PattiL

Hi Julie, I know this summer has been particularily bad for Chrissy. I think it's been extra humid this year, which isn't helping matters. The 'parking lot to store' is very similar to what Chrissy feels.The car can't cool down quick enough for her. It wouldn't be a bad idea for us to purchase some type of neck wrap for her, at least she could use it once we get into the car. Patti

Hi Everyone, I tried looking this up on previous posts and couldn't find anything. Does anyone know if there's been any type of study done on whether POTS could be somehow related to where you live? It seems like there are so many people from the Midwest. Could it be because they're diagnosed easier/sooner b/c of the Dr's that specialize in POTS are there? Could it be something in our environment. I know there's people in Fla, out west, Canada and Europe, it just seems like more come from our region. Do other people just not know about the site, or possibily not know what they have yet? Just wondering. Patti

Nina, You go girl!!! Your reply was awesome. I wish I had your way with words when my daughter's been 'attacked' by some ***hole. My emotions ALWAYS get in the way and I sound like a bumbling idiot. Good for you. Patti

Hi Jennifer, Another Ohio girl!! Welcome to the site! We live east of Cleveland, so we will probably know alot of the same Dr.'s. My daughter is 19 and has POTS. I don't know if you've read past posts or not, but recently there was a discussion about Dr. Foaud--unfortunately everyone's had about the same experience with her, you're not alone. She great at dx, but forget any type of follow-up. My daughter was placed on a beta-blocker by Dr. Chelimsky at University Hospitals when she was first dx'd. We saw Dr. Grubb in Toledo a few months later, he took her off the beta blocker and put her on florinef and there was almost an immediate difference. Dr. Grubb has now started her on promaitine along with the florinef, although it doesn't seem to be working yet, I'm hoping once the dosage is tweaked a little that she'll be feeling better. As far as your heart rate goes I'm not sure. My daughter's is always very low, but she also gets weird feelings in her chest alot. ALL the Dr.'s, especially Dr. Grubb would always say "POTS is a very annoying condition, but it is not life threatening", which is reassuring. Take care, Patti

Hi everyone, Patricia, I'm so sad to hear that your daughter blames you. Does she have any siblings? I know my sons have helped my daughter tremendously with her outlook on so many things. Is she willing to talk to other teens with the illness? There's a great site for teens, I can't think of the name of it offhand, maybe someone else can. (Is it part of the pediatric network?) My daughter was also homebound for more than a year and had to be home tutored, missed her entire sophomore year of high school. It was a sad time b/c all her high school "friends" (and I use that term lightly) all dropped out of sight. Once she was able to start at the community college, she had to start all over. I just thought I'd put in my two cents as a caregiver, not someone inflicted with the illness. When my husband and I decided to have children I was very concerned about passing on any bad genetics through his side of the family. He had a sister who passed away at 6 years old who ultimately died from polycystic kidney disease, she was also severly retarded, deaf and blind (this was 40 yrs. ago). We had genetic testing for both of us at a major hospital (university Hospitals in Cleveland) and were BOTH given the ok. My husband was not a carrier for any of the illnesses that his sister had. I got pregnant with my twins, they were born prematurely (at 30 weeks) and were in the hospital NICU for approx. 6 weeks. My son is fine, but Chrissy was dx'd with POTS at 15 1/2 yrs old in 2001. It started after she had a bout of broncitis that wouldn't go away. Did she have symptoms of POTS prior to this--looking back there were a few unexplained episodes she had, but it became full blown in 2001. My younger son is 16 yrs old, had chronic stomach problems for about 10 years, then they mysteriously disappeared last year. Did genetic testing miss something, or did she get POTS after a viral infection. We don't know for sure. I've asked the Dr.'s about her being premature--could it have anything to do with POTS? They don't think so. Everyone is different and entitled to their own opinion, but I would NEVER, NEVER, EVER change my decision about having children. Does Chrissy have some really***** days when everyone else is doing something and she's sitting home with me, of course, but luckily she'll just read or talk on the computer for hours and not complain too much. I've been blessed that she's always been my 'happy' child. This illness has definitely made her a much stronger, more mature young lady. I wish she didn't have it and I did, (sometimes the guilt is overwhelming wondering 'what if' ) but wishing won't change anything so I just try to help her as much as I can. And yet, I have no regrets about having her or my other children. I actually don't know what I'd do without them. I feel for anyone who has to make this decision, it is very difficult and personal. Chrissy herself is worried about the future and having children. The actual pregnancy and childbirth scare her to death, not to mention the child-rearing and hoping you don't give your child this illness. At this point when I ask her what she'll do, she says she can't imagine life wihout her own children. She and her husband will have to make that decision when it comes time. Take care everyone, Patti

Thanks so much Kristen. I guess you're right in saying it's best to wait until Chrissy goes away to school. We should have a better idea then. No one else in the family is ill and we've been living here for 5 years now, but it's still scary thinking about what could be. Thanks for all the company names. EA Group is very closeby, I think I'll wait to see what happens to Chrissy once she's away and then possibly give them a call and pick their brains for ideas of what should be done. Dr. Deaborn sounds so familar also, could be we saw him when the kids were little. I think I'll make an appt. with him on Monday. Thanks again Kristen. Patti

Kristen, Since we both live in Cleveland, could you please give me the name of the company you had to your house for the air testing--was it expensive (if you don't mind saying). Also, was the Dr. you went to for environmental exposer a local Dr.--what was his name. I will have the most incredible guilt if this is what is causing Chrissy's problems, as I'm the one who wanted a new house and wanted to move. I should've followed my gut back when she got sick and gone to see a Dr. specializing in this and not listened to anyone else. I can't wait until she leaves for school now--and I will be extra careful on what cleaning supplies I use to clean her dorm. Thank you to everyone. Patti

Dayna, I've always wondered if there was some correlation between Chrissy's illness and our home too. Before she was dx'd with POTS I had asked our Dr. about the possibilties and he thought she would have more respiratory problems if it was related to our home. BUT, we built our home shortly b/f she became ill. Sometimes I wonder if it's sealed too tightly or the toxins of everything new could have anything to do with exasperating the POTS. We'll find out in a couple of weeks when she goes away to college, if she starts feeling better there we'll know for sure and then I'll start packing! Patti

Hi Michelle, I love this brochure! Can I order some just to have as hand outs to various Drs., ER visits, schools, etc. I would love to just be able to have them with me. I'm sorry if I've missed something, but I only saw where it could be sent to the Drs. directly. Would I send the cost of them directly to the Brooklyn, MI address? Thanks. Patti

Ditto--never heard of him either. Please let us know any additional info you get on him. Can't hurt to see another specialist. Patti

Hi Dayna, Although I don't have POTS, my daughter does, so I try to chime in when I might actually know something. My son went to bio-feedback for chronic stomach problems and it seemed quite helpful for him. I was able to sit in on all the appts. with him and basically he was laying down in a recliner and was 'almost' put into a semi-hypnotic state, through deep breathing, thinking about a pleasant place to be, etc. The Dr. said it's to try and calm your entire body and focus on your breathing, relaxing. My son's Dr. was awesome, his name was Dr. Howard Hall at University Hospitals, here's a web-site with some info on biofeedback that he co-wrote, although he is a pediatric Dr., I hope this helps. Patti My Webpagewww.mothernature.com/Library/Bookshelf/Books/46/20.cfm

Hi Kristen, My daughter, Chrissy received her associates from Lakeland CC this summer and will be attending John Carroll this fall. She is going to try to stay on campus. Mornings are still extremely difficult for her and we thought it might be easier for her to just be able to get up and walk across the street rather than drive the 30-40 minute commute. We'll see how it goes. She's going to try and take 12 credit hours each semester to be full-time for health insurance purposes. You mentioned that you're going back to see Dr. Fouad this week...have you had good luck with your follow-ups with her. We had a very difficult time when trying to communicate with her after the initial diagnosis. Let us in on your secret! Have you ever gone to Chelimsky at UH or is Fouad the only person you've seen so far? Patti

Hi Kristen, Just wanted to say Hi from one Clevelander to another! My daughter has POTS and is 19 yrs. old. Welcome to the site. Patti

Hi Rachel, My daughter Chrissy has POTS and was first diagnosed in 2001 by Dr. Chelimsky. We wanted a second opinion so we went to Dr. Fouad and finally we went to Dr. Grubb. We are not familiar with Dr. Deran. Dr. Chemilsky is very good at diagnosic testing, BUT we have detected some arrogance with him. He's nice, reminds us of one of those crazy professors on TV actually! He's OK at following up, MUCH better than Fouad, which as Lisa said, is non-existent. Dr. Chelimsky's staff has always been great. My complaint about him is that he always made my daughter feel bad in the fact that he was always pushing her to go to school when she couldn't even walk unassisted! He insisted that she should attend at least part-time, which of course didn't happen (she was 16 and in her sophomore year). He also put her on a beta-blocker which wasn't helping her at all and of course, had her see the town shrink thinking there were underlying problems. He's the one that diagnosed her with POTS--go figure! As stated in other posts testing is wonderful at CCF, but that's about it. Once we made our appt. with Dr. Grubb and saw him, he took her off the beta-blocker immediately and put her on florinef. The difference in how she felt was like night and day. So, if at all possible, see Dr. Grubb, or at least his PA, Beverly. If you go on a Tues. or Thurs. you can meet with her and he will also be there and hopefully be able to spend some time with you. From what I understand I don't believe he does any testing though. Good Luck, Patti

Hi Emily, Chrissy had something similar with a med called Keflex, it wasn't a rash, more like little bumps like you're explaining. She started out with them on the trunk of her body also, her chest, stomach and back, barely started on her legs and arms until it hit us that it could be the meds. I don't know anything about Doxepine, however, nothing would surprise me. Patti

Dizzygirl, As far as your appt. with Dr. Grubb---Was this your first appt. with him? I don't know how long of a travel it is for you, but this might be worth it...Call back and speak with Sherry and get an appt. with Beverly, his new assistant. If you get an appt. with her on either Tues. or Thurs. I believe those are the days Dr. Grubb is there (ask). She will see you and then Dr. Grubb can stop in and briefly go over everything with you/her. It might help you. The same thing happened with us when we had a cancelled appt. with Grubb. It was too long of a wait to see just him, but we got in to see Beverly the week after I called. Hope this helps. Patti

Jessica, Both of your boys are absolutely gorgeous!! Congratulations! Patti

Just thought it'd be kind of neat to find out from everyone what we all eat on a daily basis? Are certain foods intolerable? Do other foods help symptoms? Do you feel better most of the day after starting your day off with a certain food? I know I salt my food like crazy, eat a LOT of fruit every day and try to eat a little bit every few hours rather than a few big meals. I do find it hard for me to eat a lot of the time though, because I just don't feel hungry at all. Same with drinking. I have to switch off with my foods and drinks a lot, I kind of get on a "kick" for Gatorade, but after a couple weeks I don't want to drink it anymore. Same thing happened with pink lemonade, chocolate milk ... plain white rice with salt, chicken salads, pancakes, you name it! Does anyone have any good recipes/meals that don't bother them and that keep them eating most of the time? Even a snack that seems to help! For me, Nilla Wafers and Premium Saltine Crackers are my favorite. Seeing that we all need to keep ourselves hydrated and eating well, I think it would be a great thing for everyone to share. Eating even the littlest bit is so hard to do when you feel sick! Thanks! Chrissy~

Hi everyone, We've been waiting for months to see this Dr. and our appt. is finally tomorrow. She's a rheumatology, allergy, autoimmune, fibromyalsia and lupus specialist. After all this waiting I'm not sure exactly what questions we should be asking. She has all of Chrissy's records from all her other Drs., (pediatrician,cardiologist, allergist, neurologist, CAT scan's MRI, blood tests, etc.) I'm assuming she'll be doing some type of autoimmune testing. Has anyone seen such a Dr.? Any ideas? Chrissy's POTS has been acting up quite a bit lately. Cleveland weather hasn't helped any--so far it's been a really terrible summer for her. I feel at such a loss sometimes when speaking with new Dr.'s I don't know what to expect. We've been disappointed so many times, as you all have. We're also seeing Beverly and Dr. Grubb this week--YEA!! Thanks for any info you might have. Patti and Chrissy

Jan, Our thoughts and prayers will be with you. Chrissy and Patti

Dear Ernie, Sorry I don't have any advice for you, but I wanted to offer my condolences. Do whatever you believe in your heart, what will give you the most peace. You'll be in my thoughts and prayers. Patti

Thanks Linda and Karen, I was beginning to think it was just us! Glad to hear you've both gotten rescheduled. I'm hoping we can get in before Chrissy starts her classes in the fall again. Guess I'll just keep on calling. Thanks again, Patti

Thanks to everyone for your replies. Yes, Chrissy will be attending college this fall and it was recommended that she get the shot. I'll still try to get ahold of Dr. Grubb, but thanks for your experiences. Patti

Hi Julia, It just infuriates me when I read posts such as yours. I think most of these health care 'professionals' ( and I use that term loosely), are the ones who need psychiatric care! I agree with Sally, try not to let this Dr. upset you too much, as difficult as that may be. There are caring, understanding Dr.'s out there. Heck with him!!! Manifested your pain my butt!! Who do they think they are. I wish you much luck in finding a new neurologist - one that actually understands what you're going through. Take care, Patti

Hi, Chrissy had an appt. with him in the beginning of Feb and it got cancelled b/c of his surgery of course, but after a few attempts in calling to get her re-scheduled, no one has ever called back. I've left a couple of messages with one of the nurses, no luck. I don't want to be a pain in the butt--has anyone else had any luck in re-scheduling? If so, how? Thanks, Patti