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surfgirl14

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About surfgirl14

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    Advanced Member
  • Birthday 05/29/1993

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  • Gender
    Female
  • Location
    charotte , North Carolina

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    kayla kaiser

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  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
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