My daughter Nicole was diagnosed with Diabetes 4 years ago at the age of 9. She started out for the first 2 years taking insulin shots, and has been on the pump for the last 2. Every day I ask her “what was your blood sugar?”, “Did you boluse for that?” before she eats. I try to stay on top of it, but with 3 other children, my wife working days, and me working nights, it gets to be chaotic. Today she went for her A1C test, and it came back 11.8. She has been hovering around the 10.5 to 12 range for the last year or so. Our endocrinologist at CHOP has been very nice & supportive with Nicole over the past couple of years, but she has had enough. Today she recommended we start taking Nicole to Brail classes now, because it’s easier to learn while she still has her sight. She’s only 13, and I’m looking to the future where she very well might end up on dialysis, losing her vision, losing limbs, never being able to have children, etc. I’m constantly on her every day about it, but it’s not working. I feel like a bad parent because this is my little girl, I’m supposed to protect her, and she’s heading down a road of permanent damage, and I’m gonna feel responsible for it because I didn’t take care of her. I need help.
I will start by saying I am not a parent, but I have had T1 since I was 18 months old and can relate to the various stages of growing up with diabetes.
First of all, reading this post REALLY makes me hate your endo no matter how “nice” she has been in the past. How dare she tell you to sign your daughter up for braille classes?!? No matter the state of your daughter’s control, she should not be shaming either of you like that. I don’t know what your options are but I would suggest looking for a new endo. You are trying your best and should keep it up. Diabetes is for life (unfortunately) and your daughter will go through stages of good and bad control as the years go by.
By no means am I going to tell you not to worry about your daughter and to brush this off, but I hope I can offer some level of comfort with my own story. I never had great control growing up and spent most of my teen years with an A1c in the 12-13 range. Those years are notoriously bad for control because of the fluctuating hormones anyway (which your endo knows, I’m sure). I started on a pump right before my 16th birthday. Things got a little better after that but I can’t say I ever really took diabetes control seriously. In my college/young adult years my A1c was typically in the 8-9 range.
I started thinking about marriage and pregnancy about 3 years ago and that’s when I started making any real efforts towards control. I got my A1c all the way down to 6.8, but have since come back into the 7’s. It happens but I just have to keep trying.
After almost 29 years of diabetes (most of them with much higher A1c’s than anyone recommeneded), I am complication-free. Maybe I’m just lucky–I can’t be sure. My point is that “good” control can come and go, and most certainly will throughout your daughter’s life. The teen years are especially rough with growth spurts, raging hormones, and general teen rebellion (sometimes even rebellion against their own diabetes by not testing, skipping insulin doses, or worse). Her insulin needs will fluctuate for some time–hang in there!
Please do not get discouraged! Keep trying! It may not be easy, but the two of you can absolutely do it together.
(and tell your endo where she can shove it while you’re at it–you can tell her I said so if it helps)
I agree with @KSmerk12. Your endocrinologist’s statement was cruel, unhelpful, and just plain idiotic.
I’m also not a parent, but I’ve had type 1 for almost 25 years, diagnosed at age 4. We’ve all had high A1Cs. It happens. And dealing with kids in that age group isn’t easy, either. I can only imagine what you’re going through with three other kids and your work schedule.
When I was in my early teens, I went through a high blood sugar phase and I would lie to my mom about my numbers. Once she caught on, she started looking at my glucometer history and standing right next to me while I tested. It wasn’t fun, but it did put an end to my fibs. Do you think your daughter is being honest about her numbers and bolusing? I know it’s a lot of effort, but you may need to just stay right there while she tests and see what the numbers are yourself, instead of relying on what she says to you.
Setting an alarm on your phone also might help you keep an eye on her sugars. Before I got my continuous glucose monitor, I used cell phone alarms to check my sugars one hour after I ate, to make sure I wasn’t going up too high.
The bottom line, though, is that it’s a ton of work and no one is perfect. There is no need for an endocrinologist to say something like that to the parent of a type 1, and I’m glad you are on TypeOneNation, because we can absolutely assure you that high A1Cs happen to all of us, and that we know you are doing the best you can do.
Another thought I had is that maybe you can contact your JDRF chapter to see if there are any local volunteers who could serve as a mentor to your daughter. I do this out here in DC, and I think it’s a great program.
I"m thinking of you, and do not think that you’re a bad parent. Type 1 is a tricky, unpredictable disease.
I completely understand what your daughter is going through! I myself have gone through the exact same thing, as well as my friend who also has T1D. My friend was told the same thing pretty much from her endo and her parents put her in a inpatient hospital. Cumberland. And since then everything has been getting better. Another great support that I personally found very helpful was the Diabetes Research Institute in Miami. It is a week long class on Mastering your Diabetes. Also, I went to a therapist and still do. Talking to someone about my diabetes has been really helpful for me.
Encourage your daughter that taking care of her diabetes is the best thing for her. What turned me around was when I realized what I wanted to do for the rest of my life, and it did not include reading braille and getting legs amputated. So now my a1c is better but it will always be hard to manage.
Keep on top of your daughter, but the goal is to do it in a way where she won’t realize how ‘annoying’ you are being. Instead of asking her what her number is every time she checks, just ask once a day “How were your numbers today?” You have to give her some independence even in a time like this. You can always look at her pump or her meter when she won’t tell you what is going on or if you are having trouble trusting her.
I promise that things will get better. Sadly all diabetics in this teenage stage have the exact same thing going on. Get a hold of local support groups if you have any. Meeting people who are going through the same thing could be helpful too.
Best of Luck!
Thank you all for the feedback. I think I understand why her endo reacted like this. I myself have tried to protect Nicole from the thoughts of all the complications associated with T1D, but sometimes feel like she needs to wake to the fact that these are long term realities that could happen if we don’t manage her sugars better. I think that’s what the endo was trying to do, give her a wake-up call. I know she worries about her. Nicole will be going away this Summer to a diabetes camp, so I’m hoping that experience will open her eyes a bit to dealing & managing her diabetes better. Again, thank you all for being there. Hearing from others that have gone through similar circumstances and coming out the other side years later is a comfort to concerned parents.
OKay, mom: this is just wrong. Wrong on so many levels. First, scaring a child NEVER works. NEVER. All scaring does is make a kid thing “Well Im screwed anyway – why try?” I know this because my child was thinkign that way until a new endo told her she was FINE and was NOT going to have complications.
It’s also wrong because really, in first world countries, no one is going to go blind from Type 1 diabetes anymore. We have tools and medicines and laser surgery to avoid it. Its NOT going to happen even if she continues on that route.
It’s wrong because harshness is the opposite of what your child needs. Recently, someone asked me to ask my now-adult daughter with diabetes what the best tool is to use with a teen struggling with their daily diabetes care. I wondered what she’d say/ CGM? an iPhone? She thought about it and said this: “I’ll tell you what tool is best mom: Compassion. We need compassion. We already beat ourselves up more than anyone else ever can. We are not stupid. We know we should do better. So compassion is the best tool you can use!”
That said, that a1c is very high. I am going to suggest a new endo and in the meantime, YOU take over the actual care. I mean, if she pumps, YOU push the buttons, IF she is on MDI YOU do the shots. Watch her check her bg at least two times a day (instead of say her doing it in another room). KNOW for sure that all is going as it should and then make adjustments from there. I’m happy to help you any time. Been thorugh this with my child and she’s a wonderful, happy, healthy adult now!
I think that is an unprofessional approach to care for anyone with diabetes, but a 13 year old? It’s downright dangerous. Nothing positive can come from such a negative comment. When an already difficult situation suddenly seems hopeless, well I’d be afraid of what kind of reckless reaction that could trigger in this young, vulnerable and likely afraid person who is dealing with so much. She needs understanding, positivity and for the adults who care about her to never give up on her. That’s the kind of support that will achieve positive results. All the best to you and your family.
My a1cs have always been a little high and she will tend to be higher because of puberty. for the longest time i was between 8-11. Im now 19 and i went from an a1c of 11 to a 9, it will be tough but im sure she will be able to handle it. Yes it can cause complications but a lot of it is to scare you into getting it where you need it (at least in my opinon). this does not make you a bad parent(my mom is the same way) and i still struggle with remembering to doing the finger pricks and its mainly because i feel singled out.
My world is falling apart. Two weeks ago, my son had a lump on his left testical. Turns out to be testicular cancer. He’s only 15. Can’t stop crying, 2 sick kids. I need help.
@michael_seidl that is terrible news. I’m so sorry to hear this! I hope your son’s cancer docs can help your family find emotional support or a therapist during this difficult time. Also, I don’t know your T1 son but please don’t worry about him being “sick”. T1D is manageable, and hopefully your other son’s cancer is curable. Much like with T1 you can’t lose hope and just have to keep trying. Keep praying–I’ll be sure to send a few your way as well. Just keep your head up!