adem diagnosis on march 15 2012

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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adem diagnosis on march 15 2012

Postby mnadem » Wed Mar 21, 2012 7:58 am

My son was diagnosed last week with adem. He is currently deaf,can't move or feel legs,and has double vision. Steroids didn't do much and now getting plasmaphresis. We have many questions but for now just want to know what to expect. Thanks.
mnadem
 
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Re: adem diagnosis on march 15 2012

Postby mnadem » Wed Mar 28, 2012 6:10 pm

Since I get no replies, I will tell you his current condition. He has gone through the steroids but still on taper. Has had last plasmaphoresis today. He is getting hearing back a little, able to move his legs and feet some, double vision is better. Things not working are his bladder and bowels. Not sure how much more we can expect.
mnadem
 
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Re: adem diagnosis on march 15 2012

Postby baopsman » Thu Mar 29, 2012 9:13 am

My son (18 years old) was also diagnosed with ADEM on 12 March, luckily it was caught early and treated the same way. We initially took him to the emergency room because he hadn't passed water for 24 hours, once in the emergency room his health declined rapidly over the following 6 hours. He was completely paralysed, had double vision if he could open his eyes, his body temperature reached 40 degress C but he didn't have any fits and also had diffculty breathing. He was treated in ICU with steroids and anti-biotics before being transferred to a specialist neurological hospital within 24 hours for the plasma exchange. Since treatment there has finished his recovery has been remarkable, improving considerably day after day. He was discharged from hospital last Monday 26March into our care after proving he could pass water (his bowels functioned after the 2nd week with help from laxatives), probably a little early but he could walk short distances and his sight has come back. He is now home in a familiar environment being looked after by Mum, Dad and girlfriend. Today he took a walk to the end of our garden (130ft) and back which has tired him out and he is now back in bed sleeping. His memory seems unaffected at the moment but the left side of his face and left hand still has slight paralysis.

Don't give up hope, our doctors said if the 1st plasma exchange, there isn't always an improvement after the the 1st treatment, didn't work they would do it again. We were also advised it could take up to a week to see any improvement after each treatment. I think we were lucky in that the neurologists at our specialist hospital had a case in January this year so were familiar with it but prior to that case they hadn't seen one for 4 years.

I wish you and your family well during this difficult time and a speedy recovery.
baopsman
 
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Re: adem diagnosis on march 15 2012

Postby mnadem » Sat Mar 31, 2012 6:33 am

Thank you, glad your son is doing great, very good news. Our son is now receiving physical therapy to try to gain use of his legs again. Bladder and bowel issues still remain, as does hearing loss, but the latter is getting better little by little. I wish we could have gotten a diagnosis sooner, because by the the third day in the hospital he had lost legs, hearing and eyes were double. Then we didn't get steroids until 2 days after that. The reason I think is that he couldn't remain still for the MRI. He was in so much pain and the MRI was such a long process, he couldn't take it. They eventually sedated him, and thus the MRI was successful leading to the diagnosis. We are hopeful each and every day that he gets better.
mnadem
 
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Re: adem diagnosis on march 15 2012

Postby Porsche2006 » Sun Apr 29, 2012 4:40 am

Wishing your sons all the best on their road to recovery.
My duaghter was diagnosed with ADEM on the 12th April this year too. She is 6 years old. It began with 14 days of constant vomitting and her screaming in paid of bad headaches. After numerous visits to our local GP we were fobbed off with "its simply a virus, keep giving calpol & nurofen and it will pass", it didn't. After us then taking her to a local hospital they gave her a CT scan and diagnosed "sinisitus" and sent us home with a bag of codiene, anti sickness tablets, nose sprays etc. She was still vomitting daily and complaining of headaches. We then went to Brighton Chrildrens Hospital A&E where they admitted her, she was put on drip etc etc, blood tests taken and after a lumbar puncture - viral meningitis was diagnosed. They wanted to give her a MRI scan however as this all happened over the Easter Bank Holiday this was "put off" for 4 days (we were not happy as you can imagine), throughout the Bank Holiday weekend she got progressively worse - not being able to talk, walk, couldn't focus on anyone or anything etc, she just went downhill so rapidly. She was given general anaesthetic for the MRI and finally ADEM was diagnosed. She has been on antibiotics and steriods (is still on steriods now) and we are now home after spending over 2 weeks in hospital. She is now walking and talking and seems to be improving daily. We are still waiting for more results to come back from recent blood tests and have been referred to the Evelina Childrens Hospital in London. Having trawled the internet for information and advice I too, like you would like to hear any information from parents etc.
Porsche2006
 
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Re: adem diagnosis on march 15 2012

Postby tracyy » Tue May 29, 2012 6:07 pm

Hi.
I am currently in hospital with my 10 year old daughter who has been diagnosed with ADEM.
We have been here for 9 days now after she started showing neuro signs post a viral/cold infection 2 weeks prior.
We have been through such a roller coaster as Drs tried to diagnose her but hopefully Adem is what we have as the alternatives were particularly scary with poor outcomes.
I am at the moment finding it hard to beleive my little girl is going to make a recovery-the change in her from a completely bright and normal 10 year old just two weeks ago is dramatic.
She is terrified and trapped in a body she can't control and wracked by painful spasms.
Unfortunately we are in a hospital 8 hours drive from our hometown and away from all things familiar.
I would really appreciate hearing your encouraging stories of recovery.
We have been told it will take weeks if not months and could be away from home for a long while yet.
Progress certainly fluctuates .Today she is heavily medicated to give her poor wee body a chance to relax and sleep.
Looking forward to some communication with other as I am feeling so isolated :-(
tracyy
 
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Re: adem diagnosis on march 15 2012

Postby Porsche2006 » Fri Jun 01, 2012 1:43 pm

Tracy so sorry to hear about your daughter, I hope she is improving. How is she today ? I can totally sympathise with you - your situation sounds very like ours with our 6 year old daughter which started off in March of this year. My daughter is now off her steriods and is making very very good progress. She has gone back to school for a few hours this week (the first time she has been back since March). She is now suffering from eye pain and blurry & double vision - we have an appointment at Evelina London Hospital on 21st June which I am hoping will give us alot more information on this ADEM. Are you on Facebook ? There are a couple of ADEM facebook groups which I found the other day which are amazing - it seems there are alot of people unfortuantely suffering / have suffered with this awful illness - but it is so positive to read other peoples stores on this. I wish you and your daughter all the very very best and hope she will soon be on the road to recovery. My thoughts and prayers are with you. Keep positive - you will get there in the end. I too like you found it hard to see my little girl change from an active happy 6 year old to one who couldnt walk or talk - but I am pleased to say now she is on the road to recovery - you WILL get there - stay strong x :)
Porsche2006
 
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Re: adem diagnosis on march 15 2012

Postby tracyy » Sat Jun 02, 2012 6:06 pm

Hi,
Thanks for your encouragement .We have still not seen great improvements and what little she did have seems to be gone as well.She can still look at me when I ask her to and she will squeeze my hand for a yes so I know she is ok in there!
The worst problem at the moment are the leg spasms which have her crying out day and night-meds keep increasing and she is more and more sedated which I don't mind as I hate to see the suffering.
She can't talk,move or do anything but they say she is stable and we wait for improvements.
I am so so sad for her.I keep telling her she will get better and hope I sound convincing as it seems so hard to beleive she can come back from where she is now.
Her brain involvment is her basal ganglia so we will expect some deficits and not a full recovery.
Steroids over 3 days made little difference so her tmt plan is more immunoglob in another 3 weeks or so.
I am really wanting someone to tell me how it feels when her legs go stiff,her thighs are like rocks and her legs lift straight off the bed-I imagine it hurts but is it like a regular awful leg cramp and what can I do to help her overcome them or relieve them???
tracyy
 
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Re: adem diagnosis on march 15 2012

Postby tracyy » Sat Jun 02, 2012 6:11 pm

Found the facebook page-thank you.
tracyy
 
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Re: adem diagnosis on march 15 2012

Postby johannaullman » Sat Jun 16, 2012 2:55 pm

Before I saw your post, I posted about my son Vilmer who got the diagnosis yesterday, please read this where I share our experience. For instance I write about our expereince with intravenous gammaglobulin as primary treatment. It has been very efficient for our son. I wish you all luck!
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Re: adem diagnosis on march 15 2012

Postby bronniem » Sun Jul 22, 2012 2:29 pm

Hi, My 9yr old son had a gastro bug on june 29 and from there he continued to have headaches, after 5 days all he would do was sleep, it was hard to rouse him and when he started to stumble he was admitted to hospital where after a lumbar puncture he was diagnosed with viral mengingitis however when 3 days later he was not getting better they got a MRI looking for ADEM, we were lucky as we live in New Zealand and we are a smaller city which does not normally treat ADEM so we were thankful the drs were onto it. Unfortunalty for us that night he was diagnosed he suffered seizures and was intubated, he was then flown to the childrens hospital in Auckland where he was intubated for 5 days, once extubated he has made an amazing recovery, it is 10 days post extubation and I am thinking he will go back to school part time this week. Once they turn the corners it is amazing how quickly they can recover so don't give up hope
bronniem
 
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Re: adem diagnosis on march 15 2012

Postby Kaylie » Wed Jul 25, 2012 6:32 am

Hi,
My 5 years old nephew was also diagnosed to suffer from ADEM june 7 2012. He was hospitalised for total of 4 weeks. Was misdiagnosed of having bacterial meningitis intially, and spent 2 weeks under medication that seemed to be irrelevant.
So far he had received corticosteroid intravenous fo 5 days, continued by immunoglobulin. He made quite a good improvement in terms of motoric ability. Now he can walk, and we continued with the therapy.
His cognitif ability however is still so far below the doctor's expectation. And dr suggesting he should be treated with gangcyclovir intravenous for 2 weeks if it still remains the case by next monday.
Gangciclovir is directed to combat against the virus in the neuro system as what the dr said, however we are still concern about the side effect.....
Anybody ever heard of this sequence of treatment?
Kaylie
 
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Re: adem diagnosis on march 15 2012

Postby Greta'sMom » Fri Sep 14, 2012 1:55 pm

Our daughter was 8 when she was diagnosed with ADEM in October of 2011. She lost vision in her left eye and a CT scan showed a mass on her brain. Her pediatrician sent us immediately to Dallas Children's Medical Center where she was diagnosed with ADEM within a few days. The intense steroids left her irritable and with a moon face and all of the other side effects, but she got her sight back in her left eye. We've been on the long follow up program that Dallas Children's does with all of their ADEM kids and the MRI's keep showing the lesion is shrinking. We have had some issues with aggressiveness and attitude and she has gone through some behavioral testing to see where we are with that. We are just so thankful that she is mostly back to normal! There is hope.
Greta'sMom
 
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