Sick daughter

[srw198x]

  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.

[srw198x]

Thank you so very much. yes i have taken her to doctors since she was about 6/7 months old, she always has been sick basically since she started eating, back and forth to different doctors and always things were negative, she has had so much blood work and sweat tests stool samples and ct scans and always i get the same answer, just this time there was a doctor who listened. I just had a scope done on myself for almost exact symptoms that she was having and my scope didn't come back with great news so after that i called her gi doc and demanded that he do the scope, i told him if he didnt i would find a doctor that would so, she is schedualed on the 28th of this month for her endoscopy.  i havent really logged her food, BMs or pain or anything i guess that would probably help alot esspecially if she does have crohns we can start figuring out what triggers her to have these horrible episodes of diarrhea vomiting and pain and stay away from those foods.
Thank you for your support it helps alot, i try to talk to friends and they just dont understand or even get whats going on, sooo frustrating. i think these doctors think i a, crazy!!!!!!!!  
--Sara

[avtmom]

Hi there.  We've been chasing my son's symptons since he was five.  It seemed like every test we did was negative for what they were looking for and not conclusive for anything else.  And there were A LOT of tests and scans.  We did have the endoscopy and colonoscopy done, which helped us...and finally began treatment for Crohn's when he was about 6-1/2.

I know how difficult it is when your child is in that 5%, and the doc's don't know what "it" is, but want to keep "climbing the ladder one rung (test) at a time" to determine the cause.  I had to use the "okay it isn't that, what else could it be" approach and keep pushing.  Sounds like you have been doing the same.

You said the CT scan showed a bowel obstruction, but then the exploritory surgery didn't reveal anything on the outside.  It seems like the next logical place to look is inside...I would say listen to your instincts and do the endoscopy and colonoscopy as quickly as you can.  They will have to put her to sleep, but it they are just scopes (no cutting) and the recovery is very quick (a couple of hours).

If you haven't already, start keeping a log of what she eats, drinks, her bm (frequency, consistency, color, smell, blood?) and pain levels.  It can be a useful tool.

Keep asking your doctors "if not this, what else" questions.

My heart goes out to you and your daughter.  My son says that the thing that gave him the most hope during "the dark period," was knowing that his mom never gave up asking questions and pushing for answers.  I'm sure your daughter knows you are fighting for her too.

I'd love to keep in touch and see what direction things go for you.