My daughter was diagnosed with ADEM 2 days ago they are not using treatment at the minute because there are very slight signs of improvement. Has anyone heard of the condition correcting itself ???
Beckyt,
If your daughter is improving, that is a good thing. The body can heal itself, however, I would be a little concerned still. Typically, ADEM is very slow in healing; it happens, just slowly. I would continue to be very attentive to her condition and what the doctors are doing. Are these doctors familiar with ADEM? Please keep us updated. What is her first name so I may pray for her? Lynn
She’s named Bobbie. We are being refered to a hospital where doctors are move advanced with condition. She’s in no pain just heavy arm and leg. We are expecting it to be a long recovery but I just wondered wether anyone else had recovered with no treatment
The people I know of, have had treatment. How old is Bobbie?
She’s 14 and seems very positive. We have hospital appointment for a check up today first time they will have seen her since she was discharged so I suppose we will find out a bit more 2day
Staying positive is the best way to help healing. We all have or had different symptoms. I feel my case was a lot less severe than some and I’m lucky. Maybe Bobbie is also lucky. Let us know how her visit goes. I wish you the best. Lynn
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Hi Beckyt. My daughter (Abby 4 yrs old) was diagnosed with ADEM a couple of months ago. She was in the ICU at childrens hospital for a week paralyzed in both legs with no control of #1 and #2 and a concern that her breathing could be affected. After 5 doses and 5 days of Steroids she was at 90# and we headed home. After about 6 weeks, she is 98% and started her gymnastics class again. In our case, steroids made all the difference. We could see tons of improvement within hours. I’m not a doctor but if Bobbie is showing improvements without anything I see this as extremely good. However, as Lynn said above I would still be concerned…
One thing I personally learned from our experience is that you have to really push some doctors to get what you feel is best for your kids. We were sent home from emergency with our child having extreme difficulties with her gait (coordination with walking…dragging one leg) Once Abby had no control of her bladder etc…we headed back to emergency and she went straight to ICU. (about 12 hours later) Hopefully,in Bobbie case, the doctors are at least discussing using steroids. If not, I would bring it up.
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She as started steroid treatment 2day after having a lumbar puncture got 2 go back 2moz and following day 4 more steroid treatment just hope she’s on the mend now . Hope your daughter is still doing well
She’s on her way to healing.
Hi Becky
I was 49 when I was diagnosed with ADEM treatment was held back until another county could
She has now had 3 days iv steroids and as been released from hospital and got 2 carry on with tablet form of steroids 4 the next 4 weeks. She is showing signs of improvement but the lesions av shown a slight increase which is my only concern now as I expected them 2 decrease on recovery
Beckyt,
When I got out of the hospital, my improvement regressed for a couple of days, then I started to improve. I lost all use of my hands and had to learn to use them again. It took about 4 months before most of my hand issues truly improved. It date though, 3 years later, I still have symptoms in them, but they do work. And…I am nothing like I was in May of 2013.
Try and control, or help, your daughter’s stress level. Stress will make her healing slower and tougher. Celebrate each and every improvement. Is she better today than yesterday… Is she better today than when she was diagnosed. One day at a time…keep her plugging ahead. Lynn
My treatment was 1000mg of steroids once a day for a while. That helped the legions calm down. That was my treatment.