him, but it will make him feel better to have a big brother who's going through it too. I was diagnosed at 14 and my twin sister was diagnosed at 9. It made dealing with it easier because I already knew what my it was and how it would change my life. Don't get me wrong, it will take him time to get used to it, and he won't like it, but it's better than going in alone. Good luck.

-Kate

3

Hey Ideen, I can definitely see the dilemma you have. I know that I don't have Type 1 diabetes but I thought I could give my advice for you to consider.

Telling him he is about to develop Type 1 diabetes might freak him out, and he might start obsessing about wondering when it will happen. I think if it is inevitable that he will develop it let him have as much time without being T1 as he can. What I would suggest is to watch over him closely, which I am sure you already are. Your concern and care are admirable and great qualities in an older brother. Number one thing you can do is to be available for him to talk to. Make yourself available and let him know that he can come and talk to you about anything. If you notice he starts to develop the symptoms of frequent bathroom trips, thirst, and fatigue help him understand why he is feeling that way. That is where you should help ease his transition. I am sure he will be confused by the changes in his body so that is where you can help him feel normal again.

After he is diagnosed you can help him with everything and I am sure he will love your advice. Don't feel pressured or obligated to follow my advice, I just wanted to present my view of how you can deal with this difficult situation. I wish you and your family (especially your brother) luck with this transition. Most of all I would say to you don't feel like you are withholding information he should know.

I hope this can provide something to help.

4

So sorry your family is having to go through this. 

I see the wisdom in letting him to know about the diabetes until symptoms start showing, but what if he's able to extend his honeymoon by eating low carb?  I also think honesty is always the best.  Having everyone but him know this information is going to create weird situations.

With the stage he's at right now, is the doctor 100% sure that your brother will develop type 1?  Or is there not enough research to know? 

I'm going to pray for your brother that the diabetes does not develop.  And I'll pray for your entire family to have peace no matter what happens. 

Take care.   -Jenna

 

5

Really appreciate the replies guys.

It's 100% that he's going to be on insulin soon.  He's had elevated antibodies for the past year, and his BGs during the glucose tolerance test pretty much confirmed that his beta cells aren't keeping up anymore.

Our endo said that once he starts getting up in the middle of night peeing at that point he's going to put him on once a day Lantus.  In the meantime they're hunting for beta cell preservation clinical trials for newly diagnosed that they can enroll him in to see if we can avoid going to multiple injections for as long as possible.

They're taking him to our endo's office on Monday to check his A1c, and slowly ease him into it by saying that eventually he's going to start insulin, and in the mean time he should resist carb-loading.

One of the reasons we're holding off on outright telling him is b/c my grandparents are in town and oddly enough they were in town when I got diagnosed and they got super emotional, so we don't want to freak him out w/that kind of emotion around him.

The only way I can think to talk to him is telling him things he should watch out for (peeing, thirsty, etc), but not to freak out if it happens b/c multiple daily shots will still be a long way off....and to tell him that I was even younger than he was when diagnosed, and hated needles just as much, but I've done amazing with it and it hasn't stopped me from doing anything, or eating anything, I wanted.

I really have no idea what else to tell him.  Big time uncharted territory for me.

6

Big happy thoughts coming your way for your brother, you, and your family.

I think the realistic-but-positive approach is a good start, just like you described. He'll hopefully find some relief in the fact that he's got a "pro" to go to (that's you!) anytime he has questions/wants to vent/is scared. 

That just totally sucks. I don't know what else to say, except that I'm glad your brother has you.

7

Ideen, 

I'm really sorry about your brother.  

I hope I can give you some good advice, though, since my dad has type 1, as well.  He was diagnosed about 5 years after I was.  I'm not really sure how he handled it, but looking back, I definitely know it was an emotional rollercoaster for our family.

I am actually grateful that it's your brother that's soon-to-be diagnosed since you seem to be in excellent control and are involved with the type 1 community, both on Juvenation and locally.  I know my dad had been diagnosed before me, or if I had an older sibling who already knew the ups & downs of diabetes, that I'd feel much more reassured that things will be hard, but that I could get through them with support from my dad or sibling.

Sometimes I feel like guys deal with their emotions much differently than girls (especially when they are teens), but just let your brother know that you are going to be there for him when he needs someone have "checking wars" (my dad and I will compete to see who has the better blood sugar), and also if he just needs a buddy to lean on.  

Although I wish neither of us had diabetes, I definitely am thankful that my dad has it too, since it has strengthened our relationship.  I think we both find comfort knowing that we go through the same highs and lows, both literally and figuratively.  

I hope your brother wants to follow in your footsteps and wants to have a good grasp on his management, too.  Sure, things will be rocky in the beginning (and probably through the rest of your lives, just like my dad's and mine), but it's always better to face something when you're not alone.  

I have 2 younger sisters, and constantly worry that they will develop type 1 randomly.  :(  I hope it never shows up, but I know that it's a reality, and I hope I can follow my own advice if that ever happens.

I will definitely pray for you guys.  Please let us know how he takes it.. I hope well.:)

<3Hayley

 

8

Ideen,

I am so sorry and I will keep your brother and family in my prayers.

I know our son was too young to start any of the beta cell preservation studies, but I think your brother should be old enough for almost all. I hope he is able to get into one.

I do wonder though about the starting Lantus vs Novolog in early T1s. Our son is still considered in his honeymoon even though it will be 2 yrs post-dx at the end of May. We started on full MDI right away - but quickly cut back to only 1 unit of Levemir a day. Really, was that 1 unit doing ANYTHING that his pancreas would not have been able to do on its own? For instance he could go to bed with a BG in the 300s and it would drop all night until he woke up at 100 each morning. It more seemed in analyzing his BGs that he definitely needed the Novolog to help his body handle carbs from meals but probably that the Levemir wasn't doing much for baseline. He is on a pump now and I do believe his honeymoon is different now - he does need basal insulin, esp. at certain times of day more than others. I guess my point is, I'd discuss it with his doctor. What does a dying pancreas need help with to support some insulin for as long as possible - being 'pushed' at every meal to spit out a lot and getting some background support (the Lantus only approach) or does it need some carb load support and let it handle the background insulin on its own for as long as it can (A novolog only approach). I haven't heard of newly diagnosed doing a Novolog only start, but if it were my daughter, I would definitely ask about trying this.

If you do ask, let me know what the endo thinks, I would be really interested.

I am sure it is really hard for your family right now. I hope he is able to be told soon. I know at 12 I would have felt like something was up and really wondered what was going on. Knowing myself, I would have been eavesdropping like crazy to figure it out so hopefully he hasn't done that already and is being forced to deal with it on his own since "officially" he is not supposed to know.