Encephalitis and Narcolepsy

We had been told our child had a form of Encephalitis and we just got back from the Hospital and have been told now it most likely is Narcolepsy.
The doctor's have done many tests, two MRI's, two EEG's and a spinal tap. They have checked for West Nile and have taken over 30 blood samples. They haven't really found anything wrong.
Our son came down with this about 3 months ago and his behavior has changed, he does fall asleep at times and his night pattern is bad. He also has fits where he loses his balance and has a blank look on his face. He was put on steriods and gained almost 40 lbs on his 58 lb body that has caused many other problems.
Of course now they say he didn't need them and is being weaned off them.
As parents we are coping but really feel that because the Doctor's can find what it is they are now saying it is Narcolepsy just to say something.
Again we have him home and are not closer to having him cured or treated, or understanding what we should be doing.
We will be trying to find another place to take him to see if they can fiqure out what he has. Of course he is totaly fed up with tests.
Thanks for any feedback.
Qmax

By MichelleN
Posted August 17, 2008 at 7:12 am
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I can't help you with the diagnosis, but I can tell you that I was really fed up with the tests at first and sometimes now I'm fed up. I hope they find something out soon so you at least know what you are dealing with.

Michelle

By Paulinha
Posted August 17, 2008 at 6:32 pm
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This is so hard for your son. I was in a coma while they did my tests, so I don't remember a thing.

I have Encephalitis (don't know what kind). But I get a lot of body shakes, blank stares, seizures. My son has called 911 a few times for me because I just turned into a zombie - so maybe they missed something, because these body shakes are starting to happen more often.

My prayers are for you.

By MichelleN
Posted August 18, 2008 at 8:50 am
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I found that research was a big help with me getting better. My families support was a major help as well.

My doctor is sending me to another brain specialist and I keep telling her that the last 3 times didn't help. They just kept asking me questions I didn't have any answers for. It was really frustrating and for 2 or 3 days I spent all my time in bed.

I found that some of my doctors that aren't brain specialist helped me as much as my brain specialists. My stomach doctor told me to keep a medical journal and that really has helped me. Many of what has helped me came from going through that journal to see what possibly cause what.

I sure hope you find out the problem soon so you can feel more confident on how to help your son.

Michelle

By shazza1008
Posted August 18, 2008 at 10:13 am
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hi
l was totally out of it while they did tests, l only know what my family told me after, l can only imagine how terrified they must have felt as only the year before this happened to me my niece ws rushed in only the year before with transverse myelitis and all the family were scared to death! l suddenley start staring blankly into air and although im aware of doing l cant seem to focus on anything!
sharon

By countingsheep
Posted August 27, 2008 at 2:47 pm
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qmax, did your son do a sleep study? If so, the docs should be relatively certain in he is showing a narcolepsy pattern... Also, there are genetic tests to show if he has markers for narcolepsy. Ask your doc about them?

I was diagnosed with "non-REM narcolepsy", before my E diagnosis. But I now believe the sleepiness was just a symptom of the E. E definitely leaves you with excessive sleepiness. My MRIs and EEGs were clean. I have sleep attacks though which can be similar to cataplexy...

While I'm not a doc, I highly doubt narcolepsy if his symptoms came on so suddenly. Usually people with narcolepsy exhibit symptoms their whole life, sometimes getting gradually worse.

You definitely need a VERY good neuro who has both a sleep specialty, and an understanding of brain injury. Not easy to find... My experience was that most look for MS, then write you off to a psychiatrist if they can't figure you out...

I think a change of doctors is in order... Find a good neuro! And keep us posted.

By qmax
Posted August 27, 2008 at 8:36 pm
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Txs Everyone for you info and suggestions. We have had our boy tested for the Genetic markers and he does have them. He has a sleep test scheduled for Sept 15th in the Calgary Hospital. Right now he is getting worse as he always says he is pulsing and his head keeps bobbing. Then his eyes glass over and his speech goes and then his legs start bouncing. This is usually started by some emotional stimuli. He does want to sleep alot. We took him to a natural Doctor and she thought his liver wasn't working and his adrenal gland was overworking. She also thought he had a parasite in his brain.
It is a very hard road to go down but we do appreciate everyone else's situation and your words of advice.
Txs
Qmax

By one_lil_red_hen
Posted August 27, 2008 at 11:41 pm
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Are you close to any large University? If dannon pops his head in here, I'm sure he can direct you better for a second opinion.

Let's see, I'm trying to remember, I think it's the Mayo Clinic that you can send your son's records to and have them reviewed without even going there.

I know you and your husband must be very afraid to not be able to find definitive answers. I'm sorry your son has had the steriods and gained so much weight, I'm sure that isn't helping.

How old is your son? What types of doctors has he seen?

I'll be keeping him in my prayers for his recovery and for the answers to the question of what is wrong.

~hen

Welcome to Inspire!

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