Two Kids With Pots

[Deana]

I have three children. The oldest was diagnosed with POTS at age 18, after finally going to the Mayo Clinic as a last resort. She'd been sick for several years and had seen many specialists who all said it was in her head. My middle child has symptoms which indicate possible lupus but her rheumotologist doesn't want to label her yet. And now, my youngest, at 15 has been diagnosed with POTS, too. He's followed a path very similar to his older sister's except that this time we knew what doctors to see so he hasn't had as long a journey to diagnosis as his sister. Is there anyone else who's dealing with several children with chronic health issues? Sometimes it's so overwhelming. The oldest two are in college but sometimes still need help and I'm glad I can be there for them but I'm sad that they are all being cheated out of "normal" teenage years and activities.

[MomtoGiuliana]

Welcome to the forum. I am so sorry you are facing such challenges and frustrations.

The good news for your kids is that young people tend to be more likely to recover from POTS--as you may already be aware. Hopefully they have treatment that is helping them now that they are finally diagnosed.

It does seem to run in families--my sister and I both have POTS--onset as adults, so probably different from what your children have.

[Ernie]

Hi,

My sister has fourn children and they all have POTS and NCS. My brother has 3 children and they all have POTS and NCS. My other sibblings who only have one child, the child has the disorders. It is quite tragic in my family.

[Megan]

Hi Mom.

Meg

[Deana]

Hi Meg.

[flop]

Wow - how cool to be able to say hi to your family on the forum. My Mum doesn't know how to turn a computer on so I doubt I'll get to say hello to her on here anytime soon. I think it is great that parents (and other relatives and friends) can come here to find out and ask questions about dysautonomia - welcome to the board everyone!

Flop

[DADofPotsSon]

momofPOTSkid

Now you got me thinking!

Lets see, My Dad has Orthostatic Hypotension, and has had a dozen or so Syncope events in his life, and he is now 80 yrs old, he is child 4 of 5 and no other sibling had any other problems like this, though he had a sister who had severe MVP and she made it to age 90.

I am child 1 of 5, age 55 yrs and have on occasions have tachy arrhythmia and two occasions of syncope when young and a younger brother 4 of 5 age 48, who has the same problems with tachy arrhtyhmia, no other siblings have these problems.

Now my children, daughter 1 has MVP and Tachy arrhtyhmia, son 1 who is like my father has orthostatic hypotension, and the son2 who has NCS/POTS. (I believe also attends the same university as Meg, so they have two students with POTS.)

Dads motto in life has always been "take your time getting up but walk fast to make up the time" I still can't keep up with him.

My dad has 14 grandchildren, and only my 3 children seem to have problems like Othostatic Hypotension, MVP, NCS/POTS, the most interesting thing I have found that dad's paternal grandmother has listed on her death certificate "life long MVP" and "arrhtyhmia's"

I think genes play an important roll in our life, good and bad.

DADofPotsSon

[Tammy]

I'm definite this is a genetic thing for me, however, it didn't show up for me until I was in my late 20's. I always was more tired than my friends and needed naps all through my school years, but I was able to go to school and work part-time and on weekends, I'd hang with my friends, so I never saw it coming. It took exhaustion and a nasty virus to get the whole thing rolling. Now that I understand it's genetics, I'm so happy we have our daughter who is not biologically ours, so hopefully she won't have to suffer everyday with this awful illness like I do.... I hate being homebound and so weak, but at least my body was to sick to reproduce and continue this genetic flaw I'm so thankful we live in a day in age where we can learn about genetics and make family reproduction decision based on that... why anyone would risk passing this on to a child is beyond me??????

[sarct]

why anyone would risk passing this on to a child is beyond me??????

Yes my life is harder, but I am still happy to have been born. Just because my life isn't "normal" doesn't mean it isn't worth living. I don''t regret my parents making me. And if my children turn out to have pots I will not regret my decision to have them.

[vemee]

I have 3 girls also, two in college and showing no signs of pots that I know. My youngest is a high school senior and suffers from extreme fatigue. She has had pots symptoms for several years but now that she is 18 we can pursue the matter more aggressively in that she can use the same doctors I have who are somewhat familiar with pots. She has seen me lose my job and go on disability because of pots and is afraid that she will not have a chance to experience life. Looking back I can say I had pots since I was a teen but it was not unmanageable until I turned 50. My biggest complaints were fatigue and most of all brain fog. I try to cheer her up by telling her that if she does have it she can plan a vocation that is more pots friendly than one where you are standing all day. Of course that is much of comfort. I hope if she has pots the treatments will help but I am afraid if it is the same type of pots as I have it is hyperandrenergic and none of the usual treatments will work.