Dr.s are stumped in Chicago

[AmyBeth]

She has Dr.s baffled and even her Neuros in Chicago at Children's are interested in someone else to look at her case. She has had countless MRI's,lp's,and an angiogram.It started in Jan of 2001 at age 7.She had headaches and low grade temp.She went into a grand mal that lasted 15 minutes.They did an lp which showed an increase in her wbc count and an MRI which showed multiple lesions.They diagnosed her with ADEM.After 2 weeks and her fever getting up to 105,they sent her to Mayo. They concurred with our local hospital. She started getting better in March.In June,she started having headaches and had a low grade temp.After 3 weeks and getting worse,they admitted her and did an lp which showed her wbc count at 78 and traces of myelin and protein and an increase in the csf pressure but no Obands.She had an MRI which showed multiple lesions and Optic Neuritis and another sinus infection and they transfered her to Chicago.A scan last Dec showed them almost resolved.In June02 her MRI had new lesions.In July she started developing headaches and started running a low grade temp.This intensified and her temp was rising and she was vomiting and so I took her to a local ER where they immediately did a cat scan and lp which showed her WBC count at 416.They transferred her to Chicago where they did another MRI which showed the lesions from June either completely resolved or getting better but it showed 3 new lesions.They are baffled and thought that the diagnosis of MS needed to be re- evaluated.I am willing to travel anywhere there may be a possibility of someone to help her. Any ideas?

[mikesgirl]

If there is any chance whatsoever that your daughter may have been exposed to Lyme, it's imperative that you find someone who will treat her as if she has it.  She clearly has some kind of recurring infection going on, and her symptoms sound a lot like some stories I've heard of undiagnosed Lyme Disease.  There are a bunch of good websites out there on the subject, and there are a lot of doctors who are, for some reason, reluctant to treat it or even diagnose it, but the diagnostic tests for it are notoriously unreliable.  I know there is also an almost underground group of doctors who aren't afraid of it, though, and you can probably find them by plugging Lyme disease into a search engine.  I wish I had some good links for you, but right now I just don't have time to do it.  Please follow up on this possibility.  Titers and other tests miss it all the time.

[Colleen Johnson]

My daughter, at age 24 was diagnosised with ADEM Sept '99.  Before we got to that diagnosis we had quite a battle as well, a couple doctors thought she needed emotional therapy and that nothing was wrong until they did the MRI and her brain lit up like a christmas tree.  Early on we started to keep a log during the day of the time, what her temp was, rated her headaches on a scale of 1 to 10, was she having double vision, anything that would showed a pattern or record of what was going on.  Most of our doctor appt's were early in the day before she would get tired and fatigued.  Hope this helps.

[CCF-Neuro-M.D.-JT]

Sorry to hear about your daughter. It sounds like she's had a rough time and despite an extensive workup, no definitive answers. It is concerning that her wbc in the spinal fluid continues to be so high. Although MS and ADEM are a consideration, Infection such as an encephalitis or abscess is certainly a major concern. Hopefully, they have sent off the spinal fluid for special cultures. One thing that could possibly be helpful is a brain biopsy of one of the lesions if it is close to the surface and if nothing can be figured out. This can be sent for culture and special testing, but is of course quite invasive and drastic and should only be done after careful evaluation by a neurologist and neurosurgeon. If you are really able to travel anywhere, the top children's hospitals in the country are Boston Children's (Harvard)and CHOP (U Penn in Philadelphia). UCSF in CA is also very good. Both Infectious disease and Neurology should be involved in the case. Best of luck.

[AmyBeth]

Taylor had her hospital follow up visit today.  Once again, all of the test have came back normal.  There were no o bands and the IGg index was normal also.  During her eye exam, he said that he could tell there was still pressure and to just continue the Diamox to slow down the spinal fluid.  They were not given any new clues by repeating the tests they have done or from any new ones they have thought of.  I asked him what he would of diagnosed this as if it was the first time he had ever seen her and there were no relapsing prior to this and he said he said he would of diagnosed her with viral encephalitis but knowing about the relapsing course this has had, he can't say that is what this is.  He also said that even though they don't know what they are dealing with, they could always start with giving her the antibiotic acyclovir to see if it would help but I don't know at what point they would do that. After an hour with him, we left in tears still with no answers. He gave me a name of a Dr. at the University of Virginia, Dr.Robert who has done the most recent studies on demyelinating diseases in children but I can't find any of his studies on the internet. Once again, we have hit a dead end.

[AshleysMommey]

The doctor that treated my daughter for lyme has seen many atypical presentations of lyme.  He's treated over 5,000 kids with all kinds of presentations.  I would STRONGLY suggest you consult with him.  My daughter was bit by a deer tick attached over 3 days and had a classic EM rash.  I did not get her treated at the time of the rash because I had never heard of lyme.  A few months later when I matched up her symptoms and remembered the tick bite and rash, she was tested for lyme and it was the same story you are hearing.  "If she had lyme, her titers would be different".  I have talked to MANY, MANY people who had lyme and still had negative "titers".  There is a huge controversy over lyme and how it is diagnosed and treated.  We are very fortunate that I found this doctor because my daughter is now completely well after missing almost 2 years of school.  We went to two major hospitals and they refused to diagnose or treat her in spite of her history of tick bite and rash because of the allmighty titers.  There are probably better tests and labs that can perform these tests (they are not standardized).  Please e-mail me and I can send you this doctors info.  ***@****

[AmyBeth]

Thanks for the thought, she has been tested for TB a few times.  A type of chronic meningitis has been brought up though.

[Shanny]

I personally have Lyme. And yes you cannot rely on titers. they just arent 100%. TB MEningitis is extreemly rare as it is not TB it is a meningitis that responds to TB Treatment. I wish you the best of luck. And it couldnt hurt to have Ashlees doctor review her charts and test results. Love and Hugs Shan

[Abbey]

What are titers?

[AshleysMommey]

FYI: http://www.sanytel.com/consuAest0002.htm

[Shanny]

This may sound odd. But i have a question you might ask. My best friend when she was little had the same symptoms. After 6 months in the hospital she was diagnosed with TB Meningitis. I know its far fetched but you could ask. Best  of luck

[AshleysMommey]

Just curious,  why was the angiogram done?  Was she having heart symptoms?  I'm not sure how I stumbled onto this site, but you should know that lyme disease can be misdiagnosed as MS and the symptoms are similar.  Sounds like your daughter doesn't fit the diagnosis of MS (which isn't common in children anyway).  Most research hospitals aren't good at diagnosing lyme if the test comes up negative (which can happen). I'm not sure if they have considered lyme as a possibility - they often do not. At the minimum, they should be running lyme tests on her CSF fluid and blood.  I know a great (the best) pediatric lyme doctor you can talk to to get an idea if this is a possibility with your child and could give you a better idea of the testing that should be done and best labs to use for the most chance of an accurate test.  Please e-mail me if you want more info.

[AmyBeth]

Hi,
Thanks for the response.  She has been tested for lyme disease at the first onset. I am not sure if they did any repeat testing for it but she has an appointment on Friday and that is one of my questions. At the last hospital stay, it was brought up again by me and they said that her titers would be different. I am still not happy with the response from the infectious disease department. She had an angiogram done of the brain to rule out any vasculitis disease. It didn't show anything. We have been round and round again with this for a year and a half now and I am ready for my daughter to have some relief. She has never had any problem with mobility of any limb.She isn't following anything textbook and they have been doing the best they can. The funny thing is that with each episode, she has had a temp and headaches and sinus infections and her csf white blood cell count has gone up each time. I never did see how they could just dismiss those factors that don't go with MS. I thought that you were not suppose to rely just on the MRI to diagnose MS. It was very interesting because also at the last visit, they told me that usually with MS, there are residuals from the lesions but there aren't any with hers. She also had a bout with uncontrollable movements with her second episode that some Dr.s tried to shove off as psycological but I didn't want to buy into it. I ended up videotaping it and sent it to her neuro in Chicago and he said he has seen movements like that in demyelinating diseases. I have been studying as much as I can so that I can understand what they are talking about when they talk to me and I do know that this doesn't sound like it.  There is an MS specialist in Chicago by the name of Bruce Cohen who also isn't convinced that it is MS and he is the one that ordered the angio of the brain. How funny is that for there to be a Dr. by the same name at the Cleveland Clinic! I would love to hear any more ideas and the name of the Dr. you are talking about.  Where is he located? Thanks again,,, Amy,,, Mom of Taylor