My sister (aged 51) has been in a hospital bed for over a five weeks, unable to move, talk or eat. At first she was totally unresponsive, had high b/p and fever. She was on a ventilator and had to have a trake & PEG inserted.
After seven plasmapheresis treatments she is now out of ICU. She seems stable and appears to be improving at a snail's pace but is not able to function, move, talk or eat. She is grinding her teeth really bad, and was given Botox to help alleviate the grinding.
The doctors say there is nothing more to do now except to get her into a long term care facility and get some p/t, and that time will tell.
Anyway, if anyone out there has some insight I'd appreciate hearing your thoughts.
I’m sorry to hear about your sister. Therapy helped me tremendously to recover. Try to get her into an impatient therapy hospital, I was at health south for a month and it was the best and most therapy and care I could have asked for. Also, once I could swallow, my doctor told me to take omega fish oil and eat lots of salmon. I don’t know why but those are supposed to be good for your nervous system. Other than that, it’s going to be a long road to recovery so hang in there! prayers don’t hurt either.
Sorry to hear about your sister. It is going to be a very long road. My son, who is 18, has been dealing with this for 7months now. I agree that you need to get your sister into an inpatient rehab first before the long term care place. In Ohio, where we are, long term care places are nursing homes with about 1 to 2 hours of therapy a day. In patient can give 3-5 hours a day. My son still has the trach and peg. We are at a snails pace too, but I thank God everyday my son is alive and improving, moving forward in a positive direction. Keep the faith and good luck. Keep us posted too please.
Thanks everyone. I will be inquiring about inpatient care tomorrow. Makes a lot more sense than long term care which definitely seems more like nursing home.
My son last year at age 12 was in ICU for 5 weeks. He received his trach after 4 weeks and moved to rehab floor for another 2 months till we were discharged. He spent the next 9 months in outpatient rehab doing 2-4 days per week of OT, PT, Speech, art therapy, etc. We took 2 months off for summer break. Physically, he is probably about 90% EXCEPT for some major Heterotopic Ossification that formed in his hips. We are facing major surgery for that. He cannot stand up straight completely. His gait is off and he has significant range of motion issues in hips. Without that, he'd be doing so much better physically (big sigh). Mentally, he still has deficits. Difficulty with focus, his affect is different than he used to be, he acts less mature, judgement not as good. These are very hard things to face and at 14 months out, I don't know how much better they will get. Still, I'm glad he is better, that he is still with us. It was very scary at first and we didn't even know if he would make it.
My name is Phillip, I was exactly the same but i am slowly recovering. Not the same guy i was but much better
This illness comes on so sudden with such devastating effect. My family were very worried. In my case I was admitted to
hospital with flu like symptoms but it soon came apparent it was no flu virus, it took a neurologist from a different hospital to asses what it was, I was in hospital for three months before being left back home.I was 55 at the time that was 2 years ago and i am still feeling the effects. My left side is still very weak ,i need to use a stick if i walk any sort of distance. My mental state changes from day to day but i am able to do a lot more than i could. It is just as difficult for our family, it as been very difficult for my wife, with changes in character (temporary agression changes) but i have calmed down i am on 150 mg of sirtraline tablets to calm me down. Onlky yesterday i was with the mental health people who understand our issues it is just a pity that there is not a lot of understanding by the general public about adem. ADEM is usually a childrens illness but it affects adults too as you have seen. It is going to take a long time for your sister to recover, perhaps she will never be the same person as she was before but like i have FINALLY COME to say i am still here, whatever issues i have. good luck to your sister JP and too you all, be patient she will need a lot of understanding and care from you but there are other people going through the same thing. That does not help you or your sister, but just knowing that there are people out there that understand helps.
Thanks for your reply. Sor sorry to hear about your ordeal.
Last month it seemed like my sister would never recover but in the past week we've seen some progress, but very slowly. It helps to hear other stories from folks that have been through something similar. Especially when there are no answers. Apparently my sister pulled out her feeding tube this morning. That might sound bad, but to us it's a good sign since it means she is becoming aware of things.
My son was in ICU for 5 days before they discovered his ADEM. It was extremely sudden onset with coma. He became sick again after what seemed like a flu virus went through the family. I called 911 when he was projective vomiting and not able to talk or move very well. Anyway, it was a horrible time, in a coma for about 4 weeks with just about NO responsiveness at all for 3 weeks. It was slow.
I think there is still hope. Some days I wonder if he will be mentally able to drive, to go to college, to live on his own. But we pray A LOT and others pray for him still, too. I do think there is hope but I think it is an awfully long road.
We are at 14 months out. One of our worst complications was developing heterotopic ossification around his hips while in the coma and early days of rehab. It inhibits his range of movement and he is slightly bent over when walking. Hopefully surgery can help us with this.
I'm sorry to hear about your sister. It's a heartbreaking situation. I had ADEM but it was nothing compared to those who were mentioned here. I was in ICU for two weeks but had a smooth recovery thanks to the physical and occupational therapy, both of which lasted for about a month. 9 months passed and I'm pretty much recovered, except my right hand isn't as strong (I play an instrument so it's a clear difference).
Well what I wanted to say that the recovery period varies. But I couldn't believe what these families are currently facing. Stay strong and think positively, all of you.
Thank you for your thoughts, and sorry to hear about your situation.
I just got back from visiting my sister out of town. She has improved by leaps and bounds, and her doctor is very impressed with her progress. However, it was shocking to see her lying there looking like she did. She certainly has her personality back but has a really long way to go, and is not all mentally there. It's only been about two weeks since she "woke up". Hopefully she will continue to improve.
Your sister, and be default you and your families, have been through so much. Please look into diet to help recovery as much as possible. Greta was also put on a vitamin D dose right away, to help prevent a relapse. We watch her diet closely and she has done well with the physical parts and no relapses. Emotional issues are still underway, but this isn't something you recover from overnight.
Your sister's body has been through so much that the simpler, more plant based and whole foods based her diet is during recovery, the more her body can spend time and energy healing instead of breaking down lots of processed foods into useable parts.
Dear Greta's mom, I'm surprised to hear you say "they put her on vitamin D" to prevent a relapse. No one suggested any check of my son's vitamin levels and when I asked them to check (knowing that the similar disease, MS, has sometimes been thought to be brought on by lack of vitamin D)... they did and came back and said he was a little low on vitamin D but everything else was fine. So,they put him on D, maybe to appease me. They never suggested it would prevent a relapse. It has been a year and I keep up with his Vitamin D supplements. how much is your daughter on? Did the hospital docs actually suggest this?
I notice we have the same style of moniker - identifying ourselves as the mother of these kids going through this nightmare. I feel for you. At Dallas Children's Medical Center, we have some of the few specialists in the country dealing with rare demyelinating diseases. They are very aggressive in dealing with this stuff - constantly doing research and learning all they can. Yes it was one of the doctors that told us she needed to have good Vitamin D levels as it has been shown to prevent relapse in some cases. We got Greta on a dose right away and there have been no relapses. Her physical issues have mostly been resolved. It is emotional and cognitive issues that we are still working on, but after reading many of the stories on here - Greta had it easy. Every day we count our blessings at how much she has recovered, how quickly, and how miraculous it was that we were sent 3 1/2 hours away to Dallas to a hospital that has a team dealing with ADEM when we didn't even know what the mass on her brain was. Truly thankful.
Johnsmom said:
Dear Greta's mom, I'm surprised to hear you say "they put her on vitamin D" to prevent a relapse. No one suggested any check of my son's vitamin levels and when I asked them to check (knowing that the similar disease, MS, has sometimes been thought to be brought on by lack of vitamin D)... they did and came back and said he was a little low on vitamin D but everything else was fine. So,they put him on D, maybe to appease me. They never suggested it would prevent a relapse. It has been a year and I keep up with his Vitamin D supplements. how much is your daughter on? Did the hospital docs actually suggest this?
Can you tell me how old your daughter is and what is her does of Vitamin D? Do you have her levels tested regularly? And is that the only thing you do to prevent relapse? Now I want to pick your brain after telling me you had all those specialists!
John is doing quite well given the severity of his case. His really only physical problem except for some very minor fine coordination issues, is that he developed heterotopic ossifications in his hips and it greatly affects his range of motion and posture. We are hoping to have it surgically dealt with but he is not ready yet. We are considering coming to Houston to a doc who does a lot of HO surgery.
Thanks for any great info you have! Does your daughter do fish oil?
Greta was 8 1/2 when ADEM struck and she is now 10 1/2. They put her on 2,000 IU of Vitamin D3 per day. Greta presented mostly with optical neuritis and a 3 cm right temporal brain mass. She lost most of her vision in her left eye, but regained it all after proper treatment. Regular visits with her eye doctor show signs of damage, but she has 20/20 vision. So thankful.
Dr. Lana Harder is the neuropsychologist on the team that works the most with the demyelinating diseases kids. She's been the most helpful as far as understanding behavioral and cognitive issues. She was one of the experts that came and did presentations at the special TMA family camp this summer. So glad the TMA welcomes ADEM and NMO kids into their camp. We learned so much! Dr. Harder and the team suggested that we get Greta evaluated for physical therapy to help with her fine motor skills - one of the common issues after ADEM, as well as being very literal, decreased math skills, perseveration and memory fluctuations. Greta is pretty much textbook. She's gone down one grade level in math, but is doing better so far this school year. She is very literal and we spend a lot of time explaining jokes or figures of speech. Memory fluctuations are for real. Her memory is perfect, it just fluctuates. It's as if her memory is properly filed away in cabinets and every once in a while she can't find the right key to the right filing cabinet to retrieve what she wants, but it is in there! Perseveration doesn't begin to describe Greta. She is perseveration! When she latches on to something - she doesn't let go. She's worse than a honey badger, one of Greta's favorite tenacious creatures that she likes to compare herself to. Greta also has trouble processing emotions, but it is most likely due to all of the above.
Imagine if you had memory issues, went down a grade in math, couldn't help latching on to things or ideas without letting go and then couldn't understand a basic joke or figure of speech from everyday conversation! We'd probably be easily angered and frustrated as well. Greta has seen a counselor in the past and we are trying to find a new one that is a better match for her. Seeing a counselor at least once a month and knowing what we are up against are some of our biggest helps in dealing with all of this.
Another thing we learned at camp is that these kids work really hard to have a normal experience at school all day long. So this means they save all the "real stuff" for at home where they feel safe. They've been holding it in all day and we get the full blessing. It's a lot to absorb, but at least we know how it works now and we can help Greta as much as we can.
Johnsmom said:
Can you tell me how old your daughter is and what is her does of Vitamin D? Do you have her levels tested regularly? And is that the only thing you do to prevent relapse? Now I want to pick your brain after telling me you had all those specialists!
John is doing quite well given the severity of his case. His really only physical problem except for some very minor fine coordination issues, is that he developed heterotopic ossifications in his hips and it greatly affects his range of motion and posture. We are hoping to have it surgically dealt with but he is not ready yet. We are considering coming to Houston to a doc who does a lot of HO surgery.
Thanks for any great info you have! Does your daughter do fish oil?
Thanks for all the information. You didn't say if she was ever in a coma. It doesn't sound like it. At UM here, John's case was the worst the doctor's had ever seen. He didn't move for 3 weeks and barely over the next week. he was still in a wheelchair when we were discharged at 3 months.
If you could give me the name of a few of the best docs who do ADEM research, I would really appreciate it. Obviously, having such an acute case, we had a lot of ground to cover and lots of questions about preventing relapse.
My son fortunately has totally avoided the emotional problems. he is very even tempered and not given to moods or feeling down. He was extremely perseverative in the first 6 months. It has gotten MUCH better (it was mostly about food!). We are about 15 months post onset and I would say he has made some great gains in just the last few months. More conversational, slightly better with that executive function, more self-awareness. If we can get past his bone issues with his hips successfully, we will be doing quite well! And avoid a relapse of course!
Greta had no coma. She had mono. On a thursday check up, she reported strange eye issues. Friday she had a CT scan and Friday night we checked into Dallas Children's Medical Center. By Tuesday, Greta was properly diagnosed and steroid treatment was started.
We were so blessed to have Greta diagnosed and treated so quickly. The more we learn about the experiences of others and so forth, we realize more and more just how blessed we are.
At Dallas Children's, you can see Dr. Donna Graves, Dr. Benjamin Greenberg and a new pediatric physician being trained in a fellowship program, Dr. Allen Desena. Dr. Lana Harder is the neuropsychologist.