Guest guest Posted October 31, 2007 Report Share Posted October 31, 2007 My son was diagnosed with Ulcertive Colitis last June. He was 18 years old, and the more research I did on SCD and tried to explain it to him, the more he went into denial and insisted since the doctor said changing his diet would not help the UC, he would not do it. I backed off over the summer and watched him lose more and more weight, and become grumpy and often angry. He is now in his first year in college and on meds, but has never stopped bleeding since June. The doctor has increased the dosage of his meds, put him back on the rectal foam, and indicated he may put my son on steriods if the bleeding doesn't stop. My son does not want the steriods, so he has begun to think about trying the diet. In the meantime, hoping my son would change his mind I have read everything I can about SCD and have been trying recipes. I also have made an appointment with Dr. Hoffman in NYC during Christmas vacation. Dr. Hoffman endorses and perscribes the SCD diet, and will do additional tests, like lgG RAST, for identifing hidden allergies. I'm not sure what other tests he will do. I think he gives vitamin injections. I'm hoping someone may have a similar experience, and can help me with the following: 1. What additional tests should I ask the doctor to do? Yeast, bacteria, lactose? I don't even know if tests are avaliable for these. Or will a doctor who deals with UC patients automatically know what tests to perform? 2. How can he stay on this diet at college? This is my biggest worry, since he must be on the college food plan for freshman and sophomore years. I was thinking of contacting the head of the Dining Department, but not sure if they would be willing to work with SCD. Thank you so much, in advance, for helping. Regards, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 Hi, Sally, You have a tough problem there. I would get a letter from the doctor stating the diagnosis and how imperative it is that your son be on SCD and mentioning that the info source for SCD (unless your doctor has a handout or something) is the book Breaking the Vicious Cycle by Elaine Gottschall and that the instructions in the book must be followed precisely. I would then get a copy of BTVC and highlight the parts that have to do with the diet (what's legal; what's illegal.) Then I would take this to the appropriate person. I do not know whom that would be. I'm thinking one of these: college guidance counselor (to point to to the actual right person), head of food service (but I think that person would need a higher-up to force him/her to do it), someone in the university health service (they would understand it better and might help you through the bureaucracy), university ombudsman. After all of that, I really don't believe that the food service personnel will be about to deal with this. And if they try, are you comfortable that the food they make your son will be uncontaminated with the other foods? These people will not take the care that you would because they have no connection to your son and haven't lived with the issue. Anyway, I still think you have to try to get them to comply so that you can prove that they cannot meet your son's needs. Then you can try to 1) have them refund the part of the food service fee your son hasn't used yet, 2) exempt your son from further food service fees, 3) allow your son to use part of their freezer/refrigerator areas to keep his own food. How far away from the college do you live? I'm thinking that you could cook for your son and bring him quantities of fresh and frozen foods to eat for whatever period of time works for you until you can drop off more. I don't think we can expect a young male who isn't even quite behind the diet to cook it all for himself, and he probably doesn't have the facilities in the dormitory anyway. You might end up needing a lawyer. I hope not. If it were me, and they didn't refund my food service fee, I think I would just continue to pay for the food service my son didn't use if the lawyer fee would eat up any savings from not paying the food service fee. mom to -12 SCD 4/23/04 > > My son was diagnosed with Ulcertive Colitis last June. He was 18 years old, and the > more research I did on SCD and tried to explain it to him, the more he went into denial > and insisted since the doctor said changing his diet would not help the UC, he would not > do it. I backed off over the summer and watched him lose more and more weight, and > become grumpy and often angry. > > He is now in his first year in college and on meds, but has never stopped bleeding since > June. The doctor has increased the dosage of his meds, put him back on the rectal foam, > and indicated he may put my son on steriods if the bleeding doesn't stop. My son does > not want the steriods, so he has begun to think about trying the diet. > > In the meantime, hoping my son would change his mind I have read everything I can about > SCD and have been trying recipes. I also have made an appointment with Dr. > Hoffman in NYC during Christmas vacation. Dr. Hoffman endorses and perscribes the SCD > diet, and will do additional tests, like lgG RAST, for identifing hidden allergies. I'm not > sure what other tests he will do. I think he gives vitamin injections. > > I'm hoping someone may have a similar experience, and can help me with the following: > > 1. What additional tests should I ask the doctor to do? Yeast, bacteria, lactose? I don't > even know if tests are avaliable for these. Or will a doctor who deals with UC patients > automatically know what tests to perform? > 2. How can he stay on this diet at college? This is my biggest worry, since he must be on > the college food plan for freshman and sophomore years. I was thinking of contacting the > head of the Dining Department, but not sure if they would be willing to work with SCD. > > Thank you so much, in advance, for helping. > > Regards, > Sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2007 Report Share Posted November 3, 2007 >2. How can he stay on this diet at college? This is my >biggest worry, since he must be on >the college food plan for freshman and sophomore years. I >was thinking of contacting the >head of the Dining Department, but not sure if they would >be willing to work with SCD. >Thank you so much, in advance, for helping. >Regards, >Sally Sally, We had our Dr. write a letter that stated it was medically necessary for our daughter to be on a special diet and so she was given special permission to have a small freezer and a refrigerator in her dorm room. We make all her meals at home and put them in meal size portions and then she puts them in a steamer--or sometimes eats them frozen! We did meet with the head of the Dining Department and he said he was sure he could help us as there were other kids on special diets, but when I explained no sugar he admitted he could not provide SCD meals as practically everything they had--including meat--had sugar in it. Rhonda daughter, UC 6 yrs/SCD 5 yrs Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.