Freshman at College 2500 Miles from Home & Newly Diagnosed - What to do?

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

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).

2

Rob,

First of all, my heart goes out to you… my son was diagnosed last November at age 13. He just started his Freshman year in high school… The first few months are a learning curve but once you get the hang of carb counting, etc… it becomes second nature… the emotional aspect of it is a different thing. My son had a hard time adjusting to social situations with shots, etc… he kind of withdrew but we’re getting back on track now… Your daughter is older and more mature, so she will no doubt do better and being a girl, she is probably more organized and in touch with her feelings, etc… Every case is different, however, if your daughter feels she is up to taking this on and has a good support group at school, I would encourage her to stay… however, you might want to see if you can lighten her load the first year… maybe take a few less classes as the diabetes is a course of it’s own… I would make sure that her roomate and several other people are aware of her condition so that if she goes into a low, they know what to do… We try to encourage our son to do everything he wants to do and everything that he did before he was diagnosed. Hopefully, you have had some good education these past few weeks. A word of warning, do not be surprised if you get hit with some emotions later on… the tend to creep up on you…and know that you and your daughter will come out of this and she will lead a very full life. We are still adjusting to our son’s diagnosis but talking to other families makes it so much easier to cope with.

Peggy

3

Rob,
My son was diagnosed May 6, 2010. He is a freshman in college and we had 3 months to prepare him and we weren’t sure if he would leave at the time he was diagnosed. He is away, playing soccer and doing well. Our adjustment was easier than yours, although I didn’t feel secure back then. There are two wonderful people who can help you. Laurie Davis and Adrian . Laurie’s daughter too was diagnosed a few weeks into college and she made it. So believe there are individuals who can! Another gentleman is Adrian. Laurie can get you in touch with him. After speaking with Laurie I had faith it was possible and I believe your daughter with your support has a chance too. Laurie and Adrian are both through the juvenile diabetes research foundation. Please email me and I will share anything else I can. My son would be available to share his experiences with your daughter if you’d like also. I think being diagnosed at 18 is easier because you understand it more but more difficult in many ways too. Lori Ann

4

Hi Peggy,

Thank you sooo much for your response. The emotions have definitely already been hitting me and I’m sure they’re going to continue. The education at Children’s Healthcare of Atlanta was awesome and certainly helped alot. Still lots of things to go through I’m sure, but, I’m hoping this site will add to the formal education we’ve received.

-Rob.

5

Hi Lori Ann,

I would absolutely love to be able to speak with Laurie Davis and Adrian. Sounds like Laurie is dealing with the exact same thing. I’m curious if her daughter was also far away from home like my daughter. That’s the big part that scares me and is concerning my daughter… the distance while all this is going on.

I’m having breakfast with my daughter in the morning at her school and will be bringing this up to her. I’m sure she’d love the opportunity to discuss this with your son and Laure’s daughter if she’s willing.

Thanks sooo much for responding to this thread. I really appreciate it!

-Rob.

6

Rob,
Laurie Davis and Adrian are both volunteers for the Juvenile Diabetes Research Foundation. Laurie’s daughter is in her early 20’s I believe now, so she is a wealth of knowledge. Adrian too is in his 20’s just began law school but he too was diagnosed a few weeks into college. They both helped me get through this and are still giving me support. I forwarded this on to Laurie, so hopefully she will be able to respond to you soon.

My son is in Savannah, GA, which is 1000 miles away from us in Chicago. Yes, the miles do seem scary, but one advantage I found was if Dylan, our son, was at a school in IL he would have to come back home for Doctor visits. My health insurance, Blue Cross, allows him to be a guest member with GA and I feel much better that his doctor is out there. I did research and was able to get a referral. Please keep in touch. I will check in later.

Lori Ann

7

I have a 15 year old, diagnosed at 12. But, I know two young adults diagnosed in college. Their experiences and attitudes are very different, so I think it really depends on the young adult. The first few months with diabetes are a definite rollercoaster – blood sugar-wise and emotions – and there is SOOOO much to learn. But, for now, I’d say let your daughter be your guide.

Does she want to try to stick it out? If she says she wants to leave, I’d wait make her wait a day or two before you put things in motion because it could just be one bad day or a high or low blood sugar talking. She does need to be super-committed to taking care of her diabetes. In the beginning, blood sugars can vary a LOT. Your fear of lows, unfortunately, is not irrational. If she’s worried that she might be dropping when she’s going to be, tell her to err on the side of a high blood sugar. Her diabetes educator will work through a lot of this – how everything is handled depends a lot of the type of insulin she’s on, whether she’s on a pump or not. Get her to go on TuDiabetes groups, but also make sure she knows that she can really rely on her diabetes educator. She will have a lot of questions, and new ones come up all the time. Tell her not to be afraid to give her doctor’s office a call anytime.

Her life will change because of diabetes – there’s no question. It’s always there. But, she doesn’t have to let diabetes LIMIT her life. If she decides to stick it out, and you don’t take a leave of absence, make sure you learn as much as you can about Type 1. She’ll want someone to talk to, and probably to bounce ideas off of as you guys get deeper into the ins and outs of the big D management. I found a book called Type 1 Diabetes by Dr. Ragnar Hanas very helpful in learning about type 1. And, you’ve taken a great first step in finding TuDiabetes – lots of great people, sympathetic ears and great advice here. You also might both want to get in touch with JDRF. They have an outreach program that might be very helpful. Also , Emory’s big enough that there must be other Type 1s around – maybe you can ask her doc’s office if there’s a support group at the school? You might also want to find a support group for parents of T1s. You’re in a tough position too.

Good luck!
Serena

8

I feel very happy that your daughter has a dad like you. I remember exactly what it was like to be 18 and as an 18 year old, I would be scared and need a family member to help me through it until I felt like I could do it on my own. I couldn’t imagine taking a full course load and managing diabetes. I like the suggestion of lightening the load for at least the first half of the year. My hospital in Canada told us to fit Diabetes into our life and not let life “be” diabetes.

My son was diagnosed Oct 14/2009 at age 3. He cannot feel when he is going low. I try not to worry while he is at playschool and I will try not to worry next year when he goes into Kindergarten. I have learned that you need to build a team around the person who has Type I. Your daughter’s friends need to be on the team.

No matter what, health comes first. Do whatever is physically and emotionally healthier for the both of you. If you want to take time off to help your daughter and she needs it then do that. Be prepared if she does not want you to go out of your way to help her. Some teenage daughters can feel guilty that they are putting you out but they secretly want you to insist. If she is capable of having your support long distance, then great, know that the learning curve is steep for 3 months and then you become so much more of a pro. I recommend the book “think like a pancreas”.

My heart goes out to you both. I am 3 weeks into the brand new learning curve of the insulin pump. Feels like initial diagnosis all over again but the freedom feels like… next to a cure.

I had my share of sobbing… that hit me later when things calmed down a bit. Tudiabetes is full of people who are going or went through what you are. Keep connected with us and encourage your daughter to join because talking about it is very healing and informative as well. I wish you both well in the weeks, months ahead and I am confident you will do great.

9

Diagnosis is a hard time for everyone in a family. We have been through it twice and it was still a shock the second time around. One thing that helps is community. You are here and that this a great step to finding shoulders to lean on. Those shoulders matter. They matter just as much for family as for the person with diabetes.

The learning process certainly feels overwhelming. There certainly are steps to take and things to learn. It is something families can and do get through. A little help makes it all that much easier. I feel that there area a lot of the learning isn’t in the mechanics of the actual diabetes. It falls into the emotional part of the condition. You spoke of the fear of slipping into a low and interestingly you seem to know there is a difference between rational fears of a low and irrational fears. That is a huge and real distinction that at first make absolutely no difference in how you feel.

I know what it is like to feel those fears.

This is a good place. The diabetes online community is strong and empathetic. I know you will find families that can share strength. In addition to TuDiabetes there are a number of great resources. One is a very active weekly twitter chat for folks living with diabetes, Wednesday at 9:00 eastern time. I am not the most competent twitter user but I get by and have a great time connecting. I almost always come away with some new insight and make new friends weekly. If you are not a regular twitter users here is a little primer on how that weekly conversation works:
http://www.ydmv.net/2010/07/im-twit.html

Bennet aka BadShoe on Twitter

10

Rob - what a tremendously difficult position you are in. My daughter was younger when she was diagnosed (11) and I don’t know if there is a difference between that age and 18 interms of how their bodies respond to the first few months. All of your uncertainity is valid. Do you guys have a good diabetic educator that can work with her daily? What do her care providers say? Does she have and endocrinologist they recommend?

Your fear of her going low in the middle of the night is not irrational and given that she’s newly diagnosed she may not feel the signs. If she is sleeping alone she should go to bed with juice (a box or can) and a phone by her bed. My daughter sleeps with these next to her bed every night.

My first inclination is to say go be with her, or have her come home. However, you say she’s capable and deals with things responsibly so that decision has to come from the two of you.

I hope you get some answers and some peace in your unrest. This is a tough time. The two of you will come through it and look back and be amazed at what you did to learn/adapt and adjust in a relatively short amount of time.

Good luck.

11

I’d like to commend you on both your composure and your resources. Here is a great place to start and as Bennet said, there is tremendous support online and the Wednesday night chat is a fabulous suggestion for both you and your daughter to check into if you are able.

My son was 3 when diagnosed and I remember the only thing that helped me keep any kind of perspective was hearing the stories of people who were living successful, enriching lives with diabetes. At the time, I hadn’t found the diabetes online community, so the stories were few, but I held on to them like they were the most precious treasures.

I’ve since seen that those success stories are countless. It is indeed completely overwhelming in the beginning. I would take things one day at a time right now and keep the communication between you and your daughter and her medical advisors open and continuous.

Lorraine aka @Colcalli

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Rob,

I am so sorry that this has occurred just as your daughter has gone off to college. Such a big step in of itself without Type 1 Diabetes. My son was diagnosed at this time last year right before his 16th birthday. We felt we had to delay his driving until he felt better and was more under control. He was so upset at the time but now that he is more comfortable with T1 and on the Omnipod pump he is making up for lost time!

I wanted to make sure that you were aware of the new Clinical Trials available to newly diagnosed Type 1 patients. You and your daughter may want to consider this but it would probably require her coming home and scaling back on college. We enrolled my son last Fall and are lucky to know that he received the drug due to his side effects. (All of these trials are placebo controlled at this point). Even though it was very time consuming and caused him to miss 22 days of school, we felt that it was worth it for his longterm health. We hope the drug he received will help him to stay in his “honeymoon” period by saving some of his islet cells that had not yet been destroyed.

Tolerx, Inc just announced at the end of June 2010 that they are enrolling an additional 400 people to a new Phase III Confirmatory Trial in addition to the 240 enrolled in the current Phase III Defend Trial. You must be recently diagnosed within 90 days because the drug helps the immune system fight off the attack on the beta cells.

Maintenance of beta cell function has been associated with improved glycemic control (HbA1c levels), fewer hypoglycemic events, fewer hyperglycemic excursions, and a reduction in long-term disease complications in established type 1 diabetes patients, as referenced in the Diabetes Control and Complications Trial (DCCT). The DCCT Trial seemed to show that long term diabetes patients with the least complications were still making some of their own insulin which appears to be protective.

My son is in a similar study, Protege Phase III, using a similar drug and protocol if anyone has questions or is considering this.

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Hi Again Rob

If you don’t mind I share a link to a post I wrote for folks new to insulin and one of diabetes mind games. Diabetes plays with our heads a lot. Mostly with our sense being masters of our universes. Insulin needs can vary, particularly at first. This feeds into the uncertainty. Anyway for what it is worth here ya go:

http://www.ydmv.net/2008/01/newbie-advice-i-insulin-resistance.html

14

Rob
Can I forward you email address to Laurie Davis?

thank you,
Lori Ann

15

Have a good heart-to-heart, putting the options out there and listen to her responses. Your daughter will make the choice that is right for her. Hopefully she can continue with her studies as it will help her emotionally to be able to do so.

My son is 17, he was diagnosed at age 10. This Sep is the first time that he withdrew from participating in something that is very important to him, while he works out how to manage his diabetes. David tried out for and was accepted to play junior B hockey. He has always played competitive hockey and the T1 diagnosis kept him off the ice for a couple of weeks but never held him back. The problem is with the longer game at the junior level his BG’s were spiking too high during the game and then falling too low overnight. He made the decision after a few games to withdraw from the team and go back to midget play which is a shorter game.

We have now booked ourselves for a seminar on sports and diabetes and he will look at some options so that he is comfortable moving back up to the higher level of play next season. I know this is totally different as he is already well versed in his diabetes care and it is only a game, unlike something as important as one’s education. David takes his health very seriously and recognized that pushing himself to do something that was having an adverse effect on his body needs to be re-assessed. He needs to develop strategies to safely play the longer game. This might be as simple as adjusting to wearing his pump that he was always able to remove during play in the past.

There is a certain element of fear attached to a new diabetes diagnosis and similar fear negotiating changes in one’s diabetes care. Your daughter at this point will know if she thinks she can manage both the new diagnosis and school at this time, or if she needs to step back from school for an adjustment and management period. She is lucky to have your support.

Cheryl

16

Bennet,

Are either of your T1D kids away at college? It’s hard for me to completely relate with my 2nd grader here, but your kids are older, so you would have a better perspective, like many of the others who have responded, about coming home or staying in school.

Lorraine

17

I have a 2nd year student at film and tv school at NYU. (the brains behind theBetesNOW.com) She isn’t D but she has chronic medical needs that are as challenging as T1.

That school in that college is her dream. My roll as her dad is to help her live her dream. A big part is trusting her on her own. We have had frank conversation about her health. Chronic medical conditions make moving out seem harder.

In reality those medical issues are trust catalyst. A catalyst in a chemical reaction makes something happen differently. In this case the medical needs make for more trust faster. We have to learn to trust our kids. As you know with diabetes it is hard for a parent of a second grade child to let a kid go stay overnight at a friends. Those overnights are good for us, we get to practice trust. Adding diabetes to the college away from home changes is a huge additional burden on any family. She need to be trusted.

Rob didn’t get the steps along the way, the sleepovers as it were. Yet he talks about the relationship they have and family support system they have built. I think everything happens for a reason and part of the reason for the phone support from home is for that to be in place now for the diabetes support. My two cents is Rob should return home and teach that support system what it needs to be a diabetes support system. Oh an I hope he has an unlimited cell to cell calling plan.

The first year I I attended Friends For Life (Rob that is an international conferences for families with type 1) I listened a teen from the other side of the world talk about her struggle in father daughter relations about trust and diabetes care at university. Listening to a young woman from the Untied Arab Emirates talk about her family made me think a lot about mine and helped me send a young woman to New York City and trust her to not only take care of her medical needs but pursue her goals.

Nobody ever said parenting is easy. But seeing your child thrive following her dreams is magic.

Here’s to Rob and his daughter seeing the magic beyond the diabetes.

18

Rob, I know how you are feeling. Very, very overwhelmed…I can tell you before you realize it, it will become normal again. I remember sitting down to eat when my son (11 now, was T1 at 10) was still in the hospital and wondering (sadly) how was this ever going to work? But within two months it seemed like the normal thing to do?? Strange how we adjust. I also have another son (non D) in college and how stressful and new that can be. It sounds like she and you will work it out day by day and get through it. I agree with another post to get people on her floor (the RA) to look in on her. Most of all I would want to make sure she feels comfortable in managing it herself. Best of luck and keep us posted.

19

Rob,

It’s Lori Ann again. My son’s college has a Student Services area and he has registered as a student with disabilities. They will notify his teachers, he must discuss it with the teachers too. His Doctor faxed a plan of action and Dylan has been allowed to have snacks in class if needed. This group is also available for counseling, assistance, advice, they will advocate for him if he misses class or assignments due to his diabetes. It seems that they will watch over him too and help him get through his day to day life and give him assistance on how to adjust. Just a thought! I haven’t heard from Laurie Davis yet but I am sure it will be soon.
Take care, Lori Ann

20

Hi Everyone!

I’m sure you all know already, but, these responses have been tremendously helpful to me and allaying some of my fears. The Childrens Hospital of Atlanta and their diabetes educators, doctors, nurses, etc, were amazingly helpful. Sarah (she joined as “Sweeted Fease” as well - one of my many pet nicknames for her!) is in touch with them everyday calling in her blood sugars and asking questions when needed. I’ve even called them a couple of times to ask questions regarding snacks, exercise and other things. I’m definitely comfortable with their resources…

At school, Sarah has registered with the Office of Disability Services (ODS) to which we’ve had her doctor send a letter explaining her disease, her regimen and what they should expect with respect to Sarah’s highs, lows and overall day-to-day management. We’ve met with all of her professors to let them know what’s going on and what Sarah’s going to need moving forward (e.g. eating or drinking in class; possibly rescheduling an exam if sugars are too low or high just prior; sick days may occur; etc.). We’ve also discussed with her roommate, friends, Residential Life Coordinator, RA and other staff on the disease in general as well as to watch for signs of lows, how those should be treated, and, in particular, where her glucagon kits are (one is velcroed to the inside of her dorm door!) and how to use them. We’ve even had her roommate and friends give her a normal insulin shot so that they won’t be scared to “stick” her in the event there’s an emergency and the glucagon is needed.

Her mom put together a binder for her organizing all of her contacts, information, daily logs, exercise info, prescriptions, doctors appointments and several other things. Her mom had drilled “super responsibility” and “super organization” into her from the point that she could walk almost. Over the years I always felt that Sarah needed to be allowed to be more of a kid by her mom, but, now I’m thinking that life (the universe, God, whatever you want to call it) works in such mysterious ways as I’m now “super thankful” that Sarah has those life skills so ingrained into her!

Sarah’s attending the Oxford College at Emory which is some 30 miles from the main campus out in the stix of Georgia, so-to-speak. Her doctors are at the main Emory campus at the Children’s Hospital of Atlanta, so, a ways away. Her primary care physician is about 8 miles away. Pharmacies, grocery stores, Walmart, etc, are all more than walking distance. She’s a bit isolated on that campus, so, we got her a car as well so she can run to wherever she needs at a moments notice if she runs out of supplies or whatever.

Her mom and I are still working with doctors, insurance, ODS, and others with all the administrivia associated with handling this disease and ongoing management. Eventually she’ll need to take over those responsibilities, but, for now, the more we can take off from her plate the better, I think.

So, all-in-all, I think she’s pretty well set from an organizational and resource standpoint. It’s the emotional side of things that will have to play themselves out. I arrived back home in California last evening and she was definitely very sad. She texted me her 3AM (she doesn’t go to bed til like midnight most of the time) BG and texted me when she awoke in the morning. We’ve texted back-n-forth a few times and I just spoke to her at her lunch time. She’s moving forward and I’m hopeful it’ll all work out for her to not have to put her life on hold because of this BS disease. But, if she ends up saying that she just can’t do it all right now, then I’ll go bring her home. I’m hopeful that other kids that have endured these experiences can connect with her and share their trials, tribulations, successes, joys, etc.

For those of you that have children of teenage, college or post-college years that would like to friend her on Facebook as well as on here (again she’s “Sweeted Fease”) her FB page is: http://www.facebook.com/home.php?#!/profile.php?id=1336033892

If there is anything I’m missing or other suggestions to help her cope and get through all of this, then by all means feel free. I appreciate every word!!

-Rob.