My 15 year old daughter has been experiencing constant abdominal pain for the past 3 months. She has had problems with severe abdominal cramps for about 5 years but usually they would come on for a few hours and go away. 3 months ago, she started having severe pain that comes on very strong for about 20 minutes and then subsides for about 10 minutes and cycles like that. She is always in pain and movement seems to aggrevate it. She has been having trouble sleeping at night, has suffered from constipation but not anymore, has pain on her bottom that runs down her leg every once in a while, also every so often gets red blotches that are not raised or itchy on her chest(she doesn't even notice she has them, unless she looks in the mirror). She also has a lot of gas and noises in her belly. The last two days she has had floating stools (she was a little freaked out, since she has never had that before). She doesn't eat much at each meal because if she eats too much, it makes her stomach pains worse. I have been giving her small meals during meal time and giving protein smoothies with frozen fuit to help give her more nourishment
When she first started with this pain 3 months ago, she would like in bed with her knees to her chest and stay still. Movement seems to aggrevate it. As the time has gone on, she has been able to cope with it(I think because she has had the pain so long) and can get up take a shower and get dressed and work on her computer. She has been on homebound education for 2 1/2 months with teachers coming to the house to keep her up to date on her studies. The stress of this seems to also aggrevate the pain.
In the beginning, the doctors had diagnosed her with IBS and later decided she didn't have that because her pain would not subside or go away when she went to the bathroom, which is a indicator of IBS. Then they labeled it functional abdominal pain and gave her amitriptyline to help with what the doctor thought were abdominal spasms. This did not help with the pain but only made her loopy. She took that for about a week and we decided to take her off of it.
She again had severe pain and I took her to the emergency room and they did a ultrasound on her and did blood tests. All came back fine. They recommended that we take her to see a gastroenterologist and a ob/gyn because they suspected either something gastro related or endometriosis. I then took her to a gynecologist and she gave my daughter birth control pills to take for 3 months. My daughter did and it didn't seem to help.
She then had xrays which indicated that she had fecal impaction and also had problems with that for the past year or two. The doctor told her to do a enema once a day for 4 days. She did it for 5 days. Still no relief, so the doctor told her to take Miralax 3 times a day until she was having diarrhea. A few days later she was having abdominal pains that were very severe and was having trouble even walking, we took her again to the e.r. They found that she still had fecal impaction and recommended the Miralax 3 times a day for a week and then have her xrayed again and there was no fecal impaction.
Since then, she had a blood test for lyme disease and it was fine. Then she had a lactose breath test and that was fine. She also had a cat scan and that was fine. The gastroenterogist she saw didn't really do anything for her.
Finally, I heard about a great pediatric surgeon and I asked if he could just look at her xrays and cat scan and see what he thinks. He noticed on two of her xrays that she had a big gas bubble on the xray, which he thought was unusual. He suspected either chronic appendicitis or a meckel diverticulum. He had a meckel scan done on her and that came back normal. Then he had a upper g.i./lower bowel series done and the only thing found on that was that my daughter had 2 bouts of g.e. reflux(which does not even bother her). He ended up doing a exploratory surgery on her to remove her appendix and to check for a meckel as well as check inside to make sure everything is alright. He did find that her appendix was kinked and it was lodged into the fat behind and also the pathology reports indicated it had scar tissue on it. He said her appendix was like it was in a cocoon because it was lodged in there. He did look at her intestines and ovaries and everything else and everything looked great, except the appendix and he felt that her left sided pain was referred pain from the appendix.
It has been 2 weeks and she is still having the same pain(all over below belly button but, worse on lower left side just like before). The surgeon scheduled us to see another gastroenterologist and he said that if they do a colonoscopy, then they might be able to find the reason she is in pain. Her appt. is next week. The surgeon also prescribed donnatol for her to take once a day.
Do you have any suggestions as who else we should be seeing or any other tests to do? It is hard as a mother to see your child in so much pain and we aren't finding anything to help with a diagnosis. I feel if I knew what it was, maybe we could treat it or I could do whatever to help her. Right now, I often wonder if what I am doing could be making it worse (such as feeding her something that is making her worse or something like that).
If anyone has any ideas of what this might be, what kind of doctor we should go to or what tests we should have done, please post a reply. I am desperately trying to get to the bottom of what is causing her pain. Any suggestions, ideas or comments will be appreciated.
Thanks, Concerned Mom