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Everything posted by rmlyonsfamily

  1. Doctor finally called this morning. Confirmed.... Hyperadregenic (sp??) POTS. D/C'd his Metoprolol b/c she said it's actually making things worse. Started him on Carvedilol 12.5mg 2x a day for 5 days, then up to 25mg 2x a day. We see the doctor May 8th and then will be referred to Dr. Goodman - the Autonomic Neurologist at Mayo (we go to Mayo already).
  2. Ha! I didn't even notice that. It is a he - it's my husband. LOL!
  3. Mike's results are posted. Can you tell me what you think and what I need to ask about when the doctor calls? Results:1. The underlying rhythm is sinus rhythm at 78 beats per minute.2. No arrhythmias are noted during the test.3. Blood pressure and heart rate response to right and left carotid sinus pressure were within normalrange.4. Heart rate response to tilt demonstrated a hyperadrenergic response. Patient went from a heart rateof 80 beats per minute supine to approximately 110 beats per minute 10 minutes into the test.Throughout the test, the patient remained with a heart rate in the range of 120 to 130 beats per minute.5. Blood pressure response to tilt was within normal range in the early phase. Approximately 10 minutesinto the test, there was mild diastolic hypertension.6. Patient reports symptoms of arm tingling and feeling anxious with head feeling like it would explodeduring the test. Also complained of some dizziness.7. Heart rate and blood pressure response to Valsalva maneuver with both within normal range.8. Spectral analysis of heart rate variability reveals a predominant sympathetic control.9. The baroreceptor reflex sensitivity is normal. Repeated test post isoproterenol showed similar findings with hyperadrenergic heart rate response to tiltand a fairly normal blood pressure response. Impedance Cardiography Findings:Baseline supine hemodynamics:Mean heart rate 81 beats per minute.Mean systolic blood pressure 130 mmHg.Mean diastolic blood pressure 91 mmHg.Mean stroke volume 38 mL.Mean stroke index 19 mL/min2.Mean cardiac output 3.1 L/min.Mean cardiac index 1.5 L/min/m2.Mean total peripheral resistance 2683 dyn/sec/cm5.Mean total peripheral resisting index 5356 dyn/sec/m2/cm5. Mean upright hemodynamics:Mean heart rate 112 beats per minute.Mean systolic blood pressure 127 mmHg.Mean diastolic blood pressure 88 mmHg.Mean stroke volume 46 mL.Mean stroke index 23 mL/m2.Mean cardiac output 5.2 L per minute.Mean cardiac index 2.6 L/min/m2.Mean total peripheral resistance 1571 dyn/sec/cm5.Mean total peripheral resisting index 3136 dyn/sec/m2/cm5. Conclusion:1. Head-up tilt table test shows a hyperadrenergic heart rate response to tilt and some diastolichypertension. Patient reports symptoms of dizziness, tingling in her legs during the procedure.
  4. Hi All - Mike had the cardiac tilt table done today. He didn't pass out or flatline like Kaybers did a few years ago! After 40 minutes they laid him flat again and gave him something, then had him back upright. He said his heart felt like it was racing and he was shaking all over. All the tech would tell me was "we got some good data and we'll get it to his cardiologist". She's supposed to call us tomorrow. So... who knows if that means he does or does not have POTS/Dysautonomia like Kayleigh. We don't care one way or the other... just want answers!
  5. Thanks! The cardiologist actually called today to check on him and decided NOT to do the study. Said she talked with colleagues and saw enough in her office with her own testing to diagnose him with Autonomic Dysfunction. We see her again in a month and may adjust meds at that point. Kayleigh is doing great! She's in college for nursing and happy. She did have a bit of a spell back in November, but she was in clinicals, college, and working full time. Her doctor is certain it happened because her body was so fatigued!
  6. Hi I haven't posted here in a LONG time! Some of you might remember that my daughter Kayleigh has POTS - she was at Duke Medical Center most of the summer almost 3 years ago. She's doing well now on her meds and lives in Colorado now. :/ Since then, my husband got sick. 8/1/12 he had brain surgery after a Chiari Malformation and syrinx. He did well until July of 2013 when he got sick again. His cardiologist feels like he has an autonomic dysfunction like Kayleigh does. His echo is good, EKG indicates some electrical conduction issues. The neurologist did an autonomic reflex screen about 6 weeks ago (that was a tilt table) but it was negative so he moved on. Yesterday was our first cardiologist visit - she manually checked his pulse during sit to stand - he went from 50 sitting to 130+ standing within about 10 seconds! Then, about 20 seconds later, his pulse crashed to less than 40. We explained to her that this is typical - he can't do much activity without passing out AFTER the activity. She said to her, that was classic autonomic dysfunction and even started him on the Midodrine yesterday. (He's been on Metoprolol for a year after being told he was tachycardic). She scheduled him for another tilt table test - but this time not the "screen". His Mayo itinerary calls it a "Tilt Table EP study". What's the difference between the tilt table he had for the Autonomic Reflex Screen and this one, the Tilt Table EP study? They look basically the same on paper. Also - anyone an adult male with this disorder? I was always under the impression it was young women who dealt with it. I'm so confused! Thanks! Michelle
  7. She's back home and has posted a few things on DINET.
  8. No real change as of yet. They are managing her nausea, vomiting, and GI issues first and foremost. Dys. Cardiologist was to be in this morning. Keep praying.... it's a great hospital (it's where Kayleigh was last summer for 18 days), but it's quite far from home, family, friends, and their support system. We'll be there Friday for Kayleigh's next appointment. Hoping Kayla isn't still a patient there, but if she is we plan to see them.
  9. No - I posted a few days ago to update you all after her Mom texted me. She was transferred to Duke Medical Center on Thursday because she wasn't improving. I talked to her again last night - they were trying hard to control her nausea, vomiting, and GI issues; her Dysautonomia cardiologist was going to see her this morning to work out a game plan (she sees the same doctors my daughter sees at Duke).
  10. Kayla's Mom texted me a few hours ago. Kayla has made little progress at the hospital she's been in since last Tuesday, and is now being transferred to Duke Childrens this afternoon. I'm sure she'll update when she's able to, but please keep her in your prayers.
  11. jpjd59 - you are sooooooo right! It was very good to meet Kayla's Mom and talk about how we best advocate for our girls to get them the help they need when they need it. I left there feeling very refreshed!
  12. Most of you know that pots93 has been in the hospital since Tuesday. She's having a rough time and they are very frustrated with the care they are getting (or lack thereof....) and the current treatment plan while she's at that hospital. The girls have been facebook messaging and texting the last several days and Kaybers has been praying daily for them. Since it's only an hour drive to where they live, her Mom and I decided that it was time for the girls to finally meet..... face to face! They were able to talk about their disease, frustrations, worries, fears, and even just about girl stuff in the short 2 hours we were there! Us Moms enjoyed meeting too, and giving advice on how to handle our "potsies". You can read a little more and see a few pictures we took at "Life With the Lyons Family: They Finally Meet... Face to Face!". Know that Pots93 and her Mom are so VERY thankful (just as I was last year) for your support during these last few days! This forum has meant the world to them!! Michelle
  13. For us it's cardio all the way! Neuro was NO help at all!
  14. Yep - my daughter does. She takes 0.3mg Florinef each morning and 7.5mg of Midodrine 4x a day.
  15. Kayleigh and I will try hard to be there!
  16. Julie - she is on Florinef - a LOT of it! She gets 0.3mg daily. She's also on 7.5mg of Midodrine 4x a day.
  17. Julie - thank you. I should have added that we know she has Raynaud's. We've just never seen it to this extent, especially where the tip of one finger stays bright white. Typically - a pulse oxymeter isn't accurate on her. It always reads way lower than her actual 02 sats. Makes it difficult to tell when/if she's really ok or not. She doesn't drink caffeine, and no, she's not on a beta blocker b/c her heartrate runs too low as it is. They are concerned the beta blocker would drop it even more.
  18. Kayleigh is recovering well from her collapsed lung on November 29th. She went back to school last week, and so far so good. BUT... Her hands and fingers have been turning blue more often than they used to. I mean the ENTIRE hand and all the fingers.... EXCEPT the tip of her ring finger (from the last crease on up) on the left hand, and it's pure white! Very strange to see. Anyone else see anything like this?
  19. Thanks guys. I ask, because one of my other children has autoimmune heart problems (he has had Kawasaki's Disease not once, but twice!). Both times he was treated with IVIG. With all that's happened to Kayleigh (there's way more than just the dysautonomia and now a collapsed lung for icing on the cake), the doctors are all thinking there has got to be autoimmune involvement, especially since it's already in the family and typically is genetic. I've thought about asking to do a trial treatment of it and there's just not much info out there.
  20. Has anyone received IVIG treatment for dysautonomia?
  21. Took Kayleigh to our family doctor today to have a lump checked out near her incision site. While there,he repeated some labs that came back abnormal last go around. Her ANA was elevated and "speckled". He wants to repeat it to see if it's the same or changed, said that it could possibly mean systemic lupus. Yikes! Hoping to get results back soon!
  22. She's home. We follow up with the surgeon in 2 weeks. She did develop an area of swelling on her lower back out of the blue. They xrayed it before we left and didn't see anything - so we are watching it VERY closely!
  23. Update on Kayleigh She had surgery on Tuesday after the initial chest tube placement didn't work. She had some complications that landed her in the ICU for 24 hours, but she's back on the floor now. Unfortunately, so far they've not been able to get her off the vacuum seal. They've tried, but the xray a few hours later continues to show that the lung isn't inflating on it's own the way it should. Tomorrow, we'll try again. Not sure what happens from there. On the upside - she LOOKS a little better despite what her lung wants to do. She's talking in complete coherent sentences again, had her hair "fake washed" with a spray in shampoo, sat in a chair for 2 hours, and has on her own jammies today.
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