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Everything posted by surfgirl14

  1. There is a hospital called, The children's medical center of Dallas. I looked at their cardiology program and it does have electrophysiology listed (which is a good sign) and they had tilt-table testing on there which had a type of syncope people with POTS can get. So they might be able to help her and atleast get her started in the right direction. This is the link to the tilt-table test thing and you can view the whole cardiology program if you click the back button once. Hope this helps. http://portal.childrens.com/wps/portal/!ut/p/a0/04_Sj9CPykssy0xPLMnMz0vMAfIji0sSK8tTc3KsAgwMLYzM9cP1o_SjSioLUvUjLQ30C3JzHQFqK_Fv/
  2. Hey. So I am planning a trip right now to Lurie Children's Hospital in Chicago, IL. (it was formally known as Children's Memorial Hospital). I have an appointment on the 19th and am going to have more appointments with that hospital once everything has been set up. But I have some questions. Has anyone heard about/been treated at this hospital? I am nervous because one of the doctors I am seeing has bad reviews on a RATEMDS.com site. I don't want to get sidetracked from that one review and just not go because I may have a better experience. They have POTS listed as one of the conditions they treat and have a program called CAMP (center for autonomic medicine). They also have someone called Dr.Babra Deal who runs a POTS clinic. Overall after seeing all of this last year I decided it was my best bet. I have never seen POTS listed on a hospitals website let alone a program that incorporates a bunch of doctors who have a focus on autonomic dysfunction. Now I have heard of Mayo and Cleveland, but I am just not so sure about that. I have many friends who have gone there and they say it is no different then the doctor they already see who has some knowledge about it. One of my friends was down there for a month and all they said to her was increase fluids, the typical medicines for dysautonomia/pots, and put her on a strict exercise program at MAYO. She continued to collapse/faint and she did not approve and there were not new things they gave her. She saw Dr.Blair Grubb too! Anyways I just need anyone's feedback that can help me move in the right direction. It is about time that I travel far to get the best care...people where I live are just not equipped to handle me. I live in Charlotte, NC. Also I have heard of the chelemiskys in Wisconsin...I know a girl who went there, I wonder if I should go there too. I am currently working with a pediatric geneticist at our local children's hospital for a workup on Mito Diseases so far nothing has came up and now she wants to send me to either Atlanta or UNC Chapel Hill for a better work up, and she is no Mito specialist and they are. I just want my care in one place!...If that is possible. Sorry for the length post. My current diagnosis: Dysautonomia Postural Orthostatic Tachycardia Syndrome (POTS) Gastroparesis Colonic Inertia Pelvic Floor Dysfunction Periodic Limb Movement Disorder Hypoglycemia P.S. = Has anyone had luck with IVIG treatment? I asked my current POTS doctor and he said he has never tried it on one of his POTS patients so I would have to find someone who knew more about that....who would know more about that? Any good autoimmune doctor? ~Thanks~
  3. Hey Guys. I know I haven't been on here in a while but I have been really sick in and out of the hospital. Anyways I have a question. As of right now I get 2 liters of lactated ringers over a 3 hour period twice a week for my POTS. It works to some extent but not as much as it used to. So my question is does anyone know of or do different infusion for POTS? I have heard of IVIG but am incredibally iffy on that it seems dangerous.. can you even get that at a outpatient infusion place? But anyways so yea any ideas or anyone do other infusions? Thanks
  4. Hey Guys. so I am being transferred tday to wake forest to be under the care of Dr.Koch? Any experiences with him? Inpatient experiences? Any help? Please no scary comments if u had a horrific experience I am already very scared considering this is my 1st hospital stay on the non pediatric side
  5. Hey Everyone. So I am currently at Duke Children's inpatient. I have a lot going on but my main thing is .... Has anyone been to duke or duke childrens and been diagnosed with mito disease? If so how? do u remember the doctor? ... Also has anyone had sucess with being at duke for GI issues? if so who helped you? .... I ask because me and my mom are at our wits end. My cardio admitted me saying all these things were gona be done now they say idk why he admitted you and idk wat all we can do. If anyone has been to duke/duke childrens or taken there children whatever it may be .... does anyone have any comments, suggestions, etc? Thanks.
  6. Hey Guys. So I know I did a post a little bit ago asking about this hospital but I thought id make a new one since I viewed the program. I wanted to share this with memebers who are under age 22 or have kids struggling with dysautonomia or any chronic illness who are under 22. This program was suggested by my pediatrican who wants me to be admitted here. I looked at it and I honestly think it is a amazing program! expecially that it is just a hospital for childrens and adolescents. It is in virginia which is bit a drive for us but well worth it if I can get the help I need. Anyways I just wanted to share this with you guys. Here is the website so if anyone is interested they can look at it: http://cumberlandhospital.com/ - They have everything from the entire overview of the chronic illness program to virtual tours of the facility .... one other really good thing they have there is a whole array of people each patient will have a pediatrican while there and then if needed they have : pediatric cardiologist, endecrinologist, gastrointerologist (if someone with a chronic illness will need these specialties during the hospitilization) also have psychologist/psychiatrist , psychotherapist, physcial therapist, occupational therapist.
  7. Hey everyone. Has anyone ever heard or been to cumberland hospital? My pediatrican wants me to go there since I am having such a difficult time with my illness. I had never heard of it until today it seems ok I am just iffy about going away somewhere to recieve treatment. I wonder if it's necessary.
  8. Thanks guys! Have you guys ever heard of the Hunter Hopkins Center ... they are where I live in Charlotte and far less expensive they deal with POTS but other stuff as well like CFS. Has anyone gone? If it is worth it I might try the hopkins center first.
  9. Hey Guys. So while I was on the internet I came upon this website and discovered a treatment program that is just for POTS that I have never heard of. I was a bit skeptical at first when reading it but then I went to the testimonials and click videos. I watched some of the videos and I couldn't believe what I was hearing. I honestly am going to talk to my mom about possibly going to try the program. If you guys want to look at it and watch the testimonial videos please visit this site: http://www.potstreatmentcenter.com/#!letters
  10. I am on 2 liters of lactated ringers over a 2-3 hour period.. it really works for me i go twice a week. I knw when I need it becuz I get very tachy, tired, and weak. But I go twice a week no matter what my cardio perscribed it tht way. Some ppl it doesnt work for it just depends each person is different.
  11. Yes. I get 2 liters of lactated ringers twice a week it works for me
  12. Hey Eveyone. So I am goig to Nationwide Children's Hospital next thrusday to the gastrointerology for my stomach issuse. My stomach doctor in charlotte says she nows I have gastropersis but never did testing.. I am also loosing more weight and the medications are not working so the referred me to there. In fact there was a 8month waiting list and they got me into them in 2 weeks which is crzy! I am just wondering if someone has gone themselves or taking their child there to the gastro part. I heard nationwides program is really good. My mom is taking me and we are hoping to get some type of relief from a doctor who will know what to do with me. I am going for a consultation then we will have to go back for a guess a full motitlity workup idk w/ever the doctor decides I know regardless though I will have to go through some type of testing. If anyone has been or knows about it please let me know. Thanks
  13. thanks I havent heard anything back yet the Nurse practioner who sees me called me but she is kinda like idk wat it is your urine came back fine 2 weeks ago and I was like well thts not normal so figure it out plus im passing white tissues in urine doctors urk me sometimes
  14. Hey. I took it to the urologist they said it looks like sediment from a kidney stone tht had been broken up. So im jus waiting to hear back
  15. Hey guys. So since I was 16 I have struggled with chronic pain right below my ribs basically where my kidney's are both sides (a burning/dullachy pain).. I have had multip urine tests and I would constantlty have blood off and on in my urine and sometimes while blood cells. My pediatrican didn't worry and I have tired to deal with back pain since.... So last night I passed what looked like a brown particle piece so I collected it and this monring when I woke up and looked back in the cup the piece I guess I had put in there and broken apart and now theres just several brown particles that look almost like dirt in my urine its really weird! So i called my urologist and am waiting to hear back I honestly didn't want to call due to jus having a urine tests done with them tht came back fine but Ive never passed a particle like that before so it worried me.... had anyone delt with anything like this? Hugs, Kayla
  16. arizona girl- do u mind if I print this out and show you her response? it sounds like what u said might be something that I would like them to check into... let me knw if ur ok with her reading ur response corina- Thanks... Yes I am very sad to say my pediatrican (who has tryley been one of the best doctors I have ever had) is moving to another practice in which I can't follow her too due to the new practice shes moving to doesn't accept young adult patients so its sad that she is leaving
  17. Hey Guys. So as ive said before I hve a rough summer but since this past visit with my pediatric cardio he is being very proactive in trying to figure out wats wrong. He did a lot for me when I saw him on wednesday and I am very pleased but one thing we didn't cover was the fact that I have been having low grade fevers (99-101) pretty consistantly (atleast one a day) for the past several weeks (about 4)... I have proof that I have had them thank god its documented in my medical records from when I was in the hospital .. every time they took my temperature it was low grade like 99 i think the highest it got in the hospital was 99.8 or something like that. I have been having some urological symptoms that I went to my urologist about but she says that everything looks fine that my bladder infection went away (I had one like 2 weeks ago) and that everything was all good and to let my pediatrician knw wat was going on with the fevers. So she called me yesterday unexpectedly but thank god for tht so I told her how concerned I was with everything tht has been going on. She called me in a antibiotic and I am set up to have my yearly physical.. she said she wants to look at everything head to toe to figrue out if she is missing something she also said she was gona email my cardiologist and see if its related to POTS... now after all of that sorry lol my question is ... is this related to pots or something else? I have tempeature dysregulation with it but its always been low like under 98.3 so for it to just randomly start for the past several weeks being 99 I can tell something isn't right. I feel flushed, hot and I knw this temperature is not right for my body. Its miserable and makes me really tired/weak (which those symptoms do go along with my pots just not the temp thing)... So anyways if anyone has experienced this or might knw if it's related pleae let me know.... One last thing is my peds cardio did say tht he was gona put me inpatient at either nationwide childrens or his hopsital duke childrens for a couple days for a workup on mitochondrial disease he feels like there is something more going on with me. PS.. I got into nationwide childrens for the motility clinic (it was a 8 month waiting list) but I got in 2 weeks on Aug the 16th... They are gona do some testing and might be doing some other treatments for my gastroperisis Super excited all my doctors have been really worried about my weight I have lost another 7lbs since may. Thanks all who took the time to read this it is much appreciated im sorry it was so long. Hugs
  18. It has been a long time and trying to get back in the swing of things but I have been in and out of the hospital since May. Recently had 2 more hospitilizations one being another two week stay and the other been 5 days just got out yesterday. My POTS and gastroperisis have just been acting up really bad. I go to see my cardio from duke childrens for my follow up this coming thursday which couldn't of come at a better time. But putting all that aside have some questions for you guys about hunter hopkins. So... has anyone been? was it helpful? anyone saw dr.black? ... I was referred to them by my pediatrician and pushed it aside. But then since ive been getting sicker I thougth I take a look at it and immediately fell in love with their step-wise approach and how they do things. But I wanted to see if anyone has had any kind of experience with them first. So if anyone knows anything, has been there, anything at all would be helpful. Thanks so much. Hope everyone is doing well. Hugs, kayla
  19. Hey Everyone. So since I have gotten my period it has been heavy, painful, and a variety of uncomforatble sympotms. The past 3 have been really bad and have flared up my pots. I went to my pediatrican last week to be put on Birth control to completely stop my period and now I am just waiting on blood work to come back so I can get on it. So in the mean time i Just re-started my period and the pain will not let up. This time (the very first time this has happened) I threw up after I ate something and having diarrhea too :/ Im really tired and in a lot of pain. I just don't want it to get really bad again to whre I will need more fluids for dehydration. Do you guys think I should go to urgent care? I have tried two 500mg of tylenol and I can't take midol or ibeprofun due to medicine interactions. Any advice? Thanks everyone.
  20. Well I don't think it has to do with young children... see my doctors office is a Adolescent Practice that does ages 11-22yrs old but they are pediatricians who deal with just teenagers. So not really a young child thing I am not really sure why she doesn't want me to... maybe she doesn't want me to scare myself? She thinks also if it keeps happening there might be something more serious thats underlying tht....she said if I don't get better then she wants me to come back in for I think she said like to find out if there is a underlying condition to wats going on thts more serious and to do testing I dnt quite remember everything.
  21. I think it be cool to have red bracelets since tht is the color for dysautonomia and them say Dysautonomia Awareness and then on the back say.. .Making it known one person at a time
  22. Ok thanks for all the replies guys So talked to the nurse today and a bit mad or frustrated at that. She talked to the doctor and my doctor said she dosen't want me pricking my fingers and cheking my blood sugar so she just wants me to watch out for it and if it doesn't get better then she wants me to come in again.... ?? I wanted to be like seriously? It just urks me why she wouldnt' want me to see what it's like when I am getting those feelings to rule out if it is low blood sugar or if it isn't . It would be nice to knw and plus I have pots and if it isn't low blood sugar then to let me cardiolgoist knw wat is going on to see if maybe there is something he would like to do about it. The symptoms I am having are uncomfortable, scary, and annoying to deal with. I don't want to have to keep on feeling like this ugh. I dnt want to test my sugars and waste money if the doc says its not necessary at this point but also i dnt wana hve to wait for weeks and then go back for another appt... I mean really, what is tht gona do? What is she planning on doing when I got back? She says that she would be concerned if it was still going on and would want to look into it furtehr to make sure it is not someting more serious? which i dont understand either. sorry this is gettin long lol. Hugs to everyone
  23. ok yea thts wat i was thinking was asking about getting a meter but she saide she didnt think that was necessary and the nurse told me if the symps get bad go to urgent care or ER I thought tht was funny becuz tht makes no sense to do tht if I dnt even knw wat my blood sugar levels are? I would like to monitor it and let them know so I can know for sure if this is wat is causing it.
  24. Hey Guys. So I went to my pediatrician yesterday to discuss some stuff and one of the things was the low blood sugar. I told her how I had been feeling and that I think it may be low blood sugar (my grandma and great grandma have hypoglycemia). I had talked to my grandma and told her how I felt and she told me it sounded like what she has. Well at the doctor yesterday they took my blood sugar and I wasnt having an episode at the time so of course the reading was fine... the doctor told me it probably is that but told me to just keep an eye on it and to let her know if things get worse or if it happens more frequently. I was sent home with some papers about it and that was that. So last night I had another episode and it was the worst I have ever had. I was sitting in the car and all of a sudden it hit me. I felt like I was on cloud 9 somewhere, tired, headache, fogginess, shakiness, lightheadedness, and felt so out of it that I could barely hold a converstaion on the phone with my sister. It was terrible I came home and tried to go to bed. Eventually I went to sleep and woke up this morning feeling weak and shaky. I had to call my doctor anyway this morning to give her answers to some questions that she had for me and so I told the nurse that I had saw her yesterday and that I had a bad episode this time with slurred speech and hearing going in and out. She told me that my doctor wasn't in today and that she would call me back if my doctor or another doctor though I should monitor my blood sugar levels. So with all that said would low blood sugar be related to pots? Does anyone else have this? If so please share any information you might have. Also with my gastroperisis I havent been able to eat that much so I am sure that is contributing to it. Thanks.
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