I'm frustrated and confused

General
#1

My husband is not doing great. He is now in the third hospital because insurance keeps mandating. My husband opens his eyes and sometimes is responsive. We were told by the care team day before yesterday that the neurologist at the current facility doesn’t think he will improve past where he is only to find out he didn’t have all of the MRI’s. They had been increasing the muscle relaxer because his muscles are so tight and that made him even less responsive. We had them decrease it and yesterday he was a little more alert.

So we meet with the neurologist tomorrow after he has reviewed ALL of the information. Insurance is pretty much done unless we withdraw care which of course they will pay for. It seems insurance companies are not much interested in continuing aggressive care for brain injuries so the next step is he goes to a nursing home that I self pay for and he gets little therapy. I fear he will not make it. I am going to demand another mri and get another opinion but I really don’t know what to do.

He is 45 and was healthy and we had our whole lives planned out.

#2

Hi Kris,

I am so very sorry for all that you're going through. I had similar battles with insurance myself, and it didn't help that my husband's company changed insurance carriers all 3 years.

Is there anyone you know that can direct you to legal counsel? I'm battling the Social Security system myself, but that's sort of my last hope financially at this point.

ADEM is a rotten illness, and I wish you all the best. Please continue to reach out to our group - maybe someone has some helpful info.

Also, whereabouts do you live? I'm in Missouri. I know we sort of have to be our own support group, but maybe there's an MS group or brain trauma group you can reach out to locally.

Good luck and God bless you both,

LauraK

#3

Good evening Kris,

Get a second opinion with the best neurologist(s) that you can find and afford.
If they aren't serving your husbands needs, then they failed you both. Find a
place that will. There is always hope and room for improvement for brain injury
survivors.

Find a TBI support group in person or online http://traumaticbraininjurysupport.org/.
Every ADEM survivor needs to join a TBI group because they are dialed in on many
levels.

Might not be the right time here goes: a company like Allsop https://www.allsup.com/
exists to help with disability insurance. It is their job; that is all they do.

Just say the word what anybody here can do to help Kris; we are here for you
and hoping your husband keep recovering as quickly as is right for his body.

Sincerely,

Occipital

#4

Kris,

I am so sorry for what you and your dear husband are having to go through at this time. Then with the insurance closing it's doors to you in not wanting to aggressively treat him is even more disheartening. If you have a close friend or family member that you can take with you as you meet with these different people making all these decisions that would be most helpful. You need someone with a clear head that can help you advocate for you and your husband and help you stand up for what is right and best for him. Please be assured of my prayers for you at this time that you will have wisdom to know what to say and do. I know when my wife was diagnosed with breast cancer in 2008 that it really overwhelmed me as I considered the possibility that she may be taken from me. Thank God that did not happen but when you are going through something that is life threatening, it's wonderful to have the support of family to help bear you along during the trial. I wish you and he the very best outcome for this difficult situation.

Sincerely,

Mark, Moderator

#5

So sorry to hear this. Go through the human resources dept. at your or his job to contact the insurance company. They may be able to help you.
Please stay strong for your husband. Family is what is most important now.

Vince

#6

Hi Kris
I’m very sorry to hear about your husbands condition and how badly the insurance companies are handling your case. When my daughter was diagnosed we didn’t have insurance for her. They still treated her. She was given IVIG and predizone. She recovered in about 2 weeks. It’s been a year now this month and is doing fine. I know everyone’s recovery is different but I just want to give hope. We I’ll be praying for you and your family. MD Anderson has a neurology dept who specializes in ADEM. You may want to reach out to them. Good Luck.
Angelo

#7

Hi Kris,

My heart goes out to you. My family has been right where you sit. Keep fighting for your husband. I do not know the ends and outs of what is going on, or how long it has been or what treatments he has had..but the recovery from this is a long one. AND REQUIRES aggressive treatment and lots of rehab.

My sister came down with the flu in early February and was diagnosed with ADEM a week later. She was in a crappy hospital in San Antonio, and her Neurologist told us that she most likely would not get any better. He refused to administer plasmapheresis. WTF?!?! The only thing that she could do for herself was breathe! This was an unacceptable answer!

We fought for her, moved her, insisted on IVIG and when that did not work we insisted on Plasmapheresis, which was the last thing to try, and she began to come out of it almost immediately, but in super tiny steps. It took weeks, and it was agonizing to wait for it. When she started to move her fingers and look around, we moved her Texas Neuro in Austin, Texas. After that she went to CORE in Dripping Springs.

It took from February 2015 to After Christmas 2015 for her to recover enough to move into her apartment alone. She isn't 100 percent, but she is 90%! THERE IS HOPE! No one thought my sister would make it--and she did!!! She is 54 years old.

SO--Take Care of Yourself. Keep your Energy Up, EDUCATE YOURSELF, as you will need it to battle the DR's, the Insurance Companies.

Best to you and your husband. I will have you both in my thoughts and prayers.

This is a great article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152158/

Spontaneous improvement has been documented in patients with ADEM.[34] However, the recovery is incomplete in patients with ADEM not receiving any form of immune modulation treatment. No therapy has been established by controlled trials in ADEM. Use of high-dose steroids, plasma exchange, and intravenous immunoglobulin are based on the analogy of pathogenesis of ADEM with that of MS.[35,36]

Treatment of ADEM includes: (1) supportive, and (2) specific—high-dose intravenous methyl prednisolone, intravenous immunoglobulin (IVIg), and plasma paresis, and (3) physical and rehabilitation therapy [Figure 1].S

#8

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.

#9

Hi Kris! I am so sorry for what you are going through. The feedback above is a great place to start. In addition to, you may want to ask to escalate the issue with the insurance company, I.e ask for supervisors, managers etc. on a continual basis. Also, ask for the name and credentials of the person making the decisions on his case. This is all information that they are required to give you. It may be good to start asking family, friends and coworkers if they know anyone who works at the insurance company who can get you in touch with someone in leadership. Start calling and emailing them. I know this is so overwhelming and time consuming but it may help you get the best care for your husband. Another thing you can do and I believe hospitals are required to oblige, is ask for a second opinion and literally beg the Drs to help you. I had to do all of the above to have my husband transferred from a small hospital, that refused my wishes for a transfer, into a larger teaching hospital. Sending lots of prayers and good thoughts your way.

#10

Dear Kris,
My son was paralyzed and our lives were turned upside down to watch our brilliant five year old be affected by this illness after a fever. He is now eight years old and almost made a complete recovery other than some motor issues. You wouldn’t be able to tell talking to him or looking at him. Recovery is possible but my husband and I are physicians and we fought tooth and nail to get attention. We were turned away from the Er twice at a major tertiary care children’s hospital until we fought and got him admitted. We would have lost him had we not advocated for him as much as we have.

So arm yourself with information. Ask a lot of questions.

Share the specifics here and we can help you out.

#11

Also, how can any insurance company do this? Which insurance company is this? There are reports across literature about recovery in ADEM patients. It is criminal for them to push you to withdraw or show you the door out. Heavens sake, this is exactly why we get health insurance. Can you go to local news media? Can you get signatures? Can u talk to your legislator?

You need to build an army, keep ur emotions in check and give them a piece of your mind. Get the phone calls going.

This is an absolute travesty in healthcare for it to come to this.

Which state and city are you in?

#12

Your husband will improve. One neurologist told us my son aged 31 had one to five months to live and wrongly diagnosed him with PML. Even the biopsy they did revealed PML. At a university hospital he was correctly diagnosed as having ADEM. He was admitted in April 2016 and after two weeks in the initial hospital be became progressively worse. He was unresponsive, could not walk could not talk was not aware of his existence, did know who we were. His ADEM was very severe but with steriod treatment, plasma exchange and eventually chemotheraphy (3 doses of cytoxin and one dose of ritoxin) he is slowly recovering. He is able to walk, talk, slowly started reading and can do some maths now. We are still a long way off but the neurologist expects he will recover 100% by November 2016. We had to change insurance because my son had failed to submit forms. A mistake that worked in our favor. But thanks to Obmacare (no pre-existing conditions) were able to switch insurance and got 100% coverage. Premiums are higher and so is the deductible but the healthcare costs of ADEM is astronomical. My husband virtually had to micro manage the doctors to get my son the care he needed. You have to do all you can and learn as much as you can about the illness. Please read my blog. I hope it will help.It is under the members page. My name is Sarah. I will make a special prayer for you tonight. All the best to you.

#13

After two days with the lowered muscle relaxers my husband was very alert when I saw him yesterday afternoon. My daughter was with me when I got there and he actually spoke! I touched his arm and he said owww. The physical therapist said he cursed at him during therapy. I am amazed. We have a meeting with the neurologist today who told us just Tuesday that he didn’t expect any sort of recovery. I got a doctor at university hospital in Denver where we live to do a records review. He has done a lot of studies on MS and written so articles on ADEM.
I’m curious about something, maybe you all know. We are on my husbands insurance which is united health care. He is at the point he will move to long term disability and he will no longer have insurance through his work. So… This will cause a life changing event and I will switch us over to my work insurance. Will the new insurance start covering this illness? I don’t know who to ask, but maybe it will be a blessing.
All I know is my husband was drugged up and like a zombie and yesterday he was alert! I need him to stay where he is and get the aggressive PT. maybe this doctor at university hospital will take an interest in his case. I hope, I hope, I hope.

#14

Your first problem is United. Who will your insurance be through? Contact your insurance company and ask them questions about your/his coverage. Don't be afraid be contact someone in Human Resources at your company and ask for help with your insurance company. Plead your case and tell them you could use help. They're paying for the coverage, so they should be able to help somewhat. I'm thrilled your husband is showing signs of improvement. Keep in mind this will be a slow process. You'll ALL need to have patience. Celebrate each and every LITTLE improvement. My prayers are with you all,.

Lynn

#15



Kris said:

After two days with the lowered muscle relaxers my husband was very alert when I saw him yesterday afternoon. My daughter was with me when I got there and he actually spoke! I touched his arm and he said owww. The physical therapist said he cursed at him during therapy. I am amazed. We have a meeting with the neurologist today who told us just Tuesday that he didn't expect any sort of recovery. I got a doctor at university hospital in Denver where we live to do a records review. He has done a lot of studies on MS and written so articles on ADEM.
I'm curious about something, maybe you all know. We are on my husbands insurance which is united health care. He is at the point he will move to long term disability and he will no longer have insurance through his work. So... This will cause a life changing event and I will switch us over to my work insurance. Will the new insurance start covering this illness? I don't know who to ask, but maybe it will be a blessing.
All I know is my husband was drugged up and like a zombie and yesterday he was alert! I need him to stay where he is and get the aggressive PT. maybe this doctor at university hospital will take an interest in his case. I hope, I hope, I hope.
#16

You have to check if your insurance is in network with your doctors and the the hospital. If they are it would be fine and I am not sure what your insurance covers. We have a 80/20 plan the insurance will cover 80% of the cost once we meet our deductible. If you are out of network they will cover 50% of the cost only. The hospitals normally have advisers that will help give you more information. My son had a private insurance because he was self employed. We have 100% coverage for him now but the premiums are much higher and the deductible as well. I do not think according our experience that the insurance can refuse to cover him since Obmacare was instituted they cannot use the preexisting argument. But we normally need approval from them to do MRI and chemotheraphy. My son was initially in a drugged state too. They gave him anti-viral, anti-bacterial and anti-fugal antibiotics and he did not eat anything for two weeks. We are blessed that he is slowly recovering. This is really the hardest thing I had to endure. It is a long journey. All my love and prayers to you. The following two videos on ADEM (u tube) are very informative.

https://www.youtube.com/watch?v=BlrUFOj57Lk

Dr. Greenberg is my son's neurologist and has been amazing and gave us so much hope that he will recover. It is important during this phase if possible to mentally stimulate him. All my love and prayers to you.

#17

Kris, my prayers go out to you. When doctors finally determined my ADEM I had been sick over a month. I was put in the hospital on IV methyl prednisone and immuno-globulum (sp?)

#18

Hi Kris. My 10 year old son was diagnosed with A.D.E.M. in October/November. I am still fighting for him. I will my story for another time. I am sorry you are having a hard time and I understand your frustration. I am now stuck home with my son now with limited resources. I hope all works out with your husband and hope for a complete recovery. keep us in the loop

Lisa

#19

Kris thanks for the update; that is excellent news!

There will continue to be improvements of all kinds.

There is a lot of good advice on here about moving forward I won't repeat other than: just keep at it, get help from your friends and family, get help from your and his employer, push and get people to help pushing.

Now is the time and you and your husband are doing a great job.

#20

Kris,

Most work related insurance companies have a "life change" category that allows you to make changes in the middle of the insurance year. So adding your husband to your insurance should be an effective immediately sort of thing. As far as whether they will cover him or not, you are going to need to speak with an insurance rep most likely.

I think we have an ADEM doc in Denver somewhere. Please visit www.myelitis.org. They handle all of the rare demyelinating diseases and they are a great support system. They sponsor a fellowship program to train neurologists and pediatricians in these diseases so that there are more people out there that can knowledgeably help patients. They may even have some info on how to deal with insurance situations.

We also have a facebook ADEM group that is helpful as well. Many options for support. If Denver doesn't help much, you need to take your husband to University of Texas Southwestern and see Dr. Greenberg. He diagnosed our daughter and has been with her through 4 years of check ups and seeing her tremendous recovery and hilarious growing up. The team in Dallas is awesome.

Sharon (Greta's Mom)

Kris said:

After two days with the lowered muscle relaxers my husband was very alert when I saw him yesterday afternoon. My daughter was with me when I got there and he actually spoke! I touched his arm and he said owww. The physical therapist said he cursed at him during therapy. I am amazed. We have a meeting with the neurologist today who told us just Tuesday that he didn't expect any sort of recovery. I got a doctor at university hospital in Denver where we live to do a records review. He has done a lot of studies on MS and written so articles on ADEM.
I'm curious about something, maybe you all know. We are on my husbands insurance which is united health care. He is at the point he will move to long term disability and he will no longer have insurance through his work. So... This will cause a life changing event and I will switch us over to my work insurance. Will the new insurance start covering this illness? I don't know who to ask, but maybe it will be a blessing.
All I know is my husband was drugged up and like a zombie and yesterday he was alert! I need him to stay where he is and get the aggressive PT. maybe this doctor at university hospital will take an interest in his case. I hope, I hope, I hope.