The insurance company wants to see measurable functional improvement. And we need time for that and they don’t allow for that time. It’s an impossible situation
Lynn said:
Kris, my name is Lynn and I too have/had ADEM. It’s been almost 3 years and I have come through it fairly well. I’m sorry you are going through this. Have you seen this neurologist before and does he really understand ADEM? In addition, have you talked to a Care Manager at the insurance company? What reason is the insurance company giving you for moving your husband? You may need some assistance to get things taken care off. If we all work together, we may be able to give you some direction.
I think the issue lies with how knowledgeable the neurologist is. I recall that my son had to be transferred to another hospital for cognitive rehab between chemo treatment because we were only had 50% insurance coverage. The doctor at this hospital was not very knowledgeable about ADEM and said there was no improvement in his condition and did not see the benefits of rehab. We were also turned down by one cognitive rehab facility because they believed my son's condition was degenerative. One doctor at the hospital even told us that the myelin sheath in the brain does not regrow. Thank God I did my own homework because there is so much ignorance about the disease and how the brain heals even among the medical establishment. We were happy that we were able to change insurance and remain at the University Hospital thereafter even between treatments. My son was admitted in April at a normal hospital where the MRI showed lesions on the brain. After two weeks of antibiotic treatment the amount of lesions he had doubled and the one on the left side of the brain was twice as large. His lesions only stopped growing around August. (the lesions were growing for 4 months between treatments before it eventually stopped) From my research ADEM is more severe in adults. Only in November did the MRI reveal that the lesions had stopped growing and that some had healed. Our neurologist was able to motivate the need for the various treatments that he needed. It is so hard dealing with the illness and the medical community at the same time. That being said every case is unique and hopefully you husband's case is not so severe, there is light at the end of the tunnel. It was also a battle to get him admitted to the University Hospital but after plenty of negotiations and a wrong diagnosis he was accepted. Do not give up. I will continue to pray for you. You are in my thoughts everyday and it will get easier but it is a long road. We focus and celebrate the slight improvements we see on a weekly basis. He is improving slowly and is getting stronger everyday. Hope you can get past the medical insurance issues so you can focus on the healing process.
So sorry to hear all that you're going through. I also had ADEM as a consequence of my seasonal flu shot. My 5 week hospital(stay and nursing home stay was similar to yours. My insurance company kept kicking me from one hospital to the next and insisted on a less than good nursing home. My husband fought and fought for me, and I don't know what the consequence had been if he hadn't fought.
I returned to work 3 months after I was released from the nursing home....way too soon. I was forced into early retirement as a teacher as a result.
Seven years later, I am about 98% recovered. I do have one serious health issue which the DRs believe was a result of my ADEM -- severe abdominal/ pelvic pain.
I filed a complaint with the US Government over the consequence of my flu shot and was awarded enough $ to pay cash for my home. Thanks be to God. I am 72 now, and have no idea what I'd be doing without that settlement.
Again...I wish your family only the best. He will recover! He will recover!
Kris, I have seen lots of good info for you here but one thing that helped me when my adult son was hospitalized was that I found a "Patient Advocate" within the hospital. Although I'd never heard of that before, it is my understanding that it's something common within hospitals. They're there to represent the patient. Hospitals usually always have social workers, too. Social workers are a great source of support & information in your specific community & it takes some of the burden off of you trying to do all of your own investigative work.
Hi. I’m Kris’s sister. I just got finished emailing all the doctors on the neurology team who specialize in Neuro-immunological disorders at University of Colorado. We are praying someone takes an interest in our case! My dad and husband are also calling these docs, hoping that the squeaky wheel gets them interested!
Thank you all for offering suggestions! It helps to know we aren’t alone in this.
I'm not sure if anyone mentioned this, nor if you have already gone down this path- but someone who worked in healthcare for many years told me to call the insurance and ask for the credentials of the person making the decisions in regards to your (Kris) husband's care. Per HIPPA they are required to give you their background and credentials, and often times it is someone who does not have the appropriate medical training to be doing so, i.e. not a neurologist. I did not have to do this, so I do not know how successful it is, but may be worth a try to get the right person from the insurance side to look into his case.
I learn something much later, too, ask this person if they are licensed to practice medicine in the state where your husband is being treated. At the very least, they are probably neither.
Blerta said:
Hi Kris and Rebekah-
I'm not sure if anyone mentioned this, nor if you have already gone down this path- but someone who worked in healthcare for many years told me to call the insurance and ask for the credentials of the person making the decisions in regards to your (Kris) husband's care. Per HIPPA they are required to give you their background and credentials, and often times it is someone who does not have the appropriate medical training to be doing so, i.e. not a neurologist. I did not have to do this, so I do not know how successful it is, but may be worth a try to get the right person from the insurance side to look into his case.
I am going to do that! The approved days are almost up then it goes on a week to week basis, so that is worth a try! My sister sent emails to the doctors at university hospital and we received one reply. I am hopeful that they will want to see Robert.
My ADEM experience started in January 2013 age 47 after a severe flu. My hands were numb and I was sent immediately for an MRI plus a spinal tab.... ADEM was diagnosed from the beginning and solu medrol infusions administered. 6 months later I had a second relapse, much worse than the first, what docs diagnosed as recurrent ADEM. To cut the story very short it took close to 3 years before I started to be in full control of myself and of my body. Luckily the optical nerve was not affected and I managed to control bladder related issues and muscle spasms on my own, though cognitive problems were more persistent. Now, 3 years later I still feel numbness in both hands and legs and dizziness.... It is very different in each person, one thing is for sure, it takes time and patience...
No one is offering us any hope. Robert continues to improve little bits at a time. He is no longer in the coma but can’t speak or move much. I contacted dr. Greenberg at university of Texas but he is no longer treating adem. Soon my husband will go to a nursing home where he won’t get the physical therapy he needs. I am desperate, I feel like Robert will slip through the cracks and never come back. I don’t know what to do or where to turn.
(I copied this from this site on the discussion e titled " in need of ADEM Specialist. Please look at that page as well.
Some one also recommended the Cleveland Clinic in Ohio.
"I would highly recommend Dr. Benjamin Greenburg in Dallas, Texas. He is located at UT Southwestern. I went and saw him as a second opinion and really liked him. I live in Houston And I am currently with a Neurologist at the MS Clinic with Baylor College of Medicine in the Medical center in Houston. (Dr. George Hutton) I would recommend him as well. Dr. Greenburg looked over my case and I saw him as a consultation. I really liked him but decided to stay with my doctor in Houston since they had similar treatment plans."
I hope you find someone!
I hope the lesions have stopped growing. If they have then the body slowly starts repairing itself. My son could not talk for about two months. When he first started talking nothing made sense. He could not move as well. We had to lift him up and down on the bed. Be careful when you do this get the nursing staff to help. I injured myself in the process. Do whatever you can at this stage to cognitively stimulate him. Let him listen to music etc., tell him that he is getting better everyday. It is important for him to believe that he is healing. My son is far from recovered but the other day he surprised me by showing me where to go to set up my internet on my Apple TV. That was truly a great moment. When they say progress is slow it really is slow. Just hang in there do not give up hope. Hope he gets treatment soon. When the going gets tough the tough gets going.
Kris, what do the MRIs report? Are the lesions getting bigger or smaller? That falls into the ADEM treatment topic. For me steroids worked. ADEM is like Multiple Sclerosis once, so even if you can't find the best available ADEM doctor, find the best available MS doctor. We couldn't find any ADEM doctors, either.
What about the traumatic brain injury recovery treatment? I had inpatient therapy every day from 9am-2pm. That was a big part of recovery. It was physical, operational, and speech pathology.
It sounds like they are giving up and that is totally fucking unacceptable both from the healthcare and from the insurance provider. Find a medical advocate in the hospital; now is the time to get him the most possible treatment it will pay great dividends in the end.
What can we do to help here Kris? Just say the word; just ask and we will do it.
I did see Dr schriener at university hospital. She looked at the MRI from November and said that she doesn’t see that he will have measurable improvement from where he is now. She did order another MRI which I have been trying to schedule. I don’t know how to get him better treatment with the insurance he has. They won’t pay for anymore skilled nursing. How do I get him more treatment? I don’t know how to navigate through the insurance. I don’t know if I should put him on my insurance because his is only good through the end of the month. I don’t know if I should try to get him on Medicaid since he is now on longterm disability. How do I get him more treatment? He is getting better, I spend more time with him than anyone so I see it. maybe if the MRI shows improvement the university hospital doctors will help me.
As I see it if the new MRI shows no new lesions and the lesions have stopped growing then he will start recovering. If not he may need more treatment to stop the lesions from growing. The only medication my son is on since the lesions has stopped growing is Vitamin D 10 000 units a day, Gabepentin (anti seizure medication) and cyprexa for depression. Cognitive rehab is important. The neurologist stressed getting him to read as much as possible, his was quite severe and his attention span is so short but we found he enjoyed reading the words of songs. I made flashcards too with words and phrases because he still struggles to read sentences. We are not always successful at getting him to read. U tube has videos where words of songs can be read. Walking is also excellent for healing. The cognitive rehab center uses Tactus therapy to rebuild his cognition . There are apps you can download. We had to get my son private insurance that is quite expensive but we do not have much of a choice. We chose insurance based on what the university hospital and the cognitive rehab center accepts. One should not be dealing with the illness and battling the insurance and medical establishment all at the same time. We have good and bad days but we are still a long way off. Please push to get the next MRI done. Then you can proceed from there. All the best. This experience has given the word patience a new meaning. Sometimes I get so despondent but we have no choice to hope and move along. All the best to you. You are in my prayers everyday.
Hi Kris I was hit with Adem on April 14 2015. The first hospital I was in heavy doses of steroids didn’t work for me and felt it was ms When I shifted to another hospital and did plasma exchanges that mad a big difference after the 5 plasma exchange feel free if you want to exchange numbers or email. M H