jenglynn

I think that what bothers me the most about this is that these parents are not INSIDE their child's body so they can't truly know how they are feeling. So, forcing them to go school when they say aren't feeling well for whatever symptom they may have, seems not only counterproductive (meaning they will feel worse the next day most likely due to overexertion) but cruel and a little heartless. I get the point that we have to push ourselves as much as we can- but that is the key- OURSELVES. As another person, how can you know how hard to push someone when you can't feel when they just can't do anymore. I feel that pushing these kids is more the job of a PT, OT, etc, not so much the job of a parent. We, as adults who suffer from this illness, know how some days we feel a little yucky but we know that we need to get up and do what we can (I am actually speaking for others, not me, because I can't get up at all, but I do push myself quite a bit on my bed exercises and recumbent bike) but how would you respond to someone you LOVE pushing you to that extreme. I would think that could leave to anxiety, depression, and resentment. One of the issues so many people with POTS suffer with is getting their family and loved ones to understand and support them. Pushing and punishment seems harsh and just not acceptable. Would we do that to a diabetic child? I am sorry, the whole program just doesn't make me feel comfortable. The mom is in the video had to make a drastic parenting change in order to meet the needs of the program. I really pray that it works for the them and it isn't something she comes to regret. I still think that it is odd that the adult form of this was never mentioned to me at all in the two weeks I was there. Perhaps, because my primary diagnosis is because of autoimmune autonomic failure then perhaps it would not work for me anyway. Christy, do you think your son suffered in any way emotionally due to this or did you? I imagine that it was so hard for him to be one of the kids who did not improve. I am just sorry that you both had to go through something like that. I can't comprehend the thought of punishing one of my children for being ill- especially an illness such as ours that is so hard to understand and without any clear answers at all to rely on. A positive attitude and a strong will are wonderful assets and definitely a necessity with our disease but it is not going to cure anyone. I also know that being criticized and belittled by the people who are supposed to love you more than anyone, unconditionally, is not my first choice as a motivational tool. Maybe I am missing something but something about this just really bothers me and actually hurts my heart. Jennifer

I didn't vote because none really applied to me... so I will describe mine. I have pretty much ALWAYS had symptoms and never remember not feeling this way. But I will go based on this flare which began last April- almost a year ago. Many symptoms began all at once: fatigue, tachycardia, syncope, dizziness and shortness of breath. I am assuming with the syncope I had some orthostatic hypotension but I didn't know at the time. I gradually got worse and worse- and by November I was having syncope almost every time I stood up, extreme hypotensive, some organ failure, tachycardia, along with the fatigue and shortness of breath, adrenal surges, cognitive issues but I am not sure if it is autonomic related or concusssion related (have had 10 now) and many more things that I am sure I am leaving out. I am one of the VERY lucky ones who does not have GI issues... and for that I am so grateful. The only "GI" symptoms I have is just that I have very little appetite, as in none, so I don't suffer too much with this unless you count early satiety (3 or 4 bites of just about anything makes me feel and may make me feel a little nauseous). I really feel for you all who suffer with the tummy problems. It must be miserable. Jen

Christy, As a mom that does seem incredibly harsh. Punish him for being sick. This isn't something "in his head" he is physically ill. Like I said, I would not respond to that treatment, and if they were to try to "train" my husband or any caregiver to treat me that way, it would NOT go over very well. I would think he emerged feeling emotionally worse rather than better. :mellow: From what I witnessed, they didn't adopt those same ideals to the adults patients with POTS. Have you found treatment for his elsewhere? I guess I am just making an assumption that you no longer go there? Jen

Issie, I am sorry, I haven't followed this thread all that closely but I saw that Issue and Sugartwin were talking about EDS and I had a question for Issie.. EDS is a genetic disease and as it affects all tissues could it also impact the tissue in organs or muscles? For example, could a baby born with EDS be more likely to be born with a hole in their heart because of the stretchiness of their tissues? What would your opinion be on that? Thanks so much! Jen

I have wondered about this... I have Orthostatic Hypotension. I usually have at least a 40-50 point drop upon standing. But once, when I was given too high of a dose of Mestonin my BP got up to 200/145 which for me is HIGH, HIGH. My normal upon waking, without meds, is in the 60s or 70s over 40s or 50s. The nurse did an orthostatic test on me- because lying down my BP was 200/145 (other factors could have led to this as well... I had also just finished a course of IVIG too which can lead to high BP) But I had to do the orthostatic BP tests 4x a day so we did it... and when I stood my BP went from 200/145 to 90/65 after standing for maybe 60- 90 seconds or maybe even less. I did not not faint but I had all the presyncope symptoms. My question is, does it do any damage to our bodies to have such rapid changes in blood pressure or do our bodies compensate for it just fine? I always wonder the same about tachycardia? When I am lying down my pulse is usually in the 70s. But within 60 seconds it will be 180+ standing still, no exertion. When I lie back down, it will be back to normal within 1-2 minutes. Do these drastic changes up and down or down and up have any negative impact on our bodies or do our bodies cope with these changes just fine without any harm done? Not sure if anyone will know the answer but I guess I just want to know if this is all extra wear and tear or if it is not really considered "wear and tear" and something that our bodies are doing because it is what they are supposed to do. I know, slightly silly question but I thought you all might have an answer for me. Thank you for indulging me! Jen

My last concussion in mid-Feb I was like that. It was a frontal lobe concussion and I became a completely different person. I was full of this anger and rage one minute, the next minute I would be sobbing uncontrollably for no reason... and then back to whatever I was doing the next. When I say anger and rage- I mean I was throwing things (I threw my iPhone at the wall! HELLO! I would NEVER do that!!! and thank goodness it didn't break)... Demanding, critical, emotional, just overall a crazy person. My husband AND kids were avoiding me like the plague. That didn't help and just made me angier. The strangest thing? I didn't even realize it was happening. I thought THEY were all the crazy ones. It went on about two weeks until the raging, anger and mood swings improved- but it was just horrible. I have had many concussions, but none with that result. The neuro said the frontal lobe ones will cause extreme mood changes. I think even a month later my husband is still a little scarred and jumpy from that whole episode. I notice that he is very careful with what he says to me and I hate that I did that to him. BUT.. all of that said, I did take a Beta Blocker once (sorry, taken so many can't remember which one) that seemed to make me extremely moody- I would be sad one minute and angry the next. It also lowered my BP too much so I stopped it rather quickly.. but the side effects happened with the first dose. While the BB do help with my tachy, they all lower my BP so much that it is too risky so I just don't take them. In your case, maybe you can try another one? Did your mood swings start right away when you began taking it or gradually? I would think a call to the doctor is a good idea because you can't live like this. It sounds like you are miserable. Or even call a pharmacist and ask which one would be the least likely to cause such symptoms and go over that with your doctor. ((((( HUGS))))) I will keep you in my thoughts. Jen

I know they are supposed to be good for you- but I absolutely detest them. I WISH I could eat them (I guess I should not say COULD- of course I could- but won't because I am a brat) because of the health benefit. I have ZERO appetite and hardly eat a thing at all and unfortunately survive mainly on meal supplements for the time being. I can't imagine that is very healthy either even though my doctors constantly tell me that I will be fine to continue drinking those and just making sure I get enough calories and the protein, vitamins, minerals I get from them serves me just fine. I believe, though, that it can't be the same as eating fresh, whole food. It is like when my autonomic system "broke" my appetite sensor broke along with it. I am NEVER hungry. Ever. I could go a week without eating and still not be hungry. I have to set timers on my iPhone to remind me when to have my supplement drink and sometimes I will eat some pudding or applesauce as well... I also really struggle with swallowing as well. Do you like beets? Jen

Oh, very interesting. Thanks for clarifying. Some of their symptoms are better, but it is also a mind over matter thing? Behavior modification. I was wondering when the mother was discussing having to change her parenting style what that had to do with it. If my husband did that to me, I would probably throw something at him, LOL... if I am feeling horrible, and he tries to tell me I am not. It is interesting that they have an adult program. I was inpatient there for more than 2 weeks and that was never even presented as an option. So is it only offered to certain types of POTS patients then? My primary care team was neurology and autonomics and no one suggested it at all. I am sorry to hear that it didn't help your son. If you don't mind my asking, what did the doctors give as a reason for it not being as successful for him and others? Severity of his illness or the type of autonomic issues he has? I am sure that must have been very discouraging for both of you to go through all that work, and I am sure you both had so much hope as you watched other kids improve. I am so sorry. And so very sorry that your son has to suffer with this illness. It is bad enough at 38, but he should not have the burden of this in his teens. And for you to watch him suffer, as a mother, is devastating I am sure. Hugs to both of you Jen

I was diagnosed with a "connective tissue disorder" due to extreme hypermobility and stretchy skin but the facility I was at didn't want to pursue testing at that time. I am fairly certain it could be EDS. I have torn numerous ligaments (at age 14 actually severed, not just tore, all four ligaments in my left knee by barely twisting my ankle- I mean I didn't even fall down it was so minor). Have had MANY dislocations of joints (too many too count) and can do all of those tests- like pull your thumb back to your forearm etc. So if it is EDS I am not sure what kind. As I stated in another thread, it worries me a bit because my 13 year old daughter has all those same symptoms as well as the very prominent veins- and my grandmother and her father both had the same symptoms and both passed relatively young (in their 50's) both with aneurysms- as did his brother (my great grandfather's brother) I didn't realize that the veins and the prominence had anything to do with EDS. I think I will definitely pursue this testing somewhere else. My home hospital just hired a new neurologist who specializes in autonomic issues (FINALLY) and he actually called ME to talk about coming to see him (none of the other neuros would see me there because they were very baffled by my case) and he said the first thing that stood out to him was the probable EDS and my daughter (who at 13 has already had multiple syncopal spells) and how he wants us to get some extensive genetic testing done. So that is promising. Even if it has NOTHING to do with my autoimmune or autonomic issues, I would like to know, especially so that I can protect her! She wants to be on the high school gymnastics team next year... that isn't going to be possible if we find out that she has limitations such as EDS... I already think it is out of the question as a mom, but it would be better for her if she heard from the doctor. Does anyone know why at times they seem to protrude and other time they are flat. And yes, I do have spider veins too. Thanks so much for the helpful info!!!! Oh, and I am extremely HYPOtensive. Jen

This is a perfect example of why more time and research needs to go into sub-setting and categorizing those of with these conditions. Whenever I would mention to my doctors at that facility anything about POTS they would always correct me and say that: "You don't really have POTS, you have autoimmune mediated autonomic failure/dysfunction. But I still have POTS because I have the syndrome but it is caused from that. At least I think so, or am I wrong????? I have always questioned that... and wondered by have never been given an answer. Mayby one of you far more educated than I am on this can tell me... if I have autoimmune autonomic failure (which is what they called it) but when I look it up online it always says dysfunction so I have no idea if it is really "failure" or "dysfunction"- I guess either way it means the same- it doesn't work..... Can I STILL have POTS?I think the doctor at the major facility said I have all of those symptoms because of my principle diagnosis... so maybe he was not really saying I don't HAVE POTS, but that it is caused by the other. I don't know, it has confused me and I never know what to tell people when they ask what is your "MAIN" diagnosis. Because my home hospital where all my medical records are list both on my diagnosis list. Anyway, because mine is autoimmune mediated that course of treatment would most likely not work for me. The differences between low flow, high flow, hyper, hypo, and all of the other differences that I am not going to pretend to understand but I know there are many. But it seems like we are all different shapes that they are trying to fit into a round hole- sqaures, triangles, hexagons ovals, etc.. are not going to fit in the round hole. Only the round one. That said, I am very happy for this kid and his family and they both seemed so pleased and happy with their experience there. I was pretty impressed by the Mayo Machine. It is quite amazing the way everything works there. I think it is great that he arrives in a wheelchair and left after climbing a rock wall and now flies home and starts back to school and swimming next week. That IS a miracle. Nothing makes me happier than to hear a story like that. He seemed like just a really good kid, too, from the video and I bet he has a great future ahead of him and I really hope that this cure stays a cure and pray for no relapses for him!!!! I wish my stay would have ended that way...I arrived the same way, bundled up in blankets in my wheelchair and left the same way I will be arriving again on Wednesday the same way for the follow up. Maybe I will lucky and a miracle will happen during my follow up and I will get cured and get to walk out too!!!!! Miracles happen every day, that kid is proof of it!!!

Are you SERIOUS ????? That is absolutely hysterical!!!! I JUST told my hubby yesterday that he should start calling me Smurfette because I'm more blue than any other color.... LOL. Great minds think alike I guess.... Or minds trapped back in 80's cartoons anyway!! That is just too funny!!!! I'm going to giggle about that all night. Well, let's hope we get some answers because now I am extra curious!!!! Jen

I know this is really a "silly" and very unscientific question- but do the appearance of our veins have anything to do what kind of POTS we have? Technically, I'm diagnosed also with autoimmune mediated autonomic dysfunction. I have orthostatic hypotension and right now it's anywhere from 30-60 seconds upon standing until syncope. It's been that way since Nov. 2011 at least. Although I've been a fainter since childhood- I'm not sure when it started but around age 9-11 to my best recollection. Anyway on to veins- you can see practically every vein in my body, it seems (I know I really can't). They are always prominent.. Arms, legs, feet, hands, wrists, thights, chest, stomach, torso, neck, everywhere. Not just "visible" but very noticeable. And, no, I am not pregnant. Sometimes they protrude it seems for lack of a better word, and other times they are just flat but still as obvious and stand out. Does this have anything to do with POTS or is this just a coloring issue I was born with? I'm on the pale side and my veins have always been visible, but in the last 6 months they are so prominent that I get people commenting on how much the bright blue veins stand out. I have become MUCH more pale since this illness so that could be the answer. Anyway, was just curious if this is something medical or just genetic. Thanks in advance for your answers... Jen

Issie, It would be AMAZING for me to meet you in person. I would consider it an honor. I have NO idea how I inspire YOU... I feel I just somehow manage to get through the days, but if I do in any way, I'm grateful. You help so many people on this forum and your kindness, compassion, and empathy literally shines through in every post. People like you are the ones who help us cope with illnesses such as ours. I don't understand it. No one seems to. Every visit leads to more questions than answers. Just like every test. Doctors look at me and shake their head, say I'm a mystery, they are baffled, but we won't give up. Yet, they go home healthy, and I crawl upstairs to my bed to wait and wait. Not that I resent the medical community, but I am so tired of wasting away and getting worse and worse when I think maybe more aggressive action should be taken. I feel as if that fight in me has faded, but I need to find it again. I'm under 100 pounds and emotionally and physically withering away- my body, my brain and spirit. All I want is some HOPE to grab onto and I have a follow up at Mayo on Wed. March 21st- they decided to see me sooner- and I just pray that I get that hope on Wed. I need it now more than eer. Thank you again, Issie. You are certainly a treasure among treasure. Jen

BUT- I'm not going back on my original point- because I have (according to the DOCTORS, not me) completely confused them- and given the strong family history we have of connective tissue problems (some resulting in death as in my grandma, her dad and uncle- all in 50's or their early 60's), all fainters, all have other neurological problems as well ( one example- not sure about my great grandpa- but my grandma, myself and daughter ALL had/have constantly dilated pupils all the time). That is one example of many more I won't bore you with. I'm the only one as yet who has tested positive for an Autoimune Disease, but my grandma was not tested and my daughter hasn't been either (yet). So far, the only two connections are autonomic and connective tissue. I'm not stating any fact, but I'm saying that the similarities between the three of us in three different generations is of great concern to me as a mom, because I'm currently completely debilitated and will have cognitive dysfunction from multiple brain injuries for the rest of my life due to the multiple syncope I have, often with no warning. If there is even a REMOTE possibility that this could happen to my daughter, I would like it explored because I see way too many warning signs to ignore as a responsible parent who LOVES my child and would do ANYTHING to protect her. THAT is where I am coming from, not really science but common sense and telling science to prove ME wrong then! Jen

Thank you Issie! I was actually just coming back on here to apologize for my snippy replies as I've had a physically rough morning... Battling VERY low BP and VERY high tachy, vomiting, a pounding headache, and six children who are hyper as can be and driving me batty. Not that it excuses anything, I guess it was just my name being used and when I went back to re-read my earlier post, I wasn't sure what he was talking about- so I overreacted and was too sensitive and defensive. So, Rama, I am sorry for my catty, snotty remarks and if you WERE referring to me- please- correct me if I need to be corrected, again no sarcasm there, only sincerity. It can be hard when we all communicate via email/posting it can be difficult to read the "tone" of someone's words. Excuses aside, I am sorry. I love this forum and am usually very easy going and positive (REALLY I am, I promise!!! and the last thing I would want to do is create drama or friction. And Issie, though we have never physically met, I just love you so much and thank you for taking time out of your day to make that explanation and make me feel better. You are just a priceless asset to this forum and to me in general and I want to thank you for that. ((((((((( HUGS ))))))))))) right back to you!!!!! Jen

Firewatcher, Question.... I've been struggling with "thyroid" issues for the last several months. My TSH is hyper ( I think .06 last time- 2 years ago it was 2.2 ) but my T3 and T4 is more between normal and hyper. No one has yet to figure ths out but the pituitary gland has been tossed at me a few times... I've had multiple TBT and 9 concussions. What does the brain injuries do to the pituitary and do you know what signs I would look for? Than you!!! Jen

After re-reading my post- may have sounded a little catty and that was not my intention. But I am just learning about this stuff. Some of you have your diagnosis figured out, some don't. If anything, I am worse now than I was when I went to this world renowned medical center and spent close to a million dollars. I am a patient who is frustrated and quite frankly, like all of you, been through a LOT. Essentially I've lost my life as I know it. I'm confined to a bed or I have to crawl around the house to move around, wearing Depends by the way because my bladder doesn't work. I've not only lost my former life but my dignity. It takes time to figure these things out. I'm college educated and before this illness came along was almost finished with my Masters. I am not uneducated but a lot of what is posted in this forum may as well be Greek to me. Just asking for some patience and if I annoyed someone with something I said- the way I would handle it old be privately, but that's just me. Jen

Rama, Wasn't at all trying to offend or annoy you or anyone else, or post anything as a fact. All I was saying is that I was frustrated that this certain hospital would not look into my probable EDS- even completely aside from autoimmune or autonomic conditions. It is an emotional subject for me because I had a very hypermobile grandmother who died relatively young with an aneurism. As did her father. She was also a fainter. I have all of these physical attributes of EDS but no one was willing to test me. Now it gets really emotional - I have a 13 year year old daughter diagnosed at 12 months old with an undefined connective tissue disorder due to extremely lax joints, weak muscles and dislocations at 12 months old. Huge delays in gross motor skills- after 2 by the time she walked. This child started having syncope at 11 just like I did. And has had several "unexplained" syncope spells in the last two years. Then I start going through this ordeal which is a mystery even to the major facility I go to (that IS a fact- my chart states I'm an extremely chronically ill medical enigma and will require future research to treat" which is why I'm in research studies and case studies) All I was trying to say is if they don't understand what is going on with me then why not at least LOOK at that possibility. There are 3 generations in a row with very consistent symptom- neurological and tissue related (at age 14 I SEVERED ALL four ligaments in my knee by barely twisting my ankle- not tore- severed. Ortho doc who did the surgery had never seen all 4 ligaments severed like that without major trauma) I've dislocated my shoulders, knees, countless times and hip twice. So did my grandma, and so has my daughter. I didn't mean to present anything as fact- what I am trying to say is that there are NO facts in my situation because no one understands it. If the fact you are referring to is that I said a doctor told me there are no links between connective tissue disorder and autonomic dysfunction. That is a fact that he said that- doesn't mean it's a fact that is correct. If there were other facts I presented incorrectly, please, correct me so we can make sure the information in this thread is accurate. I do not want to mislead anyone. I know it's hard to tell a person's tone in writing, but that is sincere, not sarcasm. Please, if I made errors, correct me. It would not offend me at all and if I'm wrong- I want to be corrected so everyone has the right info. But, I'm not a doctor and didn't realize I had to be in order to stare my opinion in this forum. Rama, I don't have 1% of the knowledge do. I was just stating the facts I DO have which are the facts of my medical history within my family and the fear I have for my daughter because I feel like I'm going back in time when I look at her- and if I can help now- I will do anything to make it happen. Jen

Wow! Thanks for all the info, Bunny!! That's interesting you have 2 friends who faints.. One crumbles and one falls straight back. We do have a tilt table thing and I've used it a lot since I got home from the hospital, gradually adjusting angles. So far, it hasn't helped anything, but I still use it and pray one day it will. I really don't believe my autonomic symptoms will improve at all until my horribly aggressive autoimmune disease is under control. Its continually attacking my autonomic system... So everything I try won't really "work" until that been calmed down or in remission or whatever you call it. Sorry about the long, rambling posts and all the questions. I was just talking about this with my dad and he said he noticed this happened to me in Nov. sometime (I received 3 very serious head traumas/concussions) in Nov. My initial cognitive dysfunction test showed a big change from 3 years ago when I had my last one. The non-stop talking/writing rambling and babbling is a result of my brain injuries but I can't remember what she called it. It was something completely new to me and has shocked my family. I had always been a very clear, concise, to the point person, especially in writing. I would say of everything, for my family, this has been the most obvious change after the injuries: rambling, babbling, talking on and on and on, repeating myself.. Etc. I guess I'm making excuses, not meaning to, but maybe explaining a little why my posts are so long and rambling. I am in cognitive therapy to work on all of these things but it takes time and it was certainly a hard pill to swallow. Losing brain function is by far the worst thing to happen to me with POTS. Jen

Kayla, I found out in Dec. that a group of friends were planning a fundraiser for me- the event is called "Jen's Angels" and I am just amazed at what they are doing and how much they've accomplished. It's the end of April. But I know nothing about the planning process because I've been deliberately left out of it so I'm not sure what they've needed. I can ask my sister, who is involved, if you don't get what you need to know by responses on this thread. I would imagine the rules would vary by state. I'm actually really embarrassed about the whole thing and almost died when they told me about it- and I still get anxiety and think OMG.. What if NO one comes lol. But I know they've arranged for live music all day (it's like 11am-1am) and 7 bands (all agreed to pay for free which I thought was awesome- these are bigger area bands who usually get paid) , 50/50 raffle, silent auction, Ummm.. There is a lot more but like I said they keep me out of the loop so I'm not sure. I know the first part is really kids related and they are doing face painting, tons of bouncy houses, ponies, sno cones, and of course lots of food all day. I know there's other stuff and it's a lot of work and going around asking for donations and arranging everything. But let me know if you don't find out what you need and I will talk to my sister. Jen

WOW... I am feeling like I am jumping in VERY late to this discussion!!!! Back in 2008 I had an "episode" of Cluster Headaches- not sure if all of you are familair with them, but they are different kind of headache. Here is a description of them via a web link from Mayo http://www.mayoclinic.com/health/cluster-headache/DS00487 . I have to say, I have NEVER experienced anything like this. They would get so bad (and I am embarrassed to even admit this but I would actualy grab whatever what closest to me and beat myself over the head with it- just to re-locate the pain). I also started having some syncope during this period and had 3 concussions during the time period that the cluster period lasted (4 very long months). Like most things with the brain, they are poorly understood and occur most commonly in men so once again, I was an enigma Went through lots of tests, but my autoimmune or autonomic issues were never discovered during this. These headaches were so strange because I could time them by the minute. I would get about 8 a day- and they would happen the SAME time every day. There seems to be a link to barometric pressure, altitude, and oddly, the soltices with these clusters. I feel so blessed that I only endured them for four months and still have not (knock wood and Praise God) that they NEVER come back. Some people have them chronically and they never go away. The intensity of the pain is just beyond description. I get migraines, I get bad headaches, but this is like an ice pick stabbing you in the eye repeatedly. Mine would last 15 to 30 minutes. Now, I guess they've found just pure oxygen is remarkably helpful in treatment of the headaches but 4 years ago it wasn't widely known I guess. When I was diagnosed, the neurologist told me he calls them "Suicide Headaches" because in 30 something years of practice (he specializes in headaches so I am sure he saw many people with these) he said he had lost 3 patients to suicide that he fully believes is attributed to the pain- all three had the chronic kind- no remission. Such a nightmare. My normal migraines, headaches, or post concussion headaches are often connected to barometric pressure. I also get a LOT of joint pain with the barometric pressure is changing. My left knee has undergone complete reconstruction and is a MESS and a half and the pain in that knee (which is bone on bone at this point) when the pressure changes is almost unbearable. So there has got to be something to this. Question.... WHAT on earth do we do about it????? Hmmmmm.. Jen

I am so sorry girls!!! I am not sure why YOUR comments got edited but maybe because mine alluded to a mistake made by a certain facility??? So they removed anything even remotely related? Again, I am sorry!

Jan, Thanks for all of the (unfortunate) insight. I agree that these LTD companies are almost scams in a way. We pay them and they do everything they can to get out of paying US the benefits we paid for. And I so agree about the kids. That seems unethical at the very least and illegal at worst. I don't know how they get away from that. I can't remember if they know if I have kids or not. But they can get the info from my employer. I know.. applying for SSDI was HARD- emotionally. I hope I get "approved" so I don't have to go through the stupid appeal processes but like you said... once you get it... "Yay, I am approved".... but that also means... "YAY- I'm disabled". I NEVER thought I would be someone applying for SSDI in my 30's- okay VERY late 30's (38) but STILL my 30's I never imagined not being a working, productive member of society. It is really hard to accept- but I really don't have an option now. But it is a painful relevation to come to. And of course, some people don't get it either. My dad, for example. He KNOWS how sick I am. KNOWS I spent 2 months in the hospital. 9 concussions. Has been around me. But when I told him I had to apply for SSDI he said "I don't think I've ever been so disappointed in you. Why did you bother going to get your degree and now working on your Masters if you plan on living off the government the rest of your life." OUCH. Hold on a sec, dad, while I take the knife out of my back. It is not like I CHOSE this. I worked as long as I physically could. And I certainly don't want or plan for it to be the rest of my life. I am blessed for the most part because MOST of my family is caring and understanding and so supportive. But there are a few who can make me feel pretty useless in a matter of seconds. I always tell myself "No one can make you feel inferior without your permission" which I think was said by Eleanor Roosevelt and that is so true... but there is just something about my dad and his opinion. But, I can't force him to understand so it is better that we just don't discuss it. Jen

Jan, I should have known that was too easy My LTD was approved SO fast. I was thinking the same thing. Isn't the money received for dependents actually "their" money- like child support in a way. I don't see how they can factor that money into it. But, I've tried to read what I can understand of the legal-eze of my policy- and it does appear that they factor all of the money received, including money in the child's name- to determine the monthly amount. That just seems very unethical to me. I also read that I would have to re-pay all that money back. Nice!!!! Like I have a HUGE savings account piled with money as I'm disabled and unable to work. Thanks for clarifying... I thought my hopes of LTD being harder to get we're too good to be true- because I got it so quickly. Thanks! Jen

Well... I think I made some naughty comments and totally forgot not to make negative statements and use doctors or facilities by name.. So the moderator had to go to lots of trouble to edit my post (I really am sorry! My rambling gets me in trouble at times) and I Ted to forget easily: NO NAMES!!!! So, Naomi, that's probably what happened. Sorry about that. Jen