MARJI - You out there?? Please give update

Hi Kristin--
I've been in a ton of pain for the last two weeks or more. My osteoarthritis in my spine has been really bad and pain so bad I can't stand and all that. It's just been awful. Then all the gi stuff came back along with a nice post-prednisone bladder infection, so I'm just feeling it all over. My bx came back neg for celiac but just chronic inflammation like I don't know, maybe from AI disease? I talked to the gi doc and he gave me an order to be tested for cushings, I'm pretty sure I have it, but I'm too tired and sore to get dressed and drive to get it. I'm just a real mess. I just feel absolutely bad. My son is not doing so well, not health so much as having trouble at college. He's only taking three classes but it looks like that is too much, even two is two much. He's on academic warning and the school turned down his requests twice by his doctor for special assistance because it wasn't from a specialist and he's stopped taking his ADHD medicine because he thinks he doesn't need it (which is'nt true) and he doesn't like the way it makes him feel when he comes down. He's not taking care of himself and I feel to sick to help much, I'm lucky I can remember my name. I really feel frustrated. The docs won't let me talk to them or help him with appt and such and he just blows them off. He really blew off school, choosing to spend time with friends instead. He has no idea how hard it's going to be for him to get a job and his health care will not be covered. He's got a pending social security claim that will be blown if he tries to work, even if he gets fired. He just isn't thinking and he's very beligerent so you can't get through to him. I want to post on the epilepsy foruem to see what types of mood stabilzers and ADHD meds anyone there might be able to take, my son is so sensitive to meds. Have you been able to take any with your antiseizure meds? The docs continue refuse to run an ana on my son, though they were willing to check his thyroid for Hashis encephalopathy, which is good. I'm thoroughly depressed and getting to the point that I can't afford to support him and I don't think its good for me to. If he were a normal healthy child, he'd be out on his ear and learning the hard way. Unfortunately, I just don't feel right about this, but I really think that a short severing of the cord might be the only way he will learn. He is so stubborn and his self-esteem now is crap and he's convinced that with all his med issues he can't go to college, whichi is crap, and he just wants to do hard physical laber and hang out with his friends. I don't know what to do. He's really screwing things up. Any advice? He's very intelligent, was in the 99th percentile in the assessment tests and did well on SATs. Could he be losing his intellect due to epilepsy, or is he just giving me a load of crap, I just really don't know. He could just be slacking majorly to the point that he now believes his own bs. Any ideas Kris, or anyone? I really need help with this, I've been crying all day. It's critical for him to get a job with insurance. And of course I want the best for him given his illnesses. Everyone tells me I'm too soft. If he can take off for the weekend with his friends than he can sit and do his homework. I tried even being a warden this last semester, now that didn't work. HELP!! I also threatened and now think I have to follow through. Maybe a week on the outs would do him some good. I don't know.

Oh Marji . . . my heart goes out to you. Dealing with young adult problems like this is worse than being sick. I think you answered your own question at least three time in your post. He is a young adult now and he needs to make his way. I'm not sure how he is going to college . . . if he funds it or if you are paying for it . . . but maybe he needs to be attached to the cost (at least if he doesn't succeed). We told ours that we'd pay, but if they didn't earn the credits, they would need to come up with the next $$ for the credit hours they failed. It's not easy laying it out like that but motivation is higher when they have a vested interest in the outcome. Also, we did NOT hound them about school. That was hard too. As long as we "pester" they continue to act like children. We did have "rules of the house" while they lived at home . . . even when they get older, you have the right to run your home. I know a lot of people don't agree about that and to each his own, but I can honestly say that they are each making their way now and we have a great relationship with each. At a certain point when our kids are grown up, I think we feel like a trapeze show. We are swinging on the trapeze holding the child with a mighty grip and we swing out for the toss, but we just keep hanging on. They can't fly if we don't let go and we need to trust that they'll catch that next swing (I picture God on the other swing with His strong arms ready to grab on). I'm always comforted, too, by the vision of a safety net underneath. I think that is all that we have taught them over the years. They just can't really get a good chance if we don't let go. I hope this helps. And I wish you were feeling better. Hugs and hot tea for you sis. Blessings!

Marji I think it is a great idea to go to the neuro appt with dear son. I'm so sorry for all the issues he has. . . Marji, I said some really hard things in that last post . . . and I was really taking health for granted. I'm so sorry he is dealing with so much. *sigh* life is hard enough w/o adding all that to the mix. I hope you'll post and let us know how the neuro appt goes. Hugs, hot tea and blessings sis!

*sigh* Marji . . . I'm so sorry the docs won't check things out for your son. It seems they need a really good reason (symptoms) to check anything or the insurance companies give em heck. Also, they may not want to tip off any insurance co. unless they are sure they need to. Not sure . . . I just know it would feel better to know one way or the other. And like you say . . . you want to expect them to work to their potential . . . its hard to parent when you aren't sure what that potential is. One little trick I used with our kids to lift self esteem . . . I would talk to hubby or friend or on the telephone a room away from where the son/daughter was and "allow" them to overhear me make a compliment about them. Because it was not said directly to them, they believe it is even more valuable and not just mothering. Your pain sounds grinding and so difficult. Oh Lord it gets old. I've not been prescribed pred (I'm glad I haven't been ill enough for them to try it) but I have certainly wished I had a stash to try it when things get bad. Praying for some good sleep for you!!! *phewwww* Tomorrow??? Good . . . Saturday??? is it a blood test? when will you get the results. Please keep us posted sis . . . sending you a fresh pot of hot tea!! Blessings!

Thanks so much Kristin for replying. Does the strattera cause you to have seizures? My son's doc is afraid to give it to him for that reason, but his seizures are so well under control that I almost wish she would try. I'm allergic to it, unfortunately. I also have halos and intermittent blurriness and fear losing my vision. I had PRK vision correction surgery and that gave me some halos at night, but it also taught me something about halos. The surgeon said that the reason I would have halos is that I have naturally big pupils/more dilated than most peoples. Of course, my medication makes it worse sometimes. Now I have halos all the time and blurriness that comes and goes. I would definitely try some natural tears for that and see if it improves at all because the drynesss of my eyes from sjogrens really blinds me and I cant read signs and stuff. Some of the blurriness is probably also from plaq. Hopefully, your vision problems are medicine related and can be fixed, like superdilation, dryness, and whatever else. I hope so much you are not losing your eyesight. I was blind as a bat for so long and wearing glasses even with the lightest plastic lenses was an impossibility, I had coke bottle contacts! I'm still having those raw patches too in my gi tract with no apparent cause other than maybe AI disease. My son is really driving me nuts lately and is on probation with me this week. He has taken it upon himself to find a sleep aid and I'm not very happy about it. He's hoping to talk to his doc about gettin on ambian so his Adderall doesn't keep him up all night, but is using something else in the interim and I'm furious. I think he does have depression, but he doesn't when he takes his Adderall, he just refuses to take it alot and makes really bad decisions. I thought about getting him into the psychiatrist, but he has a lot of allergies and problems with psychiatric drugs, especially with them triggering seizures. I understand how you feel and appreciate your input, I went through the same thing myself only at fourteen, and lived away from home until much later in life, and eventually friends did take me in, but Ihad some horrible experiences in the meantime. That is why I drag my heels with my son. I explained to him tonight about alot of things, especially employment problems for him, for various reasons. He's sweet on his adderall but doesn't talk much and he says that he hates that. But he's negative and depressed without it. I liked strattera alot, and was mad I was allergic, I got real bad reaction. Medicaid won't pay for it, but he can get patient assistance. I wish he could try it but with a heart condition and epilepsy, I'm scared, but it would be good because it has an antidepressant effect to it to and you can sleep and all. But heck, you have a bunch wrong and can take it, so maybe it would work. At least we could try. Also, I considered the addition of a anti-nausea medicine maybe because both his epilespy med trileptal and his adderall make him nauseaus and he does't want to eat and since many anti-nausea drugs make you sleepy, maybe something like that would work instead of an addicting sleep aid. Is ambian addicting? Anyway, I hope all goes well at the eye doc. You might want to have them do a gallium scan to look at your lacrimal glands, because mine were hugely inflamed due to sjogrens and I think it causes pressure on my optic nerve. Of course everything is great on prednisone!

I'm glad you understand my fear of pulling the rug out. I know he needs help, I just need to get through the maze of his medical problems and attitudes and moods to figure out what kind. Unfortunately, the mental health system here is absolutely horrible and the state mental hospital wiil no longer treat my son because they claim no matter how suicidal he is he has only medical and substance abuse problems and is non-compliant and drug seeking (because none of the drugs worked like they were supposed to on him). The real reason is because of the epilepsy and heart condition, they sent him home wetting himself one time, on a huge dose of neurontin and he had a huge seizure two weeks later and tried to set himself on fire after that as a reaction to the neurontin. It made him really crazy, so I hate that medicine. Also, the rehab wont take him because they claim he is noncompliant and they have done all they can do and his attitude is poor, but really it is because of the health issues and his need for frequent medical attention and medications and they don't allow him his ADHD med. He's not so nuts and drug seeking now that he is on epilepsy medicine, its just he didn't know he had it and felt really anxious and awful and was seizing and we didn't know it and was doing crazy stuff and mental health was giving him meds that made him worse. ONce his epilepsy was dx and treated, I got my son back. I was so scared that he would end up institutionalized or dead--he was just out of control--his epilepsy is in his parietal lobe so it effects his reasoning and he makes crazy decisions, very nihilistic and emotional. Its very weird. And he has grand mal seizures with heart complications and usually swallows his tongue and can easily die, so I'm scared to be away from him for too long. I'm glad you understand this Kristin. He is so bright, really outstanding, and he was telling me today that he is flunking out because he is stupid and just can't handle school, that he's not good at school due to his problems, and I felt so bad because it's not fair and he is good at school if they can just get his medicine straight. I think I got him reconvinced again of that, he needs to go to school, he will not be fulfilled without it,he is so bright, he just needs the help other people in his position get. The disability office has denied him twice and we are now looking at legal action. They know he is depressed from his grades and not savvy at dealing with bureaucracy so they just blow him off and throw obstacles in his path. I'm so mad, but they won't talk to me so my hands are tied. I need to go in as his advocate somehow, I don't know how, maybe in writing. Well, I'm going to crash, I got some pain meds finally broke down and got them and am doing better, till they stop working again. Well, I will pray for you and especially for you eyes and gi and hope you feel better. I really wish I could get them to test my son for CNS lupus. Take care Kristin, you are so sweet, taking time when you are so sick, and I think you really understand my son's issues so it really helps me so much. If I had one wish, it would be that my son was healthy, and if I had a disease to get rid of for him, I think it would be the ADHD. He has it so so bad. The rest, he deals with ok, they don't bother him as much, but the ADHD just has no good treatment.

Hey Marji, back again. Things are so crazy here. Got in another car accident but the car was somewhat working, stopped working yesterday before my eye appt, so I had to reschedule for 2 more weeks. Still very nervous and hoping they can stop the progression. I have lost a lot of my sight and I am starting to worry about driving the car. So many people depend on me driving right now. Sounds like you are getting your butt handed to you too :). Geez, your son has so so much on his plate. So glad you had the insight not to give up on him. Sometimes people just think the person can help being that way and think he is lazy and just doesn't want to do anything. Not always so. I remember when I had the dementia, everyone said I just didn't want to raise kids anymore or that I was doing drugs or drinking. I am still so angry. That was my family and friends saying those horrible things about me. They all should know that I never did drugs, don't drink and have nearly killed myself in order to raise my children and would never give up on them. Makes me ill how some think. Okay, I know with some people it may be the case and they have a history of such things, but not always true for everyone. Your son has some severe issues with how his neurological brain function is working among other things. He needs some help. I would start by getting him on charity careand and getting neuropsychological testing done (they can actually tell what is organic brain dysfunction or psychological problem and to what degree of each). I think the results may help you get a clearer understanding. Once that is done and it is determined organic, he will need CNS Lupus testing (be sure to get a University doctor that knows specifically about CNS lupus). It sounds possible he may have lupus or some type of neuro brain problem. A lot of my heart problems also come from my autonomic nervous system and I have had peripheral nervous system damage too. Nervous system lupus is really hard to understand and diagnose because it affects so many things and could be in any odd combination of symptoms. The psych problems are key though. I don't know anyone with the CNS lupus without psych issues and the doctors usually dismiss a "medical" reason for many symptoms because they think you are nuts. It is really a catch 22 and a heck of a battle to go through. I had to back door everything and either had to go to other doctors or basically figure out my own diagnoses, do my own testing to prove them and then show the doctor.

It must be hard on you as you really need the strength not only to fight for your diagnosis but your sons. I can definitely relate. So exhausting and an unfair battle. I guess someone has to get the short straw in life:). It is worth the pursuit though. They know so little about some parts of these diseases and there are just so many parts to cover. I just tell my daughter and myself that we just need to do our best, it will never be perfect for any of us. Sometimes I can't wait for heaven. I definitely paid my dues here! So have you.

Keep in touch. Hopefully we will both keep our sanity through this. Much Hugs and Prayers - Kristin

Marji - Wish I had more time to get on here more often. You haven't been far from my thoughts though. Sounds like a nightmare with your son. My daughter has suicidal/homocidal tendancies since she was 4 (her dad did something horrible to her as a baby), so I get the gist of what you are going through. If he is out of control and not taking meds, he needs to go to the psych. hospital. From there he needs rehab. I don't know what options are available to you for those two things. Has he ever said why he just decided to "give up" on his life. What makes it not worth it to him? He can't help severe depression and what you are describing sounds like very severe depression that needs emergency care. If he is stealing money for self-medication, it will just complicate the depression and he could very well commit suicide without the help. Jail cannot help him with those things, treatment can. The goal is not to see him in jail. I would call his previous counselor and see what options are available. The one call might eliminate a lot of stress for you. If he/she cannot help you, ask their office for available hotlines for crisis intervention. Usually all states have this for children. It may be the best you can do under the circumstances.

Honestly, I'm not sure under your condition how you have handled all this so far. The stress makes the flares 10 times worse for me. I explain to my daughter that even though she may not love herself when depressed and thinks no one else does, that I do and she is the most important thing in the world to me and she needs help. She may not like me for it but that means I love her. Later when she is better she understands how much I do and why I had to put her in the hospital. It is tough putting young children in the psych. hospitals but sometimes there aren't too many options.

Keep me posted and I will try my best to get on here more. Hopefully my car situation will be better in a week or two. Oh, and my daughter and I are okay, just a little traumatized. Hope I can find a new car soon. I go to the eye doctor Wed. the 31st so I will let you know how that goes too. I spoke with my daughter's doctor yesterday who thinks I am going blind. My eye doc said something like that a couple of years ago, but I have been in denial and avoiding seeing him. Can no longer avoid him now. We will see what happens.

Deep Breaths and a Lot of Hugs - Kristin