Oh Emily, I am so sorry...I can't tell you, as I never got to that stage. What is their new plan from here?
Lynn
Thank you. Just one question, did your daughter have to be in a medically induced coma and if so, how long? I know it's different for everyone though. Glad to hear your daughter is is recovering.
Sunshine said:
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.
I'm not sure exactly... Pretty much just keep him stable and see how he responds to gradual changes. it is starting to seem like no one on here had brain swelling like him and had to stay in a coma this long...
Lynn said:
Oh Emily, I am so sorry...I can't tell you, as I never got to that stage. What is their new plan from here?
Lynn
Hi Emily, I posted previously but I noticed you saying that it seemed like no one else had been in a coma as long as your boyfriend (I think you said it was your boyfriend). Anyway, my son had the worst case of ADEM U of M Mott Hospital had ever seen. He was in a coma for over 3 weeks, really for 4 since during the 4th week he slowly began to wake up but we didn't know if he knew us or was even focusing on us or looking at us. He was only medically induced for a couple of days. Steroids made him worse, it seemed. But it's never a good idea I don't think to pull off steroids too fast so they continued to wean the steroids for a couple of months. The doctors never put in a brain swelling monitor. they asked us right off the bat if we wanted it, but they also told us that putting this monitor in didn't necessarily provide a better outcome. So, we opted (two different times) to skip the monitor. Thus, the only way they could tell if he had brain swelling were other clues, such as how his pupils were reacting and a few times for up to a week, they had to rush him down for a CT scan but found no appreciable difference. I wasn't clear what you meant by taking him off steroids because they needed an MRI as John had steroids in an IV along with having MRI's. Maybe I misunderstood. He was in such a deep coma that for 3 weeks he didn't even respond to pain. The most reaction they could get from him was a little bit of a reaction when they would touch his cornea with a q-tip. Very tiny. During this time, he had blood pressure flairs, heart rate problems - seems they were always treating his symptoms. It is awful and I will pray for your boyfriend. I'm sorry you have to go through this.
Emily, I am an ICU RN. May daughter had ADEM 3 years ago. ADEM is extremely rare, and I actually have never taken care of a patient with it, only have had the experience with my daughter. We see a lot of great outcomes in the ICU, patients are in medically induced comas for a long time, and come out of them just fine. The hard part is, it takes time. Do not be scared when he first wakes up, because he probably will be confused and may not be doing well at first. This is not any indicator of how he will be doing in a few months! It often can take a week or more for the patient to come out of the haze of the coma. Additonally the recovery from ADEM takes up to two years. It took my daughter 4 months just to regain walking steadily, and she continued to progress for almost two years, and still she gets stronger 3 years later. Just remember, the trach and feeding tube are temporary, and patients are a lot less stressed consistently when they get the tube out of their throat. It allows them to have the oral/motor portion of themselves back which controls a lot of stimuli to the brain. Keep us posted, we are all keeping you in our thoughts!
Thank you SO much for your response, knowing that you are an ICU nurse gave me great comfort. Thank you for what you do to help others! Do you mind if I ask how old your daughter is & was she in an induced coma? I am sorry to hear she had to go through this terrible disease but glad she has recovered. Tomorrow is 14 days/2 weeks he will be in the induced coma, it has been a roller coaster. But today was his third straight day with his ICP/pressure number under 20 however he did develop a fever today so they had to put cooling wraps on him & started him on antibiotics rite away. Also when he is laid flat his pressure goes up so they are going to try to hold off on the trach for a few days. I do know he will come out of this fighting once he heals and everything levels out. Thank you so much.
Sunshine said:
Emily, I am an ICU RN. May daughter had ADEM 3 years ago. ADEM is extremely rare, and I actually have never taken care of a patient with it, only have had the experience with my daughter. We see a lot of great outcomes in the ICU, patients are in medically induced comas for a long time, and come out of them just fine. The hard part is, it takes time. Do not be scared when he first wakes up, because he probably will be confused and may not be doing well at first. This is not any indicator of how he will be doing in a few months! It often can take a week or more for the patient to come out of the haze of the coma. Additonally the recovery from ADEM takes up to two years. It took my daughter 4 months just to regain walking steadily, and she continued to progress for almost two years, and still she gets stronger 3 years later. Just remember, the trach and feeding tube are temporary, and patients are a lot less stressed consistently when they get the tube out of their throat. It allows them to have the oral/motor portion of themselves back which controls a lot of stimuli to the brain. Keep us posted, we are all keeping you in our thoughts!
I think my boyfriends case is turning out to be a lot like your son's was. Was your son's coma induced? My boyfriends is because his brain basically has to be shut down/no stimulation to keep the pressure and swelling down. He is still on IV steroids daily. His nurse did mention that the doctors spoke about possibly IVIG treatment if needed. I think it was you who told me if your son could get through this, then my boyfriend will too. I do believe that & hang onto those words when fear starts creeping in. Thank you.
Johnsmom said:
Hi Emily, I posted previously but I noticed you saying that it seemed like no one else had been in a coma as long as your boyfriend (I think you said it was your boyfriend). Anyway, my son had the worst case of ADEM U of M Mott Hospital had ever seen. He was in a coma for over 3 weeks, really for 4 since during the 4th week he slowly began to wake up but we didn't know if he knew us or was even focusing on us or looking at us. He was only medically induced for a couple of days. Steroids made him worse, it seemed. But it's never a good idea I don't think to pull off steroids too fast so they continued to wean the steroids for a couple of months. The doctors never put in a brain swelling monitor. they asked us right off the bat if we wanted it, but they also told us that putting this monitor in didn't necessarily provide a better outcome. So, we opted (two different times) to skip the monitor. Thus, the only way they could tell if he had brain swelling were other clues, such as how his pupils were reacting and a few times for up to a week, they had to rush him down for a CT scan but found no appreciable difference. I wasn't clear what you meant by taking him off steroids because they needed an MRI as John had steroids in an IV along with having MRI's. Maybe I misunderstood. He was in such a deep coma that for 3 weeks he didn't even respond to pain. The most reaction they could get from him was a little bit of a reaction when they would touch his cornea with a q-tip. Very tiny. During this time, he had blood pressure flairs, heart rate problems - seems they were always treating his symptoms. It is awful and I will pray for your boyfriend. I'm sorry you have to go through this.
Hi Emily, yes, I said that. My son's coma was induced for a few days as they had to shut down his brain,same as your boyfriend's. However, after 3-4 days only, it was no longer medically induced but was true coma. That was what was so scary. And he actually got worse after they started steroids. They did a 2nd MRI after starting them and his MRI was much worse. He'd finished his strong course of steroids by then but still needed to be on a taper dose as taking off too quickly is bad, too. They followed by IVIG then plasmapheresis. It wasn't til the plasmapheresis though that he started to slowly awake and as an ICU RN said that posted on here as well, it took a while to come out of the fog of the coma, which lasted about 3 1/2 weeks (the coma), but then really he was so slow and by then, needed to be trached and get a feeding tube. Fortunately, he was able to have the trach out before he left the hospital, about 6 weeks later. It was an extremely severe case even for a big hospital like Mott in Ann Arbor. they were very worried about him. He has some deficits but overall they were amazed at his recovery. I am up late right now because I just realized that I have been giving him way too high of a dose of vitamin D3 and of all things and all worried now about D3 toxicity. ugh. It's always something. Many docs will recommend D3 for this and MS type illnesses. My son was low in the hospital. I would recommend that for later but don't do what I have done and given too much. Please contact anytime with questions. I am happy to answer them.
Emily said:
I think my boyfriends case is turning out to be a lot like your son's was. Was your son's coma induced? My boyfriends is because his brain basically has to be shut down/no stimulation to keep the pressure and swelling down. He is still on IV steroids daily. His nurse did mention that the doctors spoke about possibly IVIG treatment if needed. I think it was you who told me if your son could get through this, then my boyfriend will too. I do believe that & hang onto those words when fear starts creeping in. Thank you.
Johnsmom said:Hi Emily, I posted previously but I noticed you saying that it seemed like no one else had been in a coma as long as your boyfriend (I think you said it was your boyfriend). Anyway, my son had the worst case of ADEM U of M Mott Hospital had ever seen. He was in a coma for over 3 weeks, really for 4 since during the 4th week he slowly began to wake up but we didn't know if he knew us or was even focusing on us or looking at us. He was only medically induced for a couple of days. Steroids made him worse, it seemed. But it's never a good idea I don't think to pull off steroids too fast so they continued to wean the steroids for a couple of months. The doctors never put in a brain swelling monitor. they asked us right off the bat if we wanted it, but they also told us that putting this monitor in didn't necessarily provide a better outcome. So, we opted (two different times) to skip the monitor. Thus, the only way they could tell if he had brain swelling were other clues, such as how his pupils were reacting and a few times for up to a week, they had to rush him down for a CT scan but found no appreciable difference. I wasn't clear what you meant by taking him off steroids because they needed an MRI as John had steroids in an IV along with having MRI's. Maybe I misunderstood. He was in such a deep coma that for 3 weeks he didn't even respond to pain. The most reaction they could get from him was a little bit of a reaction when they would touch his cornea with a q-tip. Very tiny. During this time, he had blood pressure flairs, heart rate problems - seems they were always treating his symptoms. It is awful and I will pray for your boyfriend. I'm sorry you have to go through this.
They started him on IVIG treatment along with the steroids. He's developed pneumonia and spiking fever again, started antibiotics. They say the pneumonia is a normal result of his condition. His ICP/pressure number is still remaining under 20 the past 4 days but he can not be laid down, it shoots up too high, so he has to remain in a sitting position and can not get the trach until he can lay flat. Praying this IVIG treatment along with steroids helps him lay down asap.
Still praying!
Hi Emily, don't despair. As I take myself back, all the ups and downs come back to me. Lung management was HUGE. He constantly had gunk in his lungs and I'm sure it was pneumonia a few times. They percussed him constantly and for a time in ICU had a partially collapsed lung in one corner. For that, he needed a daily chest x-ray. They put him on a percussion bed and used percussion vests and suctioned him many times daily. It is coming back to me how much I worried about his lungs. His blood pressure and heart rate were always being managed as well. I worried regularly every time his fever would start to spike worrying about an infection. At one point, one of my favorite ICU docs said to try not to look at the monitors all the time. He said as parents we can't help but do this but managing all of this is just what ICU does and goes with the territory. It took a couple weeks I think, maybe 3, before things started stabilizing and there were not daily concerns over everything. He continued to need lung percussion though and even contracted pneumonia 2 months after we left the hospital. That entire winter we used a percussion vest at home - however, this past winter we have not needed it. Managing all those vital signs was a stressful time that I do not miss and hope to not have to live through again! Prayers for peace and for healing! I assume also after IVIG they will do plasmapheresis and when he wakes from his coma, he will not flutter his eyes and say hello. For us he opened them slowly, a slit at a time, then had to learn to focus on us then eventually we knew he understood who we were. It's a long road, but it will get better!
Thank you for always responding to me.. I am so glad your son got through all of this and it is comforting to know we are not the only ones.You are right, it is so hard not to stare at all the monitors, a doctor also said to me to try not to focus on that but it's just impossible. And when I can't be there it's because I am trying to make sure my sons needs are met (thank god for my mom being able to get time off work to help with him) or get paperwork done and now worrying about keeping a roof over our head as he was our only income and did not have disability. My nerves are so shot I don't even know how I'm getting anything done, the days seem to blur together. all I know is I have to keep going for both him and our son. The doctors have not mentioned the plasma yet, maybe they are waiting to see how he responds to the IVIG. I am just waiting on the day he can open his eyes... I know it will come in time and I just try to focus on that. Thank you
Johnsmom said:
Hi Emily, don't despair. As I take myself back, all the ups and downs come back to me. Lung management was HUGE. He constantly had gunk in his lungs and I'm sure it was pneumonia a few times. They percussed him constantly and for a time in ICU had a partially collapsed lung in one corner. For that, he needed a daily chest x-ray. They put him on a percussion bed and used percussion vests and suctioned him many times daily. It is coming back to me how much I worried about his lungs. His blood pressure and heart rate were always being managed as well. I worried regularly every time his fever would start to spike worrying about an infection. At one point, one of my favorite ICU docs said to try not to look at the monitors all the time. He said as parents we can't help but do this but managing all of this is just what ICU does and goes with the territory. It took a couple weeks I think, maybe 3, before things started stabilizing and there were not daily concerns over everything. He continued to need lung percussion though and even contracted pneumonia 2 months after we left the hospital. That entire winter we used a percussion vest at home - however, this past winter we have not needed it. Managing all those vital signs was a stressful time that I do not miss and hope to not have to live through again! Prayers for peace and for healing! I assume also after IVIG they will do plasmapheresis and when he wakes from his coma, he will not flutter his eyes and say hello. For us he opened them slowly, a slit at a time, then had to learn to focus on us then eventually we knew he understood who we were. It's a long road, but it will get better!
Thank you
Lynn said:
Still praying!
I understand. Not entirely about your income because my husband was able to take a month of vacation off initially (his vacation had just turned over when my son got sick) and he took 4 weeks off. Then he had to go back to work and we took turns being at the hospital which meant, when I was at the hospital and he was at work, my older kids were tending to everything. I have 12 kids and John is my 6th. I hate being away from my 1 y.o. so much especially. We had a good community support and people made dinner for us every night. But I still hated being away from my other kids all summer. I also researched specialists in ADEM and found someone at Boston Children's who was more of an expert than U of M. I mentioned it to our docs and they graciously said they would consult with him - no pride or arrogance. I would ask them if they've consulted with a specialist in adult ADEM and see if they would be willing. Not to put more on your plate. Anyway, it is a tough time that you think you won't make it through -but entrust everything to God and He will help you. When I was feeling my most discouraged and starting to despair, I would pray for anything, some small thing to encourage me and he was faithful and always gave me some tiny sign to help me through. Continued prayers!
Emily, My daughter was 2, but thankfully, she was not in a medically induced coma. She was in an ADEM coma for about 3 days until the first dose of steroids. She breathed fine on her own, but she was unresponsive, and did not open her eyes. Fortunately for us, the steroids worked. 24 hours after the first dose she opened her eyes. She had to relearn how to eat, walk and talk. It was almost 4 weeks before she could stand up. I always wondered how all of my sick patients at my job could just sit there and stare at the wall all day, no TV, etc… And then I realized how. It takes all of your mental energy just to make it through the day. But you can do it. How is he doing? How high did his ICP's go? Are they using propofol for his coma? Are his pupils equal and reactive? does he move all of his extremities? did you ask the doctors about the cancer possibility? Keep me posted, and feel free to ask me if you have any burning medical questions you feel weird asking your own team. I only check in every few days, but I will get back to you.
Mindy
Emily said:
Thank you SO much for your response, knowing that you are an ICU nurse gave me great comfort. Thank you for what you do to help others! Do you mind if I ask how old your daughter is & was she in an induced coma? I am sorry to hear she had to go through this terrible disease but glad she has recovered. Tomorrow is 14 days/2 weeks he will be in the induced coma, it has been a roller coaster. But today was his third straight day with his ICP/pressure number under 20 however he did develop a fever today so they had to put cooling wraps on him & started him on antibiotics rite away. Also when he is laid flat his pressure goes up so they are going to try to hold off on the trach for a few days. I do know he will come out of this fighting once he heals and everything levels out. Thank you so much.
Sunshine said:Emily, I am an ICU RN. May daughter had ADEM 3 years ago. ADEM is extremely rare, and I actually have never taken care of a patient with it, only have had the experience with my daughter. We see a lot of great outcomes in the ICU, patients are in medically induced comas for a long time, and come out of them just fine. The hard part is, it takes time. Do not be scared when he first wakes up, because he probably will be confused and may not be doing well at first. This is not any indicator of how he will be doing in a few months! It often can take a week or more for the patient to come out of the haze of the coma. Additonally the recovery from ADEM takes up to two years. It took my daughter 4 months just to regain walking steadily, and she continued to progress for almost two years, and still she gets stronger 3 years later. Just remember, the trach and feeding tube are temporary, and patients are a lot less stressed consistently when they get the tube out of their throat. It allows them to have the oral/motor portion of themselves back which controls a lot of stimuli to the brain. Keep us posted, we are all keeping you in our thoughts!
Good news these last few days. His ICP# have continued to remain under 20 for the last 5 days. When he is laid flat they still go above 20 but not nearly as bad. Befor when he was laid flat it went as far as 80, the next week around 50 and now around 30 but as soon as he is moved back to sitting position it returns to 20 or under. Yesterday they decided to lower his induced coma & pain meds. He even had a trach and feeding tube surgery that they did in less than an hour right in his room and his ICP# remained at 11- 13 after it. I could not believe it. He is even able to be switched to a special air mattress to prevent sores & will help his back, etc. Today they lowered his coma med down AGAIN, and he is tolerating it well. He is even showing slight movement like when they swab his mouth he slightly tries to bite down a bit. I am beyond ecstatic! As long as he continues on this road, they will continue to gradually taper him off the coma meds until he can open his eyes. At that point they will understand a little better how he is really doing. I am bearing in mind he may not be himself as soon as he comes out of this and it will take time. That part is scary, but I just have this overwhelming feeling that it is uphill from here, slowly but surely and in time be on the road to recovery, and more importantly be able to see our son (3 in May) who really misses his Daddy, he asks about him a lot. Any input would be greatly appreciated if you or a loved one have got to this point? Anything I should keep in mind?
Thrilled to hear he is showing improvement. Still in my prayers.
Robin
Ps.. the trach and feeding tube surgeries where done to prevent infections and can easily be reversed when he is ready. From what I understand... They explained a breathing tube (if left in too long) can also cause damage to the throat, vocal cords etc. And he will have better nutrition with feeding tube right in his belly/gut as opposed to thru his nose. They also said he will be more comfortable over all.
Emily said:
Good news these last few days. His ICP# have continued to remain under 20 for the last 5 days. When he is laid flat they still go above 20 but not nearly as bad. Befor when he was laid flat it went as far as 80, the next week around 50 and now around 30 but as soon as he is moved back to sitting position it returns to 20 or under. Yesterday they decided to lower his induced coma & pain meds. He even had a trach and feeding tube surgery that they did in less than an hour right in his room and his ICP# remained at 11- 13 after it. I could not believe it. He is even able to be switched to a special air mattress to prevent sores & will help his back, etc. Today they lowered his coma med down AGAIN, and he is tolerating it well. He is even showing slight movement like when they swab his mouth he slightly tries to bite down a bit. I am beyond ecstatic! As long as he continues on this road, they will continue to gradually taper him off the coma meds until he can open his eyes. At that point they will understand a little better how he is really doing. I am bearing in mind he may not be himself as soon as he comes out of this and it will take time. That part is scary, but I just have this overwhelming feeling that it is uphill from here, slowly but surely and in time be on the road to recovery, and more importantly be able to see our son (3 in May) who really misses his Daddy, he asks about him a lot. Any input would be greatly appreciated if you or a loved one have got to this point? Anything I should keep in mind?
Hi Brittany, Thanks for asking! I think we are on the road to recovery.. they are starting to reduce his coma meds. I posted a more detailed reply to my original post. Thank you!
Brittany said:
Hey, how is your boyfriend doing? I'm hoping his recovery is coming along. And how are you coping? I will continue to pray for a speedy recovery for him.
Hi, This Thursday, it will be 3 weeks in a coma for him, but things are starting to look up! His ICP# has remained at or under 20 in sitting position for the most part. In the beginning, When his ICP did go over 20 they gave him Mannitol, like a sodium med to dry him out & that worked. At that time his temp spiked severely and they had to have a cooling machine (I think they called it a sun blanket?) keep him regulated. Luckily we are past that stage now! I will have to ask exactly how high his ICP went, I can't remember. He has basically not been able to move from sitting position since this started. The IVIG treatment ended 3 days ago.They use Pentobarbital for his coma with Fetanyl for pain. They are starting to lowering those the past 2 days!! I saw them check his eyes yesterday they are equal and he has a good cough. he does have a blood clot in his right leg that moved up past his knee that they are controlling with Heperin. I am worried about that.. I did ask about the cancer but the doctors seemed unconcerned, they say this is the treatment he needs for his brain regardless, plus he still can't be laid flat for any length of time for any scans yet. I apologize if all the info I gave is all over the place. Please also check out the reply I posted to my original post for a more in depth update. I'd really love to hear your feedback!
Sunshine said:
Emily, My daughter was 2, but thankfully, she was not in a medically induced coma. She was in an ADEM coma for about 3 days until the first dose of steroids. She breathed fine on her own, but she was unresponsive, and did not open her eyes. Fortunately for us, the steroids worked. 24 hours after the first dose she opened her eyes. She had to relearn how to eat, walk and talk. It was almost 4 weeks before she could stand up. I always wondered how all of my sick patients at my job could just sit there and stare at the wall all day, no TV, etc… And then I realized how. It takes all of your mental energy just to make it through the day. But you can do it. How is he doing? How high did his ICP's go? Are they using propofol for his coma? Are his pupils equal and reactive? does he move all of his extremities? did you ask the doctors about the cancer possibility? Keep me posted, and feel free to ask me if you have any burning medical questions you feel weird asking your own team. I only check in every few days, but I will get back to you.
Mindy
Emily said:Thank you SO much for your response, knowing that you are an ICU nurse gave me great comfort. Thank you for what you do to help others! Do you mind if I ask how old your daughter is & was she in an induced coma? I am sorry to hear she had to go through this terrible disease but glad she has recovered. Tomorrow is 14 days/2 weeks he will be in the induced coma, it has been a roller coaster. But today was his third straight day with his ICP/pressure number under 20 however he did develop a fever today so they had to put cooling wraps on him & started him on antibiotics rite away. Also when he is laid flat his pressure goes up so they are going to try to hold off on the trach for a few days. I do know he will come out of this fighting once he heals and everything levels out. Thank you so much.
Sunshine said:Emily, I am an ICU RN. May daughter had ADEM 3 years ago. ADEM is extremely rare, and I actually have never taken care of a patient with it, only have had the experience with my daughter. We see a lot of great outcomes in the ICU, patients are in medically induced comas for a long time, and come out of them just fine. The hard part is, it takes time. Do not be scared when he first wakes up, because he probably will be confused and may not be doing well at first. This is not any indicator of how he will be doing in a few months! It often can take a week or more for the patient to come out of the haze of the coma. Additonally the recovery from ADEM takes up to two years. It took my daughter 4 months just to regain walking steadily, and she continued to progress for almost two years, and still she gets stronger 3 years later. Just remember, the trach and feeding tube are temporary, and patients are a lot less stressed consistently when they get the tube out of their throat. It allows them to have the oral/motor portion of themselves back which controls a lot of stimuli to the brain. Keep us posted, we are all keeping you in our thoughts!