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Everything posted by llcsmom

  1. Hi Addie, We live somewhat close to you, I sent you 2 private messages and I have some ideas for you. Hope to hear from you soon!
  2. POTS is reduced vasoconstriction in some areas but increased sensitisation in other areas - the increased sympathetic drive is needed to operate the vasoconstrictive apparatus at the comprimised locations, but is felt fully at the non compromised locations. Ha Ramakentesh! I'm sure that will get some weird looks from people when you say that! Love it...your explanation is like a medical/engineering explanation that will baffle alot of people. To answer the question...I have heard, (and it does work sometimes) to tell people that it is as if your "autopilot" that controls almost all of your bodily functions doesn't work correctly. I usually say regarding my daughters: "their autonomic nervous system is not working like it should, you know, the part of the nervous system that controls "flight or fight" responses?" Lately I have been trying to explain, especially to school personnel, how my daughters find it very difficult to function before about 10 am. I know that this is very common with dysautonomia. We have found the GI doctor they see finds this is so true for most kids with dysautonomia and he wrote a letter to my younger daughters's principal explaining it. It helped, at least. If all else fails, I start rattling off all of the symptoms they have, by the time I get to the 10th or 12th symptom, they at least "get it" that they really do have health issues! Dawn
  3. Hi Angela, I hope your son does not either, I wouldn't wish this on anyone (well almost anyone, lol ). Its been a rough 6 years so far. What the first specialist told me when Lauren was 12 and diagnosed, is that the parents may not have dysautonomia, but may have "related issues" to pass on the genetics. So, my husband has always had alot of sweating, and I have migraines and something like IBS, and recently diagnosed with a type of colitis. Both of my daughters show tendancy towards hypermobility, and I do see some possible hypermobility issues in my sister and her daughter, my niece. So, no, we have not been diagnosed with dysautonomia. I know Lauren has a friend with POTS, she is 20 years old, and she has made the comment that she may decide to not have her own children someday since she does not want to pass this disorder on. I know that is pretty extreme to feel that way and she is only 20 and there are good chances her children will not have it. Thank you for your kind words. Dawn
  4. Well, I have 2 daughters and they both started having symptoms at age 9-10 years old.Kind of freaky to see the same or very similar issues and symptoms happen all over again with my younger daughter at the very same ageI The first symptoms are in bold: Daughter 1, now 16, was diagnosed at 10 1/2 years old with fibromyalgia then at 12 with POTS. Her first symptoms were unexplained and ever changing areas of pain throughout her body (she wasn't an athlete where she was straining her muscles or anything like that)We invested in a bunch of over the counter braces/splints because it made her feel better to have her joints supported one week it was her ankle the next it was a knee,, the next her shoulder, on and on.. And fatigue She also started sleeping more and having worse quality sleep. She would and usually still is.." sleeping" for 11-13 hours a day and had been sleeping 9-10 hours a day at age 10. The dysautonomia symptoms started at age 11 1/2 with: presyncope(black outs, dizziness), tremors, alot of GI pain and migraines, heart palpitations (which we found out was tachycardia), sweating profusely and shortness of breath. So she has been feeling like this for 6 years, with many other symptoms that have come their way, too many to talk about here, and we have tried almost everything out there for treatments and have great doctors, but that is how it started for her. Daughter 2, now 11, started at age 9 with colors in her vision (vision disturbance). red and blue (older daughter has vision disturbances too). The color can be throughout her visual field or it can be in shapes or blobs that move around in her vision.These colors get worse when her other symptoms of dysatonomia get worse. Then nausea everyday, came along next, along with GI pain.. Then presyncope symptoms came next at age 10. This year at age 11, she has the dizziness and passing out feelings even when sitting.. She is usually very cold, wears alot of layers of clothing, and even her 3rd grade teacher 2 years ago, noticed that she was looking very pale in color. She has orthostatic hypotension.
  5. I will have to check out the site. Thanks, Claire. We (my daughters and I) have been going through such a rough time lately, that I have seriously considered trying to start up a local support group or groups. My daughters both have dysautonomia and I have "related health issues". I also suffer from being a parent (and a nurse) and having my heart broken on a regular basis, thanks to how this disorder has affected my kids and their lives. Dysautonomia is different from say, diabetes, arthritis,etc that kids may have. It is such a mystery at times, with so much of the body and organs involved, each day is like a rollercoaster ride. You never know what is coming next, you've tried about 20 different medications, and nothing seems to help. You've tried physical therapy, accupuncture, one thousand doctor appointments, one hundred tests, and nothing helps except to get the diagnosis with autonomic nervous system testing. So, even as a nurse, I have had my really low days, believe me, as a mom seeing my older daughter go through this for 5 years since she was 10, and now my younger daughter, age 10...why do they both have to have this in their lives? My 15 year old somedays looks like the 80-90 year oid patients I take care of. I am thinking... one group for the parents and one for the "kids", or something like that. All of the internet support is wonderful for this disorder. However, I think if people could meet in person, even if it is only a few times a year, it would be so helpful and supportive. There is an "adult" support group in Milwaukee, so occasionally I have brought my older daughter to a meeting. We have met others in the area, thanks to that support group, but now I am thinking of something that applies more to parents and kids/teens. We know about 6 families within 2 hours or less driving distance that are affected by dysautonomia. If anyone has any ideas for me or would like to help be brainstorm... I will start working on this as soon as the girls are done with school for the year, and maybe get something going by July. We live in the Milwaukee/Waukesha area of Wisconsin, if anyone is interested or you have any suggestions for me. You can send me a personal message too. Thanks! Dawn
  6. Hi Kayla, Yes they are both in Milwaukee now, and my 2 daughters are on the waiting list to see both Chelimskys at Childrens Hospital, I guess they do their "joint" appts on Mondays together. My daughters have been seeing a GI Dr. at Childrens for about 1 1/2 years now. He is very good, but sometimes I feel that becasue they aren't very extreme, like can't eat at all, or throwing up all the time, that he hasn't done further testing with them. He has just had them trying different meds for constipation, pain, etc. I do feel that they have motility issues, so am being very patient and waiting to hear from the GI clinic when they will have an appt. I assume it will be sometime in June or July at the earliest. If anyone is thinking of traveling far to come to see them, we live 30 minutes from Children's hospital, and I can help you out with any questions you may have. Christy D....we never got in touch with each other...would still love to talk to you about the Mayo teen pain program. I decided not to have my daughter go to the program--too long, cant take off of work for 3 weeks, etc. Wondering how your son is doing, etc. Kayla, you can send me a personal message if you would like to "meet" my 15 year old daughter. She is on a website with other teen girls with POTS and has a blog, etc. It always helps to talk to someone who knows what you are going through. She's going through a rough time last few weeks. Dawn
  7. Thank you to all of you for your replies. Just got the word today from the neurologist offiice, that, yes indeed, the brain mri is normal. As I am grateful that it is normal, there's always that, now what? question. So it is eith er dysautonomia related or ....? Now my ? is, what I think 2 of you mentioned..... chiari..since alot of her symptoms fit that, of course, alot of the symptoms with chiari fit dysuatonomia too! I will be checking into that in the next few weeks. I asked the nurse to ask the neurologist if the mri she had could show chiari,so I am waiting to hear back. Also contacted a chiari specilaist clinic to see how I can have my daughter seen there. I'm so sorry for what you have all been through and are going through with this. / She also has had such bad eye pain and pressure that seems to shoot from the back of her neck to her eyes. Feels like she has boulders weighting down on her eyes. YEs, she does have shaky side to side visual distortion too, besides the "visual snow" type of visio where it looks to her right before a person passes out....but she doesn't pass out/ This visiion disturbance alone gets her feeling like she is going to pass out and also extreme nausea. . I don't think her eyes have physically moved quickly side to side though, like a nystagmus. Its just that her head and eyes are still but it looks to her like she is shaking her head side to side. Freaky. OF course school seems to only want to deal with a vision problem IF you have something actually, physicallly wrong with your eyes. Not this crazy autonomic nervous system dysfunction that couses a person's vision to be messed up! They can't help kids with that...Eye dr. says she has good vision. By the way we have been to 2, count them, 2 neuropthamologists, one of them twice, so a total of 3 visits in the last 2 years....and nothing....everything is normal. Regular opthamologist too of course. Nothing. Dawn Thank you for all of your helpful thoughts and listing your symptoms.
  8. Has anyone had an MRI of their brain to see if any of their symptoms might be an issue in the brain. I'm specificallly hoping to find a reason for my daughter's (POTS since she was 12, now 15) visual disturbance and why it is getting so severe.She can barely see enough to read or see her violin music at times. She has these visual disturbances all the time, they get worse and better. LAst 2 weeks have been awful! Now she is also having extreme brain fog, stumbling over her words, can't find the right words, trouble typing the right letters on computer, and trouble getting her fingers to play the violin notes correctly. Scary! But i'\m sure this is all part of dysautonomia, which will mean there is nothing they can do and nothing shows up abnormal on the MRI. I'm just hoping something would show up in the occipital part of the brain, and it could be treated, and she would be all better!!!!! Well, us moms can dream can't we?? Hoping school can help out too. I get so sad when I think about how this affects her beautiful violin music! I know some people have had to give up their favorite activities becasue of this disorder. Thanks for any input, experience, or advice you can contribute. Dawn
  9. Hi Brenda, Oh no, both of our girls are going through flare ups at the same time! I saw your post and had to say hi and i"m so sorry for you and Liz.. I also don't know how much I can take anymore...I almost called you today again. I cried the other night at work when someone asked me how Lauren is. I'm having so much abdominal pain myself, I try not to get too stressed about all of this.Good news is there is a chance I'll have a CT scan or gallbladder removed. Back to the girls, enough about me: I hate this disorder, I hate what it does to our kids. Natalie can barely function some days now too. Why do the symptoms have to get so scary sometimes??!! Why can't they feel good enough to keep up in school???!! Lauren is going to have an MRI of her brain in thenext week or 2. She had one 3 years ago, but has new symptoms, so is going to have it again, since she can barely see enough to read right now. Verbally, and mechanically having issues too. I will tell Lauren to contact Liz. I'm thinking of you guys all the time! Dawn
  10. Hi Christy, After sending a private message to you, now I found this post that you started..So now i have a little more info on what specifics they do in this program. I was wondering about what they do that is supposed to really turn things around for these teens and children. Thanks for listing some of the things they do in the 3 weeks, was wondering what this program was all about. I do know about the goal of getting off of as many meds as possible, and the not talking specfics about symptoms and pain. It just seems like it would be so hard to do that sometimes...is it still working for you guys? Dawn
  11. Another answer of yes (unfortunately) to this post...my daughter has had this a few times, next time I should check her BP when it happens--to see if it is low at the time. She hardly ever wakes me up in the middle of the night, but she did about a week ago when this happened to her. She even wears CPAP when she sleeps. It really freaks her out, too to feel like she is going to pass out while she is sleeping or awake but laying down. She has also had a ton of sweating again in the middle of a Wisconsin winter--lovely issie for a teen girl to have on top of everything else going whacko in her body with POTS and fibromyalgia! Sorry, I am a nurse, but I don't have any answers to this one--except that it must be part of having dysautonomia. Dawn
  12. Brenda, Just thought I would say hi on the forum and let you know that we are thinking of all of you! So freaky that the girls have both gone downhill once again--same time of the year every year for Lauren for the last 4 years! Lots of positive thoughts being sent northwards to you! Talk to you soon! Hi to L. and A. Hugs, Dawn
  13. Hi Dusty, My daughter diagnosed at almost 13 actually started with symptoms at age 9 or 10. Her specialist also mentioned that there is a strong genetic link, and to watch my younger daughter for symptoms. He said that the parent doesn't even have to show signs of POTS, but if the parent has other related things going on like migraines, irritable bowel syndrome, etc--that there is a connection to POTS that way. Dawn
  14. LOL about that doll! My daughter had to go off Prozac (ssri) for a sleep study 3 weeks ago--and thank goodness the sleep study was done last night. Tomorrow she can go back on the Prozac but slowly get back to her regualr dosage. Proof that the Prozac helps her: these last 3 weeks have been chaos--between her mood swings and her pain!!!
  15. Sorry about that, I was trying to reply... Ramakentesh, You are not dismissive at all. I'm sorry that it is so bad for you at times, too. My daughter's vision also seems to be affected all the time like you--no matter if she is sitting, standing, or lying down. She does not seem more tired after reading--she is just so tired and fatigued most of the time as it is. Her eyes seem to stop focusing after awhile, though. What your doctor said about it all makes sense. It's just not good news though!
  16. I will talk to her Dr. about possible optical migraines, Firewatcher, thanks. Julie, thanks for all of the insight, advice, and kind words. I am taking your suggestions with me when we have the school meeting and I will look up Florinef again--I know its one of the meds for POTS, but don't know much else without looking it up. Currently she takes: Prozac 30 mg for the SSRI effect, Zebeta (beta blocker) 2.5 mg, ibuprofen 600=800 mg as needed--but doesn't touch her usual pain-- of course--and when she has seasonal allergies--Zyrtec 10mg--like you take--I know there is a connection to Zyrtec helping something with POTS--I'll look that up too. Rheumy Dr. wants her to start Rozerem for help with sleep to see if that helps her pain and fatigue (she has insomnia and trouble falling asleep, which is common, I know, with all of these disorders). She is having one more test in the near future--a sleep study in 2 weeks--I'm waitring til after the study to have her try the sleep aid. None of the other usual meds have helped her pain (4 different NSAIDS, Tramadol). Supplenments: Vit D 2000 ius and magnesium 250mg. I was kind of hopeful about the lyme and other yucky diseases from ticks being negative---but now you got me thinking again. You see, our dog tested positive last year and went through the treatment. He never leaves our yard--so I've been concerned about our whole family. Thanks for the info about" the worst" being at this age--let's hope!! Hugs back at ya! Dawn
  17. Ramakentesh--it seems like you are able to ignore the visual snow, or at least not let it bother you so much. I am guessing that you are an adult. I, of course am dealing with a 13 year old, who has been in pain and fatigued for 3 years now with what was diagnosed with fibromyalgia, then out of the blue, she started having neurological symptoms in April 2009, which led to a tilt table test, and the dx of POTS-and I do believe that these are very related disorders. How do you not let the visual snow bother you so much? What words of advice from you can I give her? You said that you tried the Erlin/colored lenses--I am checking into that for her. Yes, she complains of tired eyes and severe eye pain several times a week. She, like you, has a strong family connection with migraine--me and my side of the family, yet, she doesn't seem to have actual migraines--just an occasional headache. Unless the eye pain she gets are migraines? I will run that by her Dr. She does okay with reading before bed IF the snow isn't too bad. She does seem to like to read in lower light conditions, I've noticed--as Mack's Mom said her son does. So far, my daughter's visual snow and other vision problems have been everyday for the last month. Since April 2009, she had these visual disturbances a few times a week, so I don't know why, but she is having it everyday now, and for most of the day. She says it is a mild problem about 30% of the time, 40% it is a moderate problem for her, and 30% of the time it is very bad. When it is very bad--she says she can barely read 1-2 pages of a book, and that she is not comprehending what she just read because the visual disturbance takes over and bothers her way too much. she also had had the sensation of looking at a page on her desk, and it seems to be reflecting back at her, and she couldn't read it at all. Needless to say, this is affecting her schoolwork, and her attendance at school. When it is mild, she can read much more, play Nintendo DS games, see her violin music, etc. I am concerned about the 70% of the time that she has the moderate or severe disturbances/snow. She does not spend alot of time on the computer right now. When she does, she seems to be fine with the screen as it is. Do you believe or have you heard from any of your doctors that the POTS is causing the visual disturbances? I think you do, becaause you mentioned a stimulated sympathetic system affecting the brain stem, and that it is part of POTS. That is what I believe too, personally. However, the neuro-opthamologist she saw says that he thinks it is a seperate issue, and not related to POTS. (I think he is fairly knowledgeable about POTS) Who knows???? I will ask her POTS specialist what he thinks when we see him in February. Thanks for your help!! Macks Mom---her school is in the process of setting up more accomodations for her at school--we will have a meeting after her doctors give some input into her situation--the school nurse is contacting them this week. I hope that they give her a medical excuse/incompletes for her grades this quarter--that's all I can say--she has missed so much thus far at school. I will ask about the testing that you mentioned. There is a vision specialist that they will be contacting. I think you mentioned in a different post that you have fibromyalgia, too, like she supposedly has. (Diagnosed with fibro at the age of 11) I also was utilizing the Pediatric Network before it closed down and through that site and others--I wanted her tested for lyme. She was recently tested for lyme and other related illnesses with about 5 different screens of blood, and everything came back negative. The new rheumatologist that she is seeing does not like to diagnose people under the age of 18 with fibro. So, he is searchng for another possible cause for her fibro symptoms. So far, no new ideas, though, since hip xray was normal and bloodwork normal. I don't think that POTS itself is causing all of her symptoms---so my belief is that she has both, and that they are very interrelated--obviously, her nervous system is affected, both the autonomic and the central part. I just wish we could find something that would help a little bit! Possibly we are considering a very low dose of Lyrica--I have put off that idea since she is 13 and we hear about the side effects, however, she would only take like 25 mg or so--so am reconsidering it at this point. Thanks for your help!
  18. Thank you Julie! I will get some of those colored sheets this week, and I found that website very helpful, so far. I will read up on that info on the site when I have more time. Thank you very much for the help. Dawn
  19. Thanks everyone for your suggestions! Visual snow is not so much like fireworks, but like very tiny white and gray specks throughout the visual field that are constantly flickering--like when you have a tv on and it is not tuned to a channel. There is a website that has demonstrations of several visual disturbances, if anyone would like that site, let me know via email or PM, since I don't know if I can post that here. The specialist had her look at that before her appt. to help him figure out what she sees. She has used sunglasses in the past (even at school) for the times that her eyes were so sensitive to any light. It helped a little. Yes, of course, the lighting is almost all fluorescent. In the rooms where there are windows, I will ask the teachers to try the natural light with her. I did check in with the school psychologist about her vision issues, and he did say that they will do whatever she needs to help her (he is in charge of helping students with 504 and IEP plans). She does have a "helpful accomodation plan" in place, but they have not called it a 504 yet. So, the school is supportive, I just will need to check into testing that should be done with her. We are in a terrific school district and want her to stay in school as much as possible. That eye therapy sounds interesting--I will ask the nurse from the opthamologist's office about any ideas---when and if I get to speak with her. Thank you, Dawn
  20. I think my daughter is recovering from h1n1. Her school had a 23 percent absence rate this week for 3 days, but they did not close the school. Can you believe it? The health dept. claims that closing the schools doesn't help with decreasing the infection rate! Just think of all those students missing alot of information in their classes because they are sick. The school really buckled down on keeping kids home with fevers. No one was allowed with a temp above 99.9. There were 50 confirmed cases of the h1n1 at her school. Her pediatrician felt that he did not need to run the test on her, but he did give her Tamiflu. This was the first experience our family has had with this antiviral med. I think it really helped her with the virus. She only had a 101 fever for 2 days. The cough was/is nasty, but she felt alot better after 2 days on Tamiflu. I totally isolated her at home in her room once she had the first sign of being sick. Having fibro and POTS, she really gets sick when she gets sick, as I'm sure alot of you do. She did have the seasonal flu shot 1 week before she got sick with this virus. I guess she won't need the h1n1 shot, now...LOL May still have by younger "healthy" daughter get the shot. Dawn
  21. If anyone has any suggestions...please let me know. My daughter saw a neuro opthamologist this week for her visual disturbances. I have seen posts about other vision problems, like tired and fatigued eyes, fuzzy vision, etc. but this is different. Has anyone else heard of or have this "visual snow"? She also has a few more vision issues (like she can't read at school sometimes becasue the page looks like it is reflecting like a piece of glass, contrast--things look lighter to her) and I feel it is related to the POTS, but the Dr. feels that it is a seperate issue (not POTS) and that perhaps it is inherited from me, because I have migraines, and therefore we both have "visual perception sensitivity"--like black and white patterns bother us. we get car sick easily, etc. He told her to ignore it as best she can! Yeah, right. He has to ignore the tinnitus he has in his ears, and she will have to do the same with her visual disturbances. There is no treatment, and he only diagnoses a new patient with this about once a year. I am concerned that she is becoming visually impaired, since it has become a daily occurence--about half of the day or so every day for her. She is falling behind in reading and algebra despite accomodations at school. Do you think reading glasses would help? I have a call into the nurse but have not heard back in 2 days just from the nurse... I am wondering if there are any tools/aids that could help her. She also gets eye pain which I attribute to POTS and fibromyalgia. She doesn't see her dysautonomia specialist until February--only met him once in June when he diagnosed her. I don't feel that they are ocular migraines, because she has this everyday, now, and he did not discuss migraines with her. She rarely gets headaches, but also has fibromyalgia for 3 years now. (or maybe the fibro is really just POTS--who knows!) Any thought on this? Thanks for your help! Dawn
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