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Everything posted by llcsmom

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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 t
  6. 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 y
  7. 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
  8. 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
  9. 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
  10. 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!!!
  11. 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!
  12. 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 h
  13. 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 th
  14. 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
  15. 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
  16. 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,
  17. 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 perha
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