rmlyonsfamily Posted July 24, 2011 Report Share Posted July 24, 2011 It took a full blown psych eval yesterday, but we have finally proved to them that she does not have a true psychological anorexia! Hate that it took that much... but at least K has "cleared her name" so to speak!We have made progress...1) They now have the nausea 100% under control AND we have even switched from IV zofran to oral zofran. So - she has been able to eat more and more and more and is gaining weight AND her baseline heartrate has improved tremendously!2) We have FINALLY gotten them to decrease her Midodrine back down to 7.5mg and it seems to be helping! We've been doing our own little study with it... in the morning, after she's had no midodrine for at least 12 hours, her heartrate is in the 90's. After her first dose it starts to drop a bit down towards the 70's, after the 2nd dose we'd be in the 50's, and by the 4pm dose she was in the low 40's and fatigued. As her heartrate decreases during the day her BP goes way up from 80's/50's to 120s/80s. Now that she's on the 7.5 her heartrate hasn't been much below 50 (maybe an occasional 49) in the evenings and her BP seems to be stabilizing at 110/75ish and she is feeling better.3) Her multifocal and left ventricular PVCs SEEM to be improving. She still feels her spells of 30 minutes to an hour once or twice a day, but they are nowhere close to as intense as they were and they don't set off the monitor near as frequently as they were. They will repeat a 24 hour holter monitor tomorrow tomorrow, it will come off Tuesday and be read. If there is improvement and they don't deem them dangerous anymore - WE GET TO BRING HER HOME TUESDAY OR WEDNESDAY SURGERY FREE!!!4) They are looking more into her GI issues to see where this plays a role, but it won't hold her back from going home. They did draw labs today to check for Celiac.So glad that we have this forum to come to for resources!!! Thank you all!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 24, 2011 Report Share Posted July 24, 2011 That's great that adjusting the medicine is really helping the overall situation! And very glad that her psych evaluation proved where the issues don't originate! I know you all are feeling so relieved, and thanks for updating us. Quote Link to comment Share on other sites More sharing options...
Brye Posted July 24, 2011 Report Share Posted July 24, 2011 So glad she's getting a bit better!! I just re-started my midodrine to improve my BP and have noticed my HR dropping into the 30's to 40's again. It does improve my BP though. I have a horrible time with scalp itching though so if you notice her scratching her head you'll know why! I had to choose between being able to stand and living with an itchy scalp and standing won out!!I've had POTS over 3 years now and still am dependant on zofran at times. You must be so relieved they've ruled out any psych causes, how stressful, especially since you knew that wasn't the problem. Way to stick to it!!!! Hope the improvements continue and she can go home soon!!Brye Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 24, 2011 Report Share Posted July 24, 2011 I am so happy for you both! Now you can finally breathe I wish some doctors were as good at 'ruling in' as they are at 'ruling out' LOL. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 24, 2011 Author Report Share Posted July 24, 2011 Sue - they've made a few med changes. The first hospital we were at had her meds a bit jacked up and added one that my husband and I questioned to begin with. When we got here - that's the first one they d/c'd! The Midodrine is the last med that I've been questioning the dosage on. Quote Link to comment Share on other sites More sharing options...
lieze Posted July 24, 2011 Report Share Posted July 24, 2011 So happy to hear the good news. Quote Link to comment Share on other sites More sharing options...
kclynn Posted July 24, 2011 Report Share Posted July 24, 2011 Brye and K's mom, So glad to hear K is improving. You are such a wonderful Mom! I think my son was unique in that Dr. A stuck him on large dose of Midodrine and Florinef and he has done well without making any adjustments. He does have nausea still, though overall it is way better, but still resorts to the Zofran occasionally. Brye, My son had horrible itchy scalp but chose to stick it out to see if the Midodrine would help. He is so glad he did. He is not one to talk a lot about symptoms but the progression was awful itchy scalp for 2 to 3 weeks, then it was still itchy but more tolerable and now it is gone and has been for awhile. That is about 3 months.Last winter he couldn't stand up, practically had to carry him to the bathroom (my husband would go in with him), spent many nights sleeping on the couch because we couldn't get him upstairs, missed his entire freshman year. Today I am waiting for him to get home from Church camp and I have heard from him a couple times that he has just had an amazing time and was able to keep up and swim and go tubing and boating! I wouldn't have believed it possible so hang in there! Doing my best to live for today and not worry about tomorrow. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 24, 2011 Report Share Posted July 24, 2011 I wanted to share with you about a young (20's) woman I met on a different POTs support group. She was passing out a lot and had very low heart rate. She saw many, many Drs here in nyc. She was almsot going to get a pacemaker, she had an ablation right before (she was having very low HR like your Kayleigh) After the ablation her HR is now perfect! She feels much better.Another thing, this young woman and I both had japanese hair straightening in the same salon. We both started having "POTs" 4 weeks after our hair process. Could be strange coincidence. But weird, right.Good luck to Kayleigh! I am so glad you keep us up on how she is. So happy she's going home! Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 25, 2011 Report Share Posted July 25, 2011 Wow sounds like environmental toxins were both of your triggers. I think they use formaldehyde or some other toxic chemical in those treatments. I believe for many of us it's a toxic that triggers all of this in us, but not many want to look into this much here. I wanted to share with you about a young (20's) woman I met on a different POTs support group. She was passing out a lot and had very low heart rate. She saw many, many Drs here in nyc. She was almsot going to get a pacemaker, she had an ablation right before (she was having very low HR like your Kayleigh) After the ablation her HR is now perfect! She feels much better.Another thing, this young woman and I both had japanese hair straightening in the same salon. We both started having "POTs" 4 weeks after our hair process. Could be strange coincidence. But weird, right.Good luck to Kayleigh! I am so glad you keep us up on how she is. So happy she's going home! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 25, 2011 Report Share Posted July 25, 2011 I am so happy to hear she finally got the care she needed and that she is improving.You are such a wonderful mother and advocate. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted July 25, 2011 Report Share Posted July 25, 2011 One of the side effects of Midodrine is Bradycardia. (Helps me a lot, has reduced my heartrate from 120 to 80)"Bradycardia: Bradycardia may occur after midodrine administration, primarily due to vagal reflex. Caution should be exercised when midodrine is used concomitantly with cardiac glycosides (such as digitalis), psychopharmacologic agents, beta blockers or other agents which directly or indirectly reduce heart rate. Patients who experience bradycardia should be told to report immediately any signs or symptoms suggesting bradycardia (pulse slowing, increased dizziness, syncope, cardiac awareness) and to take no more drug until they have consulted with the prescribing physician. "http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20%28General%20Monographs-%20A%29/AMATINE.htmlJust something to keep in mind.Sara Quote Link to comment Share on other sites More sharing options...
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