Anybody Have Children Showing Symptoms Of Orthostatic Intolerance?

[flower]

Hello,

I am just seeking some information and perhaps a little advice.

I was diagnosed with severe P.O.T.S at the beginning of this year - but I've had symptoms of orthostatic intolerance since as far back as I can remember. Started fainting upon standing at about 9 years old - and then told I had a 'postural drop' when I was in hospital at age 15, and to get up slowly every time I stood.

So, it's been something I seem to have lived my whole life with to some extent. I don't know why though - I've been told I have 'idiopathic P.O.T.S' but I haven't had any kind of testing really, aside from the tilt table test. I had varicose veins in my legs from a very young age, but I don't think I could possibly have E.D.S or anything as I am not 'bendy' at all.

Anyway, I have a daughter who is 8 years old. Her feet turn purply/red whenever she stands. Also her hands - but to a lesser extent.

When she was sick a couple of months ago it got even worse though - her feet went bubble-gum purple, and when 'pressure' went on parts of her legs as she was having a cool shower, the part where the pressure had been turned yellow - and wouldn't shift. I almost called the ambulance right then & there, but we took her to the local accident & medical clinic instead and whilst there her feet stayed purple - even when laying down on the bed at the doctor. It was horrible to see. I kept rubbing her feet & legs to try and change the colour back.

Anyway, it is summer here now. I found out my daughter has been yelled at at school for not standing playing outfield during sport in the hot sun. She says her body makes her sit down, and she's desperate for water. The teacher has forced her to stand up and not let her get any water on a few occasions.

This worries me as I remember when I was even younger than my daughter, I couldn't stand up still. She also struggles immensely to run in the cross country race and lead-up practises. I have *never* been able to run - though I went through a stage where I 'power walked' at least 3 hours/day. Walking was never a problem for me when I was younger. My daughter is also an extremely active girl and tending towards being underweight if anything - why can she not do these specific 'sporty' things?

So, today I checked her blood pressure & heart rate. These are the results of the 'test':

Sitting on the ground:

B.P 92/58

Heart Rate: 83

Standing 1 minute:

B.P 86/54

Heart Rate: 119 (+36 bpm from sitting)

Standing 4 minutes (feet well & truly purply/red):

B.P 93/61

Heart Rate: 130 (+47 bpm from sitting)

Sitting again after about 30 seconds (feet colour back to normal):

B.P 91/55

Heart Rate: 89 ( -41 bpm from standing about 30 seconds prior)

Technically, this constitutes P.O.T.S, right? Now, my daughter *is* very active which I am pleased about. However, I don't want her being forced to stand out in the glaring sun at school or running in the cross country if her body is telling her 'stop!!!'.

Has anybody else noticed the same things happening to their child as happened to them as a kid? It is beginning to dawn on me that I seem to have passed *something* down to my daughter - but I'm not 100% sure what it actually is. I don't know why I had symptoms from such a young age, and my health has only deteriorated over the years. Does this sound like normal 'P.O.T.S' to you? I don't know. I wonder if there's some kind of underlying cause I don't know about, which might have been passed down to my daughter.

I do have the P.O.T.S with 'adrenal' problems (attacks), which I read might be genetic somehow.

Anyway, do people here think I should talk to the doctor about my daughter - even though she seems to be having difficulties with just a couple of things at school? I guess I don't want to jump the gun or anything. Is it possible what's happening to my daughter is normal 'kid' stuff?

Thank you for any help/advice. I feel a bit sad about my daughter showing symptoms like this.

Take good care

[juliegee]

Hey Flower-

Your daughter clearly has POTS. I would definitely show the results of your unofficial TTT (tilt table test) to her doctor. Nine is a little young to be showing symptoms, but you say you showed symptoms at an early age as well. Has she recently gone through a growth spurt? Or, is she showing signs of early puberty? Those can set things off.

As a Mom, who ignored her own symptoms, and my son's-until it was impossible to ignore (almost life-threatening); I urge you to get her help now. By being proactive, you can hopefully begin treatment early & avoid unnecessary exacerbation of symptoms. At the very least, her doctor needs to write a note to her school, outlining her limitations.

Hard to say what's behind both of your symptoms. It's clearly genetic. MANY here have multiple family members affected.

I know it's sad to see her hurting, but it'd be even sadder if you didn't act to get her help. She's lucky to have a knowledgeable, proactive Mom, who "gets it" because you've lived with it yourself. In retrospect, I was so ignorant about all of this. I'd give anything to do it over and better with my child.

All the best-

Julie

[firewatcher]

Please!, go get her some medical help. I was yelled at by countless PE teachers to get my "lazy bu++ around that track!" and never could! I've had POTS symptoms for as long as I can remember (I remember symptoms clearly from age 6.) They may not be able to help her symptoms much, but KNOWING what you can and can't do is incredibly freeing. I blamed myself for my lack of "fitness" for many years and ended up damaging joints and many ligaments by pushing myself too hard. I know now what happens when I am standing in the sun or running or anything stressful...there are reasons for what I feel and it is not "in my head." I'm sorry she has to deal with this, I'm sorry that you do too, but there is no reason for her to suffer abuse.

[flower]

Hello Julie and firewatcher,

Thank you both very much for your responses.

In answer to your questions: My girl is 8 years old now. I myself had symptoms of OI from at least age 6. My daughter's feet have been turning purply/red for at least a couple of years now that I can remember - possibly it's gotten a bit worse but I'm not 100% sure on that.

My girl has not had any recent growth spurt (she's been the same height for about 4/5 months now, following a previous growth spurt) and she isn't showing any signs of early puberty at all. I think she's in about the 75th-80th percentile for height, and about the 30th percentile for weight based on her height - or something like that. She's not underweight but she's definitely nowhere near overweight, if you know what I mean.

I really feel for you Julie. I'm so sorry things got that bad for you and your son before the help arrived.

Because of what you've both written, I went ahead and made an appointment for my daughter to see the G.P in January. I will show the G.P the data from the 'test' I did here at home. I was worried about my girl freaking out because I've been terribly ill, and if she thought she had the same thing as me she might be distraught. When I did the 'test' on her she kinda figured out what I was doing though (she's pretty onto it!) so she started asking questions and I explained to her that we might need to go and see the doctor to get a note so she doesn't have to do things at school that make her feel very sick. She seems ok with that, so since she's alright and also because you both seem to think the data suggests she might have P.O.T.S - I will definitely try and get some help for my girl.

I think the note is very important because she will start the new school year at the beginning of February and it will still be summer. I don't want her being tortured or treated badly by the teachers during sport times if she can't do certain things. I was also treated *horribly* by teachers etc at school, firewatcher. They often acted like I wanted to skive off sport - though I was a very active girl in general, but some things I simply couldn't do. Gosh. Definitely don't want my daughter to go through that kind of situation throughout her school years.

I'll let you know what happens :-)

Take good care

[firewatcher]

Hopefully, her G.P. will be an understanding doc and do further testing. Don't let him/her tell you that you are overreacting! Don't back down and get another doctor if you have to do so. I wish I had known earlier than I did, many of my "life decisions" would have been different and I would not have spent years wondering "why can't I do this since everyone else can?" It could also save her from many years of misdiagnosis and possible mistreatment: I took steroids for years for asthma that I DID NOT have!

In the meantime, try the usual methods recommended for POTS patients (fluid and salt loading) and see if they help her. Good luck and keep us posted!

Answering your first question, my two sons (8 and 11) do not show signs of OI yet. I have done the home orthostatic testing on both and so far, so good. I suspect that my oldest may have some of my issues since he is prone to headaches and very "bendy," but only time will tell.

[flower]

Hello firewatcher,

I can really relate to some things you write. My mother was convinced I had asthma since I was a baby, but the doctors kept telling her I didn't have it - but when I was a toddler I was diagnosed with bad asthma (after an attack & being rushed to the hospital), and spent until I was 15 on a cocktail of medicines for the asthma... and continued to need the 2 inhalers throughout my adult life - until I was in hospital so much around the beginning of this year, and I kept being told by doctor after doctor 'You don't have asthma'. I couldn't believe it - and my breathing problems have been bad the past year. It's just not asthma, apparently. That said, the inhalers had stopped working for my breathing problems in the year before I became so ill, so I guess it's possible I *did* have asthma but it magically went into remission, only to be replaced by the P.O.T.S breathing difficulties. Either that, or because whenever I had an asthma attack when I was younger, I would sit down - maybe that was the real cure for the breathing difficulties, not the inhaler. When my P.O.T.S symptoms got so bad that I had them even laying flat, that might explain why the inhalers didn't 'work' any more.

My daughter said that when she was running for cross country practise, it felt like a 'gust of cold air' had rushed into her mouth, and she couldn't breathe properly. I *think* I know what she means by that.

I am very glad your sons don't show any signs of O.I at this stage firewatcher. My hope for you is that they grow to be strong and healthy, and that your older son's headaches & bendiness don't turn out to be indicative of anything more. Either way though, it sounds like you're very onto it, which is good for any child who might be struggling with a medical issue :-)

I will try my very best for my daughter - have no idea what the doctor might say, but I'll keep you posted. We'll be seeing the doc. before mid January. I have a couple of photos I will take to show the doc. as well (purply/red feet). Also, she can 'test' my girl in her office. I think it will be pretty obvious everything is not 100% working correctly in my daughter's body.

Take good care!

[Sarah4444]

I just wanted to add that I think I have had steadily worsening orthostatic intolerance pretty much my whole life. I have a connective tissue disorder but am not obviously bendy like many with EDS - my hypermobile joints are my ankles, shoulders, spine (not the ones tested by the standard scale used to diagnose EDS by most geneticists). I had to see a geneticist who sub-specializes in connective tissue disorders to be diagnosed. I don't know how it fits together, but I think that mast cell disorder has something to do with my symptoms arising so young and getting much worse over time. With a history of allergy-like symptoms, make sure you read about MCAD at www.tmsforacure.org.

I worry about both my kids, but my son seem to be unwell more frequently than my daughter. He has reflux, joint pain, trouble sleeping - I feel like he may also be slowing becoming more symptomatic but no local doctors know enough about any of my diagnoses to understand what I am talking about so I just watch and worry for now. As far as I can tell he isn't showing the 30 bpm increase (yet).

Please let us know what your doctor says, and I hope your daughter is doing well.

[crowebirds]

Flower-

I know exactly what you are going through. My daughter is currently 12 y/o. She has had the blue legs every since she was born. We kind of lost track of it, thinking it was nothing, for a few years. When she was 8, she began have symptoms of another disorder, however, the blue legs returned, or at least we started realizing that they were there again.

Every since TLC could stand and walk she complained of pain in her legs when she stood up. She too was very athletic (top of height chart and bottom of weight chart), surprisingly the pain did not affect her as much when she danced. She started dancing at 2 1/2 and because of the symptoms you describe she had to stop nine years later, mid year. During this time we found that she had a condition that caused her to break out and go into shock when she was too cold. Finding out the source of this condition became our main priority. The research I did was for GP's doing their own research. It told them to let the parents know that there was no known cause and nothing that could be done. Go home, avoid the cold, and move on. This one statement infuriated me. In other bits of research I found that some causes could be identified. I was determined to have every known cause tested and either rule them out or know the cause and begin treatment.

Well, everything has been tested and to date, no known cause. But, our research led us to find out that she had Dysautonomia. Most of my daughter's Autonomic Nervous System is affected. We told the doctors for years about her pain when standing. We told them about her high heart rate and low blood pressure. It wasn't until this last year when we reminded him for the umpteenth time that she did not sweat that he finally decided that she had two conditions, not just one. It was confirmed earlier this month and we are waiting on further testing. After he said that it could be Dysautonomia he sent us home with no further testing. I researched the name of the condition and decided to do my own "poor man's" Tilt Table Test. I was completly floored when her heart rate went through the roof upon standing. Her blood pressure is always low, but it did have fluctuations. We had to do her heart rate manually because it was too weak for the machines to record it.

We were also able to connect the blue legs with her standing up and when she got cold, but they were not there for the same reason. When standing, she would have blood pooling. Her heart could not keep the blood flowing up hill efficiently. This increased her heart rate. We also found that she had problems with breathing. She was put on inhalers which helped. We found out that she does not have asthma, but she did have problems with her lungs not being able to oxygenate the blood fast enough because of the blood pooling. The inhaler helped improve the body's ability to get oxygen direct to where it was needed.

Every time she went to physical education class, especially outside, she would get bad headaches and would complain about the leg pain. We were able to get an excuse from her doctor to keep her out of PE classes. She was smart so they put her into the lower grades to help tutor other kids during those time. Despite this, we still had a lot of problems from the PE teacher and other teachers harassing her about being lazy and not wanting to do anything. She is now in 7th grade, in a wheelchair, which she loves, and has a school full of teachers that are supportive. The wheelchair, that it embarrasses her a little bit, she is much happier because she does not have to deal with the leg pain and she is able to be involved with her class mates in various activities. Her PE class allows her to do her own exercises and stretching. She gets to work out on the floor and for short periods of time. It was a very difficult decision to accept our daughter as being handicapped and needing a wheelchair, but we now wish that we would have done it years ago. She would not have missed out on so much.

Go ahead and get her the appointments she needs. Don't let anyone convince you that your daughter has nothing wrong with her. When one doctor can't give you the answers you need, move on and find another one. Her daughter has what is labeled as a rare condition, but I am finding that is not so rare. Educate the administrators of her school, the teachers, and help her learn to communicate with others her age that don't understand what she is going through. Ask the school to help your daughter in what ever way she needs it. We have programs in the US where the schools have to help our children. I am assuming that you are from Australia. There are others on the board here from Australia who may be able to help you in that department.

My prayers are with you and your daughter as you take this journey in life.