rmmikesell

Hi all, We would very much like to ask if anyone can recommend very a professional, knowledgeable, excellent hospital & cardiologist/electrophysiologist who routinely performs full Tilt Table Tests on ADOLESCENTS ....anywhere in the US. We live in the central US, but are willing to go to the best, no matter where in the US. Please post or email me with any suggestions or ideas. Must be hospital/specialists with tons of experience & does these routinely with excellence. P.S. Just had completely botched MRIs Monday. Failed to use the contrast (dye) for both MRIs, and only for one. Have to submit Logan to all that pain (7-9 out of 10) again as well as inject the contrast in all over again this afternoon. Ready to chew nails.....this is so very difficult & upsetting!!!!! Please pray for him today at 4:00 p.m. (Central). Love & Peace, Sadie Lady

Thank you for sharing & caring! Your suggestions & helpful ideas were truly a blessing to me. I appreciate your candor and your sharing your own experiences about getting or not getting a dx for POTS. I am very relieved to have had a tremendously excellent pediatrician appointment on Friday last week. My husband, Logan, and I went together to talk with her about our concerns. She was very responsive and has agreed that Logan must get a very professional, tailored-to-adolescent, hospital TTT as soon as possible. She has him scheduled for two MRI this afternoon, one for his brain & one for his very, very painful neck. Logan's pediatrician is also sending him to the gastro specialist, and orthopedic and is considering a 2nd opinion after seeing the MRI & TTT test results. Logan has been in terrible pain all weekend due to a nodule/lump in his upper neck (near T-1 or T-2). His neck might be severely subluxed and his chiro doesn't think it holds anymore. The MRI is also to dx or rule out chiari, but based on the symptoms list, I really don't think it fits. Hope not anyway! We do not know where all this will lead, but it finally feels like we got on the right train heading in the right direction. Who knows if it'll get derailed, but we've settled into the sleeping car for a long journey! This is quite the trip, but not by any means, an adventure. Please keep Logan in your prayers....a also pray I stay strong for him! Love & Peace, Sadie Lady

Please help me find the "official" procedures of doing an in-office or at-home Poor Man's Tilt Table Test. I already have the Lyndonville Test procedures. Really need to take this to the pediatrician in less than 4 hours from now! Any ideas or links? HELP!!! Logan's Mom P.S. So very sorry for DOUBLE POSTING!!

Good Morning, I would like to introduce myself and also would like to your request help for our son who might be experiencing symptoms of POTS, but has received the dx of OI. Sorry so long.... My 16 yr old son, Logan, seems to be having a lot of symptoms that might be considered POTS. He has received the dx of OI two weeks ago. He's been through a difficult time getting a diagnosis. Today he has another appointment with his pediatrician to enlist her help to get him either a Poor Man's or Lyndonville Tilt Table Test or a hospital version TTT. Unfortunately he was sent for a specialist opinion last week in which the nurse seemed to have no clue, whatsoever, about the protocol or proper procedures to do to get a somewhat accurate BP and HR on our son. Thus, the doctor didn't say our son had POTS, but said it's unlikely, basing his dx on the nurse's testing results. This nurse was ok with the bed's head being tilted upward (so when she left the room, I put it all the way down!), she then asked him to get up after only 5-6 minutes...I timed it. She then asked him questions and talked to him some while she took his BP & HR. She took his vitals 4 times in a row and only waited about 45 seconds, at most, between each reading. She apologized over & over for making Logan do these BPs. Our son, Logan, was doing his best to cooperate but it showed HR - 56, then after 4-5 minutes HR - 74. At home, with a automatic cuff, we tested him twice. The first time - for 10 minutes. He laid down for 10-11 minutes, with HR of 54. Upon standing, his HR immediately went to 86. After ten minutes of standing completely still, his HR went to 89. He was overheated, nauseous and dizzy. The second, at home test, was 15 minutes in length. He laid down for 10-11 minutes completely still. He slowly got up to a standing position with his arm at chest level with BP cuff already in place. He held still, not talking, not watching TV, looking straight ahead. He didn't move much at all. His starting HR was 55 and after getting up, his HR was 104. After ten minutes of standing still as possible, his HR was at 109. He was red, sweating, lots nausea, overheated, had very difficult time breathing & kept trying to yawn every 20-30 seconds. Thankfully, he didn't pass out but felt like it. On his first PMTTT at home, his after ten minutes laying down BP was 105/58, after immediately standing 112/77. After ten minutes of standing, his BP was 109/80. His pulse pressure difference started out at 47 and was down to 29 after just ten minutes. Wonder how low it would have gone after 10 more minutes? On our 16 yr old's second PMTTT at home the next day, his 10-min lay down BP was 111/57, after immediately standing up BP 105/74. After ten minutes of standing - BP 111/81. After 15 minutes standing, his BP 126/78. His starting pulse pressure was 56 this time, and at the end was 48. Not much changed. We are having a terrible time getting our doctor to interested or understand since the specialist she recommended was a complete waste of time. My husband, Logan and I are scheduled to meet with our pediatrician in 4 hours to discuss this situation. They are trying to push mental heath meds, or anti-depressants on him. He's not one bit DEPRESSED!! SYMPTOMS: Our son is active, although very tired. He's fun, friendly, busy, eats like a horse, makes up jokes a lot, is overall a happy, normal guy. He makes very good grades, his working towards his Eagle Scout rank in BS. He worked a part-time job, but with bad tension headaches that get worse as day continues, chest pain, breathing episodes (which he says are happening almost hourly now), severe acid reflux, large pupils, cold hands & feet, not good refreshed sleep, tired all the time, very sore muscles & joints, subluxations frequently, memory fog, likes salt, and lots more really. This has been getting worse, but started approx Sept 14, 2005. He had lots of chest pains one evening and was very pale, arms hanging down, and slumped over into a corner. He had mono testing three times over a period of 1-1/2 years starting one year prior to Sept 2005. He was having chest pains from then on with breathing episodes on occassion. Was given EKGs, EEGs, X-Rays, bloodwork, and over a period of one year until now, has been told he's fine, just has some acid reflux (which prilosec doesn't work well for), and must have depression. We've avoided putting him on anything at all, because I know for sure, that he's not depressed at all.... Please give any feedback, any suggestions or share input. We would appreciate help in order to help our son. He is miserable and just wants to be helped. He very, very much hopes to be able to play basketball this Fall still. He played through it, barely, last year. He loves the game! OUR NEEDS: Suggestions for electrophysiologist/cardiologist in St. Louis, Indianapolis, Chicago area who comes highly recommended because they've performed many, many ADOLESCENT Tilt Table Tests professionally. Need specialist ideas for 2nd Opinion. Prefer Indy or St. Louis.Thank you for your listening ear, care & conern.... Love & Peace, Sadie Lady (Logan's Mom)