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.

[patient915]

It seems like she really needs to have a colonoscopy.  This would show if she had celiac or chrons.  The prep is miserable but that really sounds like what she needs.

[srw198x]

I couldn't agree more, I'm really hoping that with my procedure tomorrow it will help shed some light on the horrible situation. I have pretty much the same problems so if anything good comes out of my scope tomorrow it will be that they find something and it could help point us in the right direction and possibly give an answer to helping my daughter out!

[mammo]

She needs an endoscopy and a colonoscopy, blockages don't just happen.  I would switch GI's and get a second opinion.  They should never have done surgery without these two tests being done first. They need to view her colon and upper GI tract on the inside.  Keep going until you have answers, this is nothing to mess around with.  It would benefit her greatly if you could get her to Cincinnati Children's Hosp. in Ohio.  They are the premier unit in the country for pediatric gastroenterology.  People travel from all over the country to have their child treated there.  They don't miss a thing and are on the cutting edge with everything.  They have a Ronald McDonals House for the families. Good luck to you and I hope your daughter gets some help quickly. Take care...

[srw198x]

WOW my scope results came back pretty bad today! But on the upper hand I sent my results to my daughters doctor and I think that convinced him to go ahead and order for my daughter to have an endoscopy/colonoscopy, and also is it normal to have this much pain and bloating after scope???? I am so bloated I look 9 months pregnant and I swear I can feel where he did the biopsy in there I am in alot of pain and my throat hurts as well!!! I've been able to release lots of gas today but for some reason I am still bloated, and it hurts me belly when I eat like sharp stabbing pains, I have to chew my food almost to complete liquid before I can swallow is that normal after scope?  

[mammo]

It is normal to be bloated and gassy after your tests, as well as having a sore throat.  This gas will continue to pass thru. I don't think the pain after eating is normal, unless they biopsied your stomach and food is aggravating the area.  I would call your GI about this one.