Very Sick 19yo daughter,can't get a positive test result

[zpup]

My daughter has been very ill for April 2009 as close as we can figure out. First we noticed a severe weight loss alone with her grades dropping from a 4.0 to not being able to keep up in class. She was a happy very involved with her school, teenager, looking at ivy league universities, playing soccer and ballet. Skip to today, she has severe stomach pains (says it feels like tearing, rating pain as an 8, 9 screaming. These last about from 3 ~ 10 minutes long and happen several times a day, doesn't seem to depend on when or what she has eaten. Although it does happen every morning in between her many trips to the bathroom with very loose stools and they are floating, sometimes a bit of blood within the mucus and vomiting several times a week.

Besides the stomach attacks her worse symptom is her joint pain. She will sit and cry with the pain and says that it hurts to move. Eyes are senitive to light and complains of pressure and hard to see. Symbols in her math book change on her. She has recently started to have seizures and has stopped driving. Her skin has developed a tunneling type of acne that she has never had before.

During one really bad period her skin turned a dark sick looking brown color. At that time the doctors decided it was Whipple's Disease, but like all the other guesses the tests and lab that are done show nothing is there. When they thought Whipple's she was put on Bactrim and it was like watching a miracle. She improved every day. But when the test came back negative the doctors said that they could not justify the antibodics and took her off of them. She went downhill within a week; all the old sypmtoms started up again and no we're to having seizures again. I'm scared too death for her. I understand that the medical experts can't find the problem, but their attitude about not finding the problem is more than I can handle. Every thing becomes about mental health if they don't have a positive test results. We know it's not Crohn's, celistic's, allergies, arthrisis or cancer, and all the auto immune test are normal.

I believe that she has some type of infection that the labs are not showing. All her blood work looks normal, with a bit of a high white blood count (12.8). However it was impossible to ignore the positive effects that happened when she took the Bactrim. After she had another seizure (EEG normal), and the doctor started to talk about anti seizure medication, I wrote her primary doctor a 3 page letter detailing everything I could think of and demanding that they put her back on the antibodics and then do more lab work when she is improving and compare the results, before the anti seizure medication is started. If she has a seizure during the treatment then that can be changed. I am so mad that the medical community does not do benchmarking lab work when people are healthy so comparasions can be made. Does anyone have any ideas and why is the medical community so bad about detecting infections??? I do know this from having my own history of unfound infections until permanent damage is done. I don't want my daughter to become disable because they don't have a positive test result. What has happened to science within medicine?

[zpup]

Thank you for all the feedback. The doctor did take my letter in the spirit that I wrote it, as a frustrated mother who knows her daughter is sick. She was put back on the Bactrim and is improving day by day. The joint pain is still there but is getting better, just slowly. The state plan she was just put on is requiring her to switch medical providers, so she is changing doctors anyways. Again, thank you for all the suggestions. Bless you all.

[OldFatChick]

Doctors are human beings.  And, as in every profession, they are fallible.  Just because they graduated doesn't mean they were a great student.  They could have graduated more toward the bottom of the class than the top.  Also, many are just lazy and it's easier to say it's all in your head.  If the doctor isn't listening FIND ANOTHER DOCTOR!

[soldy]

Hi,Tempestlady is correct.Please have your daughter checked for presence of fungus called CRYPTOCOCCUS   GATTII  in her system.

[Tempestlady]

Sorry to say this but are you on a state funded insurance?  and doctors get good kick backs for prescribing many seizure medications......I would take her to a different complete facility out of town  preferably a catholic or non for profit hospital ASAP.  You can go to Mexico or Canada and buy your Bactrim if you want for cheaper too.  Take her off all man made foods.  If mother nature made it she can eat it.  If man changed it an any way i say NO.  This means no cakes, crusts, ice creams etc.  Only food the way the earth prepared it and soups and gruels like oatmeal, barley, cram of rice etc.  She needs to see a gastroenterologist who is a specialist and not connected to the ones you have already seen.  Get a blood sugar test and check her blood sugars and keep her over 100 and under 200.  Checking before she eats.  Take a poop sample to everyone who will test it and see if she may have Giardia or some other parasite.  Don't eat out much, it could be something she eats out on a regular basis and they put in their food.  Tell her to try a benadryl every morning and see if it help with the cramps and frequency of the diarrhea.  ou could also try - I know it sound insane- but adding metamucil to her evening routine.  It will add fiber and give her stools bulk.  No coffee or stimulants at all.  Lots of water and fluids with electrolytes.  Antibacterial soap, listerine and gargle every night.  Clean the shower and tub with a bleach or Lysol product.  Wash your dishes by hand in case she is sensitive to the dishwasher shine residue.  With an antibacterial soap.  Baby oil after a bath.  Bath would be better until she gets better , it helps relax internal muscles and will help with the skin problem.  Epsom salts can cure amazing things.  Try it in the bath and see if it helps.  Have a gyn check her out to see if it could be hormonal, she is of that age.  See if it worsens or gets better sertain days of her cycle.  If she is on the pill - get her off!  A daily vitamin i would recommend centrum no iron for now it will give her more cramps.  Pepto bismol after meals and find some probiotics for colon health.  Avoid alleve and ibuprofen they are very hard on the digestive system.  If she has to have something go with tylenol if her liver function is normal.  Avoid milk products or buy lactaid when she has milk products in case it is complicating her diarrhea.    But i would go over the border and just go get what i needed.  Don't overlook eastern medicine.  The orientals have a totally different approach that is very effective and expensive, but effective.  The diet should hold off the seizures a while, the sugars balancing should help her thinking and vision as will the vitamins, the elevated wbc's is the clincher though.  Small meals 4 or 5 times a day just a cup of food at a time for a while.  That's all i got.  Hang in there and i hope it helps....