How is your nephew doing?
Hi,
I received Tango Call from my sister and showed me my nephew thru the cell phone.
During three weeks in rehab, my nephew is getting better slowly and yesterday when I said that I love you and I miss you to my nephew and my nephew said very slowly that I love you and I miss you too. It is really amazing improvement and miracle to us.
Brian is smiling whenever he open his eyes to everyone and start to talk slowly ' Mom" " I love you" I miss you"
and left arm slowly moved and try to grab something with his left fingers. Thanks God and I hope my nephew will be back to his original status. I believe he will be very normal like before.
Thank you
That is wonderful news!! So happy for your family 
Great new Yoongil! I hope the progress continues. I would expect your nephew to be easily fatigued as he recovers, but that will go away over time. I would also expect him to be a bit more emotional than before - easy to cry, maybe a little angrier than before. This too should hopefully dissipate over time. Keep up the rehab for as long as you can - the earlier he makes progress the better. Best wishes to your whole family. Ken
Hi Yoongil - How is everything going with your nephew? I hope the progress has continued for him. Best, Ken
My Daughter's Story-Hope this helps you.
My daughter was diagnosed with ADEM in 2004. The doctors found lesions on the back part of her brain which caused hydrocephalus because her spinal fluid could not drain.
She had such intense headaches back then. She was only 7 years old. Local doctors could never find anything wrong with her for months. I finally just took her to the Emergency Room and there they found the fluid on her brain. We were rushed to the nearest children's hospital, Kosair's in Louisville. Dr. Puri diagnosed her with ADEM and cured her with high doses of IV Prednisone. He had only seen one other case of this in his practice and I feel we were blessed to have him. The medical neurologist wanted to place a shunt in her head to remove the fluid because she became lethargic. I remember Dr. Puri saying just give me 30 minutes. Of course, I was hysterical.
He said he had to turn off her immune system because it was attacking her brain. He thought it was due to her having a recent Strep Throat infection. He said ADEM occurs when your immune system tries to fight off a very bad viral or bacterial infection and attacks normal cells too because they may have the same tissue similarities. Within minutes, she came to and said that her head wasn't hurting anymore. Words I had longed to here for months!
She was in ICU for about 3 weeks and came home on lots of steroids. I had to crush pills and put them in pudding. She gained a lot of weight on the steroids and we slowly weaned her off of them. Follow up MRI's and CT's revealed abnormal shrinkage on the outer surfaces of her brain thought to be from the fluid that had been on her brain for so long. There were concerns that she might suffer cognitively. I am proud to say that she is a straight "A" student and know that God blessed me with a miracle.
I really want to help anyone that is suffering through this. I was so scared when she was so sick. I worry now because she recently got Strep Throat again, finished an antibiotic but is still having intense headaches. Last week I had her retested for that and Mono, both negative. I just got off the phone with the Neurologist on call at Kosair's. He ordered bed rest, no caffeine, and no pain medications over the weekend. If she is not better, we are going to do another CT or MRI. He said sometimes you can over medicate on over the counter pain medications or caffeine that can cause intense headaches and that it was highly unlikely that it was ADEM again. Praying this works. Blessings in Christ to you all.
Hi All,
My nephew is in hospital for almost three months now. After two months , day by day, He is getting better and showing amazing improvement. All medications are not required to my nephew and he needs rehab. gradually his right hand and right side coming back to a little normal not perfectly. I hope he will be back to when he was very healthy.
my nephew might be discharged on 1st week of march and he needs rehab as outpatient. Thank you so much for your warm words and God bless you all. Thanks
How wonderful, Yoongil. I'll bet you can't wait until he is discharged and back home again. Sending good wishes your way,
Great News!
Yoongil said:
Hi All,
My nephew is in hospital for almost three months now. After two months , day by day, He is getting better and showing amazing improvement. All medications are not required to my nephew and he needs rehab. gradually his right hand and right side coming back to a little normal not perfectly. I hope he will be back to when he was very healthy.
my nephew might be discharged on 1st week of march and he needs rehab as outpatient. Thank you so much for your warm words and God bless you all. Thanks
Hi ,
My daughter has gone through 5days of icing and it doesn’t help…now she’s going through Plasma Exchange, Dr ordered four days for her…today is her 3rd day and there is not much respond…anyone knows what treatment if PE doesn’t work well?
Kristy
Kristy: My daughter had five episodes of exchange and came out of her semi-comatose stage. I hope that will work for your daughter.
Hi how is she feeling after th PE?
Hi .
No much respond after PE, the fever has subsided after a week.it came back yesterday and Dr has to put her under a cooling blanket.
She might have to be injected with chemotherapy drug called cyclophamide next week ,as the drug is very strong the Dr will ask for second opinion.I am pretty worried …
Anyone has been through this treatment?