Parents with T1 diabetics-college close or far?

Parents Forum
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<p>sbjdorlo,</p>

<p>It’s a good idea to know where your youngest stands as there are many treatments/clinical trials that are available now, as I understand it, that can potentially PREVENT the diabetes from ever taking hold. Getting him in for testing now could allow him to avoid getting T1 in the first place. </p>

<p>My older sister had T1 as well and in her case, it did stemmed from a previous illness. Having been diagnosed in the early 70s though, her options for care were limited. She was what was known as a “brittle” diabetic; she passed away several years ago after undergoing a kidney transplant and a leg amputation in previous years. Apparently, as diabetics get older, their ability to recognize lows can diminish considerably. I’ve known two older T1s that this has happened to, my sister being one.</p>

<p>On the bright side, my son has witnessed the ravages of the disease firsthand with his aunt and has every reason and motivation to try and avoid the same fate. (She didn’t take very good care of herself for many years.) So far, so good.</p>

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<p>One other reason we were hesitant to get him tested to see if he has the antibodies is due to the fact that my 14 year old did not test positive for the antibodies of T1. :frowning: There is a small percent (I think our endo said 10%?) of T1s that don’t test for the antibodies; I am positive he has antibodies but they only test for 4 of them.</p>

<p>After he was diagnosed, we tried to get him into a trial up in San Francisco. He flew there, went through some testing, but was ultimately rejected from the trial because, just as when he was first diagnosed, he did not have the antibodies.</p>

<p>Dh reminded me of this tonight as I’d quite forgotten our initial reason for not having our youngest screened.</p>

<p>I’m really sorry to hear about your older sister. It seems that there is a hereditary factor in some families. I’m glad to hear your son is doing well!</p>

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<p>I don’t have a child with diabetes, but one of my kids did develop a chronic auto-immune disease while in college 3,000 miles away. She has elected to always have a release on file with her specialists that allows them to talk to me. She and I have an understanding that I would only do so at her request (and I have done so when there were issues like authorization issues on medication where she had limited phone availability and needed someone to help sort out an insurance nightmare) or in an emergency. When she was in college I did have some long-distance conversations with her physician. Anyone can sign a release for family. I’m a psychotherapist and I have releases on file for young adults who want me to communicate with their parents. The young adult just needs to be proactive and ask for it, assuming they want it.</p>

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<p>There is a wonderful site called Children with Diabetes that if you have never visited you should. Within the site are forums by stage. The parents of young adults with diabetes has many helpful parents that offer support - sort of this thread on steroids! I have two schildren with T1- one in college and a 13 year old. Here’s my input on the list of questions:</p>

<p>1) Register with the office of disabilities or not -yes, not because you will get help but there may be a reason that you need to in order to get housing accommodations (ie if you want a double or a single the only way to guarantee that is to have housing accommodations, later you may want to register for accommodations for MCAT, GRE, LSAT, etc) and you will need to document that you have received accommodations)
2) Roommate or not * - I think yes so that someone will recognize that you have not gotten out of bed all day and maybe you are having an issue! Otherwise, if you haven’t been seen all day you might be in the library
3) Own fridge? if it fits
4) Send 4 months of supplies or rely on mail arriving safely or let him deal with CVS (ugh!!) - we started that route but had two issues- too much insulin delivered and it sat around after delivery so we questioned its effectiveness
5) Endo in college town or appointments when he visits home- we are lucky with dr at school, an endo, but if we did not have that I don’t thnk we would do a second endo- so much can be handled via Internet, and you can do an A1c at home these days. They are home quite a bit n the beginning
6) Tour the local hospital/clinic etc- we scheduled an appt with the doctor at SHS during new student orientation, and there he signed firms allowing the dr to speak with us if needed
7) Physician in college town or not (a sinus infection causes him to run really high) - no, use the school.
8) Send medication for vomiting, diarrhea etc. - NO!!! If your student is doing this they need to see a doctor- they should not self medicate- let the doctor dispense these meds
9) Daily texts or daily worry</p>

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<p>Oh, do not ask for daily texts. You child is an adult when they go to college. Instead, stalk their facebook! And send them innocuous texts like “how’s the weather today?”, and terrific care packages that make them call you! But don’t let your refusal to let go add yet another burden to their already busy lives!</p>

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<p>My oldest has asthma and a host of other, less immediately dangerous medical conditions. I would’ve been happier if she’d gone to school closer to home, but she was determined to go to one about three and a half hours away. She had friends/classmates who agreed to look in on her if she missed a class, and was good with self-care.</p>

<p>As it turns out, she only had one asthma attack that required hospitalization during her four years at school. The attack started in class, and the prof sent someone to her dorm to get her nebulizer when the emergency inhaler failed to help. A friend offered to drive her ten miles to the hospital, but the prof wisely got her to the clinic and an ambulance was called, so everyone handled it well.</p>

<p>Now she lives 1000 miles away but she has a fiancee to look after her.</p>

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<p>I don’t have a child with T1 diabetes, so I have no specific information. This is just a general comment, from a mother of a child with different problems.</p>

<p>Your child is your child. He or she might not be as mature and ready for self-care as other diabetic kids, or he/she might be way more ready. But I urge you to evaluate your child, and not defer to other people’s experience with other, different children. If your child really isn’t ready to take control of his or her diabetes, and if you really are still doing a lot of the monitoring that needs to be done, don’t send them far away to school and hope for miracles, even if someone else’s diabetic child went clear across the country and was fine.</p>

<p>There’s a lot of pressure on parents of high school seniors, to send their kids out into the big world. Your son is an adult now, and should be able to take care of himself, people say. Maybe he should, but if he can’t, saying “he should” is useless. Evaluate the actual kid on the couch, not some hypothetical kid you don’t have, not the wonderful perfect kid of some other CC poster.</p>

<p>And good luck to the parents of all the high school seniors with T1 diabetes. I hope all of you have great kids who are totally ready to be on their own.</p>

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<p>If your 18 year old isn’t managing their diabetes, and has to count on mommy and daddy that’s not good nor is it smart. This is one of those things that cannot wait. If they are not handling it that age it’s laziness, fear, or too much parental control. This isn’t like not wanting to learn to drive or get a license till later. This is about life or death. They must be pushed because mom cannot nor should she be managing an adults meds. Its ot optional like doing their own laundry. This is their life, like looking ehe they cross the street, or buckling a seat belt. I guess I am old school and think at 18 you should be in charge of your body.</p>

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<p>This comes off too harsh, I think. I agree that high school kids should be managing their diabetes on their own, and shouldn’t depend on their parents. But I also have great sympathy for kids who are overwhelmed by all that this disease entails and are just plain sick of it.</p>

<p>My son had great control until about 2 years ago, when he went into a downward slide. I don’t really know what caused it, but I think he was just tired of dealing with it. His A1Cs slowly climbed upwards, from the low 6.0’s to the low 8.0’s. Then he went for a full year (he didn’t come home for any breaks during his senior year of college) without having an A1C.</p>

<p>He seems to be back on track now; he moved to a new city to start grad school, and after much much prodding on my part he finally established with a new endo, got an A1C, and is about to get his next one (4 months later). I’ll wait awhile before asking for the results, and am hopeful he’ll share with me.</p>

<p>Our family knows several kids who have died because they had bad control, and it’s a hopeless feeling for a parent to come to terms with: that their son/daughter has to take control of their disease and is ultimately responsible for the outcome.</p>

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<p>I think it’s harsh, too. Diabetes is really difficult to manage EVEN IF you’re diligent and smart.</p>

<p>I have Type 1.5 Diabetes (or LADA or whatever the name-of-the-month is right now). Whatever you call it, I am thin, very active, and completely insulin-dependent. I count every carb and basically do everything you’re supposed to do. And yet, I still have those days where my blood sugar is crazy high (and days where it’s crazy low). </p>

<p>Seriously, I can eat the exact same meal two days in a row and have wildly different blood glucose levels each time. Before I had diabetes, I just assumed that “oh yeah, you count your carbs and calculate how much insulin you need to cover it, and you avoid the really bad food, and it’s easy.” It’s not easy. Sometimes stress makes your levels go crazy (and what college kid doesn’t have stress.) Sometimes it’s even hormonal - menstruation can be a game-changer.</p>

<p>Good luck to all you parents of T1’s! My OWN diabetes is so infuriating sometimes, I can’t imagine working with someone else’s…</p>

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<p>Another thing to check is the level of emergency services available in the town or city where the college is located. With only a few exceptions (Wisconsin, for one), EMT’s are not allowed to do glucagon, and can really only offer transport (they will rub a glucose gel around the gums, but that is tricky if someone is unconscious or seizing from a low.) The delay involved in EMT’s transporting w/out glucagon or IV treatment is pretty scary.</p>

<p>Paramedics (Advanced Life Support or ALS) can do IV’s to raise blood sugar almost instantly.</p>

<p>If only EMT’s are available or the presence of ALS is not reliable, then having someone who can administer glucagon becomes really essential: friend, RA, whomever,</p>

<p>Type 1 is an autoimmune disorder. My daughter had coxsackie virus a few months before the onset of symptoms. We were told that “molecular mimicry” was the mechanism, meaning the body’s response to the virus made a mistake, so to speak, and attacked the beta cells. She has several other autoimmune conditions, which actually make us sometimes feel “if only she had only type 1.” Sorry others are dealing with multiple issues too.</p>

<p>Cardinal Fang is right. And the original poster has a 14 year old, so who knows where his level of responsibility will be in 4 years, or where he will want to go to school.</p>

<p>Seahorsesrock, you may not understand the complexity of caring for this disease. Diabetes magazines have 10 page articles on strategies for handling insulin and snacks for a bike ride or a hike. Honest. And who is a student going to chat with about this? As it happens, my daughter, who has had type 1 since 4 and went through a childhood with school nurse hovering, is extremely independent and mature. She does not often tell me her blood sugars. However, if she is tired and afraid that the 1am alarm will not wake her, then she does ask me to get up and call her. And if she is sick, or exercising, we do talk about approaches she might take, but of course she takes the lead.</p>

<p>Type 1 diabetes is like a language unto itself, and few have learned it. Would you really make independence an absolute priority if your child could die overnight? Lighten up and try to learn something here.</p>

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<p>way way too harsh and old-fashioned a view. One thing we learned at diabetes camp is that diabetes is a family disease - i.e., the family has to work together. I tested my kid every night at about 2 am until he graduated from high school; I counted every carb, weighed everything he ate; I kept track of numbers nightly, etc. But now, he is handling everything on his own (except ordering glucose tabs). With support, kids can adapt to handling things independently more successfully than if thrown into the water to see if they can swim.<br>
There is no way to prevent type-1 diabetes at this point; the trials are just that; many merely aim to extend the honeymoon. But these trials also involve taking experimental drugs that have side effects. Also, is there any evidence that putting a kid on a gluten-free diet would have any effect on preventing diabetes? if not, why make the kid have such a restricted diet?</p>

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<p>Compmom - thanks for the great suggestions - many issues I had not thought of. </p>

<p>My son is 17 and manages his day to day care by himself. I do check him in the night if he is ill. While he is very competent, this is a complicated disease and I think he needs some support structure to rely on should he need it. </p>

<p>Just talking through the action plan for emergencies while away at school takes some stress of both he and I in terms of “what if”…</p>

<p>Having just endured our first visit to the emergency room with a stomach virus, I strongly recommend that everyone have a filled prescription of anti-vomit and anti-diarrhea medicine on hand. While I agree that in most cases leaving the dispensing of medication to the professionals is advised, when a T1D has a stomach virus things can rapidly change - long before there is time to visit the clinic and fill a prescription. </p>

<p>Thanks everyone for the great suggestions - really appreciate it.</p>

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<p>Still reading and really appreciating the compassionate answers. For those of us with T1 kids with other issues, it can feel like they will never be independent. </p>

<p>Thank-you, Cardinal Fang. And thanks, mamenyu, for pointing out it’s a family disease, especially since my son is still 14. His doctors and nurses aren’t expecting him to do everything himself. We do know kids who do much more care and some who do less care. </p>

<p>You’re right; it’s very dependent on the child.</p>

<p>My oldest will be most likely going off to college 3000 miles away and I don’t have the same concerns. I have concerns, for sure, but nothing like this. He doesn’t have T1 and he doesn’t have the other special needs.</p>

<p>We are moving forward and I do get excited for my son as I see him becoming more independent. </p>

<p>You know how it goes-those weeks and days where their BG numbers are great are like a vacation! :slight_smile: And then those days, as scout pointed out, where you do everything right and the numbers are still whacked out, well, we have learned not to panic (ok, I did panic the time I had to give glucacon, I’m sorry to say).</p>

<p>Great, great list of tips, all. Many, many thanks!</p>

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<p>I do understand, believe me. Its just it’s not an option to be lasidasical about it. There are other things that young adults can be less diligent about, sadly this isn’t one of them. Think of itnthis way. If your were hit by a car, whonwould be thereto make sure your adult offspring, not child, but adults would take care of themselves. Would your adult be able to do what is absolutely necessary to do. Maybe I’m sound harsh, but this is life and death. Period.</p>

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<p>My son’s roommate was diagnosed with t1 diabetes over winter break, and took off this quarter and will be returning after spring break. (This is a school on the quarter system.) I didn’t realize it was so complicated – this gives me greater appreciation of the situation that I will pass on to S. S and roommate weren’t necessarily close friends, but were amiable and cordial. From a roommate perspective, what should S know or be prepared to do?</p>

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<p>Type 1 diabetes may be the most misunderstood disease on the planet. It is extremely complicated to manage, balancing factors of insulin, carbs, exercise, illness, stress in ways that for many are not really amenable to standardization. Some people have huge problems with regulating blood sugars despite hours of hard work each day. Dangers lie both with high blood sugars (can cause coma in short term, many complications over the long term) and with low blood sugars (unconsciousness, seizure, brain damage, even death). Most deal with the latter danger most often, though running high takes its toll over the years. There is therefore a narrow range that is both healthy (not high) and safe (not low).</p>

<p>That said, most type 1’s pride themselves on living as normal a life as possible and in my experience are singularly lacking in complaining. Many of us have kids who are doing wonderfully. For those diagnosed early, it is just a normal way of life, and they convey that sense of normalcy to others.</p>

<p>If your son has a roommate with type 1 that is recently diagnosed, it helps to ask questions. Let the roommate take the lead in what he might want your son to do. But he should be aware of the possibility of an extreme low, which might cause slurring, staggering, or unconsciousness. This is quickly cured, as long as the low is noticed by someone else. It may be that the student does not want to have the roommate trained in glucagon, which can restore blood sugars in10 minutes or so (it is an injection) so your son should call 911 if a bad low happens.</p>

<p>Some people are private about all this. Sometimes the RA gets involved. I’m sure your son will be both tactful and helpful.</p>

<p>Noone should regard the roommate as somehow fragile or different, but it does help to understand what he is dealing with.</p>

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<p>If you go to the JDRF.ORG website, then go to “Life with diabetes,” then go to “Type 1 diabetes in college,” you’ll find lots of information. That’s where my son got a letter he could give to his roommate (I have no idea if he actually did, however).</p>

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I’m resurrecting this old thread; I hope that’s ok.

I would love to hear any updates from parents with diabetics and how they are doing today.

We are now at the point on the other side of college admissions, and my son will need to make a choice on college by May 1st.

He pretty much manages his diabetes independently, has gone on two college visits by himself, and has done reasonably well managing his diabetes on these trips, though he did go quite high and had to change his plans to visit the college that day because he needed to bring it down (and his energy really lagged).

Based on this experience, I say the biggest issue for my son won’t be managing the diabetes; it will be trying to carry on with life when his energy is zapped due to swings in blood sugar, since he is already a fairly low energy person.

He is likely choosing among three So Cal colleges (all within less than two hours), one in our same city, possibly Purdue, and the outlier is University of Pennsylvania, far from home. Penn is the most affordable by far.

Did any of your kids take a gap year? If so, did it help them mature and become more independent managers of their health? Or is mine the only one that’s considering the gap year to mature and become a better manager of his health?
Were any of your kids involved in College Diabetes Network?

Thank you!

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DS is a freshman this year. Although I mentioned taking a gap year as an option, he never considered it. He was ready and willing to take on the challenge and increased responsibility of managing his health (although I am still responsible for ordering medical supplies).

His college is less than an hour away, but he does dorm there. It was the right choice for him - college away from home is conducive to more independence, yet close enough if any serious problems occur (so far there have been none!).

Energy level - that is a tough one - they really need to figure out if pushing through will put their health in jeopardy.

Sorry, no experience with College Diabetes Network.