Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM - Flu Shot Related


#1

Dear ADEM community,

HELP !! PLEASE.... I could truly use some advice from those of you who have suffered from ADEM as a result of getting the flu shot.

My father was given the new Fluzone Hi Dose flu shot (for people over 65) on Thursday Sept 19th. Let me start out by saying that my father is not a typical 84 yo. man. He still works, goes to the gym 3 x/week, drives a car, etc. He started to develop odd symptoms over the weekend, sleeping very late (not like him), right sided weakness, confusion, etc. By Monday AM, he was admitted to the hospital by ambulance. He spent 4 days in a vegetative state. He was tested for every infection under the sun, stroke, etc. All tests came back normal. He had 4 normal CT scans, a spinal tap that showed no infection. [ He was not able to get an MRI because he has a pacemaker.] He finally received high dose IV steriods" as a last resort" and he regained consciousness. His cognition slowly improved.

So, although ADEM is all over his chart, the neurologists are not 100% sold on this diagnosis. His oral steroid tapering regimen has been over a 10 day period of time, and now that we are getting close to the end of his steroids, his symptoms are returning. Essentially after 8 days of tapering, we had our father back "mentally” for 1 day, and now he’s slipped back into a "mental fog" as his steroid dose was lowered further. I have little confidence in his doctors' ability to manage his condition properly. They seem to be "shooting from the hip" as far as his steroid treatment goes. They bumped his dose up a small amount and are waiting to see if he responds...He was tapered over 10 days to 10 mg Prednisone, and he has been bumped up to 40 mg a day [at our insistence, and with no real plan at all].

Could you please share your experience regarding the dose and length of time you took oral steroids to treat your condition? Do you know of a doctor in the Midwest (or anywhere for that matter) who is well versed in treating ADEM? We are on day 19 in the hospital...in Cincinnati, Ohio.


#2

Hi Nad. I hope you are still out there. I just joined recently. My husband is 65. He received the flu shot in Oct. 2012. I noticed some changes in him for about 2 months before he actually had a severe enough event to know for sure that he was not normal. At first he was fatigued, mentioned he had a headache, and there was a slight drag to his left foot. It was so subtle I wasn't sure I was seeing it. Then in January, 2013 he started walking very badly and was in a wheelchair w/in a month. He was never hospitalized, but was put on steroids. He slowly improved but has not improved even 70% of what he was before. He has days where he is not good and I have some of the prednisone left over. When he takes that for a few days he gets better. We are the west coast, so I don't know anything about the Midwest. How is you dad?. That is pretty old to go thru this. Even 65 is not a strong age.


#3

I want to add that my husband was started at a dose of 60 mg prednisone for 2 weeks and then would taper down 10 mg every 2 weeks. It took awhile to finish the regimen.


#4

Hi.

Welcome.

He was severly impaired for about 3 months [till ~ mid-December 2013]. However, with a lot of therapy and work, he has improved considerably.

My dad is 6-7 months later even now still improving but it has been slow if not subtle. What has possibly helped the most is focusing on gross motor skills, i.e., exercise. He goes to a trainer 2 X a week and he is trying to get more active. He still sleeps excessively, but there it is. His food tastes have changed rather dramatically. He has been eating a lot of sweets, not typical for him. Again, oh well. Could be worse.

Your husband's illness is quite different than my dad's. Have your doctor's diagnosed ADEM officially? Do they write down and say it is from the flu shot? Important, since compensation can be provided to assist in Recovery.

This is a journey, not an event. The residual is in most cases will to some degree last forever. That doesn't mean quit, it means persevere! However, for us as a family it has been life altering.

Keep in touch. And good luck.

Thanks.

Nadine


#5

Yes. My husband has been officially diagnosed w/ ADEM due to the flu shot. He too sleeps a lot and will stay in bed as long as he can before I talk him into getting up. He also has a taste for sweets, but it was worse while taking the prednisone. We are trying to eat less sugar and carbs right now as I have been reading a book called Grain Brain that talks about how gluten sensitivity and sugars contribute to inflammatory response in the body and it can effect the brain. Don't know if it will help , but it can't hurt. He has been thru physical therapy to help strengthen and work on balance but they gave up on him because they said as long as he is hyper reflexive they do much for the balance. We still work on strength at home. You're right. It is a journey and we are learning and coping along the way, but it is hard when other people don't seem to understand his limitations.