btmartin97

I'm just wondering because I barged in here Saturday with my daughter's symptoms, but I never properly introduced myself or posted what we're dealing with. I apologize. I was scared to death at the time (& still nervous). I just want to make sure I didn't breach any understood etiquette. Thanks.

I'm an absolute wreck this morning. She's nervous too. I'm just trying to breath and praying a lot. For those who don't know, my 14 y/o daughter has MCAD & POTS. She had the worst "flare" she's ever had this past Saturday. Her hr jumped to 240 and her bp dropped to 52/27. We spent the weekend in the hospital. She stabilized pretty quick but it exhausted her. I'm so anxious for her today. Please pray. Thanks, love, & hugs to everyone dealing with this. God bless you all. ~Tonya

Excellent! Thank you so much..this helps a lot.

Lord, I completely agree about checking the meds. The problem has been that we're seeing several different docs who have prescribed different meds. How I would LOVE to gather them all in the same room!! But now that she's in with an Autoimmune doc, hopefully we can get things straightened out. I'm praying. I appreciate everyone's input. I'm taking notes & writing down questions. I just wish there was more of me to go around..

About some of the terms mentioned? What does low-flow and high-flow mean?

Newbie here. I'm trying to learn all I can but some of the terms I'm reading, I don't understand. Can y'all post some of the common lingo that is used please? Thanks!!

She did get IV fluids in the ER, so that very well could have done the trick. Interestingly, (20/20 hindsight) this morning while she was on the EKG, she said the really high heart rate wasn't going to happen. She went on to explain that prior to that episode, she felt like she was in a daze or a fog...not like her occasional cognitive "fog" but more like in a tunnel. This was while she was still horizontal, before she stood up. So there WAS a warning! That is a relief to me. My worry has been sending her to school, etc. So OI is a blanket term, basically and POTS is more definitive. That makes sense. It almost sounds like OI is pre-diagnosis & POTS is post, or could be anyway. Anyway, the docs are saying this really looks like POTS. Ok, but what type? Thanks for all the support & info...you guys are awesome!!

Thanks so much for your replies! She takes Allegra D for the MCAD. Prior to adding the "D", she had horrible nausea from drainage. Since she's been on it (long before any POTS symptoms), she rarely has a tummyache. So I'm reluctant to change it, but if we have to... The Zantac was added after her heart rate was really climbing..in an effort to stabilize..but it didn't work, unfortunately. Doc is putting her on an (heart) event monitor because she seems to have stabilzed now. Thank God! Also, she should be starting her period any minute now..so could it be possible that the virus plus pms just caused a system overload? It's so odd..literally almost like a volcano erupting..a build up, explosion, and now she feels better. Weak, tired, but definitely better. Such a mystery.

Thank you, Noreen! I appreciate your prayers very much. My continued prayer is for her healing & the docs to have discernment..and for me to keep my redheaded Irish temper in check! Lol I'm really hoping we'll get some answers with this new Autoimmune doc. Thanks so much for your support & prayers.

Hello. New here. My daughter (14 y/o) has MCAD & OI at the least but it's looking more & more like POTS (actually, can someone explain the difference between POTS & OI?). After 2 yrs, we finally found an autoimmune specialist who will see her. Saw him Thursday & he ordered a whole array of tests. Anyway, we've battled tachycardia mostly. Her blood pressure typically drops some but not hugely (until yesterday). She doesn't really have much tingling in her hands & feet. There have been some scary heart rates but yesterday was the worst: 92hr…90/62bp lying 143hr…78/57bp sitting !!!! 240hr…54/27bp standing 2 minutes!!!!! This scared the crap out of me! Got her stabilized enough to go to ER and she had labs drawn (slightly askew) & an MRI (normal). Has anyone ever had this happen? We're still in the hospital, hoping to catch the tachycardia on an EKG (wants to rule out an electrical conduction issue). Obviously, I'm trying to figure out why this happened. Towards the end of last week she had a little bug (sore throat, etc) and her tachycardia (and overall feeling) has progressively worsened. She rarely ever catches viruses but when she does, they hit her hard. I would appreciate any advice or info y'all can share. Things have been pretty manageable up to this point but now, who knows? She needs to just be a kid and I'm afraid to let her out of my sight. Oh! Meds: Allegra D - 1 tab BID Florinef - 0.1 mg - 2 tabs BID Midodrine - 5mg - 1 tab TID Zantac - 150 mg - 2 tabs BID, I just restarted her on this the night before the 240 hr, thinking maybe it's a Mast Cell issue. We have so many unanswered questions. What type of POTS? Did the MCAD cause her POTS? Why have her overall symptoms gradually worsened over the past 2 yrs, even with the meds? Is this episode what's referred to as a POTS "flare"? Or a MCAD flare that culminated in this event (seems to me more POTS than MCAD because no hives or anaphylaxis)? What testing should be done while we're in the hospital? Please, Please, please help! Thank you in advance. God bless you all Hugs, Tonya