My 15 Yr. Old Daughter

[k'smom]

Hi Everyone,

My name is Kim and my 15 (soon to be 16) yr. old daughter has been experiencing a lot of what some of you are dealing with. I'm glad to have found this forum!

She started by having a couple blackouts when she stood up too fast. I really didn't think that much about it, knowing about blood pooling your knees when you stand. Then on Dec. 29th, she blacked out and fainted while in the shower. I heard the shower curtain rip and when she hit the floor. I was unable to get in b/c the door was locked. I had to wake her up pounding on the door and hollering her name. It took at least 3 mins for her to answer me. We live in an older house with solid hardwood doors, so there was no way for me to break into it.

When she came to, she managed to wrap up and unlock the door for me. She was pretty much incoherant as to what I was saying to her and VERY shaky. She had hit her head three times on her way to the floor and (we now know) severely bruised her ribs. I took her to the ER where the dr. did some blood work, a drug test and an EKG and sent her home with a diagnosis of syncope. The next morning I took her to her reg. dr. who called a cardiologist who saw her that same day and admitted her for testing. She had the following tests done: ECHO, which showed borderline pulmonary hypertension, +1 mitral valve regurgitation,+1 tricuspid regurgitation; CAT SCAN of head, normal; MRI/MRA, normal;

xrays, normal; lots of blood work done, some things were high, some were low, like sodium was high, can't remember the rest; and a tilt table test, which they said was normal also.

The tilt table test consisted of them putting her on a table and monitoring her heart and bp for 5 minutes, raising her to a standing position and monitoring her for 5 minutes, then injecting her with something to make her heart race and monitoring her for 10 minutes, then injecting her with something to counteract the first medicine. Is this how the tilt tests are normally done?

She was then sent home on a 30 day heart monitor which showed irregular heart beats and the cardiologist said that it was nothing to suggest a serious heart problem but that he suspected she had autonomic dysfunction. At that time he diagnosed her with hypotension b/c her bp was staying around 85/60. We wanted to put her on Zoloft and I am not comfortable putting my 15 yr old on that medicine, so that's where we parted ways.

She is now seeing a group of neurologists in a large town 2 hours away. They just did a 24 hr. EEG study on her which was also normal, so they said she is not having seizures. Here is a list of her symptoms she has developed over the last five months.

fainted (only once)

blackouts (sometimes two or three times a day, while sitting, standing, walking or running)

dizzy spells

severe stomach pains, ( usually right before a blackout)

headaches ( along with a feeling of extreme pressure and fast heart rate)

chest pain ( along with fast heart rates and trouble breathing)

insomnia

being weak and tired alot

decreased vision (she just had to get glasses and her vision was fine 9 mos. ago)

low bp/ high bp

pain in joints ( especially shoulder that seems to pop alot, and knees)

awaking from a dead sleep feeling shaky, fast heart rate and feeling like she's falling

head shaking ( it happens very fast, back & forth 5 or 6 times, almost like an extreme shiver)

head drawing back ( the muscles in her neck tighten and draw her head back and to the right side, only for a minute,

and then when it releases, she has tingling down her neck, both her arms and into her fingers.)

Does this sound familiar to any of you? Any advice any of you may be able to offer is greatly appreciated.

[issie]

This is familiar to me. When I was younger, my vision started changing allot too. I was having to get new glasses every 4 to 6 months. Is she also very flexible? Is it easy for her neck and back to get out? Does she bruise easily? Does she sprain her ankles or is she a little clumsey?

If the answer is yes to these, have a rhuematologist check her for Ehlers Danlos. I'm 50 and just found out that I have this. It is a gentic inherited connective tissue disorder. It can also cause dysautonomia. I have vascular involvement. Compression stockings and garments have helped me allot, because it helps to hold my tissues tight and keep joints from spreading and veins tighter in my legs. I also find Emergen C to be helpful. It helps because of the Vit c and the salt. My salt levels come back high on my blood work too. I've never been one to eat allot of salt. In fact, I have an aversion to it. So, when they told me to up my salt, it didn't seem right. One thing I have noticed is no matter how much I drink, it seems I always feel dehydrated. The water/fluid doesn't get into my cells right. Is this an issue with your daughter too? Maybe, this will be a direction to look. Keep us posted--we're all learning from one another.

[Christy_D]

My 15 year old son experiences most of those symptoms, no vision problems and no fainting though. He was on Zoloft for awhile, but it didn't help anything. There is a lot of trial and error with medications for POTS. I keep a list of all the medications he has tried since there were so many(20+). The anti-depressents are being prescribed because they help with the symptoms, not necessarily prescribed for depression or anxiety.

[sue1234]

Has she had a 4 hour glucose tolerance test? With her waking up straight into a fast heart rate and shaky could mean she's getting low blood sugar.

Or, those above symptoms, along with her spikes in b/p, a headache, and abdominal pains, need to ask for a 24-hour urine to test for catecholamines to check for a pheochromoctyoma.

Those are the two things that jump out at me that y'all need to eliminate, as far as possibilities.

[issie]

I forgot to ask, is she on any meds? Sometimes even simple things like allergery med. can affect a person with POTS adverserly. I've noticed that sometimes Benadryl will cause me to have tremors worse. My head will shake and so will the right side of my body. Other times the Benadryl will be beneficial. It's really hard when the autonomic nervous system is messed up. It can cause all kinds of symptoms and dysfunctions. We seem to be extremely sensitive to meds, foods, chemicals, and pain.

[k'smom]

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?

[potsgirl]

k'smom~

We can all give our insights and experiences, but the only way to really know what's going on is by going to a knowledgeable doctor who will perform the appropriate tests. I went to the Mayo Clinic in Rochester, where they have a specialty group in ANS dysfunctions, as did several others on the forum. Other good places are the Cleveland Clinic and Rochester. I would try to get her in at one of those places, where they'll have her do a tilt table test and others they find suitable to her symptoms.

You have all of our support, and please feel free to always ask questions and come to the forum for support. We're just not medical personnel...but we know where they are!

Cheers,

Jana

[erickamcc0523]

Hello Kim,

I just turned 24, and I think I was about your daughter's age when my symptoms started getting really bad. I fainted a few times, but almost every time I stand up, I got what is called presyncope, basically my body gets flushed and tingly, my stomach starts cramping really bad, I start getting either tunnel vision or everything goes kind of grey and fuzzy and I see stars, and I start shaking like crazy. If I don't sit down within like 20 seconds, I have a good chance of fainting. Anyways, it sounds like, with what you have described, that you are on the right path as far as her health goes.

I wanted to also say just how glad I am that you are taking such a proactive role in helping your daughter. There has only been a handful of times in my life that my mother has actually taken me to the doctor or the ER (outside of yearly checkups) without me having to basically plead and guilt her into it. I may have been throwing up for 10 hours straight (and couldn't even keep water down... gallbladder attacks are very fun), but unless I was near death, I wouldn't be going.

One thing just occurred to me, too. Does your daughter have acid reflux and stomach pains at other times except when she's near syncope? I have noticed that a high percentage of people here have had gallbladder issues, and the worst of my gallbladder issues started at around age 15.

I hope that your daughter is soon able to find relief from her symptoms. If you are anywhere close to Knoxville, TN, the Knoxville Neurology Clinic has an MD and a PhD on their staff that treats and tests for autonomic dysfunction. Stephen Rider, MD treats it, and Ronald Leppanen, PhD, I believe, still test for it. He did the last time I checked (about 6 months ago). Also, I can give you the name of my own cardiologist. He is very good, very thorough (he spent 10 minutes having me lie down, sit up, and and stand up while checking my heart rate and bp), and he is refreshingly honest. He told me the last time I saw him that he felt somewhat frustrated in treating me, since there hasn't been a "miracle pill" for POTS and dysautonomia yet, and he felt somewhat helpless that he couldn't do more at this time. He has 10 other POTS patients, too.

[issie]

The electrical system test is the Tilt Table Test (TTT). I looked up your profile and couldn't tell where in the south you are. There are doctors in the south. If you look under this site into the doctors list, you can see some recommendations. I think most of us (as potsgirl indicated) has been to one of the larger diagnostic places. I personally, went to Mayo in AZ. But the one in Rochester is the most noted for Dysautonomia diagnosis. If you haven't gotten the new DVD from this site, it would be very helpful to you. One of the doctors featured in this is from Pensacola, FL. Since this is considered a rare illness, not too many doctors know about it or how to treat it. There is allot of trial and error. As for Ehlers Danlos, I was diagnosed at Mayo by a rheumatologist. They can test by physical symptoms and history. The hyper mobility type cannot be tested with genetics, but the other types can. Then they will send you to a genetics specialist. You will notice the stories that many of us have had in trying to get a diagnosis from doctors who don't know about the illness. It will save you allot of time and money to just go to a place that is noted for recognizing the issues and diagnosing it. The doctors mean well, but they really don't know how to treat you sometimes. You are dealing with such complete opposite issues sometimes within minutes. Your BP can go up or come down. Your pulse can be very high or hardly there. It is VERY complex. Now, at least you are probably on your way to putting the pieces of the puzzle together. They will start to fit and then you just have to figure out how to complete it with the care.

I agree with one of the comments about you helping your daughter. I just figured out what was wrong and I'm now 50. I've been dealing with this since I was about 12 years old. It's so nice for her to have someone to advocate for her.

One note, allot of the young ones do with age overcome this and have few problems as an adult. Here's hoping she is one of those!!!!!!!! Good Luck in your journey.

[Aquadiva]

Hi Kim and welcome. I also have a daughter that was dx at 15 and am sorry you had to find us in your search for answers for your daughter, but GOOD for YOU and HER!! You are being a great mom for pushing for answers for your child. My experience has been that kids aren't taken as seriously as adults and it is our job to advocate for them. This site is a WONDERFUL source of information and support. I have learned so much from everyone here and am so grateful.

To answer one of your questions: a 24 hour urine is just a simple collection of all the output in 24 hours into a large container--no catheterizataion. My daughter just had one of those done and believe me, if it did there is NO way I would have convinced her to do it. She thought it was bad enough to have to pee in a cup for a day! She just hates that. Oh, and another one of her major complaints--putting on a hospital gown! She'd rather have her blood drawn or an IV any day. Teenagers!

I sent you a message also.

Good luck to you in the quest for help and answers!

[k'smom]

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.

[janiedelite]

I think the quickest way to get a full picture of what's behind your daughter's symptoms is to go where the experts are, and where they have the most testing capabilities. I live in Oregon, but went to Mayo in MN because we knew that I had POTS/autonomic dysfunction, but we wanted to know what was causing it because then we could maybe do something about it! After being to over a dozen specialists locally, we decided to make the sacrifice and travel to the experts. Here's a link to the physician's list for other physicians who treat dysautonomia and might be a bit closer:

http://dinet.org/physicians.htm

[erickamcc0523]

Vanderbilt in Nashville also has an Autonomic dysfunction clinic. I also have heard some good things about Cleveland Clinic, too... I've heard some mixed review about all of the places, but that may be in part due to the fact there isn't a cure, or even across the board successful treatment for it. One of the fun things about dysautnomia is that it also affects how one processes and metabolizes medicine. Therefore, we can become very sensitive to, and even have very rare and strange reactions to medicine. I specifically remember once when I was on lithium (I was misdiagnosed as bipolar for almost 7 years, and I was on psychotropic meds much of the time, but that's another post ), and I guess it should have been a clue that I got toxic on it, even on a below therapeutic (for most people anyways, but my psychiatrist at the time had at least 5 years of experience with my reactions to meds, so he had me on a very low dosage at first) levels... so toxic that I was hooked up to a couple bags of IV saline. I had been drinking almost 100 oz of water a day at the time. I still have such trouble staying hydrated, like many people with POTS.

Anyways, my point was that what might work for one person could be the worst possible thing for another to take. And some, like me, have decided to not take medication. I am too scared of horrible side effects, and as long as I stay hydrated, eat plenty of salt, and make sure to tense my legs alot when I'm standing, especially when they start turning dark purple and swelling up (and sit down as soon as possible, but I've been trying to increase my tolerance of activities, and slowly but surely, I'm adding an extra few minutes here and there. Hopefully before long I'll be a least a bit more functional). I took a beta blocker for awhile, and although it helped some with the presyncope and the dark purple legs, I was SOOO exhausted all of the times, even more so than POTS normal. I guess for me, I just weight the pros and cons of each (like symptoms of POTS vs symptoms of meds), and decide which one I can live with better. I can function somewhat better feeling shaky and lightheaded all of the time better than I can if I'm sleeping all day.

In any case, I will tell you what someone told me when I first joined... welcome to this autonomic dysfunctional family!

[kjd111]

Hi. This is also my first post here (although i have lurked for a month or two) - and this board has helped me so much. My daughter has a similar story with a few differences. She just turned 15 and is a competitive figure skater. She had some trouble starting 2.5 years ago passing out when she stood in the morning. During one of those episodes, she hit her head in her bathroom while falling and ended up with a level 2 concussion and her life changed dramatically. She had several months where her body wouldn't hold on to fluids. She went to the bathroom all the time and dropped 7 or 8 pounds of water immediately. I was told later (much later) that this was probably an ADH deficiency from the blow to the head. Once she recovered and was able to start to skate again, we noticed that with any exercise she would "swell" - full body edema triggered by exercise or heat or sometimes anxiety. Then she would slowly deswell over a period of a few hours. And then she gradually started to gain permanent water weight. We cycled through a number of doctors with no success anywhere. We saw a cardiologist, kidney specialist and got nowhere except "your daughter must be stressed out since this happens when she is anxious". oi. A year ago April, her whole body shape changed. In 2 days. She swelled up a further 10 pounds. Her joints just stopped working. She sweated profusely all the time, no matter what she was doing. She had stopped passing out in February of last year, but she was exhausted. Her breasts also swelled - 2 plus cup sizes, much to her dismay as she is an athlete. She was also tremendously "foggy" brainwise. I spent the next 6 months taking her to different doctors with no luck. We even tried a neurologist at the big Children's medical center where we are but he was beyond rude - simply telling us she must be a "stressed out teenager". When i asked him if it was possible something had happened to her from the concussion, he pulled up the CT scan they had done a week after her fall that showed no bleeding and said there was nothing wrong.

At one point, i even thought she might have Cushing's disease. She seemed to have some of the symptoms - weight gain, facial flushing, trouble sleeping, small stretch marks across her chest. I took her to a well known doctor in Los Angeles who was concerned because her afternoon and evening cortisol levels, while not super high, were higher than one would expect and her morning one was quite low. She didn't end up having Cushing's, but they did find a 4mm adenoma on her pituitary. Finally, by pure accidental luck, i took her to another endocrinologist in Dallas (where we live). It took him precisely 20 minutes to figure out what was wrong with her. He took her blood pressure and heart rate lying down, sitting and then standing (poor man's tilt table test). His eyebrows shot up and he said "sit down, now!". He then had us stay and very methodically drew blood to test her catecholamines. He seemed to really know what he was doing. They had her change into a gown, put an iv in to draw the blood so they didn't change the results when drawing the blood, and had her lie down for a long time. They drew the blood lying down and then standing. Her catecholamines were low lying down (like 250 total with no dopamine and very low norepinephrine) and went up a whole whopping 30 points when standing - not doubling as they should. We were told she had orthostatic hypotension, most likely because her hypothalamus has been damaged from the blow, possibly also due to an autoimmune response (she also has celiac's so he thinks autoimmune may be playing a role) and she isn't producing very much norepinephrine at all. He suggested that her capillaries are staying open from the lack of norepinephrine and that is why she "swells", fluid leak into tissues, and why her blood pressure drops. He also tested her standing aldosterone levels (0 - he was shocked and said he hadn't expected that). So, we don't fully know why this has happened, but at least, after almost 2 years of doctor's telling us she needed to "relax", we are starting to understand some of what is wrong. Some of this is definitely damage from the fall (since the water retention and fatigue started right after) but i think some she has had for a while (constipated since the age of 5 which now seems resolved with meds).

Your story caught my eye because your daughter is close in age to mine, and that's where my daughter started passing out first, was in the bath/shower. Also, the muscle/joint aches seem similar too. My daughter is flexible due to the skating but not hyper flexible as it sounds as though some with EDS are so i don't think that is our issue. The medications they have given my daughter help, but whenever she is tired, stressed or doesn't sleep well, it seems she might as well not be on them. She is still trying to be active and skate and when she isn't exhausted from studying for finals, she does ok. We have not gone to an autonomic dysfunction clinic yet and i don't know if we need to for the moment since we have now got quite good care, but as others said, that might be a good idea as a place for you to take your daughter. Our endocrinologist has been the primary doctor for this and as i said above, he is a marvelous man. 50 percent of his practice is reproductive endocrinology but the other half is "exotic" endocrine disorders (and he seems to see people from all over the country) and while it seems like a lot of dysautonomia falls under a cardiologist's realm, he seems to know an awful lot about it so perhaps it has or can be under an endocrinologist too. Either way, he is extremely nice, listens brilliantly (our first appointment went 3 hours), takes all after hours calls to his personal cell phone (we haven't had to use this but i was astonished that he did it) and really knows his stuff. After our first appointment he gave us each a hug and said "we will figure it out and do our best to fix it". He is in his 60's i do believe and apparently spent quite a bit of time at the NIH. I am unsure of the rules about posting doctor's names, etc. but if you would like that information as you are in the south, i would be more than happy to send it to you.

I had planned on posting earlier to see if anyone had experienced some of the symptoms my daughter had, particularly after any kind of head trauma. Her symptoms seem to change (for example she stopped sweating completely this winter after sweating profusely all the time for months), sometimes better sometimes worse. It was like her system went haywire last year, and then shut down. Her joints don't ache anymore and don't feel "dry" but she does get crushing exhaustion if she does too much. She doesn't pass out (that stopped without meds by the way) so maybe this is something that eventually will improve a little bit. The doctor has her on midodrine, florinef, dextro-amphetamine (which really has helped a lot) and a beta-blocker. Take care.

[sue1234]

kjd111-

I sent you a personal message(look up top of your DINET screen and you will see 'New Messages'--just click).

Your doctor sounds like he understands what little picky things are going on with your daughter. He sounds like I wish he was practicing in my hometown!!!!!

[masumeh]

Hi,

Sorry that your daughter is going through all this. It's hard on a parent to see their child unwell. Hard on a teen to be less than perfect...though all people are.

Okay, so I think the joint thing should be looked into for EDS, and hypermobile joints is a sign of EDS as well as a correlate to POTS (and so many other things). It is a genetic trait, whether it's actually EDS or simply hypermobile joints. Also linked to anxiety problems.

Other than that, I will say that you can't "wake up" a fainted person. (Believe me, my mother tried EVERYTHING.) They can't hear you, and their body will revive itself whenever the blood supply is sufficient. I used to faint frequently, and it's preceded and followed by true disorientation. Although specialists have reassured me that my fainting episodes are not technically siezures, I've found siezure-prevention and siezure-safety tips to be very effective. No sugar, plenty of lipids from olive oil, butter, mayonaise. Plenty of antioxidants, water, sleep, and exercise. Carpeting everywhere. Injuries from faints are the problem; the fainting itself doesn't actually hurt the person in any way. Special measures around the kitchen...take out the coffee tables. Siezures cause insomnia for up to a month after. And I found that--despite all reassurances from medical professionals that POTS episodes aren't siezures--this holds true for me too.

Some medications can induce POTS...but also simply growth spurts, whiplash accidents, and genetic predispositions. Some of this kind of dizziness can be due to pulmonary hypertension (which you mentioned was borderline for you daughter), and that is the most common cause of syncope in young women. In that case, it's unrelated to POTS. "Irregular heart rate" is different from fast heart rate, or tachycardia. Irregular heart rate is potentially dangerous and her cardiologist would have been worried. So maybe you meant tachy, which typically precedes fainting and siezures regardless of the cause of the faint or siezure. Sometimes sudden weight loss can cause some of these symptoms. Many of us get this neuro damage as a result of mono infections. It takes several years to get past it in that case. Spontaneous recovery is possible. Some teens simply grow out of the phase. It took me 8 years and several treatment approaches to recover, but I'm now basically back to my old, pre-POTS self....a decade older and wiser.

I would say try to get expert help, but try also to maintain as much normalcy as you can. Stress provokes symptoms. Also, be prepared for a long and patient journey with ups and downs...keep living your life and support her living her life during the illness as much as possible...like don't lose time waiting for perfect health to return. Give yourself lots of breaks from it too, if you can...because it's usually several years before the person recovers, if recovery is the prognosis.

I wish your daughter a speedy recovery and all the life accomplishments and dreams come true that she wishes...and it can happen, even if she has POTS. She'll just have to be that much stronger to get there. I'm sure you're giving her the best support, and it's great that you have already found out about POTS and located specialists who can help you.

[issie]

masumeh,

I thought the way you expressed yourself was very loving and kind. Your advice was very good and I found it to be very educational. Keep those good comments coming!!!!!

[k'smom]

Hi,

Sorry that your daughter is going through all this. It's hard on a parent to see their child unwell. Hard on a teen to be less than perfect...though all people are.

Okay, so I think the joint thing should be looked into for EDS, and hypermobile joints is a sign of EDS as well as a correlate to POTS (and so many other things). It is a genetic trait, whether it's actually EDS or simply hypermobile joints. Also linked to anxiety problems.

Other than that, I will say that you can't "wake up" a fainted person. (Believe me, my mother tried EVERYTHING.) They can't hear you, and their body will revive itself whenever the blood supply is sufficient. I used to faint frequently, and it's preceded and followed by true disorientation. Although specialists have reassured me that my fainting episodes are not technically siezures, I've found siezure-prevention and siezure-safety tips to be very effective. No sugar, plenty of lipids from olive oil, butter, mayonaise. Plenty of antioxidants, water, sleep, and exercise. Carpeting everywhere. Injuries from faints are the problem; the fainting itself doesn't actually hurt the person in any way. Special measures around the kitchen...take out the coffee tables. Siezures cause insomnia for up to a month after. And I found that--despite all reassurances from medical professionals that POTS episodes aren't siezures--this holds true for me too.

Some medications can induce POTS...but also simply growth spurts, whiplash accidents, and genetic predispositions. Some of this kind of dizziness can be due to pulmonary hypertension (which you mentioned was borderline for you daughter), and that is the most common cause of syncope in young women. In that case, it's unrelated to POTS. "Irregular heart rate" is different from fast heart rate, or tachycardia. Irregular heart rate is potentially dangerous and her cardiologist would have been worried. So maybe you meant tachy, which typically precedes fainting and siezures regardless of the cause of the faint or siezure. Sometimes sudden weight loss can cause some of these symptoms. Many of us get this neuro damage as a result of mono infections. It takes several years to get past it in that case. Spontaneous recovery is possible. Some teens simply grow out of the phase. It took me 8 years and several treatment approaches to recover, but I'm now basically back to my old, pre-POTS self....a decade older and wiser.

I would say try to get expert help, but try also to maintain as much normalcy as you can. Stress provokes symptoms. Also, be prepared for a long and patient journey with ups and downs...keep living your life and support her living her life during the illness as much as possible...like don't lose time waiting for perfect health to return. Give yourself lots of breaks from it too, if you can...because it's usually several years before the person recovers, if recovery is the prognosis.

I wish your daughter a speedy recovery and all the life accomplishments and dreams come true that she wishes...and it can happen, even if she has POTS. She'll just have to be that much stronger to get there. I'm sure you're giving her the best support, and it's great that you have already found out about POTS and located specialists who can help you.

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!

[k'smom]

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.

[k'smom]

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.

[kjd111]

K's Mom;

The semi-seizure, staring into space, we have never had. The stomach, constipation, and weird ill-health things - absolutely. The endocrinologist we see now thinks that while what my daughter has was worsened by the concussion, those things indicate problems from a long time ago. I don't know enough to tell you more but he has told us that my daughter's sympathetic nervous system is definitely affected and the parasympathetic, possibly.

[bkweavers]

For adolescents with POTS or any autonomic disorder, it is very different from an adult. Adolescents and teens are going thru puberty and that can change things tremendously for someone with POTS. A medication that worked last year, may not work all of a sudden due to body changes. It's a roller coaster and believe me, we've been through quite a bit with our 14 yr. old daughter. For girls, their menstrual cycle can wreak havoc on their bodies. My daughter would get such bad dizziness and headaches each month, she could hardly move. That went on for 4 months until finally her period evened out and only came once a month.

Our doctor told us that teens have an 80% chance of growing out of it but it's a slow process. We are over 3 years into it and slowly we've seen small signs of improvement. It's been a long 3 years but hopefully, we're on our way back up.

I guess the best thing to do is not to push your daughter. She may have to cut back on school and sports and anything else that provokes her symptoms. She will need the extra rest and sleep if her body is going to recover and of course, lots of patience. It isn't easy to watch your child suffer but your daughter will become a stronger person because of it.

My prayers are with you and your daughter. If you want to talk or ask other questions, feel free to send me a message. If it wasn't for the many people who supported me and gave me advice about this illness, I wouldn't have survived. This web site and others saved me and gave me hope and that's what we all need!

Brenda

[k'smom]

K's Mom;

The semi-seizure, staring into space, we have never had. The stomach, constipation, and weird ill-health things - absolutely. The endocrinologist we see now thinks that while what my daughter has was worsened by the concussion, those things indicate problems from a long time ago. I don't know enough to tell you more but he has told us that my daughter's sympathetic nervous system is definitely affected and the parasympathetic, possibly.

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.

[k'smom]

For adolescents with POTS or any autonomic disorder, it is very different from an adult. Adolescents and teens are going thru puberty and that can change things tremendously for someone with POTS. A medication that worked last year, may not work all of a sudden due to body changes. It's a roller coaster and believe me, we've been through quite a bit with our 14 yr. old daughter. For girls, their menstrual cycle can wreak havoc on their bodies. My daughter would get such bad dizziness and headaches each month, she could hardly move. That went on for 4 months until finally her period evened out and only came once a month.

Our doctor told us that teens have an 80% chance of growing out of it but it's a slow process. We are over 3 years into it and slowly we've seen small signs of improvement. It's been a long 3 years but hopefully, we're on our way back up.

I guess the best thing to do is not to push your daughter. She may have to cut back on school and sports and anything else that provokes her symptoms. She will need the extra rest and sleep if her body is going to recover and of course, lots of patience. It isn't easy to watch your child suffer but your daughter will become a stronger person because of it.

My prayers are with you and your daughter. If you want to talk or ask other questions, feel free to send me a message. If it wasn't for the many people who supported me and gave me advice about this illness, I wouldn't have survived. This web site and others saved me and gave me hope and that's what we all need!

Thank you Brenda. I sent you a pm.

Brenda

[pat57]

Diffuse stiffening or frank clonic movements may occur with syncope, particularly if the person is maintained in the head-up position.36 With rare exceptions, convulsive syncope does not represent a cortical electrical seizure but occurs with cortical depression, usually manifested on the EEG by diffuse flattening.37 The release of brainstem mechanisms from cortical inhibition is the hypothesized mechanism.

Unlike a generalized tonic-clonic seizure, convulsive syncope is usually followed by little or no confusion or somnolence. Urinary incontinence and tongue biting are occur rarely.

http://professionals.epilepsy.com/page/sen..._diff_diag.html

I do the head jerking too. I have convulsive syncope

good luck