PattiL

Hi, Chrissy also has nausea, pretty much on a daily basis. I don't thinkshe gets it only in the morning however. One of the reasons we were given is slow gastic emptying. She wears $7.00 'motion sickness' wristbands that we've purchased from AAA, they seem to help her quite a bit. Take Care. Patti

Hi Everyone, Well, Chrissy and I had our appt. with one of Dr. Dearborn's associates last Wednesday. Her name is Dr. Fagan and she is also with University Hospitals in Cleveland. They opened up a new clinic at UH this February. "Dorr G. Dearborn, MD, PhD, Director of the Mary Ann Swetland Center for Environmental Health at Case Western Reserve University School of Medicine, has announced the opening of the Swetland Environmental Health Clinic at University Hospitals of Cleveland. Kathleen M. Fagan, MD, MPH, is the new medical director of the Environmental Health Clinic. She is board-certified in Occupational Medicine and an Assistant Professor in the Department of Family Medicine at Case Western Reserve University. "This environmental health clinic, unique in Northeast Ohio, will provide consultations with health experts in chemical, physical and biological sources of disease," Dr. Fagan says. "Our clinic staff is prepared to treat patients with occupational asthma, reproductive disorders, lung diseases, dermatitis, cancers, chemical and metal poisonings." It was mostly a question and answer session. She gave us a web-site that she is a member of called environmental health watch, it's www.ehw.org, which if anyone is interested had a lot of good information. She suggested pulling out the carpet at least in Chrissy's bedroom, as well as other areas of the house if possible. She also said the HEPA air purifiers are the best way to go, as many of you stated to me on a previous post. She said she recalls seeing another patient with POTS and similiar circumstances, where they felt better away from home. She was going to try and find their records to compare to Chrissy's. She also said the best bet is to get an environmental company to come out an test our house. I have to call around this week to see just how much it'll cost, I'm afraid it's going to be too expensive to do right now. I think we're also just going to purchase a HEPA purifier for her bedroom and not rip out the carpet just yet. Our house is only 5 years old, it would be such an expense replacing all the carpeting with hardwood. We just don't have the funds right now with two kids in college Well, just thought I'd update everyone, Take care, Patti

Hi Evie, Chrissy just had her wisdom teeth out this summer. The oral surgeon WOULD NOT do any work whatsoever without talking to her cardiologist, who is Dr. Grubb. She had a saline IV, and I don't have her records with me right now, but they double checked everything according to Dr. Grubb's recommendations. She had all four wisdom teeth removed. She was pretty much out of it for most of the day, i.e., sleeping alot. It took her about a week to recover. Her twin brother had his removed a few months later and it took him only 3 days to feel pretty normal. (he doesn't have POTS). You should be fine. But, I would definitely say to have whoever your cardiologist is, or whoever takes care of your dysautonomia to have them contact your surgeon prior to any work being done. We felt so much better knowing Dr. Grubb had a part in her surgery. Patti

Ernie, Please tell Morgan that we are all thinking about her if you talk to her again. She will be in my thoughts and prayers. Patti

Hi Jennifer, My daughter LOVES the cold weather! The colder the better! She has the A/C on high in the summer and the heat low in the winter. She does better physicallyand mentally in the winter, and we're right in the heart of the snow belt east of Cleveland! The more snow the better. She actually starts feeling better right about now as long as the weather stays in the 70's, until about May. Also, like Poohbear said, the humidity is a killer for her. I hope you get some relief soon. Patti

Morgan, Good luck in the hospital You will be in my thoughts and prayers. Patti

Hi everyone, Poohbear, you read my mind My next question to you was whether you knew if the saliva test was more accurate or not! I'll definetly discuss this with whichever Dr. we end up going to for the tests. Finrussak, I couldn't agree with you more on how most/all these articles are for the general population. My mother-in-law, as well meaning as she is, caught this article and says 'this is Chrissy'. Although admitting she does have POTS, wondered, as I did, whether some of these overlapping symptoms could be cause by a hormonal imbalance. Oh Boy--another avenue to walk down!! Now my search for a good local endocrinologist! Thanks so much, Patti

Hi guys, We've thought that it could just be a random thing that she got nauseaous when she came home. It just seems odd that she hasn't felt that way at all since being at school. I don't know if it could be a mind over matter issue because she's so darn busy or what. Even when she and I went to NYC last spring she wasn't as ill and that was only for 3 days. I'm just really worried about our house now. Now is the time for me to check things out though, while she's away. Gena and Kristen, Thanks for the info on the HEPA filters and air purifiers. I guess I have a lot of reading to do--and price checking! I'm going to see whether Dr. Dearborn or one of his associates writes back this week and see what his input is also. Kristen, I may be e-mailing you soon for more info. Louise - At BVR we just sat through the orientation Fri., didn't meet with a counselor yet. I think our appt. with her is next Fri. We'll see what happens, cross your fingers! I let you know what she says. Thanks everyone. Patti

Hi everyone,] Good news/bad news. Chrissy is having a ball at school--hence why there haven't been any posts from her recently! That's the good news. Bad news, she stopped home yesterday for an appt. with BVR (and of course for me to wash her clothes), well, she wasn't home for an hour when she started getting nauseous! She had to put on her trusty wrist-bands (the anti-nausea ones for sea/car sickness). She also said she doesn't have nearly as difficult of a time getting up in the morning and NOT b/c she has classes - they don't start until after noon. She just doesn't feel as tired as at home! I wrote to Dr. Dearborn, who is a specialist in environmental health at University Hospitals, we'll see if he answers or not. I'm also going to call a couple of environmental service companies in the area. We are also thinking of purchasing an Ozone machine--anyone have any experience with one? Patti

Hi Melissa, Yes, the hormone is cortisol. Thank you, thank you! I hate it when I ask a question that's already been discussed! I must not have 'keyed' in the right words when trying to look up past posts. Thanks so much for your explanations. I'm going to call her Ped just to make sure she's had these tests, as you mentioned she probably has. thanks again so much. Patti

Hi everyone, Last month Chrissy wrote about her dry eyes and Poohbear suggested her getting her hormones checked. Well, in the Sept. 26th edition of "First" Magazine, they had an article about the Adrenal Hormone and how it can 'steal your energy'. Some of the symptoms are: unexplained tiredness (especially in the morning), headaches/dizziness, cravings for sweet or salty foods/need for coffee brain fog shakiness, especially with missed meals mood swings/depression weakened immunity WOW!!! Poohbear you mentioned that you had your estrogen, progesterone, and testosterone checked, did you ever have your adrenal hormone checked? How about anyone else? Whether you have POTS or not, I 'm thinking it's worth a shot to have these tests done to see if it could be something else contributing to the symptoms. The web site Poohbear mentioned as did this article is:www.salivatest.com; www.adrenalfatigue.org, was also mentioned in the article. If any of you have had these done, is there a particular Dr. to go to for them? I know you can order the tests on line, but was thinking it might be less expensive through insurance by going thru a Dr. I'm going to call Chrissy's pediatrician Monday to see if he's willing to run these test, or if he's familiar with them or I'll try her local cardiologist. Thanks everyone, take care, Patti

Louise, Thanks so much for your quick reply! Tomorrow is the orientation, I'll let you know what happens. Are you also having trouble getting into the pediatric network? I've been trying for a couple of days to no avail. Just wondering. Thanks again, Patti

Hi Louise, I can't get into the pediatric network for the life of me to get some information, so hopefully you'll see this. We're going to the BVR tomorrow morning, Fri., and I just wanted to get any last minute suggestions. I remember you saying that we are going there for securing a job for Chrissy. I just don't want to say the wrong thing. Thanks, Patti

Hi Linda, Every time I read a post like yours I get infuriated!! These pompous (sp?) idiots need to be put in their place! I'm so glad you fired the jerk! . Chrissy's had two colonoscopies and a few endoscopies. She had one of each b/f her diagnosis of POTS (actually trying to figure out what was wrong). After her diagnosis she's also had them and was just a little more queasy than normal and needed a wheelchair to leave the hospital b/c of weakness from the anesthesia. Otherwise she didn't have too much trouble. They did have her on a saline IV to prevent dehydration though. I hope you find a new Doc soon. Patti

Hi, I'm also a caregiver (although not as much so since she MOVED OUT ON ME!! My daughter Chrissy has POTS and just left for college, sorry, just venting! I'm stuck with all men at home now, please don't take offense--it's just really DIFFERENT! Anyway, glad you're with us, you will find TONS of information here. This site has been extremely helpful to my daughter and myself. Take care, Patti

Hi Gwendoyn, I'm so sorry to hear you have to go through all those tests. Chrissy has also seen her share of GI Doc's. Drink the barium, don't drink the barium, drink a gallon of water, don't.... Hopefully your Dr. will find something to help. I remember going to all these different Dr.'s kinda hoping that they'd find something, but also relieved when they didn't! You're so lucky that at least he's familiar with POTS! Our GI had never heard of it (so what's new). Hope things go better with your family today. You'll be in my thoughts and prayers. Patti

Steph, I was so glad to hear you've gotten your Procrit back. Chrissy was telling me how it literally has changed your life in the past. Hope it starts working immediately! Take care, Patti

Chrissy, You're too much!! Football team?!? We just won't tell Dad, don't know if he'd be able to handle it. Louise, I may be calling you sometime this week!! Just go slow Chris, salt, salt, salt and drink, drink, drink (gatorade, by the way!!) No keg parties for you kid! Have a good day. Love, Mom

Jan, You and Jeff will be in my thoughts and prayers. Hope the chemo keeps doing it's job! You are amazing!! Patti

Chrissy, You won't be reading this for a couple days until your computer is hooked up--but, just wanted to tell you that you did great today. Good luck with everything, don't overdo BUT HAVE FUN!!! It's going to be a riot for you. Love you, Mom aka Patti

Hi Gwedolyn, We're kindof next-door neighbors. We're from the northeast part of Ohio. My daughter is 19 and has POTS. I'm sure she'll love to talk with you. She just moved into her dorm room today and her computer's not set up yet, but once it is she'll be back on the forum! Good Luck and soooo glad you've found some great Dr.'s and PT. Patti

Hi Jenn, One thing you might want to check on is if Dr. Grubb will be around or not that particular day. Of course, that probably can change day to day, but I believe he's there on Tues. and Thurs. She is truly a wonderful lady though. Patti

Sunfish, Another good luck from another Clevelander! What a great time you'lll have at Case. Make sure you eat plenty of food over at 'Little Italy' for us. You're going to have a great year! Patti

Thank you to everyone on this web-site. Without it I would have never found Dr. Grubb, never known what questions to ask, never known ALOT of things about POTS!!! Emily-it is very generous of you to sponsor this site- Thank you! Michelle - Thanks for giving up so much of your time, which I'm sure seems like a thankless job at times. You are both wonderful. And thank you Nina and everyone else involved! Patti

Rita, Thanks for the link. I thought I remembered something about this a while ago! It is very interesting, I'd like to believe it's b/c of where the Dr.'s are and not something b/c of the area. Thanks everyone for your replies. Patti