k'smom

Kay's internal med dr wants her to try Digoxin to regulate her heart rate. I googled it and the possible side effects make me weary of it. Just wondered if anybody else has had any experience with that particular med. Thanks, Kim

Kay started Florinef on Dec. 6th, .01 mg before bed. Her drs have increased it to .02 mg starting tomorrow because it hasn't been helping so far. As of yet, she isn't having any swelling or other side effects. She already had terrible insomnia, so I haven't really seen a difference in that. We will be monitoring her very closely when we start the increase, but as far as I'm concerned, if we don't start seeing an improvement, there's no point in continuing to leave her on it. I hope you have better luck with it. Best wishes, Kim

We've noticed that Kay is worse the week of and after her cycle, with episodes everyday.

As you know, I'm still new to all of this, but K's dr and I talked about this. He told me that for persons whose bp tends to fluctuate widely, that a bb or cb are the wrong things to do because they can over-regulate. I've learned that if I'm going to give her any new medicine whatsoever to monitor her closely to see what affects it will have. Personally, I used to take Atenolol for MVP and it would drag me down so bad that I could barely function and I don't have any other physical ailments, much less POTS. Best wishes to you! Kim

Thank you for letting me know, I appreciate it. Best wishes and prayers to you and your daughter.

Thanks to both of you. I did go to the EDS website and read the pdf file entitled, "you think you have eds". It was extremely informative. I think I'm going to print it out and bring it to her next visit with the internal med dr. He seems to be very educated on dysautonomias. The neuro that Kay sees doesn't seem to understand all that much about it. The dr that he works with is the one that actually does the testing but we never get to see him. He only came into the room twice while she had her tests done and that is the only time we have seen him. Matter of fact, the neuro that sees her on a regular basis told her that her condition would not get any worse it would just be basically adjusting her lifestyle. She asked how he could say that because it has gotten worse over the last year. He didn't have an answer. I'm not putting down on this doctor, he seems to be good with seizure disorders and such, but I just have the feeling we should move forward from here with someone more knowledgeable on her problems. The internal med dr has suggested that we make an appt with a specialty clinic. We talked about Vanderbilt, but do not yet know if they will see her being that she's a teenager. I try to take all of the info I learn from here and pose questions based on that to the drs. It's really strange that my mom is enduring a mysterious illness very closely related to what Kay is going through. Except my mom has been in stage 3 renal failure also and the drs cannot find a reason for it. As far as Kay goes, I will not stop until I know what all is involved and what all can be done to help her. I am determined to be proactive, overbearing, aggravating, whatever it takes to get her the help she needs.

My daughter had a very similar episode as you describe a while ago. I have tried to explain it to her neuro but he looks at me puzzled and says she tested negative for seizures. I don't think it was actually a seizure, just similar. She was awake, eyes wide open, could hear but could not respond. I hope you do find someone who can help you with this.

Hi Sue, You can look at my previous posts, but the procedure name is autonomic function test. That's what they called it and thats what is on the report. The first part says the cardiovagal, vasomotor sympathetic function and sympathetic sudomotor responses are normal. The second part says the head up tilt showed significant increase in heart rate with elevated systolic and diastolic blood pressure, with symptoms of light headedness. The increase in heart rate and blood pressure are an indicator for "hypertensive postural tachycardia syndrome." I'm not sure what all that first part is about, but at least it's normal. She might possibly EDS too. I asked the doctor and at first he said, "No, people with that are flexible and the joints pop out of place and such." As he's saying this, he picks her arm up and without knowing, popped her shoulder out of place. Imagine the surprised look on his face. After that he preceded to tell us how odd it was that her thumbs could easily bend to her forearms or even across her hand so that the tips stick out over the far side of her palm. So anyway, we have to talk with a different dr about that. The neuro said that her skin isn't stretchy like someone's with EDS. So, I don't know, we'll see. Thank you tablet, It does feel great emotionally. I know that almost has to sound twisted, but we've been searching for answers for over a year now and it's an enormous relief to be able to put a name on it and be able to learn more about it. Hope ya'll have a great day, Kim.

We received the results of K's autonomic dysfunction tests today. She does have POTS. She started on Florinef over a week ago and it is helping some, but he doubled it today. I wish she wasn't sick, but I'm happy we finally know for sure.

We had a very emotional visit with the internal medicine dr yesterday. He told Kay that she would not be able to get her drivers license any time in the near future, or do some of the other activities that she likes to do. Of course I already knew this, but she really likes this dr and thought he might side with her. She was pretty heartbroken, and it broke my heart to see her so upset. He did decide to go ahead and start her on Florinef. We are going to see how we do with our visit with the neuros next week and if they don't seem to be getting anywhere, the internal med dr is going to go ahead and refer her to one of the autonomic dysfunction centers. We just have to see which ones will take her, being 16 yrs. old, that's not too far away. I feel like we have gotten further with this internal med dr than any of the other ones. He also told me to go ahead and submit an app for disability for her. He said the main thing with the Florinef is that it can cause swelling. Has anyone had trouble of any other kind with it? She's supposed to start it tonight before she goes to bed.

Thank you very much for the links, Sarah! Very informative!

Arizona girl, yes she is low most of the time. If she gets out of breath for any reason, her bp is high. Sometimes its just high and I don't know what the cause is for it. The doc that did the test Monday, and the one who gave me the orders on the phone yesterday, are pediatric neurologists. They are in the same group, but the doc who actually did the testing was just certified to do it in September. From what I understand, he had to go through a year of special training just for the auto dys testing. But I'm still kind of afraid that he's not as educated with it as he should be. In a small way, I kinda got the impression that the dr that called yesterday wasn't really to overly concerned. But hey, it's my daughter and I'm taking it all very seriously. It's not normal to have to tell your 16 yr. old, "no, you still can not have your driver's license because they are still trying to figure out what's wrong and how to treat it." I'm sorry, I'm rambling. What are the tests for small fiber damage?? Sarah4, what are the tests for connective tissue disorder and what is MCAD? Sorry, I'm still very ignorant about all of this. MomtoGiuliana, I've decided to go ahead with trying the salt again and be sure that she drinks the water she needs. The doctor who had us stop doing that was an MD, so I guess we better go with the neuro on this one. Guess we'll see how it works out. We live in South Mississipp in a very small town. The neuro drs that she sees are in Jackson, MS. Once the reports on the latest tests are written, I'm thinking of getting copies and maybe try getting her in to see someone in another state at a more experienced clinic.

Thank you Arizona Girl for the info and tips. I'm glad to hear that you are now getting the right treatment for your illness. The dr asked me yesterday if k's bp seems to be low most of the time and I explained to him that hers has just been all over the place lately. I told him that early on, this time last year, we did try the salt increase. But on a visit to our family doctor, he said her bp was way too high and to back off of the salt. The dr I spoke to yesterday said that she needs to be on the salt and then make sure she drinks at least 8 glasses of water a day to flush out the salt, and that will help regulate her bp. Does this makes sense? In answer to the EDS thing, I wonder about that being a factor. Her neuro dr hasn't said anything in reference, but her GI doctor thinks its strange how her shoulders just pop out of place. I think she does have hypermobility because of that and the way her thumbs can bend down beyond her forearms, and her knees pop out of place sometimes. Her left shoulder is the absolute worse. But again, I'm not educated enough on these things to know. I keep reading about skin being like elastic, and I just don't see that in her. She does bruise VERY easily though. I am still considering taking her to different clinic with more experienced drs. Also, do any of you have any thoughts on whether I should try applying for SSI for her at this point? I'm not complaining about it, but the trips back and forth do get very expensive for us. She's currently on Medicaid, so that's a HUGE relief. Any thoughts?

I received a call from one of the drs today. He told me that the dr that is reading the test is not done with it yet, but that so far they know she needs to increase her salt intake and have at least 8 glasses of water a day. He said they know she has vasovagal syncope. From what I understood he said that blood pools in her carotid arteries at times. She has an appt to go back to them on the 17th of Dec. They are going to decide whether they want to start her on Florinef (sp?). He said we would discuss the test results further at her appt. I thought vasovagal syncope just meant passing out. He did say that the test was positive for auto dys though. I still feel like I'm in the dark but hopefully we will understand more when we go back.

I think its a lot more worrisome with it being her. I can only imagine what it must feel like. Seems like a bad roller coaster ride that her body is going through. Her GI dr is her new primary care dr, but he's on vacation til next week. But I'm going to make an appt for her as soon as his office opens Monday. This has been a very bad day for her. Thanks for the info on the meds and the positive reassurance too.

I don't really know anything except this is all so scary to me. Her BP was 189/161 with a pulse rate of 115 a little while ago. I can usually tell when I need to check it because her cheeks get really red. I had her lie down and be still and it dropped to 117/69 pulse rate 69. I know the bp being that high is dangerous. It usually runs more on the low side but I don't know why its running so high since that test. The neurologist's clinic where she had the test done yesterday is 2 1/2 hours away from here. So if her bp continues to be this out of range I may take her in to see the GI dr that she's been seeing. The bad part of it all is that I don't know what they can do for her. I can't see them putting her on meds for high bp when it can drop so suddenly. I truly am scared out of my wits for her. I know a lot of ya'll have been dealing with this stuff for a long time, but I still feel so inadequately educated.

I haven't posted in a while because we've been so busy running from here to there with tests and doctors. My daughter is so sick of being poked and prodded. Last month her new GI dr ordered all the tests that a lot of you suggested that she should have. He discovered that she has hypoglycemia, so she is now on a diabetic diet. Over the last few months we have also figured out that stress and her menstrual cycle are DEFINITE triggers to her blackouts. We were finally able to get into the clinic yesterday for her autonomic dysfunction testing. I'm still not sure what the actual name of the test was, but it was a small series of testing that took approximately two hours. The first thing was a sweat test. Then she was hooked to a finger BP monitor, heart monitor, pulse monitor and some other ones I didn't know what they were. After watching the monitors for a while, they had her blow through a mouth piece and hold for 15 seconds. Thats where her problems began. At the onset of the test, her BP was running around 117/79. After she would complete each set of blowing through the mouthpiece, her BP would go as high as 189/100. She began to have a headache then. Her pulse rate ran around 117. When that was completed, we waited for a while for her vitals to return to normal and then started the tilt table test. When they first raised her to 70 degrees, her pulse rate was 118. By this time, she had a splitting headache. Five mins into the test her pulse rate was at 125, ten mins she was at 135. The tech ran out of the room and brought the doctor in and they both watched her for a while. When her pulse rate returned to 125, the doctor left the room giving the tech the instructions to finish the test. Within another five minutes her BP had dropped to 80/60, pulse rate up to 210, she was crying because she felt like she couldn't breathe and the headache was excrutiating. The tech immediately lowered the table and it took 45 mins for her to level out enough for them to let us get her up and bring her home. All the rest of the evening and night she was very tired and weak. Clearly the tilt table reactions scared the tech as much as it did me, so I know it couldn't have been normal. I was told the doctor would call me in a few days after they went through all of the data. I'm sitting on pins and needles waiting. When this all started, I didn't believe that she had POTS, but I'm beginning to wonder now. I'm not a dr and don't really know what the normal reactions should have been to the tilt table, but I know when she had the first last Dec., they gave her something through IV to speed up everything and she didn't have that kind of reaction. Yesterday, there was no medicine involved, so I'm assuming that this is what is happening to her body when she's having the blackouts at home. I just can hardly wait to hear what the dr has to say.

I'm new here, mostly reading and learning. But when I read your post, I thought of an idea for you. Try getting your friends to check out some of the videos on youtube of people with pots. Maybe then your friends can get a better understanding. I hope you have a fun and safe trip.

Thank you for answering my question. When we were sent to the children't hospital for the 24 hr. EEG, the neuro told me that they were ruling out seizures. During that time, my daughter didn't have any spells, symptoms or anything. They had her lying in a bed, pretty much being still, except to go to the bathroom or eat a meal. I don't know why nothing happened during that 24 hr. period. But then the drs told me that if she had any seizure activity they would see it on the EEG, regardless of whether she had a spell or not. Now I'm really questioning that.

Something new happened to her last night. She is staying with my mom this week. She went in to get a shower and apparently "zoned out". When my mom knocked to asked if she was okay, my daughter didn't answer. My mom went in and she was just staring into space- not hearing anything my mom was saying to her. That sounds more like a type of seizure to me. Do any of you ever do this? My daughter says she really don't know what happened but she thought she had only been in there a few minutes instead of over 30 minutes.

Thanks again to all of you! I'm really beginning to wonder about some things now. My daughter has had problems with constipation since she was about 5 also. Her stomach would hurt so bad she would double in pain. I took her to several different pediatricians who did different tests. Her blood work always showed high pancreatic enzymes and she tried several different medicines: prilosec, zantac, ect. They kept telling me that there was too much acid in her system. I never got an understandable diagnosis or reason for it. She was hospitalized when she was 8 yrs old with an intestinal infection due to her intestines working slowly. I was always careful to make sure she had plenty of vegetables and not much bread and other stuff that I knew would worsen her problems. She seemed to grow out of it at around 12 yrs old, but has now began having trouble again. She was also born premature (at 32 weeks). Within two days, she was diagnosed with bradycardia and sleep apnea and was put on Theophylline twice a day for the first 3 months of her life and was on an apnea monitor. At three months, they did a sleep test and said she was fine. At 4 mos. she had RSV and had to see a pulmonologist for a few months following. When she was 5, she developed a UTI that was almost septic and had to be hospitalized for a week. She was fine that morning when she went to school and had a fever of 103 by noon that day. It was almost as if it hit her out of nowhere. It kind of sounds as if she has been sickly her whole life, but she really hasn't. It's just when she gets sick, it's usually bad. I stated all of this because a lot of you seem to have kids around her same age with some of the same problems. I'm just wondering if any of yours have any similairities.

Thank you for your encouragement and sharing your knowledge with me. I had no clue what EDS was before reading it here. I did look it up and read about it. In many ways it sounded a lot like her, but then I read about having the almost elastic-like skin and that doesn't fit. I did however add it to my list of things to talk to the neurologist about on our next visit. I have mital valve prolapse with tachycardia, so I'm familiar with those terms. (My daughter has now had two ECHOs done and neither indicated prolapse or tachycardia. But hers did show the mitral and tricuspid regurgitation. I always believed you had to have prolapse to have regurgitation, but guess I was wrong.) The cardiologist she was seeing told us, "irregularities in her heart beats". So he could have been referring to tachycardia, I don't know, but I now plan to get a copy of that record and find out. Thanks for the heads up on that!

It doesn't take long to figure out that this site and the people here are awesome and full of information. I know we have to find the right doctor, but I also believe the saying that knowledge is power. When I first heard the term autonomic dysfunction a couple months ago, I asked the dr to repeat what he said three times and then had a nurse write it down for me. I had never heard of such, lol. I then figured out that when you repeat it to other drs they tend to do the same as me and ask me to write it down for them. But there is little info on what I'm learning is a very broad topic. We live in Mississippi. The drs at the hospital that we have been to most recently, told me that they used to have a specialist to do the testing for this disorder, but are no longer certified to do the testing due to that dr leaving. I have asked lots of questions that have never been answered and I'm beginning to believe it is because they don't know the answers and that's why they are talking about sending her elsewhere. No disrespect to her drs, but instead, I admire them for realizing they are not equipped to handle her problems. I'm so sorry that a lot of you have had to go through years of these kind of problems with no answers. I'm hoping my baby doesn't have to.

Issie, In answer to your questions: she is very flexible and bruises easy. She never really complains about her back. Of course, she's not a complainer either. I can look at her and tell when something is bothering her and I have to pry it out of her. But her shoulder pops just about everytime she moves it and it sounds as if it is popping in and out of place, she says it feels like it too. How is the testing for Ehlers Danlos done? She's not on any meds, except Ibuprofen for headaches/pain. ChristyD, I just wasn't willing to take the chance of what Zoloft could potentially do to her. He wanted to put her on it to help raise her bp, and I now know it's a good thing we didn't, because her bp can get really high at times and that would have made it worse. Sue, She hasn't had a 4 hr. glucose, but I will ask about it. Does the 24 hr. urine test require catheterization? Thanks to all of you for the information. From what I understand autonomic dysfunction can be caused from a wide range of conditions. One of her drs was talking about sending her for testing at the mayo clinic. She was referring to some kind of test that deals with the electrical system of the body. We are currently waiting for a follow up appt, so I have to wait to ask questions that are on my mind now. Do any of you know what particular kind of testing is done for autonomic dysfunction and if there are drs/facilities that do them other than the mayo clinic-- for instance in the southern region?