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Any Families Out There With A Parent And Child With Pots?


Dusty
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I was diagnosed with POTS in 2008 but my doctor thinks I probably had it since 1996. I seemed to develop it after getting the flu. My 7 year old daughter, who has sensory integration disorder, is now showing symptoms of POTS. I'm getting ready to have her tested. She misses school at least once a week due to tiredness, leg pain and poor immune system. Her sitting heart rate is 57, standing is between 97-120.

When I initially started researching POTS I remember reading something about there being a possible genetic link between mothers and their children, particularly with daughters. Do any of you have POTS and your child?

I'm also curious how young some of the children are because most seem to be in their teens. Seven seems very young. Do the young children tend to improve or have it for long term? Any help would be great. Having two people in one family with POTS seems unreal and hard to get my head around. I'm starting to research other disorders that may have the same symptoms. I'm curious because she is able to put her head below her heart and can spin around, both of which makes me sick.

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I haven't been formally diagnosed with POTS, but I've been told I probably have some form of dysautonomia, and it seems POTS is a likely candidate (I am also going to be evaluated for mitochondrial disease next month). My mother has multiple sclerosis, but I have been thinking about it, and she seems to have possibly had some autonomic involvement over the years as well, having major issues with tachycardia and a period of time where she seems to have dealt with severe gastroparesis.

My two brothers have never shown major signs of dysautonomia, though they both have had gastroparesis (theirs has come and gone, while my gastroparesis has largely been always present). They have both been diagnosed with Crohn's disease (like my father), so we always sort of equated their gastroparesis with that.

We're just one big happy diseased family, I guess, lol. :P

Good luck with your daughter...I have been dealing with symptoms since I was about 12, and I know it can be tough to be sick when you're a kid.

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Hi Dusty-

Sorry both you and your daughter are dealing with this. Seven does seem young for symptoms to start. Dysautonomia (from multiple causes) certainly seems to be familial. I have it, as does my son (symptoms started at 12 y/o), my brothers, my mother, and my maternal grandmother.

It's hard to give your daughter a prognosis. Hpw functional are you? THAT may be the best indicator. My son is able to attend school full-time, but he takes many medications and functions at about 60% of "normal."

I am intrigued by your daughters DX of SID. I am finding a link between various disorders on the autism spectrum, misbehaving mast cells, and autonomic dysfunctions.... I think I need to start a new thread to explore that :rolleyes: .

Welcome! We've learned a lot here & have gotten wonderful support.

Julie

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I was diagnosed with POTS in 2008 but my doctor thinks I probably had it since 1996. I seemed to develop it after getting the flu. My 7 year old daughter, who has sensory integration disorder, is now showing symptoms of POTS. I'm getting ready to have her tested. She misses school at least once a week due to tiredness, leg pain and poor immune system. Her sitting heart rate is 57, standing is between 97-120.

When I initially started researching POTS I remember reading something about there being a possible genetic link between mothers and their children, particularly with daughters. Do any of you have POTS and your child?

I'm also curious how young some of the children are because most seem to be in their teens. Seven seems very young. Do the young children tend to improve or have it for long term? Any help would be great. Having two people in one family with POTS seems unreal and hard to get my head around. I'm starting to research other disorders that may have the same symptoms. I'm curious because she is able to put her head below her heart and can spin around, both of which makes me sick.

Hi Dusty,

My daughter diagnosed at almost 13 actually started with symptoms at age 9 or 10. Her specialist also mentioned that there is a strong genetic link, and to watch my younger daughter for symptoms. He said that the parent doesn't even have to show signs of POTS, but if the parent has other related things going on like migraines, irritable bowel syndrome, etc--that there is a connection to POTS that way.

Dawn

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i had symptoms looking back at around the age of 9. then again at 13.

my sister certainly had pots symptoms when she had her child at the age of 32 but they put it down to anxiety.

the same age i got poorly, and was diagnosed two years later with pots. im pretty sure i have eds, so does my neuro think this. taking into account family members, there are alot of bendy family members. just something we realised.

xxxx

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I have POTS and a cousin (maternal side) was just diagnosed. She's in her early 20s. We aren't close (different states growing up and such and she didn't know I had it!) My sister is showing signs (we know it's just not anxiety - I did the poor man tilt on her over the holidays with my heart monitor...sit for a few (HR 80s) stand up for a couple minutes (HR 120+). She said she'd noticed the racing heart, fatigue, etc. Similar to me. My brother also has some symptoms like vertigo and feeling off. I think my mother has had symptoms on and off but ignores them. My mother, sister and I have had sleeping issues for a long time.

Wish they could find out what triggers this, especially if it is genetic, so we can get better treatment.

I think I'm like Mack Mom's son...on meds probably 60% functional. But not without my meds! Of course there are worse and better days, but taking an average.

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Hello ..................well the doctors seem to think I've had POTS since I was 13 years old , that's almost 41years as from tomorrow at 10:32 am !!!!!

and my 18 year and 11 month old son has had it slowly but surly creeping up on him since he was a sweet blonde haired boy of just 4 years old ., Mikes still of college as they have now discovered his heart is racing at 200 bpm each night when he goes to sleep, which is why he's so tired every single day . Me my heart beats at 35 bpm , all night which is why I'm so tired every day ..... :blink: so me thinks if we had half of each of our hearts we'd be quite normal , mmmmmmmmmm mind you hubby here is of the thinking I'll never be normal :o

So in all I've had over 59 years and 11 months of full on ....chuck it at me .....I'm ready for what you can throw ................ mind blowing , brain numbing experiences in POTS ....................why me ??? why us?? a question my son and I ask ourselves at least twice a week and get no answer .

Ami & Mike ..................still biting the ankles of the world ....snap....snap.

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My mom and I both have idiopathic small fiber neuropathy, which is what has caused my POTS. I developed it at 32 years of age, and she was in her mid-50's. She also has carcinoid syndrome, and the Mayo doctor said she also would meet the criteria for POTS except that she is on such high doses of octreotide. I don't have carcinoid syndrome, however.

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My mother has told me "I've had one of those really bad racing heart days again, I'm so exhausted." :blink:

I wish she'd go to a doctor, but she won't. I wonder...if POTS is triggered by a virus, then why is there such a strong genetic component for a lot of us? Could a virus trigger it if it's genetic...like more susceptible to POTS, get some type of virus, POTS goes wild? I wonder if there's a chance of healing still.

I'm so frustrated about this now that I've found it for sure in other family members on the maternal side.

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My theory with genetics is a balance of nature and nurture... that genetics can make someone more suceptible to an illness (except in the case of say, Down's Syndrome and other disorders like that) much of the time, but environmental and other outside forces can cause it to "activate" or, if it's a mild case, become much, much worse. I had POTS symptoms even before both of my knee surgeries, the first being Dec of 2008, but they weren't nearly as bad as they are now. Now, if I hadn't had the knee surgery, there is a possibility that my POTS wouldn't have worsened, but who knows, I might have caught a virus or some other illness that would have triggered it just the same.

My mother doesn't have POTS (at least a diagnosed case of POTS), but she has symptoms of fibromyalgia and CFS. She isn't hyperflexable at all (I suspect that I have EDS), but I recall that my maternal grandmother was, and my half-brother's (we share the same mom) daughter does have some hyperflexability and complains of knee and ankle pain without having any visable injury. She's pretty active kid, so I don't think that she has POTS either (at least yet), but since she's just 9 (almost 10), I'll keep an eye on her in case she starts developing symptoms.

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I have had pots since I was a teenager even though it wasn't diagnosed until I was in my late 40's. One of my daughters developed pots when she was in 8th grade. I believe it is genetics but like Erika said it could be a combination of genetic and environment. My daughter developed pots the same year mine went severe. No idea what the environmental factor could have been; my thought was Lyme disease but both have been negative on our tests. Of course they will only give us the simple test.

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I have EDS and POTS. I have three daughters and one is completely healthy, one has EDS and POTS for sure and one is severely handicapped. She might have EDS and POTS but it's hard to really test her. My youngest daughter is the one with confirmed EDS and POTS and she started showing signs in high school with the POTS and elementary school with the EDS. But we didn't know anything about EDS so she didn't get diagnosed until she was 17.

I think there is definitely a genetic component.

Babette

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Hello,

My son and I both have POTS. He first showed symptoms at the age of 9. He was diagnosed at 12. I was diagnosed at 41 (when he was 11). We saw a geneticist last year and found that we both have POTS secondary to EDS type III. I think my two other boys also have some symptoms- hypermobility, heat intolerance, a little occasional orthostatic intolerance, etc... but they don't have the tachycardia or digestive symptoms that my son and I have.

My son is now 16 and has improved quite a bit this year. He does not take medication. I am very well controlled on a low dose beta blocker. I know that I was reluctant to have my son tested once I was diagnosed and made the connection that we were actually having the same symptoms. It ended up being a really simple dx and my doctor informed me that he treated many mother and child patients and that it was very common to pass it on from one generation to the next. As EDS III is genetic, that makes perfect sense.

Best wishes to you and your child!

Carolyn

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Hi,

My son and I both have Pots. I believe I have had mine since I was a child. My son was diagnosed as a Freshman in high school. He is now 19 and symptoms are getting better. My teenage daughter hasn't been diagnosed but has had several 'episodes' where she feels sick, gets hot, flushed, heart pounds, ears ring and she faints. So who knows??

Jane

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My son was just diagnosed last month with POTS and I was diagnosed almost 2 years ago. My son's Dr. said that it is 90% of the time hereditary. I take a low dose beta-blocker and my son takes Florinef. My POTS is pretty controlled. I would guess that I function at about 75%. My son is still new to this, but we are told that his symptoms will definetly get better as he gets older and should be mostly back to normal by his early 20's. I noticed symptoms in my son for well over a year before he complained of feeling bad.

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