Acute Disseminated Encephalomyelitis (ADEM) Support Group

Recommendations in Texas?


#1

I need help in Texas I feel alone and hopeless my daughter needs help and MRI come clear but her behavior is changing


#2

Hi there, I have been living with ADEM since 2007, I’m 54 years old. what kind of other test has she had done besides the MRI? Did they do a contrast when she had an MRI?


#3

I’m back in the children’s hospital she was acting very restless and her eyes would roll back she got another MRI came back with white spots all over they said this is what causing her to act psychotic they gave her medication and is starting IVIG something treatment something like that


#4

Sending lots of strength to you & your daughter. Unfortunately sometimes ADEM relapses/repeats, especially in the first few months. Sometimes we can be diagnosed with ADEM but misdiagnosed, it’s something else? Hope the IV’s are a success. How is she doing now? Regards from Aust. Natalie


#5

My 5 year old daughter has also been diagnosed wit adem since January of 2018 she has had 3 lapse since she was diagnosed, we just got out of the hospital this Friday due to going blind in her eyes the disease is now attacking her eye sight, she’s also walking funny n sticks her belly out really far makig her have n arched back, does your daughter have any of these symptoms or has she had any of these issues, my daughters case got so bad to the point she was no longer walking or sitting up on her own but wit physical therapy and ot she is almost back to base line besides the eye site and walking funny again


#6

My daughter has also had two treatments of ivig since Easter she’s getting it every two weeks now, plus steroids every day tappering for a month


#7

You are very lucky. DR. greenberg…if not…find him in Texas. Symptoms appear where the lesions are. They probably won’t tell you that. Let the doctors do what the need to kill it. Once they are not active anymore then you can begining to heal


#8

@Audrysmom
Is this the doctor (click on the blue) who you’re referring to,@momof4? He’s certainly qualified in the right area, and one of his bios mentions behavioural problems.

Audrysmom, Texas being a huge state, are you within striking distance?

Seenie from ModSupport


#9

Yes… Dr. Benjamin Greenberg. That is him. I forget that yes Texas is quite large…lol. but he specializes in ADEM and audio-immunity cases. I am here in NY. WHERE every doctor agreed on the ADEM diagosis, they denounced any of his psychosis and seizers were not related.


#10

She’s done with the IVIG and started steroids she has episodes no matter what and she wouldn’t have them as often at home they give her psychotic medication and I think it makes it worse I’m so confused . She is angry and episodes are rolling her eyes back and screaming that her body and eyes hurt . They did new MRI spinal cord and pelvis