I guess I am looking for some one who has had the same experience that my boyfriend/father of our son is in right now. This all happen so fast, here is a brief back run down. Last Monday we went to the hospital for a kidney infection and that night he started acting strange, by morning he was bumping into every thing as he walked, back to the hospital for more scans brain mri showed fine. That night I had to call an ambulance bc he could not move & barely speak. He sat at a local hospital for a full day before a neurologist came to look at his 2nd brain scan which showed white spots (That makes me so mad! I kept saying what if this is getting worse as we wait for this neurologist all day & it did!), by the next morning the had him at Jefferson Hospital in Philadelphia. They say his kidney infection is not related. He has a family history of poly cystic kidney disease & that first day we found out he had it as well.They say his kidney infection is not related. Even tho he could not move or anything he showed my he could hear me, bc when I talked about our son he made a face like he wanted to cry and I saw tears. I guess all that stimulation was not good bc yesterday they had to put him in a medically induced coma bc his brain swelled a bit more & he started getting severe fevers yesterday. They had to put a new monitor in a different spot in his head & because he is young, 39, there is not enough room in his head so they are no longer draining fluid. Today was his fifth day on the highest steroids so they had to take him off but from my understanding the steroids will keep working in his body for 3 weeks and the steroids is the main thing that will take the swelling down.?? I just wish some one could give me a time frame on when I can expect him home with our son, I know that is not realistic< I am trying my best to hold it together. I know he will pull through this, I just wish I knew when. Looking back, the past few weeks he was sleeping more than usual, saying he felt so run down like he was getting sick but he just figured it was the stressful job he was doing and kept going. No flue shots or anything, he is the type that never went to the doctor. Has anyone gone through this, how long before the swelling stopped?? Any answers would be greatly appreciated.
Emily, your story brings back memories from our son who experienced what your husband is going through last October. I'll begin by saying he is so much stronger now, although ADEM is still a part of our lives.
The only value I can add is that they kept our son on steroids for 5 weeks, not 5 days. This was what made the biggest difference. He was on prednisone, and I hope your husband is still on that. They kept him on and tapered off until he was down to 1 pill, and I believe it was 5 weeks later.
My heart goes out to you and your family. There are seemingly so few answers to this disease, if you have more questions please reach out, hopefully someone in our community can share what helped them.
I am so sorry you are having to deal with this. If you can give me his first name, we will keep him in our prayers. Now, when I got ADEM last spring, mine came from a neuro-virus, I had the falling, stumbling and 3/4 of my body had numbness sensations. I wasn't diagnosed for about a month and then in the hospital for Steroid IV for 4 1/2 days. After that visit, my symptoms were 80% cleared. And yes, I had spots on my brain, too. Now a year later, I still have hand symptoms. I don't know if they will ever go away, however, compared to where I was...lost complete use of my hands...I can do everything with them...they just feel funny. I don't know if that helps, but know this, there is emotional support for you on this site.
Take one day at a time and rejoice in each little improvement that comes along. It's probably going to be a slow progress.
Hello, my son went through a very similar pattern. We had a flu virus in our house. He was sick for 5 or 6 days but then was almost fully back to normal on day 7 or so. On day 8 he was back on the couch with a fever and I started looking up meningitis, pneumonia -- any possible complications. I went to ER but they didn't catch that he projectile vomited there and could not urinate. After hours waiting for him to urinate (although he'd been through an IV bag of fluid) the last thing they were waiting for was a urine culture then they were going to send him home. He was so miserable and the PA said they would not admit him and he also said he didn't look "sick enough" to have meningitis. So, I decided he must be very dehydrated and I asked them to let us leave and I would have him drink Gatorade at home and bring a sample back. However, within 5 hours he was similar - couldn't talk, barely move. I called 911 and within another 4 hours he was intubated and in a coma - induced. They only kept the coma induced for about 3 days. We had many scares with swelling brain and several emergency CT scans, but it hadn't gotten worse (his pupils would do funny things and they thought his brain was swelling but upon checking, it did not look worse on CT scan). He had a super high fever and needed to be on cooling blankets and the induced coma was, like with your boyfriend, to reduce swelling. It wasn't till 5 days later they could do an MRI and diagnosed ADEM. They started him on steroids immediately but it did my son no good and his MRI got worse over the next week. After courses of IVIG and plasmapheresis, he finally started to wake up. He didn't move or respond to pain for 3 weeks. My son had an ultra severe case. He went through a lot - after 5 weeks ICU, 7 weeks in patient rehab, he was in outpatient rehab for another 1.5 years almost. The docs are still happy at how far he has come but it's been a long road. I am not sure if your boyfriend is as severe as he was. If my son can come as far as he has, your boyfriend can. I would think swelling, as long as he's on steroids, shouldn't be a problem after a week or so. That's when our swelling scares finally ended and also,most patients respond to steroids, but my son didn't. I'm sure before too long things will get better.
lethargy hit Greta for a couple of weeks before the loss of vision. The lethargy was attributed to mono. The body fighting this wicked virus began attacking itself, hence the ADEM. This is what we were told. Was the lethargy part of the ADEM all along? Who knows for sure. 5 days of steroids and by the 5th day Greta was getting her vision back. She didn't have the brain swelling to the extent that you speak of. She was able to come home after 9 days total in the hospital, the last 5 on the steroids. Hope this info helps some.
Yes, as Tanya says, some do not respond to steroids and my son was a non-responder. The doc said that adults more than kids are more likely to be non-responders to steroids and her theory was that since my son was 12 and about 5'4" and more "adult size" maybe that was why. (they didn't really know why.) IVIG and plasmapheresis are the other standard treatments but of course they should know that. Hang in there. He will get better.
Hi Brittany, thank you for your responce. May I ask how old you are? Today we got better news, they where able to do another MRI and found there is no more swelling or lesions and some swelling went down. He seems to be at all the levels they want him to be aside from a blood clot in his leg now and blood pressure meds due to the induced coma. They said they are going to take him off the coma meds tonight and see what happens... It has also been about a week for him as well. I'm trying not to get my hopes up to high but I really hope he continues to progress and can wake up soon. Also, if you don't mind me asking. When you woke up, did you have memory loss? What all did you have to go through after you woke up? Any issues today?. I know this will be a long road from what I have read, I'm just trying to prepare myself the best I can.
Brittany said:
Hey Emily, I'm very sorry you have to deal with all this. I had a similar experience (The one being put in the medically induced coma). I won't get into full details unless you're interested. But from what I remember and what my family members have told me, I was in the coma for about a week. I was getting steroids through an IV. The swelling went down in about a week. However, I ended up having to stay in the hospital for another two weeks. I had to fight to let them send me home. At home the doctors put a lot of restrictions; I became an outpatient for two and a half months. I'm hoping this is helpful. Wishing your boyfriend a speedy recovery.
Goodness, I can't imagine having to watch your child go through that. It seems like your son may have been such a severe case because it took so long for them to figure out what he had! At this point, my bf is not that severe. You are so very right about if your son can come as far as he did then my bf will too, your story is a friendly reminder that somebody always has it worse and to be grateful for the little things and small progressions. I am glad to hear your son is well today. What a strong mother you are. Thank you for sharing with me.
Johnsmom said:
Hello, my son went through a very similar pattern. We had a flu virus in our house. He was sick for 5 or 6 days but then was almost fully back to normal on day 7 or so. On day 8 he was back on the couch with a fever and I started looking up meningitis, pneumonia -- any possible complications. I went to ER but they didn't catch that he projectile vomited there and could not urinate. After hours waiting for him to urinate (although he'd been through an IV bag of fluid) the last thing they were waiting for was a urine culture then they were going to send him home. He was so miserable and the PA said they would not admit him and he also said he didn't look "sick enough" to have meningitis. So, I decided he must be very dehydrated and I asked them to let us leave and I would have him drink Gatorade at home and bring a sample back. However, within 5 hours he was similar - couldn't talk, barely move. I called 911 and within another 4 hours he was intubated and in a coma - induced. They only kept the coma induced for about 3 days. We had many scares with swelling brain and several emergency CT scans, but it hadn't gotten worse (his pupils would do funny things and they thought his brain was swelling but upon checking, it did not look worse on CT scan). He had a super high fever and needed to be on cooling blankets and the induced coma was, like with your boyfriend, to reduce swelling. It wasn't till 5 days later they could do an MRI and diagnosed ADEM. They started him on steroids immediately but it did my son no good and his MRI got worse over the next week. After courses of IVIG and plasmapheresis, he finally started to wake up. He didn't move or respond to pain for 3 weeks. My son had an ultra severe case. He went through a lot - after 5 weeks ICU, 7 weeks in patient rehab, he was in outpatient rehab for another 1.5 years almost. The docs are still happy at how far he has come but it's been a long road. I am not sure if your boyfriend is as severe as he was. If my son can come as far as he has, your boyfriend can. I would think swelling, as long as he's on steroids, shouldn't be a problem after a week or so. That's when our swelling scares finally ended and also,most patients respond to steroids, but my son didn't. I'm sure before too long things will get better.
His name is Jason. Thank you so much.My BF had all the same symptoms however he could not move his own body and could not respond, it all happen over a matter of hours. Today they could finally lay him flat for another scan that told us there is no more lesions or swelling at this point, he seems to be stabilizing. They are going to stop the coma med but keep the device they have in his head to monitor. I have come to terms with it being a long road ahead and very grateful for every good thing I hear. I am also very grateful that you shared your story with me. I already believed he is fighting this and coming home but reading all of these responses just gave me even more reassurance. Thank you
Lynn said:
I am so sorry you are having to deal with this. If you can give me his first name, we will keep him in our prayers. Now, when I got ADEM last spring, mine came from a neuro-virus, I had the falling, stumbling and 3/4 of my body had numbness sensations. I wasn't diagnosed for about a month and then in the hospital for Steroid IV for 4 1/2 days. After that visit, my symptoms were 80% cleared. And yes, I had spots on my brain, too. Now a year later, I still have hand symptoms. I don't know if they will ever go away, however, compared to where I was...lost complete use of my hands...I can do everything with them...they just feel funny. I don't know if that helps, but know this, there is emotional support for you on this site.
Take one day at a time and rejoice in each little improvement that comes along. It's probably going to be a slow progress.
Today we got better news.They where able to lay him flat for long enough to get an MRI that told us there are no more lesions or swelling. And they are going to try and take him off of the induced coma meds to see how he responds. They are going to keep the device in his head tho that monitors the swelling/pressure. I am trying not to get my hope up to high but I hope this progress continues. I already know and believe he is going to fight this and come home to us and I know it will be a long road, I am just trying to be prepared for what is to come. Any advice is appreciated.
Emily, you need to take one day at a time and try to stay upbeat. One other thing...you can help him by keeping his immune system up. Make sure he gets good nutrition, stays positive and gets rest. We are all here for questions and support. Please keep us informed on his progress.
Lynn
Emily, we are all sending warm thoughts your way. The recovery period is different for everyone. My daughter continued to recover for almost 2 years, although most of the recovery was in the first 6 months. Another girl we met at the hospital who also had ADEM was recovered well enough to go home in 1 week. We were in inpatient rehab for 5 weeks. So as you can see the recovery is quite different for everyone. I will hope that it is speedy for your loved one! Keep us posted.
Hi Emily my name is Nejah I to was a healthly 49 year old I’m 10 yrs older than your boyfriend but like him mine came with in 24 hrs although their are differences but many similarities. I started losing feeling from my torso down my back felt like it was on fire 2am my husband took me to the emergency room they needed a urine sample I could barely get myself up to walk back to the room they took cat scans blood samples I explained to the ER doc I was losing sensation in my legs he said he couldn’t find anything said I was anxious and was sent home with Xanax and hydrocone fast forward 5 hrs I woke up completely paralyzed from the waist down my husband called 911 was rushed to a different hospital thank God the tests began with a spinal the elimated west Nile lupus Guillan barre and a multitude of other things blood work was done MRI… I was sent to intensive care where they started a strong serious of steroids and anti virus meds the next day they thought I had tranverse myelitis next day they told me I had ADEM. I too had white spots on my brain. 3 days in intensive care my left leg started moving the strong steroids seemed to be working long story short I was hospitalized sept 30 2013 until October 16th 2013. I had plasmapheresis every other day for 5 days and continued the antivirus iv… I began walking slowly and with physical therapy regained my balanced. I have my 6 month check up with the neurologist April 4 2014 so far so good for me… I hope and pray your boyfriend gets better this is very scary and very rare. Please keep us posted I’m praying he gets well soon. Nejah
Hi Nejah, thank you for sharing your story with me. I'm so happy to hear you are doing well today.My boyfriend has had many similarities, not being able to move etc. However he is currently in a medical induced coma while receiving the high dose of steroids (they just put him back on again). Did they have to put you in a medically induced coma to help the brain swelling/pressure go down? Or you never lost consciousness?
Alexus3565@aol.com said:
Hi Emily my name is Nejah I to was a healthly 49 year old I'm 10 yrs older than your boyfriend but like him mine came with in 24 hrs although their are differences but many similarities. I started losing feeling from my torso down my back felt like it was on fire 2am my husband took me to the emergency room they needed a urine sample I could barely get myself up to walk back to the room they took cat scans blood samples I explained to the ER doc I was losing sensation in my legs he said he couldn't find anything said I was anxious and was sent home with Xanax and hydrocone fast forward 5 hrs I woke up completely paralyzed from the waist down my husband called 911 was rushed to a different hospital thank God the tests began with a spinal the elimated west Nile lupus Guillan barre and a multitude of other things blood work was done MRI... I was sent to intensive care where they started a strong serious of steroids and anti virus meds the next day they thought I had tranverse myelitis next day they told me I had ADEM. I too had white spots on my brain. 3 days in intensive care my left leg started moving the strong steroids seemed to be working long story short I was hospitalized sept 30 2013 until October 16th 2013. I had plasmapheresis every other day for 5 days and continued the antivirus iv.. I began walking slowly and with physical therapy regained my balanced. I have my 6 month check up with the neurologist April 4 2014 so far so good for me.. I hope and pray your boyfriend gets better this is very scary and very rare. Please keep us posted I'm praying he gets well soon. Nejah
Well the good news we had yesterday quickly went to worse news overnight. His levels of swelling went up pretty high again, severe fevers and blood pressure issues. I feel they took him off the high steroids too soon. I know they had to get the MRI done but I think it was too much for him. Today was so hard to listen to the doctor, I am trying to remember everything... they put him back on a high steroids hoping this will take the swelling down again. I believe the doctor said IVIG and/or Plasma treatment (I may be wording those wrong) does not look like an option for him, or even a preventative measure we could take. He talked about possibly having to cut half off his skull off if it continued. I have been doing my best to stay strong and positive but hearing this news today just put me over the edge. I know this all takes but coming home to our little boy every night is heartbreaking! Praying the steroids they put him back on will reduce the swelling sooner and they don't try to move him around to much again. I am hanging on to each of your responses and grateful you are here to share with me. (Am I putting this information in the correct place so that people can see his story in order?)
Oh, Emily, I am so sorry. I'm sending prayers and wishes to you and your boyfriend. Yes, your information is in the right place. Please keep us posted.
My prayers are with you!!!
Hi Emily this is Nejah I’m sad to hear the latest news hang in there. I was not in a medically induced coma although I have lesions on my brain my body began attacking the myelin sheath that protects the spine causing my paralyses the strong doses of prednisone thankfully worked helping repair the damage that along with the plasmapheresis and antiviral drugs. It brings tears to my eyes knowing what you all are going through. I know their is so much info so fast it truly is hard to absorb. Please Emily make sure you have good support around you as scary as what I went through was I honestly believe it was harder on my loved ones. Love and prayers, Nejah w
Alexus3565@aol.com said:
Hi Emily my name is Nejah I to was a healthly 49 year old I’m 10 yrs older than your boyfriend but like him mine came with in 24 hrs although their are differences but many similarities. I started losing feeling from my torso down my back felt like it was on fire 2am my husband took me to the emergency room they needed a urine sample I could barely get myself up to walk back to the room they took cat scans blood samples I explained to the ER doc I was losing sensation in my legs he said he couldn’t find anything said I was anxious and was sent home with Xanax and hydrocone fast forward 5 hrs I woke up completely paralyzed from the waist down my husband called 911 was rushed to a different hospital thank God the tests began with a spinal the elimated west Nile lupus Guillan barre and a multitude of other things blood work was done MRI… I was sent to intensive care where they started a strong serious of steroids and anti virus meds the next day they thought I had tranverse myelitis next day they told me I had ADEM. I too had white spots on my brain. 3 days in intensive care my left leg started moving the strong steroids seemed to be working long story short I was hospitalized sept 30 2013 until October 16th 2013. I had plasmapheresis every other day for 5 days and continued the antivirus iv… I began walking slowly and with physical therapy regained my balanced. I have my 6 month check up with the neurologist April 4 2014 so far so good for me… I hope and pray your boyfriend gets better this is very scary and very rare. Please keep us posted I’m praying he gets well soon. Nejah
They tried to lower his induced coma meds 2 days ago and unfortunately his ICP/swelling number shot up. He is stabilized now but only by keeping him in coma. Another problem is he can not be moved much or laid flat, that also causes his numbers to go up so they can not get another MRI done or anything. He will now need trake in his throat & feeding tube directly put into his stomach bc after 2 weeks the normal tubes can cause infection. He does still get steroids during the day only. By maintaining his levels while in coma mean he just needs more time to heal? How long have you or your loved one have to stay in the medically induced coma? He is going on his 12th straight day in a coma.
FYI- The doctors decided to NOT cut into his skull because the risks outweighed the benefits, Thank God they put him on a drug called mannitol which helped tremendously and is no longer needed.
Emily said:
Well the good news we had yesterday quickly went to worse news overnight. His levels of swelling went up pretty high again, severe fevers and blood pressure issues. I feel they took him off the high steroids too soon. I know they had to get the MRI done but I think it was too much for him. Today was so hard to listen to the doctor, I am trying to remember everything... they put him back on a high steroids hoping this will take the swelling down again. I believe the doctor said IVIG and/or Plasma treatment (I may be wording those wrong) does not look like an option for him, or even a preventative measure we could take. He talked about possibly having to cut half off his skull off if it continued. I have been doing my best to stay strong and positive but hearing this news today just put me over the edge. I know this all takes but coming home to our little boy every night is heartbreaking! Praying the steroids they put him back on will reduce the swelling sooner and they don't try to move him around to much again. I am hanging on to each of your responses and grateful you are here to share with me. (Am I putting this information in the correct place so that people can see his story in order?)