In dire need of a Dr. who specializes in Conversion Reaction disorder

[andystratts]

After 4 months, 10 specialists ( including 3 neurologists, an NYU movement disorder specialist, an infectious disease specialist,2 pediatricians, 2 child psychiatrists, and a CBT therapist) we have finally received a formal diagnosis for my thirteen year old son as having a conversion reaction disorder. His symptoms have ranged from full body "electric surges" to a continuous hand tremor affecting his writing, to recently wave after wave of excruciating pains from his neck to his feet for hours to recently being unable to walk normally ( vey slow gait/pace) I have been told that three in one hundred psychiatric patients have this, so finding the right Dr. may be very hard. His current psychiatrist has clearly told us it is beyond him and his group.PLEASE!!! My family is in hell right now so any help would be appreciated.

[Kevin Kennedy, Ph.D.]

You have certainly consulted with a wide range and number of professionals. I do, however, have to advise you that sometimes a diagnosis of conversion disorder results from an inability to determine a medical cause more than any conviction that the physical symptoms are due to psychogenic factors. In other words, the diagnosis is sometimes afallback of default diagnosis. Some of your son's symptoms make me suspicious that the diagnosis is reasonable. Somatoform disorders in general can be difficult to pin down because they often involve subjective sensations (e.g., pain) which are not subject to objective confirmation or measurement. Do you have an idea of the psychological conflcit or stress that allegedly are associated with your son's physical symptoms? Have there been any findings on the brain studies?

[andystratts]

Sorry , I am in the central NJ area.

[andystratts]

My son was diagnosed with general anxiety related to the start of school two years ago (when starting 6th grade/ a new school) He began Zoloft @ 50mg daily and Cognitive therapy. By mid 7th grade he was titrated off the Zoloft and had the anxiety managed through his "tools" At the start of 8th grade (same school)he began to exhibit anxiety again but using his behavioral "tools" managed it for about three weeks. Then at the start of the fourth week, right after I (dad) left for a 5  day trip to mexico... All hell broke loose. He had full blown panic attacks followed by "electric surges" through his body and extreme weakness. He immiediately restarted Zolft and quickly titrated up to the 50 mg. dose. Within roughly 2 weeks, the anxiety was managed, the "surges" were gone,  but a tremor had settled into his hands that destroyed all his writing ability. For the next three months we went from Dr. to Dr. trying to find a cause and fix... The only concrete organic findings were that of elevated strepp antibodies. He had a sore throat over Labor Day, when taken to the Dr., a rapid strep test showed negative, as per the Dr, we treated with Advil and the sore throat went away. When the antibodies were found, another rapid test was given along with a culture. The rapid was again negative but the culture was positive. He was immediatly treated with high doses of antibiotics. Since then he has been diagnosed with non classic symtoms of Sydenham,s chorea, and PANDAS however none of the "specialists can agree because none of his symptoms are "classic" some are saying a combination of both while all three separate nuerologists are saying it is purely psychogenic. My son managed all of this diagnosis time very well. Still pulling honor roll while having to spend 3 hours a night on his homework, using tape recorders and the computer. He participated playing on the football and basketball teams. He attended school dances etc. All until last week, when for no known stressor reason....the electric surges returned with intense pain to the point where he was admitted to the hospital for three days, again with no firm resolution. He was released. Now he and my family "are done" we have hit the diagnostic wall.The "surges have stopped but he can no longer walk faster than a 90 year old man, stating balance issues.... The last stop was a Dr. In NYC who is very confident with all the data produced, it is a conversion disorder. I cannot tell you how scared we are for our son... He is a great kid and we as parents just don't know where to turn. Any insight, direction etc, please help us.
Thanks

[andystratts]

Sorry, the EEG was normal.

[Kevin Kennedy, Ph.D.]

I can see why the suggestions of Sydenham's and PANDAS have been discussed, and it is likely not a coincidence that your son experienced some streptococcal infection. Have there been any recommendations to treat with salicylates, steroids or anticonvulsants? It might be useful to treat the anxiety component with  either high doses of Prozac or with Luvox (probably moving up to a high dose). Given the nature of the movement disorder I am not convinced that this is a conversion disorder. Whatever the case, the anxiety component can be treated, and treatment with SSRI is usually recommended. Because of the importance of pharmacological treatment, a psychiatris would be the preferred type of mental health provider. Have you contacted one of the teaching hospitals (e.g., Albert Einstein College of Medicine, New York University Medical School) and their psychiatry departments to ask about a specialist?

[andystratts]

In answer to the meds used thus far: Zoloft 50 mg a day (stopped to rule it out 6 days ago and replaced with a placebo), Anderol 10 mg a day to help the tremor (used for 5 days with no results then stopped to rule out all meds as possible side effects), and a monthly injection of Penicili G which we were told by the infectious disease Dr. should be done to protect him from strep till age 21 (a VERY PAINFUL injection), and Adavan as needed during the "explosive" times, which we stopped fearing a paradoxical behavioral reaction once it built up in his system..
Regarding the teaching hospitals, yes, we went to NYU child study center for movement disorders and saw Dr Barbara Coffey who spent 3 hours with us. Her feelings where strong towards a combination of Pandas and Sydenhams first, then check for Lyme (negative), then titrate off Zoloft (side effect), then lastly Conversion....
This morning marks day 8 of being unable to walk properly, and of course, the continued tremors. Can you reccomend any places in NJ???
Also, you stated based on his symptoms, you are not confident in a Conversion diagnosis. We realize the anxiety is there and needs to be treated, but what else??? possibly pediatric MS???

[MLWTR]

Just a thought, but you might perhaps want to take a look at this link on periodic paralyses, which present with episodes of muscle weakness. (I'm not sure if this will appear as a hyperlink, so you may have to copy the link into your browser bar rather than just click on it.) Good luck.

http://www.clevelandclinic.org/health/health-info/docs/2400/2452.asp?index=9499

[Kevin Kennedy, Ph.D.]

You have gone to the best when you saw Dr. Coffey. It's not within the scope of my expertise to comment in any detail on the non-psychological aspects of your son's condition. When I say that I am not convinced of the Conversion Disorder diagnosis, I am referring to the fact that the particular symptoms your son displays are not really typical of the disorder in children his age and more likely represent organic pathology. In New Jersey, you might contact the University of Medicine and Dentistry at Rutgers, and also the Children's Hospital at Hackensack University Medical Center.

[andystratts]

Thank you, in Fact I have an appointment next week with Dr. Gary Walco at Hackensack University Hospital. I am hoping he will be able to get us through this. I found him yesterday when he was referred to us from our original psychiatrist involved.Are there any other "organic avenues" you can suggest researching before resigning to this diagnosis???
I still cannot believe the mind only..is capable of producing all of these symptoms
Again, thank you in advance

[Kevin Kennedy, Ph.D.]

No I can't suggest other explanations, other than to say that I am skeptical about the Coversion D/O diagnosis.

[gguest]

Trust your own instincts more than any top doctor.  We were also told our daughter had a conversion disorder & written off by many "top" doctors. Talk about trauma- imagine being a sick kid & having numerous doctors tell you they can't help you & you must have a mental illness. My daughter was convinced she was crazy, dying or both. None of those doctors who wrote her off as having a conversion disorder could recommend a specialist for us to consult with.  None of them was willing to help arrange a psychiatric consult.  No idea what the gain was for her in these symptoms or what could have been so traumatic in her life.  None even wanted to talk with the psychologist she was seeing to help her cope with her anxiety about her symptoms.  It was just a way to write her off & look at us as if we were abusive or crazy.  Turns out she has lyme disease- the test 3 years ago was negative (now we know the tests aren't always reliable), but we now have very positive tests (&  a late stage more complicated illness with an uncertain prognosis) as well as another neurologic condition- narcolepsy.  My best advice, if you continue to look for a physical cause is to NEVER NEVER mention conversion to another doctor.  As soon as they hear that it has been called conversion, they almost all start with that assumption.  There is a psychiatrist in Red Bank NJ who is familiar with neuropsychiatric symptoms of Lyme and several other physical illnesses who may be worth checking out if you are in NJ-Robert Bransfield.  He is used to patients with physical illnesses that have a psychiatric piece or that were written off as psychiatric.  Just an idea.  And by the way, despite extensive research, I never did find the name a specialist in conversion despite asking several doctors and contacting psychiatrists at all of the major medical school and hospitals in our area.

[wearymom]

A related discussion, Conversion disorder was started.

[laceyday]

A related discussion, my daughter has been diagnosed with conversion disorder was started.