# Guilty feeling



## Ingrid1 (Feb 5, 2008)

My son has IBS D and has lots of accidents. He misses school regularly because of this and his abdominal pain. He is 12 now and in 8th grade. He can't keep on missing classes.I feel guilty because I can't help him. People around us will ask questions and even my husband now is showing signs of not agreeing with keeping him home. What can I do? I can't send him to school with when he has accidents. He will be teased for the rest of his life. It did happen in school but we were always able to hide the facts and because of a very nice school nurse that helped us. This school doesn't have that, kids are not as nice either. Anybody in the same situation? Am I doing wrong by protecting him and keep him home when he is sick?I really appreciate some input from other people in the same situation.Ingrid


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## sazzy (Nov 27, 2006)

HeyaHave you been to the doctor about it? It does sound like a very extreme form of IBS if this is happening all the time so that's the first thing I'd do.It's hard to get a balance right where IBS is concerned. Yes it's an extremely hard thing to go through, especially with one so young. I remember when I was first diagnosed when I was 11 and I really just didn't want to know, and didn't cope at all. But I think it's important for you to work together to get him back into school even if not full time. The hard truth about IBS is there's no cure and we can't live sitting around hoping for one to come along. Everyone's got to learn to cope, and especially with school being such a vital part of life he needs to get back into it. Try different types of meds, through the advice of your doctor, different things help different people, and see what's most effective. At the end of the day though, i'm sure even he doesn't want to spend his life sitting at home feeling sorry for himself. You and him need to sit down about it and talk to each other and maybe make a progress chart to give him steady targets to get to in his life. It is very hard on younger children, especially when they're changing schools and such as life goes upside down anyway at that point but you also need to work on getting to a stage where life's not so hard anymore.It is possible. To start with I never thought i'd make a day through school without getting stressed and upset about IBS, 4 years down the line I now hardly even think about it and it's become a background problem. It's still there but i've worked and worked at it until finally it's something I can cope with and live a normal life like everyone around me. I can do practically what everyone else can.


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## Ingrid1 (Feb 5, 2008)

Yep, we've seen doctors. Since he was very young, we are with the pediatric gastroenterologist (2 in 2 different states) and they found several things wrong. Some related to food, some just allergies. But nothing we did brought relief to his abdominal problems. After several years they just came up with the diagnose IBS. So here we are, trying to coop with this nasty thing.The hard thing is, he likes to go to school and will try as much as possible. While having accidents, he obviously doesn't want to go. They happen frequently and he misses too many days of school and live. I read a lot about IBS but don't find a lot about these accidents. Is this not common in IBS? Any body solutions how to deal with these?How do other parents deal with all this? Missing school, diarrhea, abdominal pain and sad kids?Ingrid


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## sazzy (Nov 27, 2006)

No, I don't know many people on here who have regular accidents, which is why i'm thinking it may be something other than that.If he's really missing so much school, have you concidered home tutoring?


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## Rosie (May 9, 2002)

Ingrid, I have lots of accidents, mine are caused by the intestinal surgery I had.Do the Doctor's know your son is having accidents and its affecting him going to school? If not, I would make them aware ASAP.Have they tried any meds to help? If not, there are quite a few meds that could really help him. My Specialist's sent me back to my GP to try to find a med that would help. Do you have a good GP, I have found mine to be really knowledgeable and helpful.Good luck, I really feel for your son (you too), I can understand why he wouldn't want to go to school.Best of luck.


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## Ingrid1 (Feb 5, 2008)

The only thing ever offered to my son was Immodium. At that time, I wasn't ready for just symptom treating, was hoping to find a treatable problem. Slowly, I am starting to admit to myself that this might never happen. We just moved to CA and are trying to find a good pediatric GI with understanding IBS skills. We did consider home schooling but he loves school and doing stuff with friends. So far, we have been lucky with teachers. They always sent home work so he could study at home. We are very happy with the fact that he is very smart, it helps tremendously with not getting behind in grades. I just hope that CA will do the same for us.We are ready for meds I think. Time to get this under control as much as possible.Thanks. Ingrid


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## KRIS R (Oct 20, 2007)

Hi Ingrid, My heart goes out to you and your son. As a mother of a son with GI problems my heart knows how it breaks for our kids. I feel so helpless most of the time. I tried an elimantion diet for my son. Added new foods slowly to see if I could find foods that would trigger him. We have been eating alot of chicken and turkery. I have never ate so healthy and boring (but I lost 8 pounds myself) But the best thing my son has felt alot better!!!! who knows, I feel like I am shooting in the dark reaching for anything that might help. I read you just moved to CA. I live in Livermore CA.After having the worst treatment with Kaiser I demanded a second opinion with Standford's Lucile Packard Children's Hospital. What a difference. Kenneth L. Cox, M.D. Professor of Pediatrics Division Chief is such a good Doctor if you need one. Don't take any one else there. He is the top man. They also have a pain and symptom Management Clinic for children. They are tops. My son will be meeting with them once a week for 8 weeks soon to help him manage. Keep your spirits up!! Your not alone.Kris


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## Mom (Nov 27, 2006)

Hi Ingrid,My son is 13. we have been dealing with this for two and ahalf years. We have had only one school accident which was at the end of the day but we miss ALOT of school. I feel alot of pressure from theschool but they have letters from 2 psychologists, three medical doctors and one psychiatrist, so I'm not too worried. My son is in pain about 3/4 of the time--home today with severe D, vomiting and severe cramping. We are not convinced totally that this is IBS as we know exactly when it started and there are other unexplainable (scar tissue) things. we are thinking to go to mayo clinic or cleveland clinic--not sure yet but we reffuse to have him and our family live this way until EVERYTHING has been checked out. I would suggest you keep daily notes on a calendar--highlight any "episodes" pink for mild yellow for severe (something like this) This then will make an impact on your doctor as to how your child is living. with the whole school thing, document everything. get as much work done at home as possible. it is all you can do. hope this helps praying for us all Mom


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## KRIS R (Oct 20, 2007)

Hey Mom,







Your ideas are great. The highlighting severity is really a good idea. I got so frustrated one time with the doctors I video taped my son for a week during his bad times and brought it in with a tv to show them. It was like they just wouldn't get it or didn't think much of it before the video. I said look!!!!!! this is the way my son has to live!!!!! I made the doctor watch the whole thing. I was just so fed up!!!!!!!!! I am starting to believe the GI tract is so envolved they don't have the knowlegde to really help these children. There are to many kids suffering with GI problems they can't seem to help. Is the GI too complicated to really understand fully? I am beginning to believe so. That's why they say IBS cause they really don't know and can't say anything else yet. My son is back to school and is doing pretty good. We are still very cautious with his diet. His twin sister is going to science camp and he didn't want to go. Some of the other kids that aren't going have GI problems as well. He was happy to say so and so isn't going cause he has stomach problems ect.... I think he was just happy to find a friend that understands that he could talk to his own age. Well, as always you and your family are in my prayers. Kris


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## Ingrid1 (Feb 5, 2008)

It is unbelievable that there are so many kids out there with the same issues. My son is not going to his 8th grade trip. It makes me sad but he can't do it. He is too afraid for accidents, abdominal pains and other pains he is going through. Not fair!Does anybody know about nice camps for kids with IBS problems? I know there are camps for "Crohn's" children.It would be great if these young people can hang out with people that have the same "problems" without the embarrassment. I feel so bad for all kids and parents. It is hard to deal with. I really really hate this IBS thing. Kris, you are right. There are still lots of secrets in our body. I think that there should be more research about the functional problems in the bowel. Why do these things happen. Is there anybody who knows exactly how it works? Well, for a lot of people, it doesn't work at all. Those are the IBS people.Unfortunately, the hospital you mentioned is too far for us. We are in Southern California. I did hear great things about Standford's Lucile Packard Children's Hospital.Good luck to you all. It feels a lot better to share the misery. Just wish I could do something more. Ingrid


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