Hello, my son was 2 years when he diagnoses with adem. it was 6 months ago. he took cortisone .I am asking how can i know that the inflammation is stopped ,and is there another treatment of the inflammation in your country and for how long? I am worried about him . thank you all.
Hello Enas,
My son, Matthew was diagnosed in March this year. According to the doctors his case was quite severe. He received IVIG for 3 days and intravenous steroids for 3 days and then was tapered on prednisolone (steroids) for 6 weeks. He had a follow-up MRI at the end of May and this showed that many of the lesions had disappeared. Has your son shown some improvement since his diagnosis? I think every case is unique and recovery time is different for everyone. After 8 months since diagnosis Matthew still does not have complete control over the right side of his body but considering he could not sit or swallow for 4 weeks this is a big improvement.
How long did your son take the cortisone for? Has your neurologist recommended a follow-up MRI to see if the lesions have decreased or disappeared?
My son also was a very severe case. He was completely immobile, incontinent, encephalopathic in every way, sustained clonus in four limbs, no awareness of surroundings, tube fed, etc. So severe. started with IV steroids which had no effect. He had plasmapheresis 8 times in ten days - very little effect. He then was given IV immunoglobulins and that seemed to do the trick for him. He started regaining control of his body finally, speaking, etc and he made a rapid recovery. He started kindergarten independently a few weeks later. He was on a prednisone taper and was on gabapentin for pain and had z follow up MRI three months after discharge which was normal. Where are you located? Is iVig an option for you? Even here in Canada, the neurologist had to get special approval to give it to him as is very costly.
I don't know how they tell the inflammation has gone down- my son was just under two when he was found to have ADEM. He was given prednisone (a steroid) and antibiotics and his visual tics of eye rolling and staring spells ceased- and he's been better since. Each time we've started to see the eye rolls or staring spells- he's prescribed the same medications. I asked my Pedi Neurologist about this and how they'd know more damage wasn't being done and he said that they wouldn't know until they did another MRI.... so- I guess we're waiting for that? I don't know when they're going to do it- because he's been healthy for a while now- thankfully.
I hope the best for your son- he is lucky to have a mother who is looking for answers
ADEM is an auto-immune disease of the brain, so the inflammation involves nerve cells in the brain and spinal cord. Because the brain controls almost everything in our bodies, it is the inflammation in the brain that produces the broad variety of symptoms that ADEM patients experience. The types of symptoms are connected to what particular part of the brain or spinal cord is inflamed.
In general, when symptoms improve, this is an indication that the inflammation in the brain is lessening. The "gold standard" test for monitoring the inflammation is MRI imaging of the brain itself.
I'm in my 7th month now since the attack. My symptoms have improved significantly but I still have them. As long as I am gradually improving, my neurologist seems to be in no new big hurry to do a follow-up MRI and that seems reasonable to me.
Have you checked the webpage at the Cleveland Clinic? That's where we got a lot of our information. See if this helps.
Lynn
Matt's Mom, how is your son now? I hope well. My son is 3 and is 4 months post ADEM diagnosis. His case is severe and he receives chemo every month. Prayers for your son.
Matt'sMom said:
Hello Enas,
My son, Matthew was diagnosed in March this year. According to the doctors his case was quite severe. He received IVIG for 3 days and intravenous steroids for 3 days and then was tapered on prednisolone (steroids) for 6 weeks. He had a follow-up MRI at the end of May and this showed that many of the lesions had disappeared. Has your son shown some improvement since his diagnosis? I think every case is unique and recovery time is different for everyone. After 8 months since diagnosis Matthew still does not have complete control over the right side of his body but considering he could not sit or swallow for 4 weeks this is a big improvement.
How long did your son take the cortisone for? Has your neurologist recommended a follow-up MRI to see if the lesions have decreased or disappeared?
Hello Enas,
Matt continues to improve. We are now 9 months post ADEM and he is able to go to school again. His right side of his body is still effected so he is unable to use his right hand and foot very well. He receives Physio and Speech therapy twice a week. The doctors say they have no answers as to how long it will take for him to recover completely. We are very happy that he is positive and tries very hard every day. What is your son receiving chemo for? How was his body effected from ADEM? My prayers are with you and your family.
Hi, my name is Jenny. He's receiving chemo for ADEM b/c 3 other procedures didn't work: steroids, IVIG, plasma exchange. He has a very severe case of ADEM. His lesions were all over in his brain. Currently they've decreased and we so happy!
His sight is still affected which makes it difficult for him to walk. He just started walking this wk!!! Yay!!! =)
Was it 9 months post ADEM that he was able to return to school? When did u start seeing major improvements? We see improvements every wk. We are definitely hopeful that his sight comes back soon. With this, his walking will be more stable.
Any and all info you can provide will be greatly appreciated!!
Prayers for your son and mine,
Jenny
My Daughter's Story-Hope this helps. I would think that an MRI would detect any inflammation.
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.