Please help us help our 13 yr. old daughter

[deb6]

my daughter, 13 yrs. old, started with lower left quardrant pain in her abdominal 3 1/2 mos. ago.  she had ultrasound to see if cyst on ovary, this was negative.  pain has been constant everday all day.  she can not lay flat on her stomach or stand for too long or gets dizzy, nausea and pain worse.  painful to touch upper left quardant.  since has developed arthritis in her right hand and both knees.  doctor's appt said she tested positive on all 18 point pressure test for fibromylgia.  she has had a ct scan of abdominal/pelvic, colonscopy, and upper gi barium with small bowel follow through. all were normal. for the most part, all blood work has been fairly normally that they have repeated numerous times.  some highlights: tested negative for lyme, mono, epstein bar virus, thryoid issues, liver issues, h pyloric.  things worth noting:  first anti nuclear antibodies tested positive with 2 subsets positive as well but next test performed 5 wks. later showed negative. segs and react lymphs were slightly high. we feel helpless as her parents, her quality of life is not what it should be, we watch as each week she becomes more uncomfortable in different parts of her body, her feet are starting to hurt her now.  she can't sleep without pillows under knees and multiple pillows under her head and even with that, she wakes up all night long.  please if there is any advice you could give us. doctors have not given her any medicine (tried prescription aleve but made her stomach much worse) and we just don't know what to do to make her more comfortable and to figure out what the heck is wrong.  i know the doctors have been great and are trying but 3 1/2 mos. later we still don't have any answers. thank you for your time.

[Caitysmom]

Sometimes tests are not so reliable.  I had stomach issues in the past and which no doctors could figure out.  My tests were always "normal".  I felt awful all the time.  I then decided to do a food challenge test. I read alot about gluten intolerance, not picked up by tests.  Not celiac, but an intolerance.  Sure enough, I went gluten free and improved tremendously.  Strictly gluten free for 6 years now.  Also taking probiotics and digestive enzymes makes a difference along with it.  Unfortunately sometimes we have to be our own doctors to figure things out.  I hope things improve.

[CalGal]

For Lyme disease, I believe the current recommendations for serologic testing is to use a 2-step approach. It's suggested that (1) a sensitive enzyme-linked immunosorbent assay (ELISA) be followed by, (2) an western blot.

They also suggest that an immunofluorescent assay (IFA) can be substituted for the ELISA.

I believe that the CDC and FDA have cautioned that some commercial labs are performing assays for Lyme disease whose accuracy and clinical usefulness are a bit questionable. The tests include: urine antigen tests , immunofluorescent staining for cell wall-deficient forms of B. burgdorferi, lymphocyte transformation tests, and polymerase chain reaction (PCR) on inappropriate specimens such as blood and urine.

So neither the colonoscopy nor the barium could see the terminal area............? To tell you the truth, I'm not sure what that could mean at this point. With barium even strictures are usually seen. With a colonoscopy, if there were incredible swelling then it might be difficult to get through, but the doc would have noted that. And the CT scan would typically have indicated 'abnormalities' such as a rotation or twist, unless a telescoping were going on during the test - but it would have be on the side other than where the pain is located.......

Deb, I'm stumped at this point. I'll ask some others I know to see if they have suggestions. But don't give up. I know how frustrating it is, but keep prodding the docs to keep their minds open and their brains thinking about things. And if you can think of anything else, post.

[deb6]

Thanks so much for your response.  She has been tested for Lyme twice, both times negative.  We do live in the NorthEast and definite lyme disease around us.  What else should/could we do to be 100% not lyme?

She was not sick at all and definitely no rashes before.  In fact, first winter she wasn't sick at all.

Liver/pancreatic enzyme levels were all normal.

As far as why 1st Gastro doc did not go all the way, she just told us after it in the waiting room that she was having difficulty and didn't want to push it especially since pain is on left side.  What about the upper gi barium small bowel follow through, they said they couldn't see the terminal illeum even though they turned in all around and even laid her flat stood her up.  Why wouldn't they see it?  Does both suggest a problem?

Thanks for your continued support.  

[CalGal]

Are you sure that she didn't have any kind of a small bout with a 'flu-like' condition when this started? Or anything - even one spot - that looked like a rash; maybe a bull's-eye like spot? I'm grasping at straws, but the vagueness of her symptoms and since they're all 'over the place' is confounding. Do you live in an area of lyme disease? I know you said she was tested. but the tests aren't 100% all the time.

Along another line, what your doc is saying is correct. They really do need to get into the terminal ileum. Conditions can start there and it can be very difficult to figure out what the heck might be going on if they can't get to that spot and take some biopsies. And I'm wondering why they couldn't get into that area before - was there any explanation other than they had trouble? And please make sure they biopsy. There are things that cannot be seen that start under the surface but may not show up for quite awhile.

I assume they have tested her liver and pancreatic enzyme levels?

Have you read the report from the other colonoscopy - both the doc's report and the pathology report? If not, get a copy and read it. Sometimes small things are overlooked - even with the best doc.

[deb6]

Just an update to see if it helps you think of anything that could be causing all this pain for our daughter, she woke up today with her knees really bothering her and a large red spot on her knee, about the side of a nickel.  She also has lost 5 lbs. in the last week.  She hadn't lost any before, if anything gained a couple of pounds even though she wasn't eating much.  What do you think?  Any help/advice would be so appreciated. Thanks.

[deb6]

Thanks for responding.  I forgot to mention that she has been tested for all food allergies including gulten, dairy, and the like. All negative including the sweet breath test.

She has some fatigue (but not extreme) and no rashes.  She has about two bowel movements a day (before this started she said she used to go once every other day).
Definite decrease in eating.  Gets full pretty easy but can eat some.

The pain she feels when you touch is just below rib cage on left.  Constant pain is in the lower quadrant.  

Gastroenterologist called back today and said she would like to repeat colonscopy since first gastroenterologist did not do a complete first one since she said she was having problems with getting her instrument around and since the upper gi barium with small bowel follow through could not see the terminal illieum.  

We don't want to put her through unnecessary tests but doc seems to think it is important to see this area even though so far both tests showed no inflammation on the parts they could see.  Think we should do this again, last colonscopy was 3 weeks ago but with a different doctor.

Any help you could give us would be greatly appreciated.

[CalGal]

This may be 'off the wall' but is there any food intolerance issue in your family - anywhere? Any dairy problems? Any gluten intolerance? Any fructose intolerance?

Does she have any extreme fatigue, or 'brain' fog? What about rashes? Any change in bowel function?

Where, specifically, is she 'touchy' in the upper left quadrant?