My Daughter's Mystery Illness - HELP!

[Rare Iron]

Maybe some of you can shed some light on this one. About 2-1/2 weeks ago, my 17 year old daughter comes down with this really bad & persistent headache that will not go away. The third morning she is in tears with pain & nothing will get rid of it, so we take her to emergency at our nearby hospital. They put her on an IV & a pain killer & she starts to feel better, so they release her. Several hours later, the headache returns with a vengeance, so back to emergency once more. Same routine, she feels better, back home. Skip a day, headache still there, then the 3rd day, back to emergency with a real splitting headache. Now we're thinking brain tumor, & so are the doctors. She's not having any vision problems or light or sound sensitivity, so docs are not thinking a typical migraine. The next day she is admitted & spends the next 2 nights there. They run 3 different MRI's, do a spinal tap & fluid is PRESSURIZED (coming back to this a little later). No evidence of Meningitis either Viral or Bacterial. All blood work comes back looking perfect, all MRI results look perfect, etc. All we have to go on now is the spinal & cerebral fluid being under pressure, theorizing this is causing the headache & general ill feeling. No fevers or stomach problems, no sore joints, etc. Doctors are now calling it a Pseudo-Tumor in the brain (Google this) - similar to Water on The Brain (Hydrocephalus maybe?). The docs put her on an IV dioretic in the hospital the night before she comes home - this is to limit fluid production & ease the pressure. *She comes down with a rash on her back & stomach, but not itching. The nurses think this is probably related to some reaction from her medications, but nobody seems too concerned about this. She starts experienced dizziness at the hospital after being on the dioretic & is released Tuesday this week (24th). That night at home, she was acting about as drunk as I've ever seen anyone (from the meds we were assuming). She can't even feed herself or put her shoes on, can't even go to the bathroom by herself, can't hardly talk.

Wed. morning she is despondant - she almost can't talk or answer a simple question. We call her neurologist & he says to get her to emergency ASAP & thinks she's having a reaction to the medication. We do this & the hospital puts her into an observation room for the next 24 hours, but they are doing nothing so we request to have her released that late evening (Wed.). *Still has the red spots - rash - but not itching. We keep pointing this out to the nurses & doctors, but nobody thinks a thing about it.

Thursday (26th) - she is still very despondant after they put her on a anti-seizure medication & she seems like she's getting dementia! Enough of this crap - we take her to U-of-M Medical center in Ann Arbor & admit her to children's emergency. Now things are hopping & happening - they have a LOT of specialized doctors on staff all the time - this is a helluva facility - world class. Long day here & we all meet with a neurologist there after he looks at all her MRI results & all other test results. He concludes all the right tests were run & everything was done right at the other hospital. He concurs with the other doctors that she has a Pseudo-Tumor condition based on the headaches & the spinal tap being under pressure. We point out the "rash" spots on her back & stomach, he does not seem overly concerned about this. We get home around Thursday at midnight. She is off all the dioretics & the anti-seizure meds, & she is back to normal as far as not seeming deliorious. She is still somewhat headachy & feeling very tired & weak, & the rash (red spots) ARE STILL THERE!

I'm starting to think these spots are a sign of something else & not a reaction to a medicine! Does she have measles? Aren't measles in adults pretty dangerous & it seems to me like BAD headaches are associated with this??? (I'll read up on this after posting this). She is now on Prednizone (sp?), & a strong pain medicing in case she needs it. She has had no fevers either. Numerous doctors looked at her along with the Neurologist at U-of-M, & they all looked into her eyes with a light scope & everything looked good in both. She has had no vision problems or ringing-in-the-ears. These are commonly associated with a Pseudo-Tumor.

Anyway, that's it in a large nutshell. She seemed to bounce back after dinner tonight quite a bit - she has had no appetite or energy for the last 2 weeks. PLEASE LET ME KNOW IF YOU HAVE ANY EXPERIENCE OR IDEAS WITH THIS SCENARIO! If she does have a Pseudo-Tumor & medicines don't work, the surgeries to try & fix this don't sound very appealing or very definitive! We are worried to death.

Thanks, -Eric