Hi Lori Ann,
Sarah is in Oxford, GA some 230 miles away from Savannah, but, I still think it would be great if Dylan and she were able to connect. Please feel free to have him friend her on here (she’s “Sweeted Fease”) and on Facebook at http://www.facebook.com/home.php?#!/profile.php?id=1336033892
Thanks again, Lori Ann. And definitely let me know when Laurie contacts you!
-Rob.
Good luck - you sound like such an excellent parent. I think you’re right that she will eventually need to take over those bigger/beaurocratic responsibilities but for now it’s just too much. It can be such a hassle getting perscription info. set up and working smoothly and dealing with what falls under what part of your insurance etc.
It’s an emotional roller coaster. My brother had died (young and with a family) just prior to my daughter’s diagnosis. I was so thankful that she didn’t have a terminal illness that I didn’t grieve for her or her diagnosis for about a year - I think I led her that way a bit and she hit a wall about a year after diagnosis.
I think you’re lucky to have found this resource. It took me several years to stumble across and it’s great, you can get on at anytime and read other peoples questions/posts and, as you can see, yours get answered pretty much around the clock.
I know, as a single parent, I had no one to share this grief, overwhelming responsibility and confusion with. I hope you have support and people available that you can turn to. I found a parent group through JDRF and there are other parents of young college age kids in my group - perhaps there are some in your area.
My daughter will be contacting your daughter, I’d imagine, soon. She’s a bit younger so it may not be as helpful a contact - but she’s an active, vibrant young woman and may be just another face to add to her list of people she shares something in common with.
When/if she chooses to pump my daughter is a very thin (which posed some unique challenges,) fashion aware, salsa/african dance/ballet dancing pumper - maybe she can offer insight there as well.
Keep connected -
Dana
Rob,
I’m sorry I can’t offer much advice for my daughter is only 5 (diagnosed at 2). I often think of college years and can’t even get through the thoughts that go thorugh my head. I just wanted to let you know that my heart goes out to you and your daughter. You are certainly not alone.
Good luck,
Andrea
Hi Rob,
Laurie Davis contacted me. She has registered to this site and is waiting for approval. I am very confident she can assist you as well as she did for me. Also, my son Dylan is working toward contacting Sarah. I will talk to you later. Hang in there.
Lori Ann
Im so sorry for your daughter and you, what an awful time for something like this to happen. I cant tell you what to do, but one little bit of advice about the low blood sugars…you may want to talk to her endocrinologist about a continuous glucose monitor…I know they are pricey and are not always covered by insurance, but the alarm if she gets too high or too low, and will alert her or her roommate if she needs attention. My girls do not have these yet, but I will get them when they go away to college for sure.!
Amy
Rob,
How are you and Sarah doing? Has Laurie contacted you yet? My son contacted Sarah on facebook. Are they talking?
Lori Ann
Hi Lori Ann,
We’re actually doing pretty well right now. She’s been texting me prior to going to bed with her BG number and then when she wakes up in the AM. Up 'til a couple nights ago she was getting up at 3AM her time to check and texting me that as well. We decided together that we’d start letting her sleep through the whole night w/out the 3AM check and, well, so far, so good (though I’ve been even more nervous as a result, but, I haven’t told her that!). I’m sure over time that I’ll calm down and be able to actually sleep at night without having one ear listening for the phone. 
At this point, I don’t ask her what her numbers are during the day, rather, just her bedtime number… I’ve gotta get myself pulled away from that as well, but, that’s gonna take a little more time! I honestly don’t know how her mom does it cuz she never asks and doesn’t even contact her everyday. On the one hand I think, well, maybe she’s just more trusting of Sarah and that she’ll do the right thing and take care of herself. On the other hand, Sarah says she doesn’t think her mom gives-a-hoot cuz she doesn’t contact her about these things. I know I’ll get to the point of just knowing that Sarah has everything completely under control, but, her nervousness and questions still make me wanna be helping her and know that she’s safe at night and waking up in the morning!
I haven’t heard from Laurie yet (my direct email is rob_squiers@yahoo.com and my cell# is 310.809.1330). Maybe she’s tied up with other things of her own and hasn’t had the chance.
I believe that Sarah heard from your son on Facebook, but, I don’t know what their interaction has been. I’m hesitant to push her with contacting other folks and reaching out cuz I sometimes get that pregnant pause from her like she’s annoyed with me pushing her to reach out to others (even though I know that speaking with others that are dealing with Type I would be helpful to her just as interacting with all of you on TuDiabetes is exorbitantly helpful to me!).
Thanks so much for checking in. It’s greatly appreciated!!
-Rob.
Thank you, Andrea. I definitely appreciate it! I can’t imagine having to deal with everything with a toddler who doesn’t understand why they’re being stuck with needles all the time and why noone else is having that done to them, etc. It’s gotta be draining on all of you! I wish you all the best of luck as well and may even have a bunch of advice to give by the time your little one hits college years!! 
-Rob.
I’m glad to hear things are going well Rob.
My family went to family camp this past summer and it was a great experience. One night the parents had a chance to talk to some of the counselors who live and grew up with T1D in an open forum. They unanimously agreed that they wanted their parents to be interested in their diabetes. Perhaps not always involved, but interested. The term used was “supervised independence”. How to apply that varies, but allowing your child to manage their diabetes but maybe have weekly conversations and review of results and brain storming adjustments may be a good example of what might work with you and your daughter. I got the strong feeling that although these young adults wanted to manage their diabetes, they also wanted help. Not buttinksy help, but respectable let-me-bounce-this-off-of-you-and-please-don’t-judge-me help.
It’s great to hear that things are going well so far.
Hi Amy,
Thanks for the info on this. I looked up some of the CGM’s and am wondering if they’re for constant use to wear all the time, or, if they’re just being used for short periods of time (a week or so) to collect a good snapshot of how things are going day-to-day. They sound awesome to me and make me think that automated biofeedback devices really aren’t all that far away. Let’s hope at least!
Appreciate the support for sure!
-Rob.
Hi Lorraine!
I agree and think that’s where Sarah will be. Funny that while I was typing that response to Lori Ann, Sarah called me saying that she was about to head into class, her BG was at 81 and she was starting to feel a little funny, so, what should she do. I told her to eat a 15g snack or drink one of her 15g juice boxes she had with her (she didn’t wanna walk all the way back to her dorm room) to get herself through the 90 min class and then go to lunch and check herself prior to eating a late lunch. It gave me a little instant feedback that my concern and care with her is at the right level right now! Phew!
BTW, I saw on FB that you live in Danbury, CT. That’s a pretty wonderful place since I was born in the Danbury Hospital waaaaaaay back when in 1966! My parents moved to Maine when I was about 1, so, didn’t really get to experience the area. So, of course, I grew up a Sox fan as opposed to a Spankees fan! But, I guess I have to give profs to the Yanks and Rays for clinching playoff spots. Mighta been a different year if 1/2 the Red Sox lineup was on the disabled list the whole darned year. Oh well… baseball just doesn’t really seem all that important to me right now anyway. I went almost 3 weeks w/out even checking scores and normally I’m on my phone everyday on the mobile MLB.com site. Interesting how priorities in life can become sooo clear so quickly at times… and this is definitely one of those times!
Thanks for checking in and giving me such great feedback as usual…
-Rob.
Oh it sounds like you have the perfect balance working with her! Good for you, Dad!
You’ll be back following baseball again before you know it. We recently went to a Red Sox game at Fenway and quietly enjoyed their loss.
All my kids were born in that same hospital! My husband and I are from across the border in NY, but have been in CT since we married.
Again, it’s nice to hear from you and how well things are going.
Hey Rob
Congratulations on the trying to sleeping through the night. That is an achievement.
Diabetes is all about balance and not just the insulin to carb balance. You spoke of trust. Finding the right balance of trust with teens is as difficult or more difficult than managing blood sugar. I am the dad of two teen T1s. I have a little first hand experience and my share of mistakes and successes trying to find that balance.
I commended you for not asking about daytime numbers. That is a huge step in the trust process. It appears you are striving for a new normal. It is very hard not to live and breath diabetes numbers but they are just that numbers. They are not good or bad. They are and indication of actions to take. You daughter is your daughter not a series of numbers. Bravo for starting down the path to live that way so early.
A far more significant thing than any one number is if she has or is learning to listen or feel how her body tells her the blood balance id off, particularly feeling lows. So some night when you are talking or texting with her don’t talk about a number talk about the symptoms she feels. Always talk about her life first and last.
I saw your post about CGMs. They have up sides and down sides. There is a book just out by one of the nations most experienced CGM users William “Lee” Dubois. You see the books web site here: http://www.redbloodcellbooks.com/art.html Note the official warning: If this book were a video game it would be labeled MATURE for a sprinkling of explicit language and for deadly serious subject matter.
I know the guy who wrote it and there isn’t a more knowledgeable or nicer guy on earth.
I think CGMs are useful tools. They are not a panacea. My two cents is that you have a lot on your hands and learning the nuance of using a CGM is adding an additional burden you family can put off. Maybe a good thing to look at as the new normal settles in.
All the best
Wow, this is a tough one. First of all you sound like a great parent , asking all the right questions. My 12 year old daughter was diagnosed as Type 1 two months ago. I am a nurse and I had to take off 6 weeks of work to help my daughter manage and get into a routine.
This is definitely overwhelming for both of you.
I dont know , as a parent, if she really wants to stay at school I might, if I was able , take a leave and stay out there for a few months to help her navigate through all this. Even you just helping her test at 12mn and 3 am lets her sleep, and it helps if someone gives her her long acting insulin at night(Lantus), Also it would help make sure she got the right nutrition and proper carb/protein/fat balance as some Freshman are notorious for not eating properly or not eating at all except for a bag of Doritos due to their hectic schedule.
So I guess my answer is that yes its helpful for you to be around whether you move out there for awhile , or she comes home till December to LA to get things squared away and goes back in Jan. Yes it is a lot to handle , but it get easier and better as time goes on especially with a great support system like you 2 have. Ultimately you know your daughter the best. Good Luck . I am still figuring all this out with my daughter.
I want you to know that I totally relate to your post. I live overseas, in India, and my daughter was diagnosed one month into summer before her freshmen year. She was enrolled in college back in the USA but not in our home town. We had 3 weeks before returning to India learn EVERYTHING about diabetes and our role as parents in supporting our daughter, as well as figure out all the medical complexities of doctors and insurance. At the time I had the similar questions to you: should I take a leave and stay back to help with this transition? How was she going to respond? What about the demands of school- and in her case adjusting to life back the in the USA after a lifetime abroad? My heart ached for her. It seemed really tough in terms of timing.
In our story, my daughter surprised everyone including herself by embracing the situation in a very positive and independent way - from the beginning. I was prepared for any kind of response, and would have respected whatever her experience turned out to be but was so grateful that she really took hold of this. That enabled me to get on the plane and leave her. I know this could change and that every kid is different so have no ideals that I would expect to play out in a certain way. She would tell you that her time of diagnosis is the best because she had her carefree childhood, she was setting her new life patterns ( food, social, work, etc) and could figure this in at that point rather than later setting and then having to recalibrate everything. She feels that she is old enough to be independent with her healthcare and so has not had to go through the transition of having had parents manage and then having to manage herself.
It was my perception that she had a first year in college where her academics were more background and her life patterns and health were more foreground. She left a major study direction that she had been accepted into b/c she observed that kids in that program were under a great deal of pressure and worked wild schedules to accomplish the work required. She couldn’t see herself in that. This year she seems much more engaged in her studies and has added more elements to her self care like more exercise.She is on a pump and a continuous glucose monitor. She has a good health care team and seems to have created a social network that accepts her and supports her as she is. One challenge that has surprised me has been lack of support from teachers. She has been given derogatory nicknames (“Insulin Drip” or something similar), not letting her have a snack in a long final, not being flexible about times of blood sugar impacting her ability to do something required, etc. As teacher, I find this shocking but figure that the college scene is probably differently focused on the whole child than we are in lower levels. However she has advocated for herself in this either with the teachers or student services. And we both know she has to learn to anticipate balance all these things well beyond school situations.
I have not had a chance to read all the pages of responses to find how your story is unfolding but would love to know how your daughter- and you - are doing with this. I am certainly learning much about letting go, trusting, being there but not over-parenting -in general and around the diabetes. I am grateful to have support of these groups and glad in particular to find folks like you who have an older T1 kid. We aren’t in the front lines with them and it certainly isn’t as draining yet it brings its own challenges - living with uncertainty and distance being some of them.
Sending warm wishes of happiness and health to you and your daughter,
Adele
Hi Adele,
Thank you sooo much for posting this reply as well. My daughter is doing phenomenally well right now with just about everything. She hasn’t grown out of her homesickness yet, but, I think the diagnosis and everything around that has delayed that a bit. Plus, she has a great relationship with me and my sister (who is almost a surrogate mom to her) and loves her family dearly, so, I think it’ll take her a little longer than most kids anyway. She has a followup appointment today with her endocrinologists office and was really wanting me to be there with her, but, she’s heading out on her own and will do just fine! And, I actually tracked her blood sugars over a three week period including averaging how much she drops during sleep - 29 points - which helped ME be able to sleep a bit better! So, like I said, she’s doing great!
I did want to ask you if your daughter registered with the Office of Disability Services (ODS) at her school. Type 1 Diabetes is covered under the American Disabilities Act and, as such, her teachers MUST allow her to eat or drink during class… allow her to schedule exams so too many aren’t on the same day… and not show disrespect to her because of her health condition. Would they call someone crippled for like and bound to a wheel chair some derogatory name because of it? I doubt it! And they shouldn’t for this disease! Furthermore, they can be fined or disciplined if your daughter is discriminated against in any way because of her condition. I strongly urge your daughter to get ODS involved if she hasn’t as of yet.
Lastly, and I plan to ask some others about this as well, did your daughter happen to start taking birth control in the year prior to diagnosis? My daughter’s mentrual cycle was fairly weird and her pain was pretty high. Her doctor recommended going on the pill to regulate the cycle and ease the pain which did actually help her tremendously. However, I’ve heard rumblings that people are thinking that the pill could trigger Type 1 with girls that have the genetic markers for the disease. So, I’m just curious (if this is too personal a question, then I understand if you don’t want to answer)…
Thanks again and hoping that things are going well for your daughter and you!!
Warm regards,
-Rob.
Dear Rob,
I appreciate your response. I am so grateful to hear that your daughter is doing well with her new life. It seems you are doing well too. Even if it makes being apart harder I really believe that the deep bonds she feels with you and other family members will continue to be a great source of strength for her.
My daughter has been very proactive about talking with her teachers, claiming the protections of the ODS, and has advocated for herself in each of the cases where teachers have been “out of line” with honoring her needs and health reality.
I am intrigued about the birth control question and would like to hear more. Do you have any links to studies or info on this?
I am still reading through this discussion thread and am looking forward to hearing how all this takes form for you and your daughter.
Be well!
Adele
My son was diagnosed at 18 months so it’s the opposite end of the spectrum from your situation, BUT I also have a 17-year-old daughter so I know what they’re like. I would definitely, DEFINITELY encourage you & her to consider taking at least a semester, and more likely a year, off to learn how to handle her diabetes before she starts school again. Here’s why:
I’d say more but my own little T1 just came in looking for mommy
Hi Elizabeth,
Thanks for your suggestions and insight. As it turns out, my daughter did indeed stay at school for 1st semester and did exceptionally well dealing with the Diabetes and with her courseload (she got straight A’s!). However, she also started getting a little depressed by the end of the semester. So, she took a medical leave of absence from school for 2nd semester with the intention of returning to school in the Fall. So far so good!
I hope that things are going well with your little one (and older one!)…
-Rob.
I realize it may be a bit too soon after dx to consider my suggestion. But, regardless of whether you are on shots or a pump, I would consider getting a Dexcom 7 Plus system ASAP. Along with a baby monitor to amplify the sounds of the alarm. A continuous glucose monitor will bring some peace of mind and extra safety, as the child is living alone at college and parents will not be available to help check blood sugars in the middle of the night. For a child or young adult living on their own, I consider a cgms to be the most invaluable tool your child could use. I suggest the Dexcom because IMO it is the easiest and least invasive on the market to date. Each sensor lasts 7 days and most who use Dexcom restart the device and get 9, 10 or more days out of each sensor. Insurance will often pay (you may have to appeal). Once your child gets used to cgms, it will give her a lot of freedom. P.S. Make sure to put the Receiver on a nightstand next to a loud alarm (baby monitor) though. Alarms are not yet loud enough and your child may not respond to vibrate when asleep. P.S. I would leave the decision of whether to take off from college up to her, but if you want to take a leave of absence and stay near her for a few months, that would be wonderful, so helpful, and FMLA at your place of employment should allow you to do so. I would not feel comfortable leaving her at college alone with no help, no night time checks until she was trained and comfortable, and wearing cgms, yet I would not feel it right to ask her to take a leave of absence if she did not want to do so. But if you, your wife or some close relative could go live with her and help her until she gets on her feet, I think that would be a great solution. I know for many that would not be doable, but you did mention this as an option…