I have a 21 year old son who just passed his 10 year mark. Since going off to college, and leaving the safety net of mom, his control has really suffered. I understand that he has an overwhelming fear of lows due to a history of 3 severe seizures, the last one left him unresponsive and required Glucagon to pull him out of it. My frustration is with the doctors and Diabetes Educators who look at his two week pump readings, with an average BG of 213 (A1C @9.3) and say, "Well, I don't really see a pattern", so they make NO CHANGES!!! No changes, his A1C hasn't been under 9.0 in three years, do you think somebody should do something? I'm at a loss for words, I am left with no choice but to bring him home for a week or more, and follow his every move 24/7! I have seen the "diabetes coaching" businesses, such as Gary Scheiner's, but why aren't these services more widely available, and covered by insurance? Very frustrating, any ideas?
I'm not a parent, and you don't need to be to see what is wrong with THIS picture. No one should ever have an average BG of 213, ever -- unless they are recovering from heart valve replacement, and maybe not even then. An otherwise-healthy 21 year old college student with an A1c of 9.3 has a problem that needs to be fixed!!
As many here can testify, HCPs can advise until the cows come home, but the person with diabetes needs to be the ultimate boss. If the health care team can't or won't wake up and smell the fire -- i.e., make the necessary adjustments -- then they need to be "persuaded" with whatever degree of firmness it takes to get the job done. Sometimes -- unfortunately -- being a very squeaky wheel is the only way to get the right result.
I have a 15 year old and I get so stressed out thinking about her going off to college and having to manage her diabetes on her own. She knows what she needs to do but doesn’t. She will eat and then do her insulin for the meal and by the time she does it her blood sugar is sky high. Sometimes she forgets to do her insulin. She doesn’t test her blood glucose enough as well. I remind her all the time to do the right thing to which and I get the rolled eyes and brush off. We can not be with them at all times so as David said it is ultimately the responsibility of the person with diabetes to take care of themselves. Yes, maybe your son needs a tweak in his carb ratio or basal rate (if on a pump) but is he really doing what he is supposed to do? Was his control better before going off to college with you there to remind him to do the right thing? I have some leverage now because my daughter wants to get her license so if she doesn’t do the right thing that is not going to happen. I hate to have to be that was but it is all I have right now. I so wish that they could understand the harm that they are doing to their bodies. They won’t understand this till complication related to high blood glucose sets in and by then there is little that can be done. I feel for you hockeymom because I fear I will be walking in your shoes in the future.
That is so frustrating. I feel for you. I have a 7yr. old son, so I get to control everything, but it must be so difficult when that control is no longer in your hands. If your son has a fear of lows, would he be willing to wear a CGM? Perhaps the security of a CGM that alarms him to lows, would help with his control. It sounds like his fear of lows is what needs to be addressed. Perhaps he can start gradually - rather than have an average of 213 BG, he can aim for a lower BG, that still feels safe for him, like a target of 150. Good luck!
is he coming home for the summer?? hopefully so, then you guys can really put your heads together... jacob is 14 so he really doesnt have the motivation to change his settings himself, i wouldnt want him to, but he has been growing and lately i have been tweeking like crazy basals and IC ratios, i am glad we have a visit coming up his team is awesome but i hate to bother with them in between visits unless i am truely stuck. that being said he needs a new doc my goodness... can he still see his pedi endo?? i understands your sons fear of lows after bad experiences but small changes may really help as well as being more mindful of his food choices, i have always advocated eat what ever and treat with jacob because i hate to be restrictive but fatty food can be a real probably and if your son is not extending and prebolusing which jacob does not always do unless i am around that can lead to problems too. jacob is always eating now i mean always which is another problem....i truely feel your pain especially as they get older you need to hand over the control but doing this all solo is really hard, is he agreeable to you making suggestions? i cant get jacobs pdm to download at home so i still keep a logbook to see trends so i can adjust, obviously your son may not want to do this at school but if he is home for a bit it might help, hang in there, this is a tough time for him and you i bet he is frustrated too not just with his numbers but with the whole burden of having to deal with D while his fellow students are living the carefree life. some kids just totally throw their hands up at this time, so be grateful he is "still in the game". one of the cardiologists i work with once said yeah sometimes they just runs basals on these kids to keep them out of DKA, i was soo annoyed by this comment really would he want that for his child, now i rarely mention our diabetes battle at work. but that is another story, keep supporting, please keep us updated. may the diabetes god be better to you both! amy
I am presently reading Mary Tyler Moore's account of her struggle with diabetes ("Growing Up Again"). In it she describes, with great candor and honesty, her years of casual neglect and the price she is now paying, which isn't pretty. I doubt it would hold the interest of a 15 year old, but a twentysomething might be mature enough to get the point.
Just a thought.
Wonder if my 15 year old would read the book or at least the part about the consequences of neglect. Thanks for the idea David.
here's hoping the dex com will help him feel safer, after really reading your post this seems to be more of an issue than anything else... it is better to have him be monitoring vigilantly, poor kid his motivation really is influenced by his fear of hypo for now and that needs to be respected as well as his desire to live the carefree college life, i think he actually is in a pretty good space compared to allot of kids his age...with time his fear will lesson and he will tighten his control, maybe some therapy down the road to help his fear if his endo team isnt able to help him out with this. I think you are both doing a great job. It is so hard to hold back on the 'preaching' but by letting him handle his D his way, you are showing him respect and allowing him to feel in control which is a powerful motivating tool, with this vote of confidence his control will improve in due time...hopefully with his best friend dex by his side. you are a great mom! talk soon, amy
9.0 is high even for a college student. My son's was 7.7 at the end of his first semester at college and his doctor encouraged him to do better as this was much higher than it had been.
It is harder to adjust after hockey at college because the games and practices start at 10:30 at night and last for 2 hours. Mine has had a few nights where he was so low he was afraid to sleep and missed class the next day. Travel hockey and high school hockey seemed to be during the day or at least earlier in the evening so we had time to adjust.
It's hard when you are no longer welcome at their appointments and it's up to them to navigate the system. If he is seeing the same DE each time, I would have him request a different one. With a BG of 9.0, some adjustment should be necessary. It kind of feels like changing hairdressers in the same salon but our doctor had no real problem with the switch if it would help my son.
We had a older, motherly one to start (perfect to work with Type 2 women but not a teenage boy) and my son did not like her at all - she could not download the pod info, she was very nutritionally minded which only made having diabetes worse in his mind and any good suggestion she had was totally dismissed. When she was on vacation, we saw a younger DE, technically trained by Insulet and the rapport was much better. Everything she said was gospel and soon his BG was lower than my slightly pre-diabetic number. To her credit she always downloads the entire semester of data and spends at least half of the 1 hour appointment calculating ratios, highlighting trends, asking questions, etc. and then making adjustments.
She has always told him the key to keeping your BG low in college is keeping a consistent schedule so that the pump basal rates and ratios can then be adjusted to that schedule. Staying up all night when the pump is set for nighttime basals or sleeping all afternoon when the pump assumes you are actively using insulin is the best way to increase your BG. Second semester, he chose later classes so he also stayed up later and she helped him adjust his pump to that schedule at Spring Break.
Good luck to your son.
9.0 is high for anyone.