Recovery from ADEM

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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Re: Recovery from ADEM

Postby Shirley » Fri Nov 25, 2011 12:02 am

It never fails to affect me, reading these stories. ADEM is an illness so very rare that most doctors wouldn't see a patient with it in their life time. I had the honour to meet my 1st ADEM person last Tuesday, a fascinating story, a devastating story with a successful conclusion. He is back to full time work. It was interesting to see how TM and ADEM mirror each other.

Summer is coming to the Antipodes, the roses are in bloom, now all we need is for the wretched wind to drop!!!!
Keep well



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Re: Recovery from ADEM

Postby bally » Tue Jan 10, 2012 9:35 am

Was this time three years ago I was on life support n I am doin very well. I'm doin well at work n u can't tell anything was ever wrong with me. I feel very lucky after hearing other peoples experiences on here after their attacks. It's mainly my anger n headaches which still affect me. I wish you all a full recovery. We've all been through a lot x Bal x :)
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Re: Recovery from ADEM

Postby everafter » Sun Feb 12, 2012 11:03 pm

Need some help/explanation from persons whom went through the experince of ADEM disease.

My 9 years 5 months boy has admitted to hospital 26 Jan'12 at ER, then transfered to Pediatric ICU, having hemiplegia (left side, can't move his left leg/hand) with neck pain/stiffness. After extensive medical examinations including brain CT SCAN, different MRI with and without contrast, doctors confirmed me that my son having an ADEM disease at his brain and the spinal cord neck side (between the C2 and C4). Doctors afterwards, decided for his treatment plan and started with steriod (methyl pen) and IVIG for 5 days period, then shiftted to oral steriods with some Physiotherapy to hand and leg. After 10 days at the PICU, he showed some improvement in his left leg, his body temperature came to normal and his general health showed also good improvment in comparable to his first few days at hospital , however, no sign of improvement/movement of his left hand as yet and he still can't move it at all. Though doctors, gave me their confident that my son situation will improve within 4 to 6 weeks from the admission date, still I feed worry specially, when I don't see much improvement in his left hand and despite the physiotherapy excersizes, he still cant stand himself and can't walk alone.

Can some one help me from his experince in this disease of what are the chances for full recovery and how long would it take. My son transfered from the PICU to the pediatric section since he showed some improvement and till date he is at hospital for almost 3 weeks since the 26 Jan'12.

Thanks
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Re: Recovery from ADEM

Postby Shirley » Wed Feb 15, 2012 5:34 pm

Good afternoon. I cannot speak from experience with ADEM as I'm a TM survivor, but your son is very early on in his journey to recovery. His body needs to rest, this is as important as his PT. Listen to the Neurologist and the Physiotherapist, encourage your son to sqeeze a soft ball, but sleep energizes him for the next day.
I wish you both well, we are here to support you and answer any questions that are bothering you.

Take Care
Keep well



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Re: Recovery from ADEM

Postby everafter » Sat Feb 18, 2012 2:52 am

Dear Shirely,

I first of all want to thank you for your reply/explanation and wish you full recovery from the TM. However, despite my readings about TM, I'm not really able to differentiate between the TM and ADEM diseases. Would you please explain me the difference if you could.

thanks again
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Re: Recovery from ADEM

Postby Shirley » Sat Feb 18, 2012 5:55 pm

There are a range of neurological illnesses that are so closely related, they are classed as cousins of each other. They are Transverse Myelitis, ADEM, MS NMO, they are all autoimmune illnesses as is Diabetes, oesteoarthritis, and Rheumatoid arthritis, of course there are loads more, but these are the ones we all hear so much about.

The difference between TM and ADEM is that TM affects the spinal cord, whereas ADEM involves the brain and spinal cord. The lesions in the brain are scattered. The rate of recovery from what I read on the forum appears to be slower, I could be wrong about that tho, I guess it depends on the damage done to the nerve axons on how a person recovers.

I wish your son well.
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adem

Postby dmr32982 » Mon Feb 20, 2012 11:20 am

My 14 year old niece was recently diagnosed with ADEM after receiving the Hepatitis A vaccine. She was admitted to the hospital, but they decided to release her after 3 days and 3 rounds of IV steroids. They told my sister to continue with physical therapy and to follow up with them in 6 months. They didn't give her any medication or anything. Its been 2 weeks since she was discharged and she shows no signs of improvement. Her condition appears to be deteriorating. Hemiplegia is still present and she has now developed a twitch. Can anyone direct us to a specialist? And what is the prognosis?
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Re: Recovery from ADEM

Postby everafter » Mon Mar 05, 2012 11:25 pm

I have my full sympathy with your niece case cause, my son 9.5 years is facing the same disease. Though I’m not a US citizen, I’m from Saudi, but, I have consulted very famous medical firm at the US called "Mayo Clinic" as I heard from friends that they are very good firm and can help much for such situation. Before giving you their web address and some details, I want to give you some explanation and details about what my son had gone through since the discovery of this rare disease:

My son had sudden onset of his left side (except to face) once he waked up from the sleep and all of the sudden he couldn’t move his left leg and left hand and without any prior signal or symptoms, that was on the 26th of Jan’12. I immediately took him to very good local hospital who decided to immediately admit him at the ICU for immediate observation. Doctors without known the root-cause of his disease, decided to take precautionary actions and decided to give him anti viral treatment (basically antibiotics), steroids and IVIG and that was lasted for about 5 days. While they were given him such treatment, they started to do for him very intensive examinations inclusive of blood tests, brain CT Scan, different MRI with and without contrast for all of his spinal cords from top to bottom. They then could find his disease, which appeared to be “ADEM” on his spinal cord between the C4 and C5 (neck side) as well as at his lower brain side (basically at two areas). After a week time, they kept observing his condition and the condition of the disease and fortunately disease didn’t spread around and my son started to show some sort of improvement mainly for his left leg and he started to make some movement. However, no movement at all for his left hand and doctor didn’t know why was that. Doctors kept taking MRI tests every 2 weeks meanwhile decided to take him out of ICU to the normal pediatric section. Doctors, then decided to continue giving him the steroids (oral) once per day. Then for about 28 days later his left leg showed very good improvement, but nothing for hand. However, just few days ago, my son started moving his left hand fingers with some difficulties, but this gave us indication of his path to improvement. Doctors, then took for him a recent MRI test that was end of Feb’12 and then decided to discharge him home after seeing improvement in his spinal cord the decrease of the inflammation. He is now at home since 6 days only and nothing much happening and we are patient for his recovery and giving him support with physiotherapy sessions at home and hospital.

I also would like to give you some advices and recommendation for the case of you niece and I hope it would help you for her soonest recover:

1. From my readings about this disease and the consultation I mad with different doctors and hospitals local and overseas, i could understand that this type of disease take usually long time for the full recovery some researches and true cases talking about a month up to 6 months for the full recovery.
2. Statistics for such rare disease talks about high percentage to fully recover from this disease and is about 75-80%. Hence, big hope exists and surely with faith and family support.
3. Different researches confirmed the need to continue treating the patients with steroid 5-7 days with steroids through vane and then continue with steroid, but oral.
4.The physiotherapy sessions (at home and hospital) are essential for full recovery from this disease and ignorance can cause sever damages and weaknesses to the mussels. Please take this advise very serious.
5.Psychological support of family (parents, brothers, sisters, and friends) is very very important.
6.Never ask you niece to set and relax, but, always treat her as she will recover and encourage her for walking, moving, going out…etc. and to act normally like others.
7.Mayo Clinic web site address where you can communicate your case with them as follow:

http://www.mayoclinic.com/

they surely going to ask for your niece detail medical reports, CT Scan, MRI examinations…etc. so pass them all medical information in your hand.

They also will arrange you for a visit to make face to face examination. As I told you, I didn’t try it myself, but, when I communicated with them via e-mails/mails/phones, they confirmed me that my son is receiving very good treatment plan and they didn’t advise me to visit them.

Last but not least, I wish your niece very soon recovery and if you still have any questions/clarifications I will be happy answering you.

Take care.
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Re: Recovery from ADEM

Postby KalaFairy » Tue Mar 06, 2012 2:27 pm

My best friend and my other half Roger has been diagnosed with ADEM.. I have been there from his worse to now that he is recovering. He is also deaf. He has double visions due to ADEM so he is getting special glasses on this Friday to wear them. He can stand up and walk a bit with the help from rehab center, his family and from me. He can communicate but can get confused sometimes. He has to work on his memory some more and the balance. He still have a long way to go and have to relearn most things kinda like a young child. Roger can eat on his own and can eat soft and hard food. :) He was in coma for 4 days and woke up in front of me and his family. At first he wouldn't let anyone to touch him let alone his family for limited time only but the nurses were surprised when I touched him.. he seemed to be relaxed and calmed. Deep inside he knew it was me when he was sleeping. He has been in the hospital since Jan 29th then he got transferred recently to one of the best rehab hospitals. He is recovering faster than we all expected. I know that he is a fighter and he is stubborn because he wouldn't give up and have the will to be better again. I was told that it will take him 5 to 6 months to be recovered by 90 percent. Roger has two different kinds of treatments and he was responding well to it. Now he is taking oral meds. I am very proud of him and with continued prayers and love.. he will get better in no time. I have faith in him and know that he will improve. He seemed to have a bit of different personality now but he is always happy and so cheerful.. no sadness whatsoever! :) He is a 27 years old student at Columbia College Chicago and he was supposed to graduate within two months before it happens so it is put on hold until whenever he is ready and recovered to go back to finish the last semester. I have also found out who his true friends is during this difficult time and the recovery. Only few of his true friends have came to visit him.. not as many as I thought it would be. :S I have also found out who is my true friends also during this time also because I was always in between school and seeing him at the hospital pretty much everyday to be there for him.. it made me realize that few true friends are better than alot of friends! I am glad I joined this forum to learn more about ADEM and meet ADEM survivors here. I am in school for nursing major and ever since Roger have ADEM.. ..it made me realize that I do want to be a doctor so I can find a CURE for ADEM so it doesn't happen to my other loved ones and everyone out there. Nobody deserve to go through this! I still ask myself sometimes of why my other half Roger have ADEM and he is such a great person but we truly don't know the real reason why. Only God knows why! Please continue on praying for healing and improvements for Roger! I will pray for you guys also! Here is a picture of me and my best friend Roger! :)

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