Any thoughts/advice for next step on this teenager's problem

[BDKmom]

Tested for vertigo and that was ruled out. ENT doctor was confident of this. Did a physical test where he did something to her head as she was turned a particular way and remarked that if it were vertigo, she would immediately have thrown up.

There can be types of dizziness that are ear related that are not positional vertigo. Has she had a VNG (video nystagmography)? This is an in-depth balance test that checks for other possibilities. (Neurologist may have done this.) If they want to further investigate any ear-related possibilities, they could see a neurotologist. These are further specialized ENTs who deal only with ear related issues. Basically, combo of neurologist and otologist.

I have worked in ENT practices for 12 years and never had a patient who was so severely dizzy that they needed a wheelchair for an extended period of time, so this is obviously something pretty complex and maybe something that her ENT has never seen before. I would see as many different doctors as possible to maybe find someone who has experience with this type of case. It is impossible for even a very good dr to have seen all rare and complex diseases/disorders.

Of course, this is obviously all dependent on what insurance will approve/cover.

[daisysmom]

There can be types of dizziness that are ear related that are not positional vertigo. Has she had a VNG (video nystagmography)? This is an in-depth balance test that checks for other possibilities. (Neurologist may have done this.) If they want to further investigate any ear-related possibilities, they could see a neurotologist. These are further specialized ENTs who deal only with ear related issues. Basically, combo of neurologist and otologist.

I have worked in ENT practices for 12 years and never had a patient who was so severely dizzy that they needed a wheelchair for an extended period of time, so this is obviously something pretty complex and maybe something that her ENT has never seen before. I would see as many different doctors as possible to maybe find someone who has experience with this type of case. It is impossible for even a very good dr to have seen all rare and complex diseases/disorders.
Of course, this is obviously all dependent on what insurance will approve/cover.

Good points and I appreciate your feedback. She continues to have appts with the ENT doctor and the neurologist (two separate practices) but I am not sure which tests have been done (frankly I am not sure that my sister even knows -- when I asked before if she had looked up things on the internet she said that the doctors have said that the internet is full of misinformation - so she seems to be perhaps a little overtrusting of them and not maintaining the details of what has been done/not done herself.

And I shouldn't blame the doctore - surely they haven't seen everything. I guess I am just exasperated for her. I feel like she is missing out on the prime of her life and the more they medicate, the further into a "hole" I see her getting. To have her quite marching band was shocking - now to quit concert band and be cutting back on school is just mindblowing based on who she was.

The wheelchair, I understand, the school is requiring saying that since she is so dizzy and unsteady on her feet, she needs to use one. But the doctors haven't said not to use it and I understand she used it at the mall too. Mostly though she appears to just be laying around at home during her "off time". But a parent has to be in bathroom when she showers and nearby all the time b/c of the dizzy spells.

And on insurance coverage - they are good savers and I once said to the mother that she may have to go off insurance and pay out of pocket and she said she would do that in a heartbeat if she knew what to ask for.

[TwoBees]

Here's something:

http://abclocal.go.com/wls/story?sec...lth&id=6505198

Also, is it possible she isn't getting enough salt in her diet?

[bnme]

She should definitely see a neuro-otologist that specializes in balance issues. A regular ENT is not the same and a regular neurologist is also different.

My DH had severe dizziness and balance issues that went undiagnosed (or diagnosed as anxiety, or told “it takes time”, “it’s because you have new glasses”, etc) for 2 years. ENTs, neurologists, cardiologists, rheumatologists, etc. tested for EVERYTHING and found nothing. When he saw a neuro-otologist she narrowed it down to 2 disorders based on her office exam, and had it confirmed by a highly specialized CAT scan. He had many CAT scans and MRIs prior, but not one that would pick up what they were looking for.

[almostmom]

Just want to say I'm so sorry your family is dealing with this. It appears to me, from the outside, that there is something undiagnosed going on, and that you should all be working very hard to see lots of docs to try and find one that has an idea what it is. I just can't imagine it's anxiety that is landing her in a wheelchair. Could it be a fatigue disease of some sort?

Anyway, just wanted to send some hugs - it sounds pretty scary.

[daisymommy]

This sounds exactly like stories I have read of how many girls are reacting to the Guardasil shot.
I would ask her mother to look back at her records and see if her symptoms coincide with getting the vaccine.

[pinkmomagain]

If it were me, I'd be getting a second opinion from another highly-recommended neurologist.

[misshollygolightly]

I think that extreme fatigue and dizziness can sometimes be linked to parasites. I wonder if DR has traveled somewhere or might have come into contact with something unusual? Here's an article from the Huffington Post about parasites and fatigue: http://www.huffingtonpost.com/leo-ga..._b_804516.html

I know my aunt had a long unexplained series of illnesses that doctors were ultimately able to connect most of the symptoms to some unpasteurized queso + cat scratch disease.

Surely they've already checked for and ruled out Mono, right? I think Mono sometimes also comes with sore throat/excessive water drinking.

Would some form of Hepatitis fit with any of those symptoms? The excessive water drinking seems like it could point to that.

I don't know. It sounds like *such* a dramatic change in her health in such a short period of time...I'm a little surprised her doctors don't seem more concerned (but I have no medical background...what do I know?). Maybe see about getting another opinion?

[daisysmom]

Here's something:

http://abclocal.go.com/wls/story?sec...lth&id=6505198

Also, is it possible she isn't getting enough salt in her diet?

Thanks for this - I sent this along to her mother.

[daisysmom]

Surely they've already checked for and ruled out Mono, right? I think Mono sometimes also comes with sore throat/excessive water drinking.

Would some form of Hepatitis fit with any of those symptoms? The excessive water drinking seems like it could point to that.

I don't know. It sounds like *such* a dramatic change in her health in such a short period of time...I'm a little surprised her doctors don't seem more concerned (but I have no medical background...what do I know?). Maybe see about getting another opinion?

Thanks for this, and thanks to ALL of you. They did test for mono. I was just talking to my dad about all of this and he says that this is compounded by the mother feeling like a failure for not being able to get this resolved, and the whole absence from "normal life" for DR is compounding on itself. I was the kind of child that would "fake" an illness to get out of doing something. DR doesn't really seem like that kind of child at all, but I am not around her all the time.

I appreciate your feedback everyone. I will probably delete this thread (just in case the mother gets on here and then gets upset that I am broadcasting these issues).