Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 12 of 12 Posts
G

·
Discussion Starter · #1 ·
Okay I am now a very cranky mother of a newly diaganosed 14 year old who has this "syndrome".
I just found out this past Friday that the high school my son goes to will not let him get any credits for this year as he has missed too much school(4 months).We have been doing the work at home and a tutor finally came for a whole 2 weeks.Big deal. Anyway, all of his work is not acceptable now. He may be able to get half a credit for one class and another credit from correspondence school if they approve of it. In the mean time he is getting really depressed about not seeing his friends nor being in school. We were trying to get him for half days as those seem to work for his pain level. Can't do it till we get approval.Not a good plan for the kid. I am also not happy that his doctor in Boston still has not returned any of my calls yet. I realize that we are not his only patients, but he could at least return my calls to let us know what to do next for this thing. None of the drugs are working yet and he has been on some of them for a few months now. Sorrry so long, but this is really a good place to vent and get support
I just wish the rest of the world was so supportive. Thanks to everyone who has been so helpful in the past!
 

·
Registered
Joined
·
5,427 Posts
Someone wrote to me about the American Dissabilities Act and this disease. You may want to reference this and you son may get some kind of relief for missing so much school and be able to pass.Linda
 
G

·
Discussion Starter · #3 ·
Hi MaineMomI am so sorry you are not getting the guidance and help you need.At our high school, a student with a documented chronic illness can receive special help and consideration through what is known as a 504 Plan. The guidance counselor initiates the process and meets with the parents, teachers and school nurse. We have a student with IBS and anxiety disorder. We have formulated a 504 plan to enable him to perform at the level he is able to, get all his work, and meet the criteria for being promoted. The 504 Plan is tied into the Americans with Disabilities Act, and it ensures that the chronically ill student (who is not a special needs student) received the benefits he is entitled to by law.Check with your guidance counselor or Supervisor of Curriculum and Instruction.Good Luck!wpmom
 

·
Registered
Joined
·
142 Posts
Looks like some folks on the b.b. have good ideas for redeeming his freshman year. This IBS experience is fraught with frustrations especially with doctors and social groups like coworkers, friends, relatives, school people. I found my best help did not come from any high paid, oft consulted MD or DO, but from the bb and from reading the stuff out there from celiac and gastro enterologist sites Eric listed. It maght even help your son to read some of this stuff because it may help him get more comfortable with the requirement of admitting to himself if not out loud to you or anyone else, just what his symptoms are. C or D does not begin to cover the problem. Those are minor compared to the poisoned all over feeling, the nausea and indigestion that make you nearly starve against your wishes. The bloating, gas- belching and flatulance. The stool frequency, hardness, stickiness, looseness, ease in passing or straining. Straining to pass the stools is very hard on the body. It tends to damage other organs and push the stomach up thru the diaphragm into the lung/esophagus area, sometimes requiring surgery that is painful and requires 10 days of painful carrying a blown up balloon in the stomach afterwards. Working on finding the foods he can eat in comfort and that give him energy, strength and health is important and extremely difficult if you just do it as a shot in the dark approach. It took me about 12 years to find out HOW. I kept trying apples, bananas, and cereal after every episode of diarrhea, and I cannot tolerate any of those plants so was perpetually ill. I would think that dairy was the culprit and stop it but be sick all the time anyway. So I would think grains did it, stop them and be sick anyway. Think fruit did it, stop 'em and be sick. Etc etc etc. I finally found out about the real elimination diet. You eliminate every food you are unsure of, keep only a couple you know you can eat. Stop pills likewise. Add one thing back then watch for 72 hours for symptoms. If ya get bad ones, don't try that one again for several months, try another one. Usually they say to only try one new food per week. If the one makes ya sick you will want a few days to recover before you try another.I accidentally found out when I was prepped for colonoscopy/endoscopy that being empty is sick-free too. So now when I get quite sick, I use laxatives to get over it in 12-24 hours instead of staying sick for days. Of course, laxatives leave me weak, but I can start eating right away and recover much more quickly than when I stay sick.It is bad enough to have IBS as an adult. Having it as a teenager sounds more difficult as it is so much more often a significant time for forming strong friendships outside the immediate family, and being house bound and sickly can put quite a dent in one's style. Consequently, my heart goes out to your son even more because of his age, and I truly wish him the speediest discovering of what his intolerances and solutions are. They may be inconveniences to deal with forever after, but knowing what to do to feel well and strong at least gives the option of choosing health and strength on the days that he wants them.Sharing the symptom info on the bb may give you the best ideas for what foods/ drugs/ etc to try or avoid for his problem. And please don't assume that he can eat wheat or soy because he does not show antibodies to them, does not show as sprue. Lots of people are allergic or intolerant to these and other foods even tho the tests don't reveal the problem. It is my uneducated but experienced opinion that the only tests that matter are the ones you/he does to see how he feels after he eats or does not eat /drink/take something. That is what has worked for me. Doctors generally have not been helpful. Htey just offer false hope and take lots of time and money.
 

·
Registered
Joined
·
58 Posts
Hello, Maine Mom,I share your frustrations.
I have a daughter, a sophomore in college who called me from school this past Wednesday to tell me that her IBS was ruling her life and she needed to come home to see the doctor. Fortunately I was aware that the university has an office of disabilities. I made a phone call and found instant compassion, reassurance, and best of all their offer of help.
She did see the doctor who put her on fibercon and bentyl for a two week trial. He is a pediatrician and not familiar with Lotronex. I faxed him some information from this web site and he agreed to prescribe it after two weeks on the bentyl if it failed to help. We faxed a letter from Sara's doctor with a diagnosis, prognosis, and any special accomodations that needed to be made in class to the office of disability concerns and they will notify all of her instructors that she has a disability, without mentioning the nature of it. They will instruct them to allow her to leave the class whenever she needs to and not penalize her as has happened in the past. She will become a client of their office so that if she encounters any problems, she has an immediate advocate. She is very concerned because of many missed classes and she is a rather timid girl. I pray that she actually does visit the office early this week at school. So my message to you, in this very long and drawn out way, is that there is help out there. You just need to find right people. IBS is considered a disability. Good luck in your quest. ------------------Munchkin
 
G

·
Discussion Starter · #6 ·
Dear Maine Mom.My support and prayers for you and your son. I can remember being in the first grade and missing lots of school because I always had tummy aches. I do believe I have always had digestive problems but they didn't show up till I was about 16 and had a bout of hepatitis which, or course, plays havoc on your liver, colon etc. I will ill vomiting for almost 2 months over the summer, jaundice etc. I was in the hospital on a high protein diet and went home. After that, to the best of my recollection, my tummy problems became worse. None of the doctors then believed me, it was all in my head. At age 44 now and I think I found some of the problems. I know for sure that I am lactose intolerant and use dairy only with digestive supplements or use lactase free milk. Just this week after reading so much on the BB I decided to remove wheat from my diet. It's only 2 days but I can't believe the difference. No bloating, gas, running to the bathroom, etc. I really don't want to assume this is all a real cure now but I haven't felt this good in a while. I also had my gallbladder removed two months ago thinking this was part of my problem. I do believe it was some but only a small portion of the problem. My advice, I'm not a doctor, is to try to think back to when this all started - remove lots of foods like the dairy, wheat and other gassy type foods. Stick with some of the more bland type foods for one week and see how this works - did it help or hinder. You didn't say what his symptoms are so it is hard to say what to try at this point. I was ready to join a research clinical study in April for another new drug Locitron (for the C type IBS) but now I think if I continue feeling ok I will wait. I would rather not take drugs but heal it through diet. I also use some herbal rememdies like flaxseed oil, charcoal, calcium citrate and simethicone for the gas. I haven't need any simethicone or charcoal in the last two days. You might also want to read up on the websites under the product listing. They really helped me look futher into my chronic problem of IBS. Keep us posted - I will pray for your son. God Bless.
 
G

·
Discussion Starter · #7 ·
Maine Mom,My thoughts and prayers are with you and your son......------------------LET'S ALL PRAY FOR A CURE TO THIS IBS SOON!BETTIE
 

·
Registered
Joined
·
2,847 Posts
Hi Maine Mom, So sorry to hear about your son's difficulty with IBS and school. May I ask if he was recently on antibiotic therapy? Does he have diarrhea or contstipation? If the doctors have not said anything about diet yet, it would be good to investigate that route. An elimination diet may be necessary. My main trigger I was found sensitive to through food provocative sublingual testing turned out to be citric acid, which is in many fruity beverages, citrus fruits, tomato products, and packaged potatoes. It is used as an additive in many products, so I have to read labels. It is a common IBS irritant, but there are others. Products with vinegar in bother me. I found too many sugars and white flour products are not good for me as well as some dairy products, especially with whey, lactic acid, and possibly cassein? Soy, and too many legumes in general seem to bother me too_Other people seem to have problems with corn or wheat products, carbonated beverages, caffeine, among others.Caltrate Plus/(Calcium Carbonate) may help the D, and a magnesium supplement the C. I use finely ground flaxmeal to help bulk the stool for better passage. I wish you good luck in finding help for your son. I imagine you and he both feel very helpless and frustrated at this point.
 

·
Registered
Joined
·
6,922 Posts
Hello Maine Mom, and welcome to the Board. You've gotten tons of excellent advise from others, so I don't have anything to add. I just wanted to tell you to hang in there. I'm sure your son appreciates all the help you have been giving him. Hopefully you will find some answers here that will ease things for him.JeanG------------------Member of "The Advance Guard for the Ozone Rangers".May the "farce" be with you. JeanG
 
G

·
Discussion Starter · #10 ·
I wonder if it would be possible find a board for these young people to communicate on. If not, hopefully they can benefit from reading these posts and posting themselves. Come on Kids, lets here from you. Sign me, sick from 5 to 50, but healthy now.
 

·
Registered
Joined
·
1,529 Posts
My first suggestion is summer school to make up the work, and talk to the doctor to find something that will allow the boy to attend school. I have lived through this for over 20 years, and have only 3 times called in sick due to it. It is something he HAS to learn to live with, he will have it all his life. Allowing him to let the pain keep him home is NOT doing him any favors. Get that boy medicated for the pain/symptoms, and get him back into living his life. Sympathy will not help him. He has to understand that he has to learn to live with it if he wants ANY chance for a semi normal life. I know this sounds harsh, but it really IS the best thing for him. I finally kicked my youngest in the hiney, and told her no matter what, no matter how sick she feels (she has several chronic problems, as well as I suspect IBS, although she finds digestive problems too embarrassing to discuss) she MUST attend school. If she wants to come home from school, she must have vomitted, or have a fever over 100. Her teachers and the school nurse are aware of these restrictions and in agreement with them. She will graduate this spring, and that would not have happened if I had allowed her to stay home with her owies. Get the child some counseling if you must, but do what it takes to get him back in school, and keep him there.
 

·
Registered
Joined
·
39 Posts
Maine Mom, my heart goes out to your son. I experienced something similiar in high school when my IBS really kicked in. The only thing I could do was go to school in the morning and tought it out as long as I could. It's also hard for teens because this is not a disorder anyone likes to talk about whether you're 15 or 50. Is homeschooling an option?------------------Metropolis"It is no use saying, 'We are doing our best.' You have got to succeed in doing what is necessary."-Sir Winston Churchill
 
1 - 12 of 12 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top