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About surfgirl14

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    Advanced Member
  • Birthday 05/29/1993

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    charotte , North Carolina

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    kayla kaiser

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  1. 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
  2. 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
  3. 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 te
  4. 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
  5. 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
  6. 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.
  7. 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
  8. I have had burning pain before in my stomach, never found out what it was from but it just subsides on it's own. Hope it gets better. I take zofran for nausea and have nausea patches tool. Maybe try some pepto for your stomach it might coat your stomach so it will sooth it.
  9. Thanks everyone And I will let you guys know how it goes pupplove
  10. yea funny you say that because I am extra sensitive to medicines... you just reminded me to tell my doc tht .. thanks lol
  11. Hey Guys. So I have a couple questions but also wanted to give you guys an update on things. So I am out of the hospital I got out the 28th of May but haven't had a chance to get on in a while... hope everyone is well So I was in the hospital for about 2week after the first week i got transferred to duke childrens to get better care and to be under the supervision of my cardiologist. Anyways things are slowely getting better but it's gona take a little while before I can get my stomach issues taken care of. I am waiting to get into nationwide childrens hospital in ohio but oviously as you gu
  12. Hey guys. So I don't really know how to explain this so i'll try to explain it to the best of my ability. I keep on having this really weird feeling in my head kinda like a brain fog, out of body, not feeling fully there. ugh its really hard to explain to people so I am not sure how to describe it. During the epidosdes I also get shaky and feel just so out of it , and that it's hard to have a conversation. Also I feel tired during the episodes. One thought I had was could it be problems with blood sugar? ex. diabeties, hypoglycemia etc? I have thought about purchasing a blood sugar monitor a
  13. It was the best feeling! I loved being able to meet kayleigh and you.
  14. Thak you all. I appreciate the all replies, responses, etc. TPN really hasn't been bad at all I am getting blood sugar levels checked every 6 hrs and blood work I got done at 4am this morning. I haven't heard anything back yet about the bloood workd or sugar leveles hoping they were just good. They have gotten a diatecian to consult after she overheard that I was vomitting she came into my room and started to find out what was going on. So now her and my doctor have been working on the right amount of TPN to give me and diet stuff. My heart rate did change though last night like I have never s
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