luvmykidz

Just another thing to consider... An Paramedic was talking to our group (bleeding disorder educational weekend) about the importance of medic bracelets. He also told us about adding a contact to our cell phones under " ICE " which stands for "In Case of Emergency". Most medics know to look on a cell phone if for some reason they cant locate a bracelet , etc. Under " ICE " you list your full name as "my name is " and then Dr.'s numbers and emergency contact number. On our cell phone there is also and area for notes so that pulls up as well. We list the condition. Its just another back up plan.

I agree with what another person posted about "no news is good news" is NOT true. When my son was five, he fell and scrapped his knee. Within a week his injury looked horrible so I took him in. They swabbed it and put him on oral antibiotics and told me that they would call with results. I never heard from them so I too believed in the No news is good News. On day five on antibiotics I had to call because his infections still looked bad. When I called, I was put on hold... they couldnt find his labs and said they would call back. Somehow- it was over looked, misplaced who knows but I got a phone call back about 20 min later telling me that they were so sorry , someone should have called take him immediately to ER he tested positive for MRSA. So... always follow up even if they dont call. Its there duty to at least let you know even if its good news. I learned my lesson at the expense of my son.

Well, at the advise of some here and family I went and pick both my records up and my daughters (she is 15). I am still in the thick of my issues and will not have total answers until after my heart monitor that I will be wearing for 3 weeks. All that is on my records that was a red flag was lower blood pressure, and diostolic disfunction in both the left and right ventricles per the echogardiogram. So until I finish all my tests I dont really know whats going on. Today the heat made me so sick. I was fine one minute the next sweat started on my upper lip and head then I was drenched, I was dizzy, and so tired. I ended up sleeping for 5 hours (not normal at all for me). I am so tired of this. But more importantly.. As for my daughter- her symptoms have been dizzy spells. It seems worse when taking a shower- which causes her to get out and sit on the floor. She does have her cardiologist follow up this next week. I should say that at her last appt a bit over a year ago they were looking for a heart murmur. They said something about the vegus vein but that it was not dangerous (not big deal) didnt say much more than she should drink a gatorade a day. So that said I didnt put her symptoms together with what he said. I picked up her medical records yesterday and this is what it said. H Her echocardiogram and tests said Heart murmur : lower left sternal border Quality : vibratory Grade 1/6 Duration: new Modifying Factors: activity Impression Functional Heart Murmur benign vasovagal near syncope So.... this is most likely why she passed out while on a field trip a few months ago ( hit her head on an oxygen tank ended up in ER to check for concussion - she didnt have one). Does anyone here know much about vasovagal near syncope? Do people here with vasovagal syncope have murmurs too? The only thing I remember other than the drink gatorade was that she would outgrow this.. but it could come back with aging? Does anyone here with this have other family members with it too? I still do not understand why I was not educated more- I would have taken her back in to see him had I known more details (after she passed out). Last year she had an awesome PE teacher who trusted if she was dizzy she would sit out. Its probably due to the fact she loves sports and works hard. This next year she has a different PE teacher. Do those with teens/kids have the Dr. fill anything out for this disorder to protect their childs grades? Gaterade has not helped her.. what other home remedy ideas/ natural foods etc have you tried and worked for you? I know salt helps but is there too much salt one can take in? Will it backfire later in life having so much salt? I only want what is best for her.. and I am sad , sooo sad I didnt not know more until now. I think her cardio and I will be talking a bit more next week about this as well. I wish he had educated more instead of saying "no big deal, she just needs gatorade". Sadly, I remember a time she was dizzy and I said , kiddo, the Dr didnt find anything wrong.. get up , push through it and you will be fine. I really feel like a pretty bad parent. We have other med issues in the house already and well... I have always tried to not let them dictate us, I dont think I validated her symptoms as much as I should have. I wish they explained more that she did have something wrong and while it is not life threatening, its a true issue. I did not know this. so if you have some time to post experiences, things that helped... etc. I will be sharing your posts with her as I want her to feel that she is not alone.

Thanks for the information Firewalker and Dana. I have not gone to an Endo although my Hematologist does order the test (forgot offhand what its called) to see my average blood sugar every 6 months. My mother and all her siblings had/have adult onset diabetes. That said, I did have some tests done recently to check levels and they always do routine ANA etc.. I am not sure if that is what you are talking about? I too pray its something simple and not expensive to treat or has an easy fix. We are actually canceling a vacation trip because I cant get through the day without dizziness or dropping things etc. and the heat is not helping at all. Pretty sad when it comes down to that and breaking kids hearts .

I have heard about the syphilis test before.. its the gold standard in testing for other disorders. Here is a little info Hope this eases your mind on what the Dr. was thinking http://www.dcmsonline.org/jax-medicine/200...00/antiphos.htm It has been known for years that patients with connective tissue disease may sometimes have a biologic false positive syphilis test. Patients with a biologic false positive test for syphilis are know to be at risk for abnormal thromboses and subsequently have been found to have antibodies to phospholipids

Sue1234, Diane, Now what and thankful.... thank you so much for your support. When you are in the middle of piecing a puzzle together it gets a bit overwhelming. Update: With my daughter she is being reevaluated with the cardiologist and they are now saying Neruocardiogenic Syncope. Update with me: Numerous tests this week. My thyroid and B12 are normal. MRA- normal , Tilt test started out hard as my veins kept collapsing (they said that is usually seen with those having POTS or Syncope- something to do with the nervous system) but my tilt test was came out fine. Cardiologist said that he expected based on my BP/ Heart rate seen in Neuro and Cardio and the preping for test that it would be abnormal. He said he is not ruling it out yet. My echocardiogram - the bubble test was normal (looking for hole I think). However the heart muscle itself is doing something strange that he cant put his finger on..warranting other tests. When your heart beats the muscle squeezes then relaxes then of course repeats. My heart muscle is not relaxing all the way. I will wear a heart monitor for 3 weeks. My blood pressure is all over the place (mainly low) todays was 112/58 manual. Mondays was 98/62manual. Tilt test the high was 123/78 taken by machine. I cant help but wonder now...about a year ago I had surgery which prompted me to have factor (humate P) every 12 hours for 5 days. There is an elevated risk for infections to cross through blood product among other things. I cant help to wonder if somehow I got an infection passed and maybe thats what is going on~ this was a rough year of sickness (for everyone I know)

Where to start... maybe with my daughter. About two years ago my daughters(age 15 now) Dr. heard a murmur and sent her to a ped Cardiologist. She has been having issues with rapid heart rate, dizzy spells and stomach aches. Long story short we found out through and Echo that she had an innocent heart murmur but that her vegus (spelling? ) vein was pinched when she lays down and when she gets up all her blood rushes back through her causing her to be dizzy. Her Dr. never named what it was called but said it was something she would "outgrow" and might come back as she is elderly. His prescription : drink a Gatorade a day and get salt in her. She still battles this (had to drop basketball due to rapid heart rate, almost passing out, heat exhastion etc., she has passed out once which prompted a trip to the Dr. because he hit her head on an oxygen tank of all things ) to this day and we really have no answers but she does know what to avoid. As for me.. First I should say I have menieres (mainly have issues with hearing loss- replaced by low tones and extreme vertigo-throwing up) however as of now they have found no nerve damage and while its disabling at times I have learned to live with it and still work- live- and push through spells. I do not take the diuretics that they usually have someone take with meneires- I am not a big "medication" person. I also have Von Willebrands and only require factor when I have surgery or have an extreme accident that Stimate will not work for. My son has Severe Von willebrands and required factor more frequently. I know it sounds like my hands are full but I still consider myself healthy and my son healthy, he just has big "mountains" to climb every once and a while... Over the last year I have been having some problems that have become more frequent in nature and quite scary...making life stand still for me. I thought it had something to do with my ear(s) so I ignored it in the beginning ( I refuse to have a condition dictate my life) but it became harder for me to handle. My Ent sent me to a Neurologist this last Wednesday (all within the University) thinking I had migraine problems. The Neurologist looked me over took my blood pressure and heart rate laying down, sitting then standing and my blood pressure dropped while my heart rate sped up, hands were sweaty and he said based on my numbers I should have been passing out (I felt "off" and everything echoed but I never passed out). So he sent me to Cardiology for a work up of POTS. The Cardiologist I saw yesterday did the same test but my numbers did not do the same thing as at Neuro. however a "blurb" as he called it came up on the EKG. So, I am being scheduled for a Tilt test and and echocardiogram with IV looking for some atrial something or other defect. I dont know what is going on with me but I am tired of feeling like I am spacey. My symptoms are; the biggest is dizziness to the point where others think I am drunk - luckily this has been seen by my kiddo's doctors who know me and know its not normal for me and they are the ones that talked me into seeing my ENT ( my vertigo is not the same as the dizziness - it feels entirely different). I have fallen down 4 times in the last month and its not due to vertigo. I always feel like I am in a tunnel, everything feels so slow. My memory is not the same, I forget where I park, what I say , simple instructions, etc. My blood pressure is low- it used to be borderline high , I get worse in the heat- to the point where I even will have fevers that I can break by taking a cold shower. The heat makes me dizzy body feels like jello and my ankles and fingers swell up. Elevations changes (mainly coming down) make my symtoms worse (though this could be the meneires). If I lie down my brain starts to clear up and I dont feel like I am in a fog, soon as I rise I am "drunk" like. Its horrible. I cant function... and for me its frusterating as I am a fighter. I have always taught my son even that he may have a medical condition however that condition does not own him. This is how I feel about myself too, and whatever is happening is owning me. I am worried, scared and feel helpless as I cant figure out how to " correct " this although I do not know what "this" is. I may or may not have POTS..heck it may not even be anything to do with Cardio.. maybe its just my ears getting worse... but I am here, in your forum for right now until I know what is going on. I feel like I need support as I am not sharing what is going on with my family other than my husband and of course my kids know as they see first hand what is going on. I do not want my other family , friends worrying over something that may not be. Does that make sense? It just feels lonely not having anyone to really talk to about it. I was not really afraid until yesterday's cardio appt when he said he heard a blurb.. My mother died at age 58 from Congestive Heart failure.. Her father died at age 40 from a massive heart attack ( this was in the 60's so technology was not as it is now so no one really has information as to why he had a heart attack)... So now I sit here adding more stress than I probably need and may not be warranted because I now have fear about family history- something I honestly really never sat around and thought about. (sorry.. for rambling on and on.. but I guess getting all my tears out and worry is what I best for me right now). Thank you if you read this far.