Update On My Daughter K

[k'smom]

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.

[sue1234]

I don't know much on how to interpret it. Can't wait to hear what her doctor says. I'm pretty sure it's POTS, as her pulse exceeded the 30 point rise. The end of the test sounded like pure h**l!

[lieze]

Let us know what you find out.

I'm curious to see what they suggest she do to help alleviate this.

Whether she just needs to rest and take it easy and not push til her body is ready or what?

I was terrified to have the tilt related to everything that went on with my elevated heart rates. The 210 really sounds like she went into an afibb but I am not qualified to determine that.

I was at about 210 during my cardiac ablation and it was a pretty horrible feeling.

I would say in the very beginning I'm not sure my heart rates were that high. Maybe I just didn't have a way to know how high they were. Then in almost a middle phase they did get high and we recorded them high.

Since my ablation those have diminished some.

I was having mornings there for a while when to get up and do anything my heart rate was very fast.

What I did was go sit down.

I have a polar heart monitor that I wear so I could know the rate.

If it was under 120 I kept going unless I was really breathless, if I was hitting 130 on up just with light activity I would go sit down, rest about 30 minutes to 45 until I felt like I could try it again. Get up again, often it would take three tries until I could get up and move around and do some light activity without it racing.

I think it helped that I kept trying.

Also I noticed in the evenings my heart rates were much lower.

Like resting heart rate was only 70-80's and I could get up and move around closer to 100.

This all seems to be improving overall for me whether I just go through some good phases I don't know.

Still haven't been brave enough to try the tilt test and don't really want to. For now I'm just trying to take things at a pace that my body can handle.

I still question whether I really have a true POTS diagnosis for myself too it can be a bit confusing.

I have not officially been diagnosed and my doctor has even said she thinks my POTS symptoms have stabilized at this time-I'm not sure what that means.

[k'smom]

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.

[skiberthoud]

I'm so sorry you are dealing with this with your daughter. I imagine it is much scarier watching it happen to her than if it was happening to you. My sympathy to you! Does your daughter have a good primary care physician that you trust? A good PCP can prove to be indispensible when dealing with these complicated medical problems. They can be the director of your orchestra of doctors and make sure you and your daughter get the care she needs. Hang in there and remember that you don't necessarily have to wait for the doctor to call you!

[MomtoGiuliana]

Sounds like you are getting to the bottom of it.

there are many meds used for POTS/autonomic dysfunction. As far as the wide swings in blood pressure, that is not too unusual for POTS. For about 50% of patients, a low dose SSRI helps. this could help your daughter. If that doesn't work for her, there are other things that can be tried. Most patients improve with time and appropriate treatment.

[k'smom]

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.

[k'smom]

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.

[arizona girl]

I know this is overwhelming, scary and it seems like endless waiting to find out. I had similar response to my tilt table not as high, but high enough and then I dropped like a rock and passed out. So these tests proved the dysautonomia, as they are for your daughter. They do not however address cause. I did the salt thing, while it helps some, those of us that go up and down, not so much. It is worth trying.

Many conditions can cause this to happen. Some are life threatening and stopping with salt/floinef is not enough. Trying to treat symptoms is fine as a start, but most of us need to test further and start ruling out cause. I say this because treating cause will get this under better control then treating symptoms.

On dinet's main page there are list of causes and mechanisms. Read through them and see if any fit your daughter. Then test for those conditions. Rule as many of them in or out as possible.

Ask these questions: Is she hypermobile, does she get a lot of colds, infections or GI problems. These symptoms could mean EDS or small fiber neuropathy and or a primary immune deficiency.

We first found through skin biopsy done by a neuro musclar neurologist that my small fiber autonomic nerves were damaged. Thus the swings in BP/HR. While treating that and probably because we were monitoring me more closely we found out that I also had an immune deficiency. I am now getting the right treatment. While it isn't perfect things are changing for the better I think. There are a lot of autoimmune conditions with these symptoms. Rheumy's are not the only ones who treat autoimmune, so do hematologist neuromuscular neurologist. Cardiologist are useful to rule out heart defects, but if the heart and other cardiovascular issues are intact, they will stop there and only treat symptoms. I've also found that each of the research hospitals all have their different research point of view and they can tend to try to make you fit their line of thought or dismiss you if you don't fit.

The good news is that autonomic testing now opens the door, for the next step. I wish you luck and quicker diagnostics. Once TTT was positive, it took less then a year to finally find cause and get to treatment. I was however not properly diagnosed for 25 years or maybe even my whole life, because I was probably born with this. If you can figure this out while she is still young, I have much hope for her future.

[k'smom]

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?

[arizona girl]

Well the question is she low most of the time, is telling. The salt loading best treats orthostatic hypotension and sycnope caused by that. My feeling is that if she is swinging there is probably small fiber damage. Salt loading doesn't really help with that. But, this has been the first line treatment. So they tend to go for it first, it is easy and if it works well they can feel good they solved the problem. I wouldn't accept this and would push for more testing. What type of doc is telling you to salt load with hypertension? Of course we all need to be hydrated, but many of us pee it right out, and it never increases our blood volume, which is the theory behind salt/fluids. You know if she followed the protochol right, if she did, then you already know her response and whether continuing will help or not. Always, trust your own judgement first, most docs don't get this right or understand it. That is why I said to use the resources here and read up, educated yourself and her.

If she is already on medicaid, I'd imagine she would qualify for ssi, if she unable to work. I don't know how old she is. Go for it if you can get it. I made the mistake of waiting and thinking I was going to get better, by the time I realized, I would qualify, it was too late for me to file. She is a dependent right? So that would be different path then someone who already had work credits. Be prepared for a challenge and being denied multiple times, if you stick with it she will probably qualify. Do what one of the other members did. He got a heart monitor and BP Cuff and video taped the postural changes in heart rate and BP. It is hard to deny it when you see it. He finally qualified. Search the forum on this topic there is a lot of info.

[Sarah4444]

K's mom-

Sorry for all you and K are going through. I wish I had answers, but just wanted to comment on the hypermobility you mentioned. I don't have obvious hypermobility or hyperextensible skin, but still have a Hereditary Disorder of Connective Tissue (there are over 200, EDS is only 1). I also have the MCAD-type symptoms that many people with POTS and a HDCT have - treating those has decreased the critical nature of my symptoms and has allowed me to begin sleeping again. I am not clear whether I have MCAD which causes POTS, or the other way around, or something else causing or worsening both. But while I try to get help figuring this out, it seems to help me to treat the POTS and MCAD at the same time. Good luck.

[MomtoGiuliana]

To respond to the salt-loading question and blood pressure--my bp can be quite variable. I find it is less variable when I take in more salt and/or am well-hydrated. Something about being dehydrated sets off the variability for me. I don't know if this is the case for your daughter, or for everyone with POTS/OI. I had a doctor tell me not to salt load b/c my bp was too high. This was a doctor not well-versed, AT ALL, on this condition. I have a specialist who always tells me to take in a moderate amount of salt per day.

[k'smom]

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.

[Sarah4444]

I wish I was an expert, but am just in the diagnostic process too. To learn about the connective tissue disorder that seems most commonly associated with POTS (or most easily diagnosed, maybe) go to the Ehlers-Danlos foundation (www.ehnf.org), and to learn about mast cell disorders, try www.tmsforacure.org. Many people with POTS seem to have one or both of these, but I'm not sure how they all fit together yet.

[k'smom]

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

[k'smom]

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.