Hi Everyone,

 

My 18-year old daughter is a freshman at Emory University in Georgia and was diagnosed with Type 1 back on Sep 7 just about 2 weeks ago. Our home is in the Los Angeles area, so, she's some 2500 miles away. I'm at a crossroads and don't know what to do and need some help, suggestions, etc. Perhaps a little background first...

 

The first couple of weeks of school was particularly tough for her as she was struggling big time with homesickness. After a week I instituted a nightly conference call for her with me and my parents, brothers, sister, etc, and it really helped her as she was starting to find her stride. Then... wham!! she's diagnosed with Type 1. I was on a business trip when she called from the health center at school where they told her she needed to be hospitalized to get her blood sugar down from 538 as she was likely diabetic. I was in Phoenix at the time and immediately flew to Atlanta and was in her hospital room at 9:45PM that same evening. I've been here ever since helping her get adjusted to her new life as a Type 1 diabetic and am planning to head home tomorrow afternoon after almost 2 weeks being here. She's scared and so am I........

 

My daughter and I have a phenomenal relationship. She knows that I will be there for her in any way whenever she needs me. Our bond is exactly as I imagined it would be even when I told her mom all those years ago when she was only 2 that although her mom and I were divorcing there was no way that I was ever divorcing my daughter!! I've always encouraged her to face the difficulties in her life head on and to tackle things as they come. She's extremely capable in just about every way in life - even when she doubts herself she gets surprised at what she accomplishes. Maybe this is too much all at one time?!

 

Freshman year is hard enough for young adults as they head out on their own trying to make their way in a sea of strangers, responsibilities and freedoms they've never before had. Adding a new diagnosis and trying to manage her insulin, carb counting, prescriptions, supplies, snacks, BG testing, ketones, lows, highs, 2AM tests, calling in her levels, doctors appointments, etc, along with classes, studying and all the other freshman-year-stresses just seems waaaaay too overwhelming!!

 

A lot of you on this discussion have been dealing with all of this for years... knowing what you know now, if you were in my shoes then what would you do? Would you encourage her to take a semester or a year off to learn all of this Type 1 stuff first and then go back to tackle school? Would you tell her not to change her life on account of this disease and simply keep moving forward and tackle this day-by-day? Would you take a leave of absence from work to go live near her for a few months while she attends school so you can help her tackle the diabetes simultaneously?

 

I am completely lost and have no idea which way to turn!! And, I haven't even yet mentioned my irrational fear of her slipping into a low while sleeping and I'm not there to test her in the middle of the night!!

 

Thanks for any encouragement... guidance... or anything else you can give!!

 

-Schmaps (aka Rob).

Tags: college, diagnosis, dx, new

Views: 356

Replies to This Discussion

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,
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.
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 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
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
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.
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
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.
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.

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