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zelda

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About zelda

  • Birthday 11/22/1962

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    Indiana

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  1. I hope they will do one so we know for sure what is going on.
  2. My daughter is seeing a Rheumatologist next Thursday and a Neurologist in 10 days. Do either of them do TTT or does it have to be a cardiologist? What exactly is a serum Catecholemine draw during tilt?
  3. I am still feeling unsure. The Dr. yesterday said sinus tachycardia, POTS thats the new name for it (since it happens when she changes position). He says to switch from florinef to metoprolol succ er. He didn't see need for TTT since we already know heart rate goes up when she stands. Try the beta blocker and come back in 6 weeks...
  4. Thank you so much! I'll let you know how it goes.
  5. My daughter is going to see a local "Cardiac Electro Physiologist" tomorrow. Just for a second opinion and to find someone locally to work with. If anyone has ideas about questions to ask, I would really appreciate it.
  6. Thank you all so much, for your knowledgable and encouraging responses. I am going to look into some of this.
  7. Thank you for your reply. Do I just call the offices and ask for a copy of her records or lab results? She has had alot of illness starting at age 6. Lots of ear, sinus, upper respiratory, 3 x's Pneumonia, and she had Mono in grade 2 ,It was always something and lots of antibiotics. I checked the Pharmacy records and 2 years ago she took 12 antibiotics, last year she took 8. She had the same Pediatrician since birth. I would say it seems like she has something going on with her immune system. Why is she such a cootie magnet? Always the same answer. "She has a _____infection." Another stronger antibiotic. When the stomach symptoms started, I think she thought it was all in her head or made up. I would call and she would say its a virus give it a few days. I would tell her she also had extreme fatigue, her lips were the same color as her face and she was sleeping 16 hours at a stretch. She said to have her go out in the sunshine and walk around in the yard.....? Finally she had such severe pain I took her to ER they referred to GI who looked at her for 5 min. Her pale skin and red hair along with her history led her to think Celiac. She got right on it and in fact it was. I thought that was the cause of everything and was greatly relieved thinking with the new Gluten-free diet all would be well. All is not well and she is getting worse and weaker. The celiac counts are going down and a pill cam last Thursday showed an improvement in her stomach from celiac type damage. I called the office asking about possible pots connection and I'm not sure they saw a connection, they referred her to a Rheumatologist to see if she has CFS, They said a cardiologist oversees POTS and said maybe she should see a Phsycologist who deals with chronic illness. She does have Hypermobile joints. 2 weeks ago she got hives from ice on her knee, her hips pop and crack, and she has had joint pain in her fingers, toes and other joints for years. I know this is a lot of information, but I am trying to figure out what to do next. Any feedback or suggestions would be greatly appreciated.
  8. There is no one listed in Indiana and I saw another post several days or a week ago asking about Southern IN or Northern KY it has gotten no responses.
  9. I am in Indiana and I am not sure how I find someone in the area who specializes in POTS or Dysautonomia. Any suggestions?
  10. I do have a call in to another Cardiologist. I too feel a second opinion is needed. The waiting and wondering and worry is hard to deal with.
  11. Thank you for your response Pam. I havn't met any teenager with this level of fatigue. I do not believe they are all depressed and fatigued. I am also wondering if this is an accurate diagnosis. I called the office back the following day because they didn't give me anything when I left. No receipt of visit or anything with diagnosis. I asked for a letter for school to add to her file with Nurse with description of what pots is. I got the letter in the mail yesterday and it says. "In this condition, the individual has symptoms of low blood pressure such as dizziness or lightheadedness upon changing posture or upon standing up. These symptons can also be accompanied by a perception of increased heart rate. The symptons are typically not of a sustained nature and resolve within a few minutes." Is this an accurate description of what pots is?
  12. My daughter has been having extreme fatigue since March. She started having severe stomach pain off and on in April and she ended up seeing a GI doctor in May. After having blood work and an endoscopy done she was diagnosed with Celiac disease and started on the gluten free diet the first week of May. I thought that would get rid of the fatigue and she would get better. The first week of June she Injured her knee (completely severed her ACL and tore her meniscus), and the first of July she had surgery where they took hamstring to make a new ACL and stitched the meniscus. She continued to be really weak and not feel well. School started in August and she still was having nausea, stomach pain, and was so weak. She could sleep and sleep. She got pleurisy the second week of school and she was having chest pain, back pain, and would feel lightheaded and dizzy when she would stand. She has also had joint pain for quite awhile. Labor day weekend she pointed how much her heart was racing when she stood up. We went to the pediatrician and got a referral to a pediatric cardiologist. He checked her over and listened to her heart laying down and sitting up but never standing up. He did an EKG and whatever the test is where they take pictures of your heart with an ultra sound machine. He said she has POTS and prescribed florinef and said to drink 40 ounces of liquid a day and to see him in 4 months. When I asked about the extreme fatigue, he said,"All teenagers are fatigued and all teenagers are depressed, even mine. She should get back to school." I am wondering if POTS is able to be diagnosed without a tilt table test. She is still weak and fatigued, has nausea and stomach pain, and a headache when standing. Any answers would be greatly appreciated.
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