<p>Your son has a great attitude!</p>
<p>whattodo2: your son’s attitude is awesome! My mom has major GI issues and won’t go to the bathroom downstairs in my house; she makes me help her to the 2nd floor (she had a stroke) so she can use the upstairs facilities. Even if I’m the only one home!</p>
<p>I’m not terribly familiar with food and Crohn’s, as my household’s issues are IBS and gluten sensitivity (not Celiac.) But, it can be very tricky to find out what exactly is in the food you’re eating, especially if you’re not cooking it yourself (and even then I am constantly stymied by things that have gluten & other trigger foods in them.) And it’s really hard to maintain a clean diet, especially when you’re busy & stressed never mind when you lose your self control. That’s probably what I’d be most concerned about with him being away from home.</p>
<p>I have a daughter with several serious chronic conditions (will PM you). She goes to a top Ivy and has accommodations that help her a great deal. The disabilities office, dean, team of doctors (primary and specialists) at the health services, dietician and dining services have all been involved in helping her continue school.</p>
<p>She has had two medical leaves, including one semester that she finished 2/3 of the way through and then lost all the work, and one semester when she left before it started, which was, of course much better. Tuition insurance helped with the former. It is hard for her to see friends graduate while she still has 1 1/2 years left, but that is just the nature of the thing, and she knows it, and moves on.</p>
<p>The intimidating administrative group that makes a lot of decisions at this school, has recently okayed her for reduced courseload, including financial aid for any extra time it may take to graduate. This didn’t happen at first, but as the years have gone by, they have gotten to know her fortitude and hard work, and also her challenges, and the school actually suggested 3 courses without her having to advocate for herself at all.</p>
<p>First, I think your son should still go for the internship. Prednisone may get him back in shape for a bit, and it will help with the emotional side of the new diagnosis to continue his life, especially working with a professor who knows and seems to understand.</p>
<p>However, I would visit a lot, or even consider staying there for a few weeks, if he is not yet up to it. I don’t know if there are siblings, or what your finances are like, but I think one option is for him to go, and you too (until you feel okay about it, and that might mean only a week or two, leaving not that much time left for him to be on his own). If you were around, you could also help him get established with shopping, cooking, and see what food is available at the college. If he won’t tolerate you being in an apartment with him, perhaps there is a place you could stay short-term (again, depending on finances). Or can you visit every 10 days or so from where you live?</p>
<p>For the fall, or any later semester, it is necessary- absolutely - to meet with disability services. Write a list of accommodations, include in a letter that you can ask the doctor to sign (write them yourself, getting info from a Crohn’s organization or online). The disabilities office will then give your son a letter for each professor, that he can give while explaining as much or as little as he likes. Examples would be excused absences, extended time on assignments, individual examinations with breaks, single room, reduced courseload, help with diet/dining hall (they will buy or cook special foods for anyone w/ a need). These would cover ADHD as well.</p>
<p>I would also suggest he meet with a dean or other administrator, and perhaps any medical people who might be involved. You could go to, or he could do this himself. And have him sign releases or they won’t be able to call you if he is in the hospital!</p>
<p>The hardest part for you is that he is not close to home (my daughter is an hour away). I get the feeling medical services are not great (my daughter has a fully functioning health center associated with the university, with all specialties and excellent primary care, and excellent communication among medical staff).</p>
<p>I think having a specialist who focuses on Crohn’s, who could perhaps work with more local primary care (or GI, but, as you said, ego can be a problem) would be really essential. That specialist could also help with decisions such as the ones before you, but it will always come down to your son himself: he needs to have control over his life, as long as he is bottom-line safe.</p>
<p>Adressing the ADHD is also a big concern, I am sure. Is he able to take meds? My daughter is disorganized at times, when she is not doing well. She will insist on being independent, but then run out of meds. Be prepared for some of the usual ambivalence about dependence in a new form with higher stakes!</p>
<p>I have had to let my daughter go, and do things that made me worry a lot. She is never, ever truly safe. She has achieved a lot against odds that make her doctors amazed. Your son sounds like a similar personality.</p>
<p>Acceptance of illness will come in time, and sometimes holding on to goals is a sign of not accepting yet, but sometimes it is part of the ongoing challenge of figuring out what exactly you can do, and what adjustments you need to make. So even if going this summer is a mistake in some way, it will help him grow into his situation more than staying at home, perhaps. Again, as long as he is safe! And if you can visit a lot- that is my caveat.</p>
<p>It’s only been 4 days. You have some time to make decisions. If the meds help, he can do the internship, come home for a month, go back with disability office interventions. A private room (with bathroom) might be a big help. Cook and freeze meals in advance. 8lbs is weight loss, but it should be managable (I had lost a LOT more weight before diagnosis). </p>
<p>What does your son want to do? He will live with Crohns. He needs to LIVE with Crohns. There is a difference. If the professor is someone who knows your son, it might be best for him to be in a typical enviroment, moving forward in his life, then at home “sick”. I understand it’s 6 hours away, it there any way you could make one or two round trips…bring prepared, frozen meals, look him in the eye and see how he is doing, run the laundry to reduce work/stress…</p>
<p>Whattodo, I feel that we are living parallel lives. My S is 17 and was diagnosed with Ulcerative Colitis the end of February. When I was about as far out from the diagnosis as you are I started a thread in the Cafe and some of the same helpful folks have written on this thread(If you do a search for Ulcerative Colitis I’m sure you will find it). My S also has ADHD (mild) and while we have had the advantage of more lead time with him at home, which I have considered a blessing, I am feeling a lot of what you are but I am over the shock of the diagnosis. By the way in the time since he has been diagonosed my S has flown accross the country for a weekend and has spent a couple of weeks and weekends several hours from home. He is also quite lean, at his peak weight 5’11" and 140 pounds. He lost 12 pounds while he was ill and has gained back about 7. My other S has no diagnosed GI disease but has been below the weight curve for most of his life so I have taken these statistics lightly. My S has also been very comfortable talking to people about having this and even when touring colleges and meeting other students for the first time he matter of factly told other kids about his limitations with what he could eat.</p>
<p>I known that UC is a different diagnosis than Krohns so in some ways our considerations will be different. Since I am just one step ahead of you I’ll share my experience and you can glean what is applicable. As some other posters have said whether your son goes for the summer or not depends tremendously on how he is feeling at the time and you and he probably need a little more time to sort this out. It is wonderful that he can be frank with the professor and that he is working with someone who is understanding. The most critical thing for me would be that your S can easily pull out for a short time or for the duration if his health warrants it and that you and he can work out the kinks of how he will manage his diet when he is away. For my S the fact that he knows that certain foods have made him feel terrible has made him very conscientous about not straying too far. I can tell you that for us, while it has been with some trepidation I have fought my instincts and allowed my S to do everything that he is able to do, which as I have said has included a ridiculous number of excursions from home for a kid in HS. Since this is a lifetime condition I have tried very hard at this early stage not to let the diagnosis define him to the extent that this is possible.</p>
<p>My S was initially placed on 30 mgs of prednisone (a pretty low starting point) began to wean had a relapse and then was placed on 50 mgs and is still weaning down. The thing about prednisone is that for me it feels like a pact with the devil. My S has felt immediate relief on this medicine but it can have serious effects if taken longterm. My S has been cutting his does by 10mgs every two weeks and each time it is reduced I both rejoice and worry at the same time. For us prednisone is like a holiday. My S even said he felt like he had an iron gut when he was on the high dose. I mention this because your S may actually be feeling better than ever once he is on it for a little while. This may enable him to handle the summer research better than you might expect. The real concern is getting medications regulated which from our experience takes a little while, but life so for for my son is going on as he goes through this process. I don’t know what the norm is for medical care, but my S has only seen the GI doc once since the diagnosis was made following the colonoscopy. His second visit is next week. We visit by phone every 2 weeks and call the doctor’s nurse any time we need to. As far as the weight issue goes for your S, and I am a novice at this myself but I would be more concerned about a large drop in weight than where exactly he falls on a graph. An 8 pound drop doesn’t sound really alarming all things considered, as long as he is putting weight on now that he is being treated.</p>
<p>My S will be leaving again next week for 10 weeks as a counselor at a summer camp that is 3 hours from home. For now we have begun having him make calls to the doctor’s office rather than me making them for him. I don’t know about your S’s medicines but my S has one perscription in which he has to take a total of 8 pills each day. I mention that because it takes no time for the pill bottle to go from looking half full to just one day’s supply left. What I am intending to do is have him keep a 3 day supply in a separate bottle so that when he gets to that one he knows it is time to work on the refill. My S is taking meds throughout the day and as far as I know hasn’t missed any doses but has come close a few times. He has a tiny pill box that fits easily in his pocket so I’m hoping this works for him while he is away. When we visit with the doctor I plan to discuss the possiblity of once/day medication but if that doesn’t work out my fingers are crossed about his remembering. I plan to be sure the nurse at camp knows about his situation but I haven’t yet decided whether to make the call myself or have my son initiate this communication. </p>
<p>Several folks on CC have commented about getting my S signed up with the disabilities office at college when he starts in the fall and we are working on this. My S will be attending a large university but my experience with an LAC leads me to believe that your S’s school may be more helpful in resolving some of your concerns than you may know. My S is not yet signed up with the diabilities office but from my discussion with a counselor by phone I was impressed with their awareness of this condition. We are also speaking with our local doctor about a possible referral to a local doctor near school but have not found one yet. Our doctor felt that most of our communication would be fine by phone with visits when my son is on break, but I am not comfortable with that. I am hoping to meet with a counselor at the disability’s office when my student goes for his new student conference in June. So far I have been told to get a letter describing the disability and accommodations requested. They told me that the school will do their best to make any accommodations the doctor requests but that the specific request wasn’t a requirement. They also told me to be careful to not have the doctor request any accommodations my son didn’t want because it would be difficult not to get it once the doc requested it. </p>
<p>Thus far the things I have considered exploring in the relm of accommodations are:
1-Letting prof’s know that my S has a medical condition that may require him to walk out of class and or miss class. If it seems necessary he may also make a request to record classes.</p>
<p>2-Priority registration particularly avoiding early morning classes. When my S was most ill the worst of it has been during the night or early morning. Fortuanately his first period class senior year was art and not calculus! He missed that class a bunch! </p>
<p>3-My S doesn’t want to request a single so with fingers crossed he will hopefully function well in a suite situation with 4 kids to a bathroom. The dorm also has a restroom on every floor so I expect we will request that his room not be far from that bathroom.</p>
<p>4-My S is entering a program known for stress so we will also discuss steps that may need to be taken if there is a medical need to drop a class.</p>
<p>5-We will also discuss having the opportunity available for testing in the testing center where extra time can be allowed if there is concern that bathroom trips will be needed.</p>
<p>I’ve included that list both to give you ideas and so that others may add to it if there are things I have missed. We have few weeks to figure this out.</p>
<p>One of the best sources of information that I have found was the book “What to Eat with IBD” by Tracie Dalessandro MS RD CDN, who in addition to her credentials also has Krohns. I received very little guidance other than trial and error from our doctor and this book was so valuable in providing guidelines so it didn’t feel like my son was stepping into a minefield every time he added a new food to his diet.</p>
<p>One more thing that I learned from a friend who had a kid taking prednison that the doctor didn’t tell me. Being on steroids can generate a feeling of rage or anger. I was so glad that I was able to warn my son about this because when he went on the higher dose he told me that there were days he was sitting in class that he found himself getting really angry and he was able to tell himself that it was probably because of the medication and never acted inappropriately on the anger. He definitely had moments at home where he was uncharateristically cross and it was helpful for me to know that this was very likely the medicine. </p>
<p>Best of luck, I feel your pain. FWIW the day my S was diagnosed I got on the internet and read everything I could about IBD and really began to fall apart. Then I remembered a friend who has a nephew with Krohns and I called her and was so teary I could barely speak, she shared with me how well her nephew is doing and at that moment that was what I needed to hear. Young people are resilient and when feeling well is on the line they can rise to the challenge. This is what I keep hoping. For now, one day at a time. All the best to you and your son.</p>
<p>My D is now 24, started with a diagnosis of UC at 14, hated the meds. Adult doc decided it was more IBS and she liked meds more but still had issues. She traveled abroad with teen trips twice, college groups twice, and a graduate program abroad. Has she always been fine, no, she’s had issues, had medicine, sometimes missed stuff but lived. New doc inNYC tested her again since she’s had problems and is again diagnosed UC and Crohn’s. I wish that it wasn’t so but hoping this will control issues.
She went to a little LAC in a rural area with no ‘real’ doctors. Medical issues aren’t fun but you do learn to live with it. I know in our town, there are meal delivery services. Maybe that’s an option since that’s a big concern. I would trust his desires and know he can always come home but if he stays home and feels fine, he may regret it</p>
<p>
</p>
<p>I love this and I really wish I’d seen this six years ago.</p>
<p>Spectrum2, thank you for sharing. I appreciate your insights and suggestions. Our sons definitely have some similarities but also some differences.</p>
<p>My son’s ADHD is severe. He had accommodations for that at school this year and still felt very stressed with work. I plan to call his college and find out about what accommodations they can offer for Crohn’s. He took 2 medical incompletes and the college only allows 3 weeks to finish. If he can’t finish the work, the credits are lost. So in addition to feeling sick and dealing with this diagnosis, he is also trying to finish the classes. </p>
<p>My son’s current weight is 121 and 5’11 1/2. Yikes! I can’t wait until he gains some. There seems to be conflicting ideas about what to eat for Crohn’s. I don’t know if it’s more clear-cut for UC. I will definitely check out the book you recommended. </p>
<p>I get the impression the Crohn’s is more unpredictable than UC and more likely to need emergency attention. In any case, having a good doctor in the college town or city seems essential. College health services can’t be relied on. My son said CHS was “useless” and he would never go back. It’s possible that your son won’t need a doctor at college but I’d definitely suggest that you find one and that you and your son go to an apt with him/her one time before school starts. If your son gets sick, the doctor will already know the situation and will be able to jump in and care for your son.</p>
<p>My son is also in a difficult major. Meditation and mindfulness can definitely help for stress and ADHD. I am encouraging my son to try these techniques.</p>
<p>I hope your son has a wonderful and healthy freshman year!</p>
<p>Each person has a specific, individual reaction to foods. Things that would trigger an immediate negative reaction for me might be something that is a “go to” food for someone else. In my case, low fat, moderate fiber diet, learn to manage stress,and don’t drink milk were key components to getting back on track. Oh, and I don’t eat salad. Not for anything will I eat lettuce with or without dressing. </p>
<p>Trial and error work. I think the book is a great idea…wish I had known about it. I’m 25+ years down this road, I did it hit or miss.</p>
<p>While he is finishing those incompletes, can you help manage “everything else”. Deal with food trials, manage phone calls, etc. The idea is to strip out all time consuming tasks that are not related to those incompletes. Let him focus on school and getting well. Do not treat him like a sick person, just take on the admin stuff so he can focus.
Really, I’ve spoken with a lot of IBS patients over the years. What you do now can make the difference in how he sees himself in the future. Is a guy who happens to have a medical condition that can be managed or a seriously ill person with many special needs? There is a difference. LIVE with Crohns.</p>
<p>(I don’t mean to nag, but I speak from experience. There is a difference.)</p>
<p>I’m interested in why there is no discussion above about Remicade or equivalent. Do you consider it too risky? Has it not been offered?</p>
<p>Wellspring: Nothing has been offered except prednisone at this point; we meet with the gi doc again tomorrow. What is your experience with Remicade? Feel free to pm me if you like.</p>
<p>Mom2Mom: Yes attitude is extremely important.</p>
<p>I don’t know about finances in your family, but there are on-line, as well as in-person, coaches who could help with both ADHD and managing the Crohn’s. I found an online coach (for another daughter) who works at Landmark, who charges $100/hour, which is less expensive than most. (However, we could not afford it anyway.) Some colleges provide this kind of support (we made an arrangement with a freshman advisor to help with time management and writing, at a very small rural LAC).</p>
<p>I was thinking about your situation this morning, and want to add that my daughter w/health conditions has actually missed an opportunity to do a program in Bali one summer, a selective summer arts program in another part of the country, and many travel opportunities with friends. So I don’t mean to have suggested that you can “LIVE with” in the sense of never missing out. But you get so you maximize every opportunity for normalcy during times when that is possible. </p>
<p>If this is not the time to maximize, but a time to prepare and consolidate, I don’t want to seem to be trying to sway anyone toward something that is unhealthy. But overall, making opportunities happen regardless of medical issues is a healthy way to go.</p>
<p>You do end up doing a lot of stuff when you are feeling badly in ways that would make most people take to bed, but you cannot spend your life in bed. And there are good times too.</p>
<p>The daughter w/health conditions went on steroids(not for GI) yesterday and is a different person today. Wham. Amazing every time. Another daughter w/ADHD was on the phone at 1 am last night. She cannot take meds and we cannot afford the tutor, so I do it. Extra time on assignments has saved her, and she has amazed me with the work she has produced in an environment that understands she has a right to do her best work.</p>
<p>Lots of hope with lots of struggle: one foot in front of the other every day, then looking back and seeing progress. Good luck!</p>
<p>You have been given a lot of good advice, so I’m not going to repeat it here. Just wanted to chime in on the Remicade issue. My son was diagnosed with Crohn’s when he was 11 (he’s now almost 18). He tried a lot of different medications for years, and nothing helped until he was put on Remicade. The Remicade put him into remission and was amazing. However, he switched to Humira when he got to high school, because he didn’t want to have to keep missing school to get the Remicade infusions at the hospital. Humira is an injection he gives himself every two weeks. This might be more convenient for your son - something to think about.</p>
<p>Also, depending on your insurance coverage, Remicade can be extremely expensive. If you do decide to go that route, look into a program called Remistart (I’m assuming the company still does this). It will cover part of the cost of each infusion, and was very easy to sign up for. </p>
<p>Feel free to contact me. I’ve been dealing with this disease for a long time and my son was on most of the medications available. Another good resource is a website for parents of children with IBD which is [DragonPack.Com®</a> IBD Parents Support Message Board](<a href=“http://dragonpack.com/ibdsupport/parents/]DragonPack.Com®”>http://dragonpack.com/ibdsupport/parents/)</p>
<p>Best of luck to you and your son.</p>
<p>Our experience with Remicade has been miraculous. Before the Remicade nothing worked. Prednisone kept him under control, sort of, but the side effects were unbelievable. He looked like a kid on massive doses of prednisone-- huge cheeks, big belly. And he was beginning to get bone density loss. We tried all of the other drugs, alone or in combination, but there was little effect on his disease. He had two bowel resections when he was 14 (active disease on top of scar tissue caused strictures in his small intestines.) He was running out of small intestine and we were running out of options when they suggested Remicade. Since he started he has tripled his weight. He is in complete remission and can (and does) eat anything he wants. The one day out of school every two months for the infusion is a small price to pay. It is expensive but we are fortunate to have insurance that covers it. The infusion takes about three hours at the hospital from start to finish and involves no discomfort either during or after (unless you count the IV needle.) </p>
<p>We live about 15 minutes from a major children’s hospital and it may be that we were offered newer or more aggressive treatment than might be the case in a more rural environment.</p>
<p>It is possible the Dr is waiting to see the response from prednisone. It’s only been about 5 days since diagnosis. I’m sure it feels like a lifetime, but 5 days is not that long. </p>
<p>How’s he feeling?</p>
<p>For a while I went to a lot of the workshops that ccfa put on where they brought in top medical experts to present on issues like current treatments, etc. If you can get to those or get the CDs, they are very worthwhile. One thing I remember hearing a few years back is that for many years treatment went from milder to stronger drugs on the pyramid of drugs. At the bottom of the pyramid are things like 5 ASAs, then antibiotics, budesonide (a safer kind of steroid because it’s more targeted to the GI) and then drugs that suppress the immune system like 6 MP and then the biologics like Remicade, Humira and others. In the past you went from the bottom up. But there is some current thinking that starting at the top aggressively may be more effective. Whether this is happening in most doctor offices is not something I know – I imagine insurance companies will not pay for Remicade until cheaper drugs have failed. And most patients are reluctant to start with the strongest thing first because then you’ve reduced the chances of lesser drugs working. You’d have to do some homework on this whole issue. All of that said, when my daughter got diagnosed we went up the pyramid which is most probably what still happens almost everywhere for all the reasons I listed and because the studies may not be enough to support another route. 5ASAs failed and strong antibiotics helped with secondary symptoms but did not bring good long-term results. 6MP brought the first significant reduction in symptoms but about two years later it failed and she was on 6 MP, cipro and budesonide and still having a lot of pain. It was time for biologics. She chose Humira over Remicade for the convenience. Humira has a program to defray the cost of copayments. Humira has been a godsend but she still has a couple of bad bouts of pain a month. I hear a lot of real remission stories on Remicade and I don’t know enough people who’ve done Humira. </p>
<p>All of this is to say, don’t wait too long to go up the pyramid. If something isn’t working, demand a change in treatment, especially if it’s one of the lesser drugs. This is not just because time is lost being sick, but because more damage occurs to the GI tract and the strictures, scarring, etc. accumulate.</p>
<p>As mimk6 points out, Remicade is not something that most specialists would traditionally consider recommending until less drastic treatments have proved ineffective. Yes, it helps many people, but not everyone, and because of its immunosuppressive properties, people have developed illnesses such as tuberculosis while taking it, and some have even died. I honestly think that it may not be such a great idea even to suggest it as an imminent possibility to a parent whose child has just been diagnosed. There are many, many options between prednisone and Remicade. Many people with Crohn’s do just fine with the various sulfa-derived medications, especially the ones that have been developed in the last ten years or so. </p>
<p>I speak as someone who is certainly not an expert, but has a lot of personal experience with Crohn’s. I may not have a child with it (thankfully), but I was diagnosed with it* myself, more than 30 years ago, when I was 22 years old and in my third year at Harvard Law School. I was hospitalized with it twice that year, and ended up graduating half a year late. But I’ve managed to practice law for a long time – I won’t pretend that it didn’t negatively affect my career – and become a parent, and do lots of other things, despite having Crohn’s ever since. </p>
<p>Anyway, I’m not sure going off from home so soon after a diagnosis is such a great idea. Yes, prednisone is a miracle drug in many ways (I had a very serious case from the beginning and was extremely ill the first time, but IV prednisone and antibiotics in both arms for several days led to an amazing recovery), but the side effects – especially noticeable ones like the moon face, which I found to be very humiliating when I was young – are not fun, and forgetting to take it can be dangerous, and I think your son really ought to have a good, experienced GI doctor to monitor his progress and try to start reducing the medication as soon as possible. Parental support can be very helpful. I didn’t have that, back when I was 22. Unfortunately, my mother had died two years earlier after we were in a car accident, and my father was never the involved type – he didn’t even come up from NYC to Cambridge to visit me when I was hospitalized, and never even called me the first time I was hospitalized, after I informed him what had happened (he told me afterwards that he assumed I would call him if I were still sick!) – so I was pretty much on my own, and I found it very difficult.</p>
<p>Good luck to your son. Most people do manage to get Crohn’s under control; it’s not a curable illness (unlike ulcerative colitis), but people certainly go into remission for long periods, and can lead “normal” lives in every way. I’d recommend one of the message boards for people with Crohn’s, but I hesitate because it’s really mostly for people who <em>can’t</em> get it under control, and I had to stop reading it myself after a while, because I found it too frightening.</p>
<p>Donna</p>
<ul>
<li> Actually, I was originally diagnosed with ulcerative colitis, since the disease was confined to the colon and rectum, and didn’t spread to the ileum – which is true of about 10% of Crohn’s cases. The medical treatments were similar, so it didn’t really matter so much which one it was. They didn’t know for sure that it was Crohn’s until seven years later, when – after never being able to reduce the prednisone enough to avoid the very unpleasant side effects, without getting horribly sick again, and finding out that I was allergic to all the sulfa-based drugs that were available (I still am, even to the newer ones, unfortunately), and that immunosuppressive treatments caused me to become extremely ill as well – I had my colon surgically removed. I’ve had to have major surgery a couple of times since then, too. I have never tried Remicade – I have concerns with it, and am very wary of how it might affect me. But that’s just me, and my extremely unusual propensity to have horrendous complications and side-effects from all sorts of surgeries and treatments. (As some people here may remember, from a few years ago!) Anyway, I’m doing reasonably well now with a combination of budesonide (a corticosteroid derivative that’s targeted to release in the intestines – or, in my case, at the ileorectal anastamosis, since I have no colon – and has far less systemic effect than prednisone), together with longterm antibiotic therapy, switching between flagyl and cipro periodically. So I hope I’m never faced with Remicade, because for me, it would be a last resort.</li>
</ul>
<p>Whattodo: Don’t get me wrong, I would not ignor the weight loss, I’m just thinking that when on medicine this is likely to take care of itself at least enough to get back to your S’s “normal” weight. My “healthy” S is about 105lbs and 5’10" so I do understand your concern. I have never been able to put weight on that kid. Oddly he got food poisoning at school the same weekend my younger S got sick at home. I was really worried about his lack of reserve. Fortunately while my younger son didn’t get well the older one was fine a few days. My older S functions well as a lightweight so I accept this is his normal. It is definitely important for your S to eat and I’m guessing at that weight he is probably picky and that pickiness is compounded by foods that cause problems. Another great thing in that book were the easy recipes for preparing IBD friendly smoothies which pack in calories and nutrition and lists of “foods that help” and “foods that hurt”. There is no clear cut diet for UC either and our doctor didn’t give us any guidelines other than trial and error in spite of many questions. When my S was set back for several days after just a few pieces of popcorn we knew that trial and error at best would be extremely difficult. I’m interested to hear about what you learn from the dietician. Our Dr’s practice employs a dietician but the doctor didn’t refer us to her. </p>
<p>With regard to the disabilities office and IBD. When I called the school my S will attend they told me that accommodations for testing as would be done for IBD and ADHD are in the same location so these are complementary. On the otherhand it was suggested that he sit in the back of the room near a door for IBD and for the ADHD he has been much more successful sitting in the front of the room. We discussed the possibly of having him arrange to sit in the front but on an aisle. As for the incompletes the office might be able to help with that as well. It sounded like the disabilities office could intervene and allow for modification of standard rules when it is needed for success in the presence of illness, although I love Mom2M’s suggestions to support him to get through his classes. The office also informed me that it would be possible for my son to retain fulltime status but drop credits below 12 per semester if this was necessary for health reasons. As far as remembering to take meds is concerned this is also a worry for us. We are trying to come up with the best routines we can think of but it is difficult to remember medications 4 times/day even without ADHD. Stress management in college, which is an unknown is also a big concern. It is great that your S has some strategies in place already. I’m not sure if you are referring to “mindfulness” as a technique or if by that you just mean recognizing the stress as a method for keeping it under control. For my S it is basketball that has kept him sane.</p>
<p>We are hoping to do as you suggested and visit a doctor near school prior to its beginning. I’m hoping our Doc will refer us to someone when we visit. I’m really trying to figure out how you know you have a doctor with experience in treating IBD. When we first went to our GI doc is was on a referral from our GP and we had no idea that this would be the diagnosis. I’m not altogether comfortable asking him straight out about his experience with IBD but I am wondering since we never really chose him for this problem.</p>
<p>It hasn’t been without several new gray hairs that we have made the decisions to allow our S to take all of the trips he has taken. We made a consious decision to try and prevent him from feeling like a sick kid. I know that he will remember that he got sick his senior year but I am hopeful that his memories of the fun he had will be more vivid. We expect that there will be times that the disease will limit what he does. Each time before he has gone away we explored what the course of action would be if he got sick and had a rescue plan in mind. Only you and he can decide if he is able to be away doing research or at school. For us it has come down to how he is doing at the moment and the back up plan available. We have been trying hard not to interrupt normal life but we know there are circumstances that this may be needed.</p>
<p>PS: Just to clarify from Donna’s comments that we cross posted. I have been told that UC is only curable with a colonectomy. Also thus far for my S the main side effect from prednisone has been acne to the back and chest (easily concealed) and mood issues I previously mentioned. The side effects it will have are no doubt variable to the individual and also based on the dose. I have been told that lean kids are less likely to get puffy so I guess every cloud has a silver lining.</p>
<p>I’m on Remicade for Crohn’s and although I’ve had one flare up which I’m currently dealing with, it has been a life saver. It gave me my life back. The effects of it are immediate and I start to feel better the next day after my infusion</p>
<p>Mom2M- no evidence of any improvement on prednisone. He had sweating, abd discomfort and extreme fatigue after lunch yesterday and today. It’s hard to know what to think.</p>