ADEM and Kawasaki

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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ADEM and Kawasaki

Postby LelaSt » Tue Apr 13, 2010 7:11 pm

My son Sam is 4 years old and was just diagnosed with ADEM. Just over one year ago he was diagnosed with Kawasaki's Disease. Has anyone else experienced both of these conditions or does anyone know of any relationship between them?

-Lela
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Re: ADEM and Kawasaki

Postby marieke » Thu Apr 15, 2010 12:27 pm

The only "link" between them is that they are both autoimmune disorders. Your son seems to have a very active immune system and it does not recognize "itself". Meaning his body attacks his own systems.
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Re: ADEM and Kawasaki

Postby LelaSt » Thu May 20, 2010 9:25 pm

Can anyone provide me with the name of an immunologist who has experience with KD and/or ADEM? I have lots of questions about the future such as...

Since the doctors feel that the ADEM was brought on by a virus or his MMR booster or both, should we stop or space out his immunizations? Should we have him immunized at a different time of year when it is not cold and flu season? Does it only matter if they are "live" vaccines? If he starts getting sick so we suppress his immune system to prevent it from going into overdrive? Is there an increased likelihood that he will have other auto-immune response disorders? If so, what are they?

I am sure I will have a million more, but Sam's pediatrician and allergist have no insight and neither does his neurologist. Any ideas or names would be greatly appreciated. I thought about email Dr. Burns again but I lost her email. Does anyone have it?

Thanks!
-Lela
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Re: ADEM and Kawasaki

Postby Shirley » Fri May 21, 2010 1:19 am

You'll need to get direction on his vaccinations from his Paeditrician. I was told to never have any vaccinations of any kind ever. I do know people on the the forum that have the fluvax each year with no problems.

With an over active immune system, vaccinations stimulate the antibodies, I can't answer your question about 'live' virus vaccinations, I don't know enough about kiddies vacc's.

Best of luck with Sam's recovery.

:)
Keep well



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Re: ADEM and Kawasaki

Postby LelaSt » Fri May 21, 2010 6:40 am

Thanks Shirley.

It is just so frustrating because his pediatrician has been practicing for 50 years (literally) and has never seen ADEM.

Can anyone give me some names of some well-known specialists? We are located in Denver, but anywhere would be fine.

-Lela
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Re: ADEM and Kawasaki

Postby earthvibes06 » Mon Jun 28, 2010 1:34 pm

Lela,
I found a pedi neurologist at the Cleveland Clinic that specializes in demylinating disorders and white matter lesions. I have not spoken directly to this dr, but my son's pediatrician has. I don't feel comfertable posting his name on the internet, but if you search the Cleveland Clinic's doctors, I'm sure you can find one in their neurology department that can help you.

You can also check out my post about vaccines here. the anwers I received about my sons immunizations were from Dr. moodley.

And about ADEM and Kawaski, after my son was diagnosed with ADEM, about a month later, I thought he got Kawaski. His pedi says no, but I don't believe her. I got her to schedule an echo-cadiogram(sp?) and it's next month. He's acting fine, but he had a weird rash on the tops of this feet following a low-grade fever for 5 days, and then his hands and feet started peeling bad for about 2 weeks. I'm hoping I'm just being over paranoid about it and his pedi is right, but the cardiogram will tell for sure. I just hope there was no damage done to his heart. I'm crossing my fingers.
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Re: ADEM and Kawasaki

Postby LelaSt » Mon Jul 26, 2010 1:46 pm

Thank you SO MUCH for your information about the vaccines. I know you said you don't feel comfortable posting the doctor's name, but if you would be willing to send it to me via email, I would really appreciate it. My email is lela.perkins@comcast.net.

Has your son had his ecocardiogram yet? If so, what were the results? Several of our doctors searched for a link in the literature and found only one mention of a child with both conditions.
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