Mother of almost 16 year old worried


(Jennifer) #1

My son was diagnosed 6 years ago at 9 years old. He is very active playing football, wrestling and golf in high school. He strives to get good grades. But I know he is struggling with his health and because he is growing he is eating all the time. He doesn’t make good choices as he has a big sugar tooth. His A1C is 9.4 which is WAY too high but Childrens Hosp says that puberty plays a big part of that. My son also admits to eating without checking his blood but he will just guess a dosage so he will take insulin but not check his numbers or he will just not check or dose but we know after we go to bed he is sneaking to the kitchen to eat and I am sure not dosing for it. He is on the omnipod and we actually have a dexcom but he doesn’t want to wear it because its one more thing that can get ripped off during sports and I think he feels everyone is kind of used to his pod but if he adds one more thing he will have to educate them or worry they think he is sicker or getting worse. I am not sure what is going through his mind at times but he has uttered the horrible words of " I wanna kill myself". :frowning: He is finally open to counseling so I am working on getting a therapist but his sport schedule is everyday after school. He WONT miss his sports so getting appointments is difficult. I freak out of course after he says that and he says he’s just kidding but we all know that is something you don’t kid about. I have heard the statistics of teens with T1 and suicide and that is terrifying to me.

I am trying to find the balance of helping my son and determining if this is regular teen stuff or diabetic issues. I know when he is crabby I ask him to check his blood and that can make him more upset.

He is a happy boy most of the time and loves to hunt, fish, be with his friends. He has always been a momma’s boy but he is growing up. He recently has been talking with a girl and I asked him if she knew he had T1 and he said yes so I think that is a good sign he is open about it. I am typically the one who informs his coaches. He did do a presentation on T1 to his class when he was in 7th grade. That was really good.

I know he still doesn’t like to check his blood in front of his peers. He wants to be like everyone else and I tell him he is and he can do whatever they do.

Looking for some advice on how to talk to him to open up to me.

I have thought about restricting him going to driving school until he takes control of his numbers and getting his A1C down to healthy levels but then on the other hand I think that is terrible. I want him to care because its so heartbreaking to know he is hurting himself in the long term. He has told me he won’t live long anyway. EVERY single commercial about drugs or diabetes is terrible. T1’s hear all the time what could happen to them. I am just sad and want to make the best example and provide the most support while I still have him under my roof. He will be 16 Jan 31st. I have 2 years. Advice? Jen


(BookwormNerd13) #2

Hey Jen.
I’m 15 (almost 16) and I can tell you that I absolutely relate to your son. I think most teens with T1 probably go through a time like this in their lives. One of the most important things in a teenager’s mind is fitting in with their peers, and when something comes along that doesn’t allow us to do that, we push it away. It’s natural.
Therapy will help, for sure. That’s super important. But it’s also important that you talk to him. It’s crucial that he feels like he can trust you; that he can come to you and say “I made a mistake” or “I skipped a dose” and you won’t punish him. T1 is a team effort; it’s not something anyone can handle alone. If he’s afraid you’ll be angry about a bad number, he’s less likely to reach out and ask for help, and that essentially isolates him because he doesn’t feel like he can talk to anyone about it. That may be what’s leading to these bad choices.
If you have a Dexcom, I think it would help immensely. I just got one last month and I adore it because it helps me feel more “normal”. I don’t have to check my blood sugar in front of anyone! And I know he’s worried about it getting ripped off during sports, but I also play sports and I promise, it’s super secure. Try buying “Skin Tac” if you haven’t already… it sticks like glue and you can reapply it anytime the edges start peeling, so the sensor can last a really long time. Obviously it’s a personal choice but speaking as someone who has many of the same worries and doubts that your son seems to have, I highly recommend it.
As for restricting driving school… again, that’s a personal decision, but I would definitely advise against it. Punishing your son for his lack of control will most likely make him angry and defiant, which could have the opposite effect of what you’re hoping for. I think it’s better to think of it more as a “reward system”… as in, if he keeps his levels in a certain range for a few days, or a week, he gets a reward. It sounds kind of childish but if the reward is something he really wants, it can help. It definitely makes it seem more positive, which can help immensely.
One other suggestion: are there any other teens in your neighborhood with T1? If he had a friend who understood what he was going through, I think that would help immensely. I’m in a Snapchat group chat with 5 other T1 teens and they’ve become some of my closest friends; we’d love to have him join if he wants to! I’m always looking for more T1 friends. He can email me at abigaelparrish13@gmail.com or add me on Snapchat at bookwormnerd13.
That was a super long reply, sorry! I hope I helped a little. Best of luck!
–Abby


(Jennifer) #3

Hi Abby,

Thank you so much for your response. I wanted to stress I don’t punish my son. I encourage him to ask me or confide in me as much as he would like and I press him for information letting him know it’s because I care about him and his long term health. So the driving school was the only thing I was considering to hold back and my thought was I didn’t want him on the road and have an incident because he is not managing his numbers. Driving is also a big responsibility just like his T1. That was my thought process behind it. Sorry I didn’t mean to give the impression that I punish him for anything related to his diabetes. I will encourage my son again to try out the Dexcom.


(BookwormNerd13) #4

Jen–
Of course, I completely understand. You seem like a great parent and I know you only want what’s best for your son. You’re in a very difficult situation and I hope things get better soon. Please keep me posted on how it goes with the Dexcom! :slight_smile:


(ReneeM) #5

Hi Jen, I have a 12 year old boy dx’d at 8, he loves sports too! I have done a lot of reading and the raw facts are most teenagers do not meet their A1C - period. And for a VARIETY of reasons, hormones and mental health being just two of them. Your son will survive a high A1C in his teens, but he will not survive suicide. That is the real danger right now. he is open to counseling and that is half the battle.

My son sees a therapist intermittently, she herself has type 1 and she does phone meeting w/us. I am happy to refer you to her. Have you read “Raising Teens with Diabetes” and follow her blog if you have time.

I feel A1C numbers not being met is kind of a a dirty secret, my feeling is we need to be open about what is happening on the ground w/there numbers so we can fix the issues and not make your son feel like an outlier - he is not- that is a very average a1c for his age. Stats show after age 25 things settle down with most who have access to good health insurance, likely developmentally ready for managing it.

Now we need to find a way to make it easier for people to meet a1c at all ages, but that is not your fault or your son’s fault at this time, it’s not an excuse, but if 70% are not meeting it then that is a design error not a user error.

My son wears a Dexcom and most people dont wear two devices, we are trying Omnipod, its the only pump he wants to wear but he was already allergic to Dexcom adhesive so I hesitant too but we will try it.

And I agree with Abbey about peer to peer support. My son did not want to share with friends sitll does not and getting him in a breakout session at Type 1 Nation got him talking and it was because everyone in the room had type 1!! Best ever.

Good luck and let me know if you want my therapist info. Renee


(ReneeM) #6

Abby, great advice! As a T1 parent I really LOVE your advice!! thank you.

Jen, to Abby’s point, my son also does not like to check in front of friends and Dexcom helps, G5 is NO fingerticks.

We had trouble with adhesive and there are Facebook product groups for Dexcom with direct user feedback one what works for keeping it on. We use Tegaderm, Vet Tape and Ktape are also good.

And a new no fingerstick stays on for 14 days been approved in EU for over a year meter, very thin. https://www.myfreestyle.com/provider/

Best of luck


(Alex) #7

Hi Jen,

My name is Alex, I am now 22 years old and was diagnosed around the same time as your son (age 10). I actually grew up using the omnipod for the exact reason that I played sports all the way through school and college. I also now wear the Dexcom G5.

Firstly, I just wanted to reach out and say, that growing up, I too went through a period, like your son, where I really wasn’t on top of my care, including facing some heavy times of depression and feelings of just not wanting to be here. I do want to say, however, that I made it through and I believe that your son will too.

I whole heartedly agree with what Abby said about the impact of having a connection with peers with T1D. In college, some T1Ds on campus started a chapter of the College Diabetes Network - which is kind of like a support group for diabetics in college. Going to that group completely changed my outlook on my diabetes. I’m now a lot more comfortable talking about my diabetes and even like to take opportunities where I can educate people about T1D, so that more of the correct information is out there. As I explained to my parents the group really is a group of friend who when I meet up with I don’t have to explain why there is suddenly a beeping noise coming from my bag or what my CGM is. Its a place where I don’t have to talk about my diabetes because everyone just gets it. Its also a place, however, where if I want to, I can talk about my diabetes and not feel judged because we’ve all done the things that are not quite what our endocrinologist have said to do. My group of T1D friends has made me feel less alone and like I have people around me who get that side of me. So if at all possible see if there are any groups or online T1D community events that he would be wiling and interested in going to. Meeting with other T1D’s is actually what got me to start wearing my Dexcom G5 again! Also if you have a chance I linked the organization for you to check out - it has a lot of great resources for both parents and T1Ds.

In your post your also mentioned that when he is crabby and you ask him what his blood sugar is he gets more upset. I did the exact same thing with my parents. For me, when was in less than happy emotional state and I and my parents would ask me what my blood sugar was - to me it felt like an invalidation of my feelings. It felt like they were saying that I was only acting a certain way because my blood sugar was not normal. While this might have been true the flip was that I felt that they were challenging how I felt about something. Blood sugars absolutely affect mood states but growing up, especially going around puberty, you’re trying to figure out who you are or who you want to be and when someone says that your crabby attitude or anger is just because of a blood sugar, for me it was really frustrating - and my response was usually “its not my blood sugar, this is just who I am.” As a counter balance I will say that in a lot of my less than cheery moods my blood sugars were playing a role but because of how I felt, my parents always asking actually served to drive a wedge between us.

If your son is open to trying the Dexcom, I think that it would help a lot with these situations. If he agrees to share the data with you - you can have a live trend of his numbers sent to your phone. When I did this with my dad it really helped to smooth over some past issues that we had by including him in my care in a way that felt like he was helping me. So while I’m away at school or in practice he can text me to just check in and ask if I need anything or if I’m okay. From my perspective its helped to ease his mind because he can see what my blood sugars have been like without having to constantly ask me. So instead of feeling like they were challenging how I felt, it became my dad coming to me and saying “Hey, I see your numbers have been a bit rocky, is there something I can do to help?”.

Another thing I would suggest is trying to remove the use of “good” and “bad” blood sugar numbers. I have no idea if you even do this now, but for me removing those tag from my numbers helped me to see them in a different light. For me, the use of “good” and “bad” put an emotionally charge on my numbers. When my numbers were “bad” (low or high), I was left with feelings of guilt and even shame because it felt like I had done something wrong. I absolutely dreaded getting my A1C done and any endo visit. When my endo suggested not using the good or bad, especially asking my parents not to use it, my blood sugars slowly became information that I could use - like a road sign, instead of a test results that said whether or not I had been “good” or “bad”.

In terms of driving school, personally I think not letting him go would serve to make him feel isolated from his friends who are going. Maybe build in some ground rule with him about it - like asking him to tell his instructor about his diabetes, or having him talk with his endocrinologist at his next appointment about their professional advise on driving with diabetes and the steps that he should work to take to do so safely.

Also if you’re son or you have any questions about playing sports at higher levels with T1D feel free to reach out, I would love to share what I’ve learned and any resources I have.

Sorry for the long response, but wanted to share some of my experience in the chance that your son might relate to some of it or that it could be helpful.
Best of Luck.
Alex


(joe) #8

@Mkprncs Hi Jennifer,
I read a lot of good stuff and want to echo most of what I read already. 2 things to add, you know he loves sports, so if he suddenly gives up on his sports or the things you know he likes - you know it is a crisis. A hallmark of clinical depression is loss of interest in what you used to love. the other thing is around the a1c - I know I am talking blasphemy here - but 9 point whatever is fine, the way I see it is this, it’s not 13%, and he is in a relatively terrible place for wrapping his head around a lifelong chronic disease. I was 13 when I was diagnosed, and it was very hard going from immortal to being “sick”. if you push that perfect 6.0 with “a restriction”, in my opinion, and like what @bookwormnerd13 said: he’s going to lose it. I would urge you, if you really need to, to come up with a plan that emphasizes reward, perhaps along the lines of subsidizing gas money as a percent of a1c target??

further in my opinion, the trick to putting up with this crap for life is not in striving for perfection, but in striving for manageability. there is a diabetes “burnout” book that has some insight about the fatigue of being t1 every day, with no time off for good behavior. The title is “Diabetes Burnout, What to do When you Can’t Take it Anymore”.

I spent many years lost in depression. I ignored my diabetes for a very long time. Now I am 52. doctors actually told my Dad I’d be dead by now. My son is 8. work is good (pays the bills) and play is better. even with t1 I am better off than many (if not most) of the rest of the world. In a million years I couldn’t have predicted where my life would take me. To this day I never test inject or even play with my pump in front of people. my a1c is right where I want it to be. your son is calling out to you because he is terrified about the future because of what he has to put up with, because he also sees his friends (his only frame of reference) do not have to put up with it, and no one, not his trusted parents or doctors, or any higher power can cure him. he had to grow up faster than he wanted to and it leaves scars.

kids watch what you do way more than listen to what you say, so be strong and be honest and above all else, take care of yourself. if you are not, he’ll never take your advice about taking care of himself.

you are doing a great job. stay the course. YOu can’t protect him forever, you can only prepare him to fully take over in a year or so.


(wadawabbit) #9

Hi Mom. Sometimes parents tell their children to do certain things "because it’s good for you. " I don’t know how you’re going about it so I’m not here to find fault or judge, but I hope you’re able to spin things in such a way that Your son understands that having a device such as a Dexcom can help him keep up with his friends. Not using the tools available may make them feel like the rest of their friends on the outside, but if they are staggering around with low blood sugars, or in the hospital with DKA, that really sets them apart. Hopefully he will come around. Also, over the summer check out diabetes camps; and perhaps you can find a support group in your area.


(wadawabbit) #10

Hi again Mom. I don’t know about the state you live in, but in DC (where I am) and I’m sure others as well, a doctor must sign a form indicating a person can safely drive a vehicle if they have a condition that could lead to unconsciousness. So check and see what the laws are in your area.
There are LOTS of diabetics on the road who are responsible about keeping things safe. I would suggest you and your son meet with your endo and discuss the plans for learning to drive, and what s/he expects from patients in order to sign off on the form if one is required.


(Jennifer) #11

UPDATE - Thank you ALL so much for your valuable input. After sharing all the responses from my post with my son he has agreed to try the Dexcom again. It is all about educating him and selling him on the points that he dislikes and that is checking his blood at school in front of his peers. I went through his Omni PDM and saw most days he was just giving himself insulin for what he was eating but not checking his blood for a correction. He admitted to me today that he was not happy with himself about that and I just praised him for acknowledging that and I told him my struggle as a mom to not push too hard but to support and guide the best way possible. He wasn’t too excited I shared on a forum and this is actually my very first time doing anything like this but I too struggle to find other T1 parents to share my concerns with. I have a short window to guide him and help him take responsibility of his health. I express to him its my job as a mom to ensure my kids are safe and healthy. I worry about making a mistake as well. We are learning together and I try to be as resourceful as possible. As a family we participate in Beat the Bridge in Seattle hosted by Nordstrom to raise money for T1.

Thank you again for all your help. :smile: I am encouraged.


(Dennis J. Dacey, PwD) #12

Hi Jennifer @Mkprncs,

Thanks for sharing those great pictures and thank your son for stepping forward and showing that “real” people can be actively living with TypeOne. It is wonderful how he developed the courage to step out in public, with others like him, to help bring awareness to the general population. I had to hide the fact that I had diabetes after I was fired bu Prudential Insurance Company in 1960 after someone noticed that I had entered “diabetes” on my employee health insurance enrollment form - that taught me to be “dishonest” with future employers. Thankfully the world has changed.

Let him [and you] take one step at a time - each step is moving toward his goal of enjoying a long, full and active life.