anna

Hi all, This Q. is for you guys that are EDSers as well. My kids cardiologist has suggested we try Fludrocortisone and slow release salt tabs for their POTS symptoms. The DR. assured us that this stuff was totally safe and so on, but when I picked up the script I found, on the do not use if section, a bit about not to use if you have asprin sensetivity or if you have gut problems. Well the thing is both my kids are unable to take Ibruphen (sp) or such like, as it causes gut pain and bleeding problems (EDS related) and both kids had been diagnosed with infantile colits when younger. We have a long history of ulcers in myself and my EDS family members. I am not sure what to do about this med, I can not get hold of the cardiologist and he does not know anything about EDS anyway. So I wander if any of you EDSers use this med without problems. Anna

HI Radha, I am not sure if this is relevant, but my daughter (EDS) has some problems with not being able to swollow sometimes. It tends to be worse when her ANS dysfunction is bad she finds she needs to stretch her neck around. We have been told that this might be due to the cartalige in her esopheguse(sp sorry!) sliping! seems to make sence though as moving her throat around helps. Anna

Hi Flop, Not sure if this is true but when I asked our local Boot's pharmasist whether my daughter could take her Cinnarizine Stugeron (that she takes for vertigo) with some hayfever meds Cetirizine as she was suffering from high pollen count, anyway Pham told me that they would infact cancel each other out!! could that happen. So she said not much point bothering but no harm if we wanted to try. Anna

I take a Calcium antagonist (Amiodipine) and a Angiotensin 11 Antagonists (Valsarten) to help reduce my bp and stop my symptoms of angina. My BP is still all over the place but it has helped reduce the angina pains and seems to have helped normalized my arithmia, my HR will still increase, when stood up or sat still but not to the extent that it used to. I was put on these as I could not tolarate Beta blockers at all but my BP was so high I was in big danger of a heart attack. I also have EDS and the DR. was a little concerned that if my BP stayed so high I would blow some major blood vessel as I was blowing blood vessels in my eyes all the time. I can not get my head around how it all works but I have been on thsese meds for around 6yrs now, still POTSy but not as much as before meds. Anna

Hello Sandra, Sorry you are having a bad spot at the moment, I agree with you that it is so good to find other folk that know how you feel and do not pass jugment on you, THANKS guys. I noticed you are on small dose asprin for your POTS, this may NOT be of relevance but myself and my kids have EDS and some ANS dysfunction I have found I can not tolarate any asprin at all or other non steroidal anti-inflamateries(sp) it leads to more bleeding issuese that come along with my EDS I wonder if this might have anything to do with the swelling you have on your ankle. I know pooling is quite the norm with POTS and I know that some of us EDSers get some odd bleeding stuff going on, so i thought i would mention it. Have you taken a look at www.ehlers-danlos.org forum might find some useful posts on there too. Take care, Anna

Hi Guys, Can any of you point me in the direction (web linked if poss) of the clinical criteria for POTS? Two of my kids had much the same experiance as mentioned here, but paediatric cardiologist said tt was inconclusive as bp did not drop! Their heart rate did go up from 50 to 60 bpm to 100 to 110 when upright, son was sick and daughter had pre-faint. anna

Hi Tessa, I agree with others about seeing Dr. so glad you will be going Tuesday, meanwhile you might try getting your husband to try some deep tissuse massage on your legs. I do this for my daughter when she has big bp drops seems to stop her passing out too. It is a bit of a fine art you might want to look up some massage techniques or speak to a good massuse. hope you get things sorted out soon. Anna

Hello Michele the web site in Q. is: www.ehlers-danlos.org hope it might be of use. anna

I also have some idea of how you fell, myself and my kids get the pre-fainting thing and that is horrid enough, but I think we are lucky as we can stop what we are doing and do stuff to avert a true faint. Cardiactec- while on an EDS site I fund some info on a new possible therory as to why us EDSers have ANS dysfunction. Some Dr.s' believe EDSers have, ongoing pressure on the nerves in the neck leading to ANS part of the brain thus some how causing the dysfunction. Some medic's over here in the UK are trying to put together a research programe to look into this possibility. With this in mind it may lead some new line in meds or something. Anna

Thanks guys, I thought that the sort of reaction to standing still, that my kids had was not really normal. I will ask for a read out and see what the Dr.'s report has to say!! Anna

Hello my dear wise people, I have a number of Q for you regarding some odd goings on at my kids tilt test. Firstly one of my boys had a Tilt this morning, he had all the leads put on and a canular put in then was made to relax for 15 mins to counter any odd readings from that procedeur but cardio tech's talked to him and me, then son was stood up where he managed to say sort of still for a short while about 10 mins then he just keeped pumping his leg muscles and tummy, something he always does when stood up too long! anyway after about 20 mins he got more dizzy and through up. So Dr. called an end to test and explained as the test did not go on for the full 50 mins thus it was inconclusive! The Dr. was behind the tilt table all the time of the test writting up notes, so did not see how my son looked at any time during the test. I was lucky to be able to veiw the moniter sons BP did not go down much but his HR went from 50-60 flat to 90-100 when upright while still but dropped to 70-80 when he figgeted (sp). as they took the table down I commented on how odd my sons arms and legs looked, from elbows down son was very red, from elbows up he was white, I asked Dr. about this and he said it was very odd and he was not sure why this had happened!! When son lying down for a while he got a nice even colour back, no comment from Dr. Then Daughters turn I was made to leave as Dr. really wanted to follow proper protacal!! she managed about 15 mins before they called the test off because my daughter could not stand it any longer, she came over very hot, toungue and side of face went numb, arms got very twitchy, legs felt very odd, she then felt heart in neck and got very brethless. I was called in and Dr. said sorry but test was also in conclusive, as it showed no major drops in BP and no major tachy. as I was not in the room I will have no idea of the readings but I can bet her HR was quit a bit higher standing than when lying, as it is when ever I have checked it. Daughter and son both very tierd after TT. I suppose I want to ask you folks what you think about my kids reaction to the tilt test does it sound in any way a POTS type responce?? Anna

Hi Morgan, Sorry I did not get back to you sooner. 2 of my kids had their HUT test today and we had to stop over to get to appointment on time. Anyway back to the subject in question, I think you should continue with the Endo., as you have looked into MEN you probably know better than your Endo. whether this condition would be worth looking into. I remember reading that some people with MEN do not know they have this until an other family member is found to have it and they are tested! Would you be able to see a genetisist they might be of help here. Take care Anna

Can I ask is your sons hyperparathiriodisum primary? and does he have some of the symptoms you have? Anna

Hi Morgan, Has your Endo. or other Dr.'s ever mentioned MEN1 to you? My GP is thinking along these lines with our family, as we have some very odd things going on. Anyway I hope you find a 'new wind' soon to help you prove to these medic's that it is not all in your mind. It's an awful place to be, this place that we actualy want to have some thing show up in these tests just so we can say I told you so. I got truly fed up of haveing to tell my daughters paed. that she is not attention seeking she is really ill and it sadly felt good when a new paed. took over and straight away said something was wrong with our daughter so sad we have to feel like this.

It's good to scream sometimes. All my 3 children have some form of autonomic dysfunction it came with thier EDS packedge! which they inherited from myself, It's how things happened. I had no idea about EDS and ANS dysfunction till after all 3 were born so could have done anything about it anyway. I try hard to keep well'ish so I can help my kids when needed, in a way we are best placed to help our kids because we have a first hand idea how and what they are feeling, I'am always saddend by families that have no empaphy for their poorly kids, or other poorly relatives. Hope you find lots of new enegy to help your daughter achieve what she wishes. Take care, Anna

Thanks dionna, I wonder if any one else has had this happen! or know what it means.

Hi all, I wonder if any of you might know what is a low BP in a child (well 11 year old and 15year old) my 11 year old son has a bp of 85/60 when he starts to feel bad and his sister jumps around all over the place but tends to cause trouble at around 90/60. One other thing is, that while my daughter had an exercise ECG when she cooled down her BP had a lower number on top than on the bottom the technician said the monitor must have gone wrong as this was impossible but then monitor went back to 80/50 and so on. Sorry to sound so stupid but is it impossible to have such a reading!? Anna

One of my boys always has vivid dreams infact he hates to go to sleep because he knows he will dream so much, he often wakes up with his heart racing, not sure if this is because he is sceard witless or if his fast HR rate makes him dream so. Anna

Hi Guys, We are EDS3 kids and I and have echos to check for MPV and dillation of the assending aorta. You might find a paper on EDS 3 by Howard P Levy, MD PhD quit useful, go to WWW.genetests.org and do a search for EDS 3 by the afore mentioned Author. Anna

Hi Jacquie, My kids and I get very bad vertigo and other dizzeness, I take Cinnarizine 15mg 4/ day to reduce vertigo, and it helps a little with the other dizzeness as well. The Dr.'s seem to try out meds that are designed for manegment of Menier's disease. Do you take any of these kinds on meds.? Anna

Hi Amy, I did not get to have a 10 week scan, for some odd reason they missed me out on the 12 week scan list, thus got to 17 weeks without knowing, divin intervention I guess!! You might find a mild ginger tea might help with the nausea, take care, Anna

Hi All, Thanks for input, Anna

Hi Amy, I had quite a few problems much like you discribe, during my second pregnancy. We found out why when it came to my first scan at about 17 weeks, as clear as day we could see TWO little hearts beating. Prior to that we thought I was just carring one baby as our twins hearts beat as one and our mid wife could not hear two diffrent sets. So could you be having more than one baby I wander!! I hope I have not made you worry.!! Hope all turns out ok, take care, Anna

Hello All, I have a question that may be very silly but I will ask it any way!! I and my kids get breathless sometimes just sitting etc. every time I take my kids to our GP, when they are very breathless he makes them blow into a peak flow meter, that tends to be within normal range, so then he justs says that is fine, nothing wronge here bye. My kid is still very breathless, why? Is it because our brain is reciving wrong information from our heart, thus it sends out a message like 'I am not getting enough O2 I need more O2' or is it an or is it really a lack of O2 problem if so why can't our GP see this? My kids and I all have some form of familial dysautonomia which is being investigated. Sorry if this sounds silly but would like some input. Anna

HI, Thanks for the input folks, trying to find new dr. now. Anna