sick daughter

  I have a 7 year old daughter who has been sick pretty much her whole life with diarrhea vomiting and her being malnurished looking, and lately she has been getting progressivly worse. Recently I took her to the ER for stomach pains as I have so many time before and every time she was looked at and they ran some basic blood tests and always she was sent home without further testing. Well this past January I took her in again for mild stomach pains compared to what she has endured in the past and the doctor at the hospital didn't really know what was wrong, she wasnt presenting with anything major, she was in pain but not in tears or anything but he decided to do a CT scan just to make sure she wasn't having issues with her appendix. well the CT scan showed that she actually had a severe small bowel obstructon for no apperent reason. The ER Dr. mentioned that this was not normal and that she could possibly have celiac or crohns disease. She was transfered to the childrens hospital where the surgeons reviewed the scan. She ended up having exploritory surgery where they didn't find much just meckles diverticulum which they took care of and they removed her appendix since they were in there so she didnt have to worry about problems with that in the future. Other than that they didn't find much on the outside of her small bowels. We were reffered to a GI specialist. He put her on previcid to start. The GI Dr. agreed that she might have either one of the diseases but wanted to test for more minor things first. We have done a celiac panel which came back negative and the other blood test were negative too. We also did a stool sample and in that sample her "reducing substances" test came back positive I belive it was +1 or +2. The stool i collected was one of her "good days",  the GI Dr. mentioned lactose intolerance but thats not it, I have tried removing dairy products from her diet in the past for an extended time and she still had problems. Dr. decided to put her on an antibiotic for a possible bacteria overgrowth and on that medication she actually got a lot worse not better. So now he is treating her for constipation, which I don't understand why, she has diarrhea all the time. On the miralax she is in alot of pain. I gave her only a half of a dose the first time as the doctor recomended and she had a really bad accident with that dose about 4 min after drinking it. I reduced the dose to only 1/4 of a dose and she is still having severe diarrhea and really bad stomach pains she has almost no appetite and she shows signs of dehydration, I am trying keeping her up on her fluids, but she wont really have anything but water. she has dropped about 7lbs making her 40lbs currently. Her weight is continuing to decline as with her activities, she just wants to lay on the couch most of the time or sleep. she is like a rollercoaster with her pain and energy levels just a constant up and down. I am not really sure what to do next as far as testing or what I can try to even help her out . The GI doctor mentioned doing a endoscopy, but I feel he is hesitant and I dont understand why. My gut is telling me that I really need to push for this surgery, I really feel they will find something. In the mean time all these tests and medications aren't seeming to help or give any answers to what could be wrong with her. I really could use some guidance and education on what I should do. On her fathers side of the family there is crohns disease, my side of the family is pretty healthy aside from high cholesterol and 1 aunt who has IBS but she is really unhealthy about her choices in food. I personally have severe acid reflux and severe bowel problems like pain, diarrhea for about 3 months straight now, bloating etc...and I am awaiting my own edoscopy tomorrow. Is there anything that the doctor and I might be over looking for my daughter??? what kind of questions should I ask? what symptoms should I be looking for? My daughter is very sick and I am getting concerned about the steady decline she is having. It seems like we are comming to the same thing every single doctors has told me.. "well the blood work is fine we don't know why she is having these issues" I dont know what to do, please, ANY information would be greatfully appreciated. Thank you.

[trinity007]

Hi,

Did the doctor run genetic tests for Celiacs?  Although she may not have exhibited the evidence of her microvilli wearing away within her small intestines she might have celiacs.  Also, try to push for the endoscopy.  This would help in determining if there is something going on within her stomach.  Another thing to consider is a parasitic infection of some sort.  I know is sound disgusting but it worth inquiring about.  Have you considered going putting her on a gluten-free diet for a week or two to see how she responds?  And, last of all, trying changing her personal items...i.e favorite cup, plate, bowl....maybe there is some sort of contamination.  

I really hope you get some answers soon.  Its heart wrenching to hear that a small child is suffering like that.  You stay strong.

Best wishes

[srw198x]

the GI doc said he tested for bacteria and parasites everything came bach negative, except a "reducing substance" test from her stool sample that came back positive numbers when it is supposed to be in the negative numbers. After having my scope done and a biopsy (for very similar problems I've had for about 10 years) I got my results and I called her doctor and I demanded he do the scope because my scope showed signs of disease. He agreed to do it so just waiting to schedual and have the procedure. I have tried to do gluten free for both of us and she and I felt better almost immediatly, but the doctor told me not to as this could cause test results to be faulty and we are not done with testing yet, but he is aware that the glute free helped some symptoms, but because of the negative celiac panals on both of us the doctors are leaning more towards crohns disease????? So I guess we will just wait and see. I have to go back for colonoscopy because the scope through the mouth can only go so far, they need to take a look at everything in me, so I belive my daughter will have the same thing possibly both ways. It isnt just gluten that is bothering us its so many other things like soy milk, soy beans, regular milk, pretty much anything with caffiene in it ,most pastas, even good things like apples and stuff, its weird. it seems like its not just gluten things that are causing these "flare ups" if you will. Hopefully she will get better soon I fell like my daughter is litterally whithering away and my self too, ive lost 40lbs and 6 pant sizes in a little over a month (not healthy and almost scary)... things will turn up though. Another thing that is a new symptom is my daughter has lumps on her neck/throat area that just started a few days ago??? I'm worried so hopefully sometime this week or next they can get her in. Thank you for the support I feel like im going crazy and the doctors think I'm crazy too.
  
Oh and I dont know about the celiac genetic testing, all I know is he said celiac panel what ever that mean Im not sure what exactly is tested in the celiac panel.

[srw198x]

daughter was able to get schedualed for her endoscopy on april 28th :) yay, ive been trying to hard to push for this and FINALLY its happening!!!!