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Life With Lupus

What do I tell the Judge?


#1

My wife is significantly affected by SLE Lupus, and while I am out of the loop now in terms of being able to discuss her condition with her doctors, I have to believe that her symptoms and behaviors are completely consistent with NPSLE Lupus, and include paranoia of me, psychosis, and reduced cognitive function. We are divorcing and in a custody fight because I feel that my children are no longer safe in her custody - she was going to leave them in the car for a couple of hours in the middle of the day in July while she went to a business meeting for a couple of hours without even asking me if I could help her.

The Judge said to my attorney "What is this Lupus stuff?", and his answer was weak. I would appreciate it if I could get an answer from those affected similarly as to how NPSLE or CNS Lupus would affect the ability of a single mother to safely care for her children?

I wish that I could help her, but I can't, and I feel that I have to do everything possible to help my kids. Please help me to do this. Thank you.


#2

Your testimony would mean nothing- it would have to be medical testimony from a physician and specific to your wife. There are many levels of lupus and a great many sufferers function just fine with this chronic illness. The fact she has SLE is not a reason for her to not have custody so you would have to have proof of her incompetence - such as examples of bad decision making that would be harmful to the children.


#3

Poobie,

I readily understand this, and recognize that her Lupus, its severity, and that even her shortened life expectancy are not reasons for her to lose custody. My initial preference was actually to have our kids spend as much time with her as they could while they still can. I have only reversed my position on this after having realized that they were in harms way. The instance that I had mentioned was just one example and there are others, such as driving 6 hours to see family during the day, spending all day there, leaving at 10PM despite family requests to stay, and driving through the night by herself with our kids in the car for another 5 hours when her fatigue was so bad the previous month that she was too tired to watch our kids in our pool. What I need to have my attorney explain to the judge is that there is a likely medical explanation for her change in behaviors, that the behaviors can result from both her Lupus or her 20+ years of Prednisone to control it, and that an examination from the appropriate medical expert was warranted and that she needs help that neither I nor our children can provide to her.


poobie said:

Your testimony would mean nothing- it would have to be medical testimony from a physician and specific to your wife. There are many levels of lupus and a great many sufferers function just fine with this chronic illness. The fact she has SLE is not a reason for her to not have custody so you would have to have proof of her incompetence - such as examples of bad decision making that would be harmful to the children.


#4

I have experienced similar. No kids but the mental issues. Search the net for Lupus Psychosis. My ex has vasculitius (sp?) and along with her PTSD from her childhood has caused her to experience many mental health issues: relationship with her daughter (doesn't exist), delusional disorder, suicidal, severe depression, PTSD, paranoia, delusions of grandeur, delusions that the people who love her are out to get her or having affairs. She took cytoxin chemo and that helped for about two years, then symptoms returned. She's a good person but until she realizes that she needs help all you can do is pray for her and take care for the safety for your children. You can have her committed if she is a threat to herself but they will most likely release her after a few days but could possibly get a psych eval done while there. She is protected via HIPAA(sp?) and other privacy laws because of what people have done to others in the past. My prayers are with you, brother. Educate your attorney about Lupus and psychosis related to SLE Lupus. NAMI has some good information and a good psychologist & psychiatrist would be best to consult, look for those that know about Lupus SLE and are familiar with vasculitis (inflammation of the veins and arteries, especially when it is located in the brain). My ex suffered from double vision because of vasculitis and since the eyes are by the brain, you can go from there..

Prayers!


#5

I am a single mother with sle lupus and other diseases I doubt if your ex’s problems are only due to this disease. If you are that concerned have your attorney approach her if she won’t listen to you about getting help. You will not find an ethical doctor to testify against her only one who can recount symptoms. Do you no longer want her to have contact with the children? Hope this works out for the kids.


#6

If they do a home study, make sure the social worker is aware of the issues via your lawyer. You might also ask a clinical psych for a lawyer recommendation for one that is familiar with this. My opinion "do not run her into the ground! Ever! She is sick and she can't help it." Your children need to be safe, need to have a relationship with you and your their mom. Always keep your best face to your children for their mother, she will always be their mom and you belittling her will only damage you in their eyes. They love both of you. Make sure your friends and relatives also do this for your children.



Lupus Husband said:

Poobie,

I readily understand this, and recognize that her Lupus, its severity, and that even her shortened life expectancy are not reasons for her to lose custody. My initial preference was actually to have our kids spend as much time with her as they could while they still can. I have only reversed my position on this after having realized that they were in harms way. The instance that I had mentioned was just one example and there are others, such as driving 6 hours to see family during the day, spending all day there, leaving at 10PM despite family requests to stay, and driving through the night by herself with our kids in the car for another 5 hours when her fatigue was so bad the previous month that she was too tired to watch our kids in our pool. What I need to have my attorney explain to the judge is that there is a likely medical explanation for her change in behaviors, that the behaviors can result from both her Lupus or her 20+ years of Prednisone to control it, and that an examination from the appropriate medical expert was warranted and that she needs help that neither I nor our children can provide to her.


poobie said:

Your testimony would mean nothing- it would have to be medical testimony from a physician and specific to your wife. There are many levels of lupus and a great many sufferers function just fine with this chronic illness. The fact she has SLE is not a reason for her to not have custody so you would have to have proof of her incompetence - such as examples of bad decision making that would be harmful to the children.


#7

Lupus doesnt make you psycotic and yes a single mom with lupus can safely take care of her kids.


#8

If you need really good information on all aspects of SLE Lupus - get "The Lupus Book" , A Guide for Patients and Their Families by Daniel J. Wallace, MD. The latest is the Fifth Edition. Dr. Wallace explains everything in great medical detail and then summarizes it in language the average person can understand. It's well worth the cost for those of us trying to understand, live with, and explain this crazy disease to others. Good luck!


#9

It sounds like she will have to go through a psych eval. There are tests they give to see how bad the cognitive impairment is. I have to go through this soon. The judge may also need to have her get an independent medical exam. A series of home visits might also be necessary to judge how impaired her judgement is as regards to your children. Unscheduled visits would be best since then they would see her when she was unprepared for them. Prednisone, high doses, long term can cause psychosis and paranoia. It’s not a good med to stay on long term. Are your kids old enough to call you if they feel uncomfortable around her? Do they know they can call the police if they are scared by her behavior? If it comes down to it you can call child protective services. They do evaluations also. I’m sorry you are having to deal with this but I’m glad that your children have an advocate in you.


#10

You are absolutely correct! Sad truth though is between Lupus and the medications they have to take can cause all sorts of physical and mental issues in "some". It drives me up a wall the way people will lump people into a category because of an ailment they have, it's not an all or nothing, each person is unique and their stories/cases are just as unique. Thank you for your words "Lupus doesn't make you psycotic...."



Steven Tatlow said:

Lupus doesnt make you psycotic and yes a single mom with lupus can safely take care of her kids.


#11

Hi I have sle also and have brought up 2 beautiful children I did not take any of the meds as I knew they were very strong and powerful so I opted to have no meds and coped extremely well your wife doesn’t need you being so negative towards her she needs care and understanding she probably doesn’t understand what’s going on in her body and feels threatened especially if your fighting over the children this will make her worse she probably is going through a flare up and in a lot of pain this illness is nothing to laugh at nor to be negative towards her share the responsibility between the 2 of you so she’s still able to see her children happy and content not scared and frightened my children have been great with my illness and never felt in danger with me and I would never forgive anyone if they took my children from me especially with this illness being able to be Managed and live a normal life I have never heard of anyone having their children took away with having sle the courts know we would not harm any child or human or animal you need to read and understand what your poor wife is having to cope with and then think about how you can help her and the children come to terms with what’s happening and share the responsibilities of being parents I hope she gets well soon and it all gets resolved calmly and professionally


#12

Have you tried CPS, or a mediator someone who could communicate to your wife that you are not the enemy and only want to help her keep the children safe? I can't imagine the stress she must be under, and having lupus to deal with on top of all that, no wonder she might not be thinking clearly. If you truly have any compassion or understanding at all you would move heaven and earth to get her the help she needs so the kids can be safe, even if means calling CPS or the police.


#13

Before I was dx with Lupus, I became mentally ill. I am married with 4 kids and worked full time. At the time, I was working at USNA and Desert Storm (Iraq War) was going on. The base was armed with Marines and tight security. Bottom line, I got paranoid. One day I was in the ladies room, which is a beautiful lounge. I was convinced that we were being shot at by machine guns. Turned out maintainance was hosing the windows from the outside. I know it sou ds crazy. Also I couldn't remember how to cook dinner. we always made meals after work. Couldn't remember how many potatoes to peel for mashed potatoes. It was many things. After almost a year of testing and losing weight the doctor tested my thyroid. I had auto immune hyperthyroiditis. The doctor said, thats the first thing a mental hospital checks for.


#14

Thank you. I am trying to get this even seen as a medical issue before the court.

lone wolf said:

So sorry to hear of this trouble for you. This is a serious issue. Please contact a physician who is well versed in lupus and present him as an expert witness who can offer expert testimony. Talk to your lawyer about finding that doc. Good luck and don't give up for your the sake of your children.

Be Well,

lone wolf


#15

Thank you. I have felt so alone with this, and your references are so similar. I do suspect vasculitis because of her prednisone taper, but I am not a doctor, and not even her health proxy. My wife also had a childhood experience that may have left her with PTSD, and while she maintains that it is all taken care of, and for 17 years, I believed her, she does occasionally waken with a startle response that was traced back to that event. My wife did suffer post partum depression with suicidal ideation, and she believes that I am going to cause her harm. Cytoxin had helped my wife many years ago when her Lupus was attacking her kidneys, but HIPAA has kept me from being in a position to be able to help her. I did what CPS told me to do, and wrote out her behavioral changes in a timeline format and gave them to her Rheumatologist without seeing him. He was concerned, and according to the divorce papers that I was served with, took immediate action. What that action was beyond calling my wife in for an emergency appointment, I may never know. My wife's Lupus is literally affecting every other part of her, except possibly for her teeth, so I believe that at this point, and in light of her divergent behaviors and prednisone taper, that it is unreasonable to believe that it is not affecting her mind too. I am afraid
of her suddenly snapping and causing harm to our kids.


delmario said:

I have experienced similar. No kids but the mental issues. Search the net for Lupus Psychosis. My ex has vasculitius (sp?) and along with her PTSD from her childhood has caused her to experience many mental health issues: relationship with her daughter (doesn't exist), delusional disorder, suicidal, severe depression, PTSD, paranoia, delusions of grandeur, delusions that the people who love her are out to get her or having affairs. She took cytoxin chemo and that helped for about two years, then symptoms returned. She's a good person but until she realizes that she needs help all you can do is pray for her and take care for the safety for your children. You can have her committed if she is a threat to herself but they will most likely release her after a few days but could possibly get a psych eval done while there. She is protected via HIPAA(sp?) and other privacy laws because of what people have done to others in the past. My prayers are with you, brother. Educate your attorney about Lupus and psychosis related to SLE Lupus. NAMI has some good information and a good psychologist & psychiatrist would be best to consult, look for those that know about Lupus SLE and are familiar with vasculitis (inflammation of the veins and arteries, especially when it is located in the brain). My ex suffered from double vision because of vasculitis and since the eyes are by the brain, you can go from there..

Prayers!


#16

While the departure in how she is behaving now is significantly different from that of the woman that I married, I would very much like the woman that I married to have contact with her children. When we first started to think about who would have our children when, and knowing that there is always conflict in these situations, I made it clear that I wanted our kids to be with her on Christmas morning because I know that she does not have many of those left. As her behaviors and decision making clearly showed that she was putting our children in harms way both physically and emotionally, I realized that I needed to make keeping them safe a priority. As I filled out the custody paperwork for submission, I could only sit and cry as I tried to figure out how to still make that possible. I no longer have any resentments towards her now that I understand more clearly what is happening to her and that he has very little control. I have realized that while this is a tragic situation, we are not victims. We explored what could happen with her doctors before getting married. We knew that it could get bad and that mental illness was a possibility, but we anticipated, perhaps incorrectly that it was not likely to happen - just like getting onto a plane knowing that there is a very small possibility of crashing. The worst is happening, and I am trying to do what I can to mitigate the damage to our children.

Christina said:

I am a single mother with sle lupus and other diseases I doubt if your ex's problems are only due to this disease. If you are that concerned have your attorney approach her if she won't listen to you about getting help. You will not find an ethical doctor to testify against her only one who can recount symptoms. Do you no longer want her to have contact with the children? Hope this works out for the kids.

#17

Steve,

Lupus Psychosis is a well documented feature of Lupus, and according to the National Institute of Health, 80% of Lupus SLE patients will experience a neuropsychiatric event over the course of their disease. Please do not take my post to reflect that I do not think that anyone with Lupus is unfit. I do believe quite the opposite, but as you know, Lupus affect everyone differently. My wife's Lupus has affected her quite severely, and it was not until I believed that my kids were in harms way that I pursued custody. I do not believe that my wife would ever in her right mind put out children in harm's way, but she has, and I believe that it is completely consistent with her paranoia, psychosis, and decreased cognitive function, which are documented by the American Academy of Neurology as possible symptoms of NPSLE. It is because of this particular presentation of her Lupus, which I believe are the result of her Prednisone taper, and cumulative organ damage, that I believe is the basis for a very dangerous situation for our kids. My wife and I had always agreed that I would have our kids when she was gone, and we always took "gone" to mean death, but in light of how things have progressed, I have had to reexamine that definition, and act unilaterally for the best interests of not only my children, but for her too.

Steven Tatlow said:

Lupus doesnt make you psycotic and yes a single mom with lupus can safely take care of her kids.


#18

Thank you.

Lupus Warrior #711 said:

If you need really good information on all aspects of SLE Lupus - get "The Lupus Book" , A Guide for Patients and Their Families by Daniel J. Wallace, MD. The latest is the Fifth Edition. Dr. Wallace explains everything in great medical detail and then summarizes it in language the average person can understand. It's well worth the cost for those of us trying to understand, live with, and explain this crazy disease to others. Good luck!


#19

Thank you. It feels so strange to be understood on this topic. My children are 7 & 12 years old, and my wife's fear has caused her to become very controlling. She no longer allows me to see our kids for no good reason, and has even avoided going to court to discuss the issue. In the last 2 months, I have seen my kids twice for a total of 2 hours. I do have an open CPS investigation. I am trying to have my attorney present enough of the correct information to the Judge to get that psychiatric evaluation ordered. I am even willing to submit to one in the interest of fairness. I am confident that when impartial people with the right expert background are able to make an evaluation, that the system will work to protect our kids, and hopefully my wife will get the help that she needs.

Annemarie said:

It sounds like she will have to go through a psych eval. There are tests they give to see how bad the cognitive impairment is. I have to go through this soon. The judge may also need to have her get an independent medical exam. A series of home visits might also be necessary to judge how impaired her judgement is as regards to your children. Unscheduled visits would be best since then they would see her when she was unprepared for them. Prednisone, high doses, long term can cause psychosis and paranoia. It's not a good med to stay on long term. Are your kids old enough to call you if they feel uncomfortable around her? Do they know they can call the police if they are scared by her behavior? If it comes down to it you can call child protective services. They do evaluations also. I'm sorry you are having to deal with this but I'm glad that your children have an advocate in you.

#20

Shaz,

Lupus presents differently in each case, and I am very happy for you that you have as yet been able to successfully avoid taking the medications. I have seen first hand the damage that they can do. I am not trying to be negative, but I understand that it might appear differently. I agree that my wife needs support, love and understanding. I have tried every way that I could to give her just that, and I am continuing to do so despite her wanting the divorce. We separated within the house that we owned for 7 months, I took her to couples therapists, I got help for my own issues that I thought that I had dealt with years ago, and I tried so hard to be perfect for her. Her paranoia of me only increased. I had to move out for both my own protection, and for her mental well being. After that, I realized that she was putting our kids in harms way both physically and emotionally. I truly believe that the only thing that I can do to help her, is to no longer enable her to avoid the consequences of her behaviors, and no longer deny that there is a problem. I also realize that this may never happen as about 50% of the mentally ill are not self aware of their illness, but I can't be responsible for that.

shaz said:

Hi I have sle also and have brought up 2 beautiful children I did not take any of the meds as I knew they were very strong and powerful so I opted to have no meds and coped extremely well your wife doesn't need you being so negative towards her she needs care and understanding she probably doesn't understand what's going on in her body and feels threatened especially if your fighting over the children this will make her worse she probably is going through a flare up and in a lot of pain this illness is nothing to laugh at nor to be negative towards her share the responsibility between the 2 of you so she's still able to see her children happy and content not scared and frightened my children have been great with my illness and never felt in danger with me and I would never forgive anyone if they took my children from me especially with this illness being able to be Managed and live a normal life I have never heard of anyone having their children took away with having sle the courts know we would not harm any child or human or animal you need to read and understand what your poor wife is having to cope with and then think about how you can help her and the children come to terms with what's happening and share the responsibilities of being parents I hope she gets well soon and it all gets resolved calmly and professionally