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

[MT nester]

Wow sounds serious.
My daughter had pediatric migraines. I gave her oxygen from my oxy-fuel torch & that alleviated the symptoms

[Ron61]

Rare Iron,

I am sorry to hear about your daughter and hope that by the time you read this they have figured out what is going on. I have no medical experience except my own and any reactions I have had to various medications went away quickly after they took me off the medicine. I too, would be wondering about that rash and why they all seem so unconcerned about it.

I had the measles a long time ago but don't remember just what kind of reaction I had. I thought they itched but I am most likely wrong about that.I do know that I was quarantined for about a week.

I will be praying for her and hope to hear good news the next time you post.

Ron

[vatdevil]

Seek as many professional opinions as you can.

[1ntCobra]

You should realize that doctors don't have an answer to every problem. I had some abdominal pains last summer and fall for which I had a ct-scan, an ultrasound and other tests that showed nothing. Over time my problems seemed to have gone away on their own. So the doctors never figured out what my problem was.

I hope you find some answers to your questions and that your daughter feels better. I certainly hope that no surgery is involved.

If the doctors are not concerned about the non-itchy rash, it is probably not anything for you to worry about either. I'm about 3 or 4 weeks into a non-itchy rash that is finally fading. My doctor is treating it as a viral infection due to a persistent cough (with no fever) from a virus. He is treating me for the cough, not the rash. I have a feeling that I would have recovered exactly the same without any medication.

My youngest sister has had occasional nasty migraine headaches since she was a teenager. She had surgery to fix a deviated septum. The surgery did not help. Apparently over the counter Excedrin is the best treatment for her when needed.

The human body is good at healing itself in most situations. And most of the time it can heal itself without the need for medications, surgeries or other medical treatments.

I hope your daughters problems go away on their own or you find a simple treatment for them.

[jshel1]

Iron,

Went through the full gambit similar to what you are describing, with our 17 year-old daughter this past summer. Pituitary MRI's with dynamic contrast, lumbar puncture, field of vision tests, 24-hour urine, cortisol, ACTH, HGH, FSH, luteinizing hormone, A1C, etc. Sound familiar?

Things settled down a bit after school restarted and sleep habits became a little more routine, though she suffered through a spinal headache side effect due to the LP.

Are her periods regular?
What is her build?

We are now tackling the problem with an endocrinologist.
Happy to talk about this further off-line.

John Shelton
(214) 929-6264

[olddog]

I am not in any way giving medical or legal advise, nor am I qualified to do so. I speak based off of common sense and my 53 years of life experience.

First, it seems to me that before using IV pain medication, a cat scan and perhaps an MRI should have been done. Certainly should have on the 2nd trip.

All I can say is a family member recently went into an ER for a sudden stabbing head ache that only lasted 25 minutes and then repeated the next day. The ER did a cat scan and when they found nothing they did an MRI. Then they administered pain meds and released them. Another incident the next day and returned to ER. They ran a cat scan with radio active die and looked at blood vessels.

I do not think your ER took things seriously enough. I think the second ER may know the doctors at the first ER and are being careful not to let you know what the first ER did wrong.

I know of two people who have head aches caused by high spinal fluid pressure. They can treat it with medicine and they can lower the pressure by removing fluid by a spinal tap. The one person I know could not be controlled by medicine and they will only do so many spinal taps. They did a surgery where a pressure relief valve is installed on the spinal fluid. The PRV allows fluid to flow into another area of the body where the fluid is reabsorbed. If you daughter has high spinal fluid pressure, it is a known cause of head aches, and there are treatments. Did they do any tests to attempt to determine why the pressure was high?

As a trouble shooting expert in industry, we always say to fix the obvious even though it does not appear to be related. The rash is one of these. Even though it does not look to be as important to the experts, it very well could be related. Keep pushing them to look at this.

[Rare Iron]

Thanks guys for all your advice & well wishes. She was doing remarkably well last night after dinner, but woke-up this morning with another 7-8 headache (which she has not had for several days this bad). She stayed up for 1/2 hour & took a pain pill, then back to bed. She couldn't eat anything. The nightmare is not over...........

I will check to see if they tested her for Lyme disease. Any other ideas, please let me know. Thanks again - it means a lot.

[mrmustang]

Disclaimer: I am not a doctor, but the following still remains valid in every way shape and form.

Things to find out ASAP!!!!!!!!!!!

Have they tested your daughter for heavy metal poisoning?
What color was her spinal fluid when tested?
Was the spinal fluid cloudy?

Things for your doctor to look in to, MS, Reye Syndrome, pituitary tumor, and no offense, but Neurosyphilis (again please do not take offense to this test or inference in any way). In this day and age, these are often overlooked in the testing of a young adult.

Whatever you decide to do, get yourself to a BOARD CERTIFIED neurologist ASAP for a consultation. That and get copies of every test and test result to him/her ASAP. High spinal fluid pressure is not something to sit around and guess at.......

Wish you and your daughter the very best of luck.

Sincerely,

Bill S.

[Rare Iron]

Bill, they DID test for Lyme & it was negative. Her spinal fluid looked perfect & they tested for Meningitis - both bacterial & viral & both negative. Social disease is a negative - she does not have any "boyfriends" at all so I'm not even considering that (don't worry no offense taken). Heavy metal poisioning I can't say for sure, but they supposedly considered everything & tested for all possible causes, & they have concluded a Pseudo Tumor. Here is a reply from a "brain scientist" from another forum I posted on:

It sounds very much like pseudotumor cerebri. For some reason this condition is more common in young girls than boys and specifically, girls of jewish origins.
It is related to reduced ability of absorbing cerebro-spinal fluid which leads to a build up of the intracranial pressure. Typically, it resolves itself but sounds like your daugther needs further evaluation and potentially a neurosurgery which will place a pressure regulated shunt to drain excess CSF.

Anyway, thanks for your input everybody. I'll post significant updates as they develop.

-Eric

[Rare Iron]

Well everybody, thanks for all the well-wishes very much - it means a LOT! Sorry for starting this thread & then kind of abandoning it.

My daughter is doing MUCH better. We've been through a strange roller coaster of events however. We started out at our local hospital which is part of the DMC (Detroit Medical Center) & where both of our daughters were born - we never had anything but praise for the place. Until this. The group of Neurologists basically ran out of answers & threw in the towel on her. That's when we said enough of this crap, & took her to U-M Medical Center in Ann Arbor. As outlined in my original post, we admitted her to U-M Pediatric Center & she was released later that night after one of their Neurologists checked her out. He said our next step was to see one of the Neuro-Ophthalmologists. The reason to see one of these specialists is because they can look into the eyes & see if there is evidence of a pseudo tumor celebri going on. Well, after 2 exams with the 2 N-O's there, they have concluded they do not think there is a pseudo tumor condition, because there is nothing to support the diagnosis. A pseudo tumor will cause the optical discs to be tilted & the nerves to be inflamed. Everything fine on these two accounts.

Anyway, she still has some headaches, but sometimes they are totally gone. She successfully completed a day at school on Friday. She had gone in about 10 days earlier, but during 3rd hour the headache came back full-force - enough to put her into tears. She has gained back the weight she lost (about 11 pounds), & seems almost back to normal. I think the doctors are baffled. They now think the high pressure that was experienced during her spinal tap was a false positive - it can happen if the patient moves or is in the wrong position during the procedure. If there was still a high pressure in her spinal/cranial fluid, it would show in the eye exams. She also still has the rash or red spots! She went to our dermatologist on Thursday & he said it was a reaction to the Diamox from several weeks ago - still hanging on! She also has a "water rushing" sound in one of her ears - this has not been explained by anybody so far. Our next step is to take her to a pediatric neurologist at U-M for further evaluation - we are waiting for an appointment.

In conclusion, she IS much better - & we don't know what it was, but there are the few lingering issues. We hope to see her get totally better soon & have no lasting effects. It still bugs me though - WHAT WAS THIS?

[Ron61]

Rare Iron,

That is good news and I hope that they can find what the rest of the problem is quickly. But at least she is getting better and this has been a nerve wracking thing for you and your family. Hopefully your next post will be about they have found what really set all of this off and just what it was.

Ron

[tcrist]

Rare Iron,

Glad thie seems to be getting better. One question though. Have you ever thought about taking her to a chiropractor? I know that a lot of people and most medical doctors do not believe in them but it might be worth a try.

I do know that the one that I go to healped my youngest son with his "migrain" headaches. The same kind of thing. The doctors just thru up their hands and gave him meds that just zoned him out and said that he would have to take them the rest of his life. He was 11 or 12 at the time. Chiropractor redused his headaches to almost nothing within two visits.

No offence taken if you do not believe in chiropractic care.

[Ron61]

I am happy that your daughter is getting better and hope that by now she is completely over this. When you have a chance how about an update and maybe telling us what they found if anything positive as it could help someone else in the future. Best wishes and I hope that she is completely back to normal by now.

Ron

[trularin]

U of M med is good. There are several professionals there that can help.

My wishes for a speedy recovery.

[Daddisgrl]

Originally Posted by Rare Iron

Bill, they DID test for Lyme & it was negative. Her spinal fluid looked perfect & they tested for Meningitis - both bacterial & viral & both negative. Social disease is a negative - she does not have any "boyfriends" at all so I'm not even considering that (don't worry no offense taken). Heavy metal poisioning I can't say for sure, but they supposedly considered everything & tested for all possible causes, & they have concluded a Pseudo Tumor. Here is a reply from a "brain scientist" from another forum I posted on:

It sounds very much like pseudotumor cerebri. For some reason this condition is more common in young girls than boys and specifically, girls of jewish origins.
It is related to reduced ability of absorbing cerebro-spinal fluid which leads to a build up of the intracranial pressure. Typically, it resolves itself but sounds like your daugther needs further evaluation and potentially a neurosurgery which will place a pressure regulated shunt to drain excess CSF.

Anyway, thanks for your input everybody. I'll post significant updates as they develop.

-Eric

With the Lymes test; they should do a few & send to various labs. This was on the mystery diagnosis show. They said that the blood had to be caught just right or something like that & that it may not show in every vile.

While you say she's not sexually active; she still should be tested. We can't be with our kids 24/7 & they may not be honest with us.

Originally Posted by Rare Iron

Anyway, she still has some headaches, but sometimes they are totally gone. She successfully completed a day at school on Friday. She had gone in about 10 days earlier, but during 3rd hour the headache came back full-force - enough to put her into tears. She has gained back the weight she lost (about 11 pounds), & seems almost back to normal. I think the doctors are baffled. They now think the high pressure that was experienced during her spinal tap was a false positive - it can happen if the patient moves or is in the wrong position during the procedure. If there was still a high pressure in her spinal/cranial fluid, it would show in the eye exams. She also still has the rash or red spots! She went to our dermatologist on Thursday & he said it was a reaction to the Diamox from several weeks ago - still hanging on! She also has a "water rushing" sound in one of her ears - this has not been explained by anybody so far. Our next step is to take her to a pediatric neurologist at U-M for further evaluation - we are waiting for an appointment.

In conclusion, she IS much better - & we don't know what it was, but there are the few lingering issues. We hope to see her get totally better soon & have no lasting effects. It still bugs me though - WHAT WAS THIS?

Has she had the Gardasil vaccine? This is a typical side effect of it.
What about any other vaccines?
I agree with the chiro.
Also; does she have her wisdom teeth? My daughter complained for a while; we were moving; she had an orthodontist; I guess no one listened to her; thought it was just the braces/rubber bands until she ripped her braces off; xrays were done & all 4 were impacted pretty bad.

[Daddisgrl]

Wisdom teeth should be the 1st thing they look at due to her age & it was over looked with my daughter. If she has not had them extracted; it's possible they are impacted. My daughter had xrays; etc & while it was obvious from them; not one doctor mentioned it.

My next concern is whether she's had the Gardasil vaccine (or any other vaccines) because this is a known side effect of the vaccine. Some girls have it right away while for others it could be months after the vaccine is completed.

Is she taking any medications?
Had she had a tox screen in case she was slipped something at school.
How is her diet? While we think we're eating well; she could have a reaction to something in processed foods. Gluten should also be considered.

Toxic shock syndrome has a rash for a side effect- google TSS rash to see images to compare to her rash.

Has she switched products for her monthly flow? If she is using tampons; they should be stopped & natural pads should be used for a few cycles to see if her body is having a reaction to chemicals left in the cotton from the processing.

Toxic shock syndrome - Although the earliest cases of toxic shock syndrome involved women who were using tampons during their periods (menstruation), today less than half of current cases are associated with such events. Toxic shock syndrome can also occur with skin infections, burns, and after surgery. No single test can diagnose toxic shock syndrome. Google TSS rash for pictures to compare to her rash.
Symptoms
Confusion
Diarrhea
General ill-feeling
Headaches
High fever, sometimes accompanied by chills
Low blood pressure
Muscle aches
Nausea and vomiting
Organ failure (usually kidneys and liver)
Redness of eyes, mouth, throat
Seizures
Widespread red rash that looks like a sunburn -- skin peeling occurs 1 or 2 weeks after the rash, particularly on the palms of the hand or bottom of the feet

[Daddisgrl]

Have they ruled out toxic shock syndrome? It would explain a lot of her symptoms; including the rash; confusion as well. I have a few other thoughts too